The My Wife Has Cancer Blog

Adieu

2010-04-25T08:00:00.000-07:00

In my eighth grade year I played Captain von Trapp in our school's version of the play The Sound of Music. Near the end of the play, just before they escape Nazi Austria, the Trapp Family children sing "So Long, Farewell." It's a long goodbye.

This blog was about my experience as the spouse of someone with cancer. Sue was diagnosed with multiple myeloma on May 1, 2009, and she died of complications from the cancer on March 29, 2010. Sue's eleven-month struggle with multiple myeloma was, it turns out, a form of long goodbye. My blog might have ended in March when Sue died, but I have been doing my own version of a long goodbye. To my way of thinking, some things relevant to the cancer experience of the non-cancer spouse have happened in the month since Sue died.

It seems that people who live through wars experience the horrors of war, but also often look back on the war years fondly. I'm not sure why that is, but I think it must be, in part, because such experiences are intense, and a lot of memorable living gets packed into a little time. During the Battle of Fredericksburg in December of 1862, Robert E. Lee said: "It is well that war is terrible - otherwise we would grow too fond of it." In some sense this past year with Sue's cancer was a little bit like that; It was terrible, and I wouldn't wish it on anybody; But at the same time it was intense, some of it was good, and a lot of living got packed into a short window of time.

I've enjoyed blogging this experience. It's been better than having a psychotherapist, and cheaper. I've appreciated your comments and prayers more than I can say. I've appreciated being community with you, and you being community with Sue and me. But as Harrison Ford told Gene Hackman in the movie "Witness," "It's over! It's over!"

There are a lot of ways to say goodbye. So long, farewell, aufwiedersehn, and audieu, among them. But adieu best expresses my sentiments here. Here, I bid you adieu in both the fond farewell sense, and the permanent farewell sense. But also, I bid you adieu in the sense that the French used to use it: "Adieu vous commant." [From the latin "ad" (to) and "deus" (God).] I commend you to God. (See www.answers.com/topic/adieu)

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Anyone who cares to correspond with me is welcome to try, provided you understand the rules. Sometimes I'm slow to respond. Sometimes I don't respond. I'm mostly retired from active law practice, so I'm not soliciting legal business, nor will I be likely to accept it. If you correspond with legal questions your correspondence to me will be protected by attorney-client privilege, and I will protect your confidences. But merely corresponding to me with your legal questions will not obligate me to respond, nor will it create the kind of attorney-client relationship where I am under any obligation to respond to you or to advise you or to protect your legal interests. Such a relationship would require a written agreement between us signed by both of us.

With that disclaimer, the author of this blog, George E. Harper, can be reached by email at: thefisher@comcast.net for general correspondence, or at lawbygeorge@comcast.net for legal correspondence.

Also, I did start another blog last November, the first time I thought I was through with this blog. The subject matters of my new blog are more scattershot and less compelling. Still, if you are interested my new blog can be found at www.thefishersline.blogspot.com.

Thank you again. And again, adieu.

Practical and Legal Advice - Part III

2010-04-23T08:00:00.000-07:00

5. Go Slow; Don't Make Any Major Decisions Too Quickly.

It rained hard today in our part of California, the central San Joaquin Valley. Notwithstanding what you non-Californian readers may think, California has an agriculture-based economy, and the San Joaquin Valley is the heart of California farm country. The center and east side of the Valley is mostly tree fruits and vineyards, and the west side of the Valley is mostly row crops; vegetables, cotton, alfalfa. (Northern California is where they grow California's largest cash crop -- marijuana.)

Tree fruit farmers and vineyard farmers generally have no pressing business outside on a rainy day. But the west side of the valley was abuzz today with farming activity. Those guys out there on the west side know the true meaning of farm-born expressions like "make hay while the sun shines." Except the sun wasn't shining today. The lettuce harvest was on today, and large crews of mostly hispanic farm workers and heavy machinery were out in the muddy fields, braving the pouring rain and hand-harvesting truckloads of the delicate green lettuce heads. On a dry day the paved roads on the west side of the Valley are brown with dust from the tractors and trucks coming out of the fields onto the pavement. On a wet day like today the paved roads are mudddy and slick; great lumpy trails of mud are tracked out of the rain-soaked fields on the wheels of the tractors and harvesters and trucks that facilitate the dirty work of feeding us.

These west-side farmers and farm workers know what it means to get dirty. Their trucks are so mud-splattered you sometimes can't even tell what color they are. Workers come into west-side restaurants and businesses with mud-caked boots and clothes. And the fields and dirt field roads are a muddy, rutted mess.

I drove from the east side of the Valley today to my property management company's new office in the west-side town of Coalinga. The muddy roads, and especially the ruts in the dirt roads of the west-side fields, reminded me of a story told by Tom Bodett on one of his read-by-the-author books on tape. Bodett is a great American story-teller. He mostly tells stories of Alaska, and in this vignette tells about how the roads in Alaska are mostly dirt roads, and how in the rainy season and again in spring when the roads thaw, the roads get wet and the cars make ruts in the road, and when the ruts get too deep another set of ruts will start up, and so on, until you have multiple sets of deep ruts in the road. Then, in the summer the ruts dry hard, and in the winter the ruts freeze up, and, because it's usually quite a long way between towns and places in Alaska, quite often when you are leaving a town on a dirt road you will see a sign that says "choose your ruts carefully, you're going to be in them for a while."

Bodett tells his "choose your ruts carefully" anectdote as a metaphor for making life choices. It's good advice for different stages of life: Sue and I have given this advice to our young-adult daughters in regard to choosing careers and life partners. I use it here to illustrate advice I have read in almost every informational publication on widowhood and grieving: "Common sense tells you to postpone making any permanent changes for a while." (from "Going On ... A Pathway Through Sorrow, by Jane Woods Shoemaker) and "During this time (of grieving) discourage yourself from making any critical decisions; such as selling your house or moving to another community." (from Toward an Understanding of the 'Going Crazy' Syndrome, Part I, author unknown, sent to me by Saint Agnes Hospice) The gist of the idea is that grieving muddies-up your ability to think rationally, and if you're not careful you may get yourself stuck in a bad set of ruts that you don't want to be in and that are hard to get out of.

In regard to new relationships, the Pathway Through Sorrow booklet says this: "A cautionary thought: It can be difficult to resist getting caught up in a new relationship because of the intense need to end your loneliness. Consider the fact that 52% of widowed men remarry within 18 months of their wife's death. It is estimated that, of those remarriages, over half end in divorce or abandonment." On the other hand, that divorce rate sounds like the divorce rate in the general population, so what's different? If you want to get into a new relationship, I say go for it. Life is short.

So generally, the advice of the experts (I don't claim to be an expert on this subject) is to go slow and don't make any major decisions too quickly.

6. Keep Working; Stay Active.

Even if you don't need the money, the grieving experts (this grief-counseling field is a specialty area for many counselors and authors) say it is advisable to keep working and stay invoved with the activities and people who you were involved with prior to your spouse's death. The world is still turning, and you need to turn with it. Isolation is not a good thing.

This advice notwithstanding, I mostly avoid people I know and I especially avoid wading into crowds of people who might all want to express their condolences. For a couple of Sundays after Sue died I arrived at Church late and left when the final song started so I could avoid talking to people. That's just me. Sue would have done the opposite. I have really appreciate all the condolence cards, though.

7. Bankruptcy Is An Option.

Sometimes when a spouse dies the survivor is left with a financial windfall, and sometimes the survivor is financially devastated. A typical scenario when a spouse dies without life insurance, particularly when the deceased spouse was employed and making a significant contribution to the income of the household, is that the household no longer has sufficient income to meet its debt obligations and monthly living expenses. This is particularly true where the deceased spouse saddled the surviving spouse with enormous medical bills. (Sue's medical bills ran well over a million dollars in a ten-month period!) In these cases it is sometimes necessary to jettison debt or at least to do a debt restructuring. Bankruptcy should be considered.

Many bankrupcty lawyers will do a free initial consultation. Even in cases where life insurance is in place, but the insurance is not going to be enough to sustain the pre-death lifestyle, debt restructuring is sometimes necessary. If you are uncomfortable with filing a bankruptcy, most creditors will negotiate a debt down rather than take a complete loss in a bankruptcy if that is your only other option. Almost all credit card companies will restructure debt, forgive some of the debt balance, and stop interest charges on learning that a spouse has died and bankruptcy is being considered. For distressed borrowers, allmost all major credit card companies will negotiate down to 35% of the original principal amount owed, and allow payment of that amount without interest, if you can pay that reduced balance within three months.

It is better to make inquiries about bankruptcy or debt restructuring early rather than to bleed down all your cash and then realize you shouldn't have paid some of the bills you paid.

One final thought on this subject. If you know you are dying and you haven't died yet, and you know your survivors are going to have to deal with debt problems after your death, it is possible to structure estate assets, estate gifts and life insurance pay-outs in what we refer to as "spend-thrift" trusts. These are trusts which hold assets for the trust beneficiary and which protect the beneficiary from recklessly spending the assets, but which also protect the assets from creditor claims. If you think that debts and debt restructuring are going to be issues, the earlier you get in for a legal consultation the more options are available to you.

8. Charity and the Welfare Safety Net.

If you haven't been raised with a welfare mindset, you may not even think about going down to the local welfare office and seeing what financial and practical help is available to you. I have been surprised over the years at the number of people who came to see me for legal advice and who clearly qualified for welfare assistance, but who had never even called the welfare office. You also may be embarrassed to ask for help from your local church and local non-profit social service agencies. But if you can not make financial ends meet after your spouse dies, you should at least consider making an appointment at the local welfare office and, at least inquiring what benefits, if any, you may qualify to receive. What harm is there in having the information?

Help is especially available to families with dependent children under the age of 22. In fact dependent children under the age of 22 also have their own claim to social security survivor's benefits, and can receive monthly social security payments.

You should also consider making an appointment with the pastor (priest, rabbi, imam) of your church (or, if you don't have a church, a local church of a friend or acquaintance) and/or local social service agencies and, if you can't ask for help, at least tell the pastor (priest, rabbi, imam) or agency worker what your needs are. A surprising number of people may be willing to help you if they know you need help. But people can't help you if they don't know what you need.

God probably knows what your needs are or will be before you do. But in my experience God tends to work through people in terms of meeting the needs of the needy; And those people through whom God works may not know what you need unless you tell someone. That applies both to physical needs as well as emotional and spiritual needs.

This last thought reminds me of the one about the man who prayed every day to God to help him win the lottery. Finally one day God responded to the man and told him it would be helpful to his case if he would at least buy a lottery ticket. I mention this only to illustrate that even getting God's intervention in your life may require something from you. However, it would not be my advice to you to buy lottery tickets to solve your financial problems.

Dead Woman Talking

2010-04-21T08:00:00.000-07:00

Caution: If you don't believe in twilight zone experiences, and communication from the dead, don't read this post. I've debated with myself for four days whether to share this or not; finally I've decided that I will.

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The recent road-trip I took with Sue's cousin Bruce, interim-minister Bruce, was a powerful time of healing and reflection. Bruce was a good sounding board, skilled at listening and asking the right questions, giving meaningful feedback, and also interested in the subject matter of many of our conversations, i.e. his late close cousin and my late wife, Sue.

The trip to Yosemite was Bruce's idea. He'd been there 20 years ago and was awed, and he wanted to go there again. It turned out to be a good idea.

We who live in Fresno, California, live practically in the morning shadow of three national parks: Kings Canyon National Park; Sequoia National Park; and Yosemite National Park. They're all worth seeing, of course, but Yosemite is the crown jewel. Over a thirty year time period Sue and I had been to Yosemite dozens of times. We went there often, in part because every out-of-state guest we ever hosted wanted to go there, in part because we just liked going there, and in recent years in part because we'd discovered and were exploring the eastern side of the Sierra Nevada's, over near Mammoth Mountain, and in the summer traversing Tioga Pass is the best way to pass between the western and the eastern Sierra Nevada Mountains (that is, if you go by car). Tioga Pass is part of Yosemite National Park, and it is as scenic as any road on Earth.

My emotions were raw the two days Bruce and I spent in Yosemite. I was internally processing questions about moving on. Questions like, can I get rid of some of Sue's things without feeling guilty? She hated it when I would even move her stuff; God save me if I ever got rid of any of it. Some of the questions were more difficult, especially for a monogamous widower. Thirty years of marital fidelity takes a certain kind of emotional and spiritual discipline and a lot of commitment and hard work. That kind of life training isn't easily undone. How could I ever move on to another relationship without feeling guilty? How long should I wear my ring? Stuff like that.

Bruce and I spent Thursday hiking to several spots in and around Yosemite Valley, talking intermittently about various subjects of interest, among them Sue. After we checked in to our room we hiked from the Ahwahnee along the canyon rim trail to the lower Yosemite Falls observation area and back. We had six-o-clock dinner reservations (the only other option was nine, but Bruce was still operating on east coast time and that wasn't a good option).

The dining room at the Ahwahnee is a cavernous lodge of heavy timber and granite and glass, elegantly appointed, as all the Ahwahnee is, with art and architecture evoking Native American designs. We were seated at a small table next to a south-facing window. The window was wider than our table and easily 20 feet high, and we had a wonderful evening view of the south rim of Yosemite Valley. An accomplished pianist was playing familiar but oddly syncopated tunes on one of the Ahwahnee's three Steinway pianos. Bruce ordered Sea Bass, which seemed like a curious choice to me in that mountain environment. I ordered Moroccan lamb. I spent the better part of a month in Morocco as part of a six-month travel adventure the year before I proposed to Sue. I like Moroccan food, but I ordered lamb because I recalled reading that John Muir hated the sheep he used to tend in Yosemite, and that he believed they were destroying that sacred place. So it seemed appropriate to eat some lamb.

After we ordered, Bruce excused himself to call Beverly, and I was left alone for a few moments with my thoughts. I had the compelling thought that I should be sharing this experience with Sue. And I sipped my cabernet, looked out at the canyon, and stiffled a great sorrow tinged with guilt.

The dinner was excellent. We went whole hog with salad, main course, dessert and coffee. We'd intended to kill some time and then go to a movie at the visitor center, but we were both tired and changed our mind. We stayed in the room and retired early.

We'd left the curtains open on our huge picture window. It was a moonless night with the kind of night sky only seen in the mountains or places like Montana. We had a nice view of lower Yosemite Falls, and I could see the gleaming white stream of water cascading over the cliffs even in the starlight. I slept about four hours from around 9 p.m. to 2 a.m. and then awoke and couldn't sleep. I was awake until almost 4 a.m., thinking and watching the night sky and the waterfall. Then I fell back to sleep, and had two vivid dreams.

All healthy people dream. I do dream, and occasionally I can recall my dreams. But I've never had two back-to-back vivid dreams that I could recall so clearly as this.

In the first dream I was at a resort or hotel of some kind in the middle of the day, and I was standing outside a room with a screen door. The inside door was not closed, and the screen door was not locked. It wasn't my room, but I was curious to go inside and look around. I opened the screen door and walked into the room. It was a large but unremarkable room with two twin beds on the wall to the right of the room. Both beds were made up, with light yellow bedspreads, but the bed on the right had a slightly lumpy appearance. I walked over to check it out, and when I tried to smooth the lumps out a body in the bed started to stir. I had a moment of panic when I realized someone was in there, and decided I'd better get the heck out of there as quickly as I could, but before I could move the person pulled the bedspread down and sat up and looked at me. It was Sue in a full night gown but her face had an alabaster and bluish appearance, and it was clear to me that she was dead. But she looked right at me and in a calm but insistent voice she said "What are you doing here? You're not supposed to be here. Go away." And she laid back down and pulled the bedspread back up over her head.

In the second dream I was in the driveway of a house in an ordinary neighborhood that wasn't my neighborhood, and I didn't know who lived in the house. But there was an old van in the driveway that somehow I knew other people had been putting old junk into, and I was putting stuff I wanted to get rid of into the van. It was in the middle of the day, but I was feeling guilty about putting my stuff into someone else's van. I had this sense that what I was doing was wrong and and I wanted to finish up and get out of there before someone who lived in the neighborhood and who knew I wasn't supposed to be there came along and saw me. As I was almost finished putting my discards into the van a car pulled into the driveway on the other side of the street, and a woman got out. It was Sue. She waved and acknowledged me, but it was like the wave and greeting you might give someone you don't really know too well. She didn't seem concerned about what I was doing, and she spoke to me (I did not write down what she said when I woke up and I can't remember it exactly) saying words to the effect that it was o.k. for me to be there and to be doing what I was doing. Then she went into the house.

I woke up and pondered these shaman-like dreams. Was God sending me a message? Was Sue? Was my mind just working to resolve my own internal conflicts? Bruce woke up shortly afterward, at 5 a.m. (8 a.m. his usual time zone) and we discussed the dreams a bit. I have an idea what I think about them, but would be interested to hear what some of you think.

Practical and Legal Advice - Part II

2010-04-20T08:00:00.000-07:00

Today I got my first, and quite possibly last, social security check. The word "security" in social security is one of those glaring oxymorons for U.S. citizens approaching retirement age.

The check is the whopping $255 survivor's benefit I got as a result of Sue's passing. I'm sure I pay more than that into the system every month. However, the good news is that, at age 62, assuming I live that long and assuming I quit working and assuming I don't remarry by then, I may qualify for a monthly income, as a surviving spouse of Sue, in the approximate amount of $550 per month. That beats a sharp stick in the eye, but it's certainly not enough income to retire on, and comes nowhere close to giving a 62 year old surviving spouse a sense of security.

Practical and Legal Advice (PLA) Part II (today's blog) will explore the subjects of social security, disability insurance, life insurance and financial security, retirement income, health insurance, and what to do and what not to do before and after a spouse dies (and some of this discussion applies before and after anyone close to you dies). Sometimes it is necessary for this discussion to include the subjects of bankruptcy, welfare, and medicare/medicaid, so in my PLA Part III blog I will briefly touch on those topics, as well.

1.a. Life Insurance and Beneficiary Designations.

Once you are diagnosed with cancer, or any other serious disease or other medical conundrum, getting life insurance becomes more difficult, if not impossible. So I hope you had the good sense or good luck to purchase life insurance some time ago when you were still healthy and you thought you and your spouse would live forever. And I hope you had the good sense and tenacity to not cancel it or let it lapse. I had an associate and church friend who died at age 50 this past year. He had a massive heart attack. He'd been unemployed for a while, and, because of financial hardship, had let his life insurance lapse a few months before he died. Never never never let your life insurance lapse.

Some employers have life insurance for their employees which the employees and/or the surviving spouse may or may not know about. Be sure to check with your employer (or your spouse's) to see if that's the case. In my case my wife worked for a local school district, and they had a $50,000 life insurance policy on every teacher which was supplemental to the life insurance we had purchased.

Also, many businessmen who are in businesses with other people have buy-out agreements which require the business or the other partners/shareholders to buy out the decedent's ownership share on death. These buy-out agreements often require the business to carry life insurance on key owners (in the old days it was called "key-man" life insurance, but today I'm sure it's more p.c. to say "key person"). The life insurance proceeds typically are paid to the business, but the purpose of the insurance is so the business has the money to buy out the deceased owner; So the practical effect is the spouse of the deceased shareholder (or his/her heirs) get the money, and the other business owners get the business.

If I could advise those of you who can still buy insurance, particularly those under age 40, my advice would be to buy 15 or 20 year level term insurance that is convertible at any time to whole life insurance without a new qualification or approval. The insurance company will make you sign a beneficiary designation at the time you apply for insurance. That's the form that says who will get paid the life insurance when you die.

Beneficiary designations are extremely important. Let me advise you now, check all your beneficary designation forms for every insurance account, retirement account, bank account, etc. that you can possibly think of, and when you are done doing that, call and make appointments with your employer's human resources and benefits department(s) and make sure you know all the benefits available for disability, health insurance, and retirement (and life insurance if the employer has it) and be sure that you have signed all the forms necessary or advisable -- including all beneficiary designation forms. Retirement plans (disability plans)that pay money to a retired (disabled) employee and, on the death (disability) of the retired (disabled) employee will pay money to the surviving spouse or someone else, also have beneficiary designation forms. Lots of people never get around to signing them. Get them signed! Check and double check. This is important for those plans that have different pay-out options like: A. Pay all the money to me for as long as I live but then don't pay money to anyone else; or B. Pay me a little bit less every month for as long as I live, and then pay that amount, or a little less, to my surviving spouse for as long as he/she lives.

Sue's retirement/disability plan had five different options. She chose the 75% plan, which pays me, as her surviving spouse, 75% of what she was getting.

Remember: If you don't have a signed beneficiary form designating the person you want to get the money when you die, they probably won't get the money, or, if they do, they'll have to jump through extraordinary hoops to get it.

1.b. Life Insurance Pay Outs.

If a spouse just died and you need to collect the life insurance, start by calling the insurance company. Once they confirm that there is a policy in effect and you are the named beneficiary, they'll send you a claim form, and they'll tell you they will need a certified copy of the death certificate as well as a completed claim form. Some life insurance companies also require certified copies of marriage certificates. When they get those from you, they'll either send you a check or wire the money to your bank. Of course, they'll try to sell you their own investment accounts too, but just wait on that. (See section 5 below titled "Go Slow; Don't Make Any Major Decisions Too Quickly)

So you just got paid the big money. Now that you're rich, don't blow it. Seriously, don't spend it. You have to invest it and make it work for you. Spend the income, but try to avoid spending a bunch of the principal. Unless you are an experienced investor, please, please, please get some professional investment advice from a reputable financial planner or investment advisor. Widow/Widower fraud is a major concern. Be careful who you do business with.

2. Disability Insurance and SSDI.

If your cancer (or other illness) puts you in a situation of disability such that you can no longer work, check to see if your employer has disability insurance. California employees are usually covered by a state disability insurance plan. In the absence of employer coverage or self-insurance for disability, or state disability, -- actually in addition to those, you should call or visit the social security administration office nearest you and request to apply for social security disability (SSDI). In Sue's case, she had disability insurance through her employer's independent retirement plan administrator (State Teachers' Retirement Systems - STRS) that pays out like a retirement plan, where the payments were made to her for as long as she was disabled, and now the payments will be made to me in a lesser amount (we chose the 75% option) for as long as I live. Remember to submit an option beneficiary designation.

For more information about SSDI, go online to www.ssa.gov/pubs/index.html

3. Health Insurance, COBRA, and the Medicare/Medicaid Option.

Generally when you can't work anymore, you lose your company-paid health insurance benefits. For the self employed or self insured, and those whose companies don't carry health insurance, this is less of an issue; You've always paid your health insurance premiums anyway, so what's new? If you can't work anymore and you quit or are fired, you should be able to continue your health insurance through your company's health plan for up to 24 months under the Federal COBRA continuation of health benefits act, however, you will have to pay the premiums.

But if you do work for a company or employer that has benefits, get a copy of your company's benefits plan(s), including the health benefits plan booklet. I got a copy of all the several plan booklets from Sue's employer, and read them all. Also make an appointment to meet with the benefits people at your employer. They are a wealth of information, and if continuing health coverage becomes an issue, they should be able to tell you what your options are. I found the benefits people at Sue's employer very helpful and good to work with.

However, don't assume that even the most knowledgable benefits personnel will know everything that applies to you. In reading the plan booklets I was surprised to learn several things that even Sue's employer's benefits people did not know. For example I learned that "if you become totally disabled while insured" then the plan has a waiver of premium for the life insurance plan "for as long as the disabling condition continues." What that meant for me was that, even though Sue was going to stop working, her employer's life insurance premiums would be paid and the employer's $50,000 of life insurance would still be in effect for as long as she had cancer. When the doctors told Sue she had multiple myeloma, that was a disabling-condition life sentence.

If you are destitute and without health insurance, or if you qualify for Social Security Disability (SSDI) benefits, you will probably also qualify for Medicaid or Medicare. Medicaid used to be an automatic qualification for anyone granted SSDI but I am not sure if that's still the case.

4. Retirement Income and Social Security.

Whether and when you get survivor's benefits from your spouse's retirement or social security depends on several things, including: A. Whether there was a beneficiary option in the spouse's retirement plan and whether or not an option beneficiary form was completed and submitted; B. Your age, and your spouse's age, and whether the plan benefits had vested.

I recommend calling the employer and/or the employer's retirement plan administrator and the social security administration office directly, before this becomes a pressing issue, to ask about these questions. For more information about social security, go online to the social security information website at: www.ssa.gov/pubs/index.html

In regard to social security, I learned that, aside from the one-time survivor's pay-out of $255, I might qualify for additional monthly survivor's benefits (approximately $550/month) at age 60 if I stop working. Sue would have qualified for a significantly higher monthly benefit at age 60 if I was the decedent and she was the surviving spouse. That has to do with the amount of money contributed to the social security system; in our state teachers contribute to a teacher's retirement fund and are mostly exempt from social security withholding. Ask all these questions when you call or visit your social security administration office; But don't be intimidated if you don't think you know the right questions to ask, because they will ask you a lot of questions and, based on your responses, they should be able to tell you what benefits you qualify for now, and what benefits you might qualify for later.

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I intend to cover the following topics in PLA Part III:

5. Go Slow; Don't Make Any Major Decisions Too Quickly.

6. Keep Working; Stay Active.

7. Bankruptcy Is An Option.

8. Charity and the Welfare Safety Net.

Canto Della Terra (Song of the Earth)

2010-04-17T10:46:00.000-07:00

This week one of Sue's cousins from Massachusetts, Bruce MacLeod, came to visit. He had scheduled the visit shortly after he learned that Sue was going to come home to enter into hospice care. Bruce and Sue were both born in 1956, and had a special bond formed over years of coast-to-coast family visits. Bruce had hoped to have one final west-coast visit with Sue, but it was not to be. He kept his travel plans, nonetheless, and I took some time off and traveled about southern and central California with him.

This was something of a full circle visit. Sue and I had met up with Bruce in Colorado Springs, Colorado, in August of 1980, about 3 months before Sue and I got married. We were on a trip to visit some of Sue's relatives, including her mother's sister, Polly, who lived in Colorado Springs. Cousin Bruce is the son of Sue's mother's other sister, Nancy, and he met up with us in Colorado Springs at Polly and Bill's house. Following our visit with their Aunt Polly, Sue, Bruce and I had a series of little road trip adventures to places like Cripple Creek, Pike's Peak, and Kansas City.

Sue and I met up with Bruce on four other occasions in the intervening 30 years. In 1987 Sue and I attended the 100th annual reunion picnic of the Davidson clan near Worcester, Massachusetts. Davidson is the family name of Sue's grandmother who was Sue's mother's mother. Our daughter, Jessica, was six weeks old at the time. Bruce brought pictures to California showing tiny Jessica being held by the oldest Davidson at the reunion, a lady who was (as I recall it) ninety-some years old.

In 1986 Bruce came to California and Sue went camping with him up at Lake Tahoe. In 1990 Bruce came to California again, and, among other things, went to Yosemite National Park with Sue's dad, Don, who'd worked for several summers during college at Yosemite. Bruce shared the love Sue and I had for nature and the mountains.

In 1998 Sue and I planned another trip back to Massachusetts with our two pre-teen daughters, ostensibly to attend Bruce's wedding to his long-time love, Beverly. About a week before our departure we were notified the wedding was called off. Darn! We already had our tickets and our travel plans. What the heck? We went anyway, as did all the other relatives. It was a great time of family gathering.

Bruce is a United Church of Christ minister with masters and doctoral degrees in theology. He currently specializes in being an interim pastor to churches in transition. What that means is that Bruce helps churches through times of grieving for beloved pastors who've moved on, and helps them re-define their identity and ministry objectives, and then helps them move on to new things. Bruce and I have connected not only as related through Sue, but also as brothers in Christ who, like Sue, love the wilderness and who love to experience and ponder and marvel at the beauty and magnificence and grandeur of God's creation, and also as two intellectual wanderers who hold comfortably to the truths we know of God through experience, and who live comfortably with the unresolvable dichotomies and ambiguities that truthful seekers identify and acknowledge.

About two weeks before Bruce was scheduled to come out to California I emailed him to inform him of Sue's passing. Darn! But Bruce already had his tickets and his travel plans. What the heck? Bruce came out to California anyway, even though Sue had passed away, just as we kept our travel plans to Massachusetts after we learned that Bruce and Beverly's wedding had been canceled. Life is funny that way. But what I didn't know was that Bruce, the interim pastor, was coming to California on a different sort of interim ministry assignment; And quite possibly Bruce didn't know it either.

And so Bruce and I had a re-connecting California road trip. We didn't take Sue's ashes along with us, but she was with us in Spirit. Thursday, April 15, tax day, we drove to Yosemite to stay in the famed (and not inexpensive) Ahwahnee Hotel, which neither Bruce nor I would likely have booked for this trip except that Sue had instructed me in the week before she died that Bruce and I should extravagantly enjoy our time together compliments of her and her life insurance.

Thursday was a sunny day, blue skies with patchy clouds, about 65% F. As we came into Yosemite Valley along Highway 140 via Mariposa and the Merced River canyon, the foothills were still green from recent rains, and the wildflowers were beginning their resplendent spring bloom. And as we progressed up the Merced River to Yosemite, the famous granite canyon walls began to soar above us to the right and left, and, as had become Sue's and my custom on entering Yosemite Valley, or when driving it's incomparably scenic Tioga Pass road, we played soaring tenor opera music at 3/4 volume with the windows rolled down and the sun-roof rolled back. Bruce had selected Adrea Bocelli's Sogno C.D., and as we listened to Bocelli sing Canto Della Terra (Song of the Earth) in Italian, I thought of Sue, and the tears flowed and streaked my face below my sunglasses and whipped away in the brisk incoming road wind.

"Yes I know

My love, that you and me

Are together briefly

For just a few moments

In silence

As we look out of our windows

And listen

To the sky

And to a world

That's awakening ..."

"Look at this world

Turning around, with us

Even in the dark

Look at this world

Turning around, for us

Giving us hope, and some sun, sun, sun"

Bruce and I drove the few miles up to the tunnel view overlook for a fantastic mid-day view of Yosemite Valley from above, the familiar Half Dome gleaming and snow-capped in the distance and all the canyon rimmed with snow. We then visited Bridal Veil Falls, full-falling with fresh rain and snow melt, with the sunlight pouring through the mist created by a great wall of water falling a thousand feet and being dashed against granite boulders. The bruised water then collects itself in a roiling turmoil and moves on -- surging downhill to find a destination and purpose as-yet unknown to it.

And as Yosemite itself shed tears in streaks down its granite cheeks, Bruce and I moved on toward another destination and purpose as Bocelli and Celine Dion sang "The Prayer."

"I pray you'll be our eyes, and watch us where we go

And help us to be wise, in times when we don't know

Let this be our prayer, when we lose our way

Lead us to the place, guide us with your grace

To a place where we'll be safe."

Our room at the Ahwahnee had a fantastic view of Yosemite Falls. And for two days Bruce and I became like the Ahwahneechi Indians who once lived in Yosemite Valley, and we listened to the Song of the Earth as we trekked around in what John Muir described as God's most beautiful Cathedral; And we enjoyed the succulent bounty of the Earth as much as Solomon ever did; And we rested under the watchful stars and the eyes of God, and, perhaps, those of Sue, as we each sought something, as-yet unknown to us, which would be our next destination and purpose.

...

As I dropped Bruce off at the airport this afternoon I was glad for the time we'd shared. But driving away I had the sense that we were like two snowflakes who'd just drifted down and landed briefly, side-by-side, at the very peak of the continental divide along the spine of the Rocky Mountains west of Colorado Springs. And Bruce had fallen just next to me on the eastern edge of the watershed, and I had fallen on the western slope. And though we'd fallen close enough to touch each other, as we melted and resumed our journeys, he coursed eastward and I coursed westward, and once again we became different voices of the great Canto Della Terra. And I wondered if we'd ever meet again.

Practical and Legal Advice - Part I

2010-04-14T08:56:00.000-07:00

We learned a lot from our journey through multiple myeloma. We knew absolutely nothing about multiple myeloma as of April 30, 2009. Now, not quite a year later, we know an awful lot about this awful cancer. We got thrown head-first into the world of multiple myeloma on May 1, 2009, and now we know a lot of things we never wanted to know, and a lot of things we wished we had known sooner. Our knowledge is based on personal experiences and hundreds of hours of research and information from doctors and conferences we attended and from talking to many myeloma brothers and sisters and from reading your blogs. I am leaning toward writing a book based on the best of these blog entries, incorporating some of the most current multiple myeloma information, and incorporating my perspectives as a lawyer, as a spouse and care-giver, and as a multiple myeloma widower.

Some may find this information and its presentation a little fatalistic. I am a hopeful person. When Sue was diagnosed with multiple myeloma we entered into her treatments with high hopes and reasonable expectations of a good outcome. But I am realistic, as well. The statistics are sobering: approximately 33% of people diagnosed with multiple myeloma will die within a year of the diagnosis; approximately another 33% will die within one to five years; and the other 33% will pass the five year mark with indefinite life spans. According to the American Cancer Society, in 2009 approximately 20,580 people will be diagnosed with multiple myeloma and approximately 10,580 people will die from it.

This blog entry (or these next several) on practical and legal advice could be a book in itself. As a matter of fact, my insurance company, USAA, sent me three practical booklets after I notified them of Sue's passing: "When A Loved One Dies: Coping With Grief"; "When A Loved One Dies: Legal and Financial Concerns"; and "Going On ... A Pathway Through Sorrow." I imagine you can get similar free booklets from your own insurance company.

In a nutshell, here is some free advice from one who knows:

1. Buy a Costco-sized shrink-wrapped case of Kleenex. And really, I do mean Kleenex and not tissue. The cheap tissues they give you for "free" in hospitals is so course it will make the end of your nose raw. Other varieties of generics are also like sandpaper. Anyway, buy a case of whatever you want to use. You will need them for yourself and you will need them for your family and guests who stop by to reminisce with you. Come to think of it, you might as well get them immediately after the diagnosis, because you and all connected with you will experience loss and grieving in degrees over the course of time.

2. Don't wait until your loved one (or you) is near death to prepare estate documents. Talk openly about these things as soon as the diagnosis is in. Shoot, why wait? We should all do it before we know we have a serious and life-threatening disease. There are three documents I recommend as a minimum, and a fourth for those with significant assets. The three minimum documents are: (1) A Will; (2) A Power of Attorney For Health Care Decisions; and (3) A General Durable Power of Attorney for managing financial affairs. For those with significant assets, I recommend you create a Living Trust and transfer your assets into the trust. Did I mention you should do these things now? It doesn't get easier if you wait, and sometimes people wait too long.
3. Don't wait until your loved one (or you) is near death to talk about death, and funerals, and final wishes, and faith, and plan B. We started our discussions on these subjects almost as soon as Sue was diagnosed. (See my May 18, 2009, post What I'll Do After You're Gone and my June 3, 2009, post Decisions Decisions. ) These are discussions which can bring you closer together and help give all the discussion participants a sense of certainty and closure so that you are prepared for whatever tomorrow may bring. Susan and I did not limit these discussions to just us; we included our friends and our kids. This was beneficial because, when the end came for Sue, we were all already on the same sheet of music.

Ashes to Ashes

2010-04-12T08:00:00.000-07:00

If you haven't priced funerals lately and you happen to need to put one on, you can be in for a bit of a shock. You could easily spend over $10,000, not counting any money you spend hosting your relatives and friends. If you are Michael Jackson, you could spend a $million.

Sue and I decided a long time ago that big-bucks funerals were a waste of money. We agreed to each be cremated. But even there you need to shop around. I discovered that cremation in Fresno, California can be had for as much as $2,500 and for as little as $795. No real difference in the final product. We are comparing ashes to ashes, here.

We bought the $795 job from Bob Bergthold at Farewell Funeral Service, and now Sue is back with us, albeit in a small (but surprisingly heavy) box on the fireplace mantle. It's a rectangular brown plastic box about the size of a half gallon container of ice cream. We have to wait for the snow to melt to put her in her final resting place at 7,000 foot elevation in the Sierra Nevada mountains. We also have, affixed to the box, an official Permit for Disposition of the cremated remains of Susan Freeman Harper, cremation number 19818, issued by the State of California Health and Human Services Agency. The permit has this ominous warning: "IMPORTANT: The law requires that this permit accompany the cremated remains to the final place of disposition." I never did price cemetary burial plots. There's a lot of earth left where nobody will try to stop you from digging a hole and mixing a little ash with the dirt. Earth to earth. Dust to dust. It's all very natural.

And caskets. My goodness. Thousands of dollars to purchase one, or only $1,000 to rent a nice one for a day. If you rent one, you also pay an additional $300 for the cardboard inset which gets removed and buried. Instead of an open-casket viewing, we opted for a nice picture mounted on photoboard for about $50. The picture harkens back to a happier time, anyway. It's hard to make corpses smile. In addition to the picture, we spent about $400 to print a four-page (a folded 8 1/2 by 11 page, printed on both sides) color program which Dave, Debbie and Matt Friesen put together. I'm an old advertising guy, so four-color is the only way to go. Besides, you can't see those pretty blue-green eyes so well in black and white.

Then you have the newspaper obituary to consider. The Fresno Bee has a free announcement that everyone gets into which most of the pertinent information can be put. For $468 we did a small "display ad" with Sue's picture and a bit more information than the free announcement. The larger obituaries with life stories and accomplishments run into the thousands of dollars.

In addition to the $795 for cremation the funeral home was willing to coordinate the memorial service for a fee. Our friends and our church came through for us here. We have a lot of thank you letters to write and owe a great debt of gratitude to a lot of people who volunteered time. There is a $200 fee to use the church and social hall (though an anonymous donor paid this fee for us), and I have yet to get the bill from the church for the pie, ice cream and gorp (trail mix) Sue wanted served at the reception. I also learned that it is appropriate to give a small amount of money to the preacher and the musicians (ranging from $50 to $200, depending, I guess, on your importance and ability, and/or their importance and ability).

Don't forget death certificates. I ordered 15 certified certificates because I learned a long time ago in my law practice that this is the best and easiest time to get them. If you need just one more than you have when you are trying to settle the estate matters, you will rue the day you didn't order five extra when you had this chance. It takes about three to four weeks to get them, so I don't have them yet. My recollection is that they cost $12 each. Every bank, financial institution, insurance company etc. will want one and you will need to record one with an affidavit of death of joint tenant to transfer jointly-held real property into your name.

I haven't done a final tally yet. Come to think of it I probably never will. But anyway with the cremation ($795); additional funeral services and death certificates (about $300); obituary ($468); church and social hall rental and food (under $1,000?); printing ($450); and hosting and travel expenses (I picked up about $2,000) this inexpensive funeral cost around $5,000. (If you think that's a lot, try putting on a wedding.)

Sue was appropriately remembered by what was done. We would not feel better about what was done if we had spent another $5,000. Personally, I would feel worse if we had.

We have yet to finish our job, putting Sue's ashes in the ground in the appointed place, at which time we will recite these famous words from the Book of Common Prayer, based on Genesis 3:19:

"In sure and certain hope of the resurection to eternal life through our Lord, Jesus Christ, we commend to Almighty God our sister, Susan Freeman Harper; and we commit her body to the ground; earth to earth; ashes to ashes; dust to dust. The Lord bless her and keep her. The Lord make his face to shine upon her, and be gracious unto her, and give her peace. Amen."

She Is Risen

2010-04-09T09:51:00.001-07:00

About 500 people joined us for Sue's memorial service on Good Friday. It was a good service, planned by Sue together with three of her close friends, Cindy, Maggie and Debbie. We have appreciated all the outpouring of support and love by cards, calls, letters, emails, comments posted on this blog, visits, food, flowers, memorium gifts to Camp Keola and Mennonite Central Committee, and your participation in or attendance at the memorial. And we have appreciated your prayers.

If you missed the memorial service, here's a copy of the slide show put together by computer genius, Doug Martin. (Turn your sound on to hear "For Good" from Wicked The Musical.)

One amusing story I neglected to pass along happened on Sunday, March 21. That was the last time Sue went to church. I got her dressed and trundled in the wheelchair and off we went. A lot of people who were aware of her condition were surprised to see her there at church. Unknown to me, two of my sisters, Cyndi and Maggie, went by our house about five minutes after Sue and I left for Church. Our friend and neighbor, Cindy, also went to our house at the same time for the same reason, and encountered my sisters there outside our front door. They were all going to offer to stay with Sue while I went to church.

They rang the doorbell and knocked to no avail, and then began to panic wondering if something was wrong inside. So Cindy, our neighbor, ran home to get her key to our house and when she got back they let themselves in only to find Sue was gone! She was not in her hospital bed or anywhere to be found. Then they wondered if she had died, so Cindy (the neighbor/friend) called her husband, Mark, who was running sound at the church and who had already seen Sue and me sitting in the sanctuary, and told him they couldn't find Sue and what did he think that meant? He replied to her that: "She is risen." Cindy was flustered at Mark's response, and so he told her that Sue was sitting in church with me and he repeated that "she is risen." Cindy then replied, "she is risen, indeed!"

One week later Sue really did die, and now she is risen in the Biblical "made new" sense of the word. The world is still turning, as we knew it would, and we are slowly adjusting to life without her.

I'll have a few more posts on this blog to wrap up my thoughts about Sue's passing, recount a few more stories, and to give general and specific advice, both practical and legal, about pre- and post-death planning.

Susan F. Harper

2010-03-29T18:11:00.000-07:00

Susan Freeman Harper. Born 7-15-1956. Died peacefully in her sleep 3-29-2010. She was loved by many, and she will be missed.

Thank you, blog readers, for your interest in Sue's life and your concern and prayers for her and our family.

During the last several months Sue kept a small book of writings from Maya Angelou near her bed.

The book has been open to this

Maya Angelou quote for some time:

"My grandmother used to say,

'When you don't like a thing,

change it.

If you can't change it,

change the way

you think about it."

It is my sincere hope that those who've followed

Sue's myeloma journey,

and particularly this last portion in which she showed

unflinching calm and confidence

that death is not something to be feared,

will have changed the way you think about death,

and also about life.

The tense of this blog title is no longer valid.

Has is now had.

Sue loved her life and lived it well,

but she's in a better place now as she knew she would be.

And she is now completely cancer free.

For those who are able to attend, there will be

a memorial service at:

North Fresno Mennonite Brethren Church

5724 North Fresno Street, Fresno, California

at 3:00 p.m. on Friday, April 2, 2010.

Remembrances may be made to:

Camp Keola

P.O. Box 111

Reedley, California 93654

Mennonite Central Committee

1012 G Street

Reedley, California 93654

A Beautiful Ride Redux

2010-03-27T18:18:00.000-07:00

Susan came home from the hospital on Friday, exactly one week ago yesterday. It was a beautiful, sunny spring day in California; So when the hospital transport lady and the nurse on duty wheeled Sue out in a wheelchair, dressed in a matching pink and white striped pajama top and bottom and shocking yellow non-slip socks, she tilted her head back and enjoyed the sunshine and the gentle spring breeze running through the hospital breezeway. We loaded Sue into the car and slowly drove home.

The ride home had that surreal, slow-motion feel to it. Sue looked carefully at the hospital and its landscaping, at trees loaded with delicate pink blossoms, at fruitless plum trees in splendid first purple leaf. She looked at them as you might look at scenery you don't expect to see again, committing them to memory. Even the flowers in our neighborhood and in our own front yard looked especially colorful and pretty. We had quite a collection of flower bouquets under the front porch roof, lining the path to our front door. As I took Sue inside in the wheelchair and got her situated in her new bed, she commented what a nice day it was, and what a beautiful ride we had home from the hospital.

Friday morning I had received delivery of the hospice hospital bed, rolling hospital-style overbed table, commode, wheelchair, and supplies. Saint Agnes Hospice provides everything, including medications, syringes for PEG tube feeding and administering medications, pill grinders, disposable gloves, disposable bed pads, disposable diapers, Jevity isotonic nutrition (with fiber) etc. After we got Sue home and situated in bed, a hospice nurse came to the house to give me an orientation and training. Then I was on my own for the weekend. Saturday morning Sue and I interviewed a couple of the in-home-care workers I had contacted previously. We hired one lady, Saroj, to start Monday morning at 8. The in-home-care workers are the only thing not covered by insurance.

Saroj has worked for a week now, from 8 to 4. She's experienced doing in-home care, and she's very caring. She was referred by one of our pastors, and we really appreciate having her help. Both Saroj and I have noticed how much Sue's condition, particularly her physical strength, has decreased during the course of this first week. When Sue came home last Friday she couldn't use her legs or her left arm, and she couldn't swallow, but she could still use her right arm a little and had enough core body strength to sit up by herself in the wheelchair or on the commode. I got her dressed and took her to Church last Sunday in the wheelchair. She slumped over and slept on my shoulder for part of the service, but she was happy to be there. By Wednesday Sue's right arm also stopped working, her speech was getting slurred, she had become incontinent, and she had lost her core body strength. By today, she was like a rag doll when we got her up. Saroj got her dressed though and took her outside in the wheelchair to see her flowers. But we had to strap her to the back of the wheelchair using the safety lifting belt to make sure she didn't fall out of the wheelchair. After 15 minutes outside she was worn out and had fallen back to sleep. So we put her back to bed.

Her recent conversations with visitors don't always track well, and sometimes she doesn't have much to say at all. But still, amazingly, every visitor gets a warm welcome and a smile and some kind of happy greeting. Ask her how she's doing and she'll tell you "Good. Good. I'm happy." Everyone, from family to visitors to hospice workers, have commented how content and at peace she seems.

It doesn't seem fair that such a beautiful person would be knocked down like this. But it's another sunny spring day, and Sue's not consumed with self pitty. She is at peace. She's at peace with her circumstances, and with her decisions, and with the world, and with God. She'll greet you with a warm smile and thank you for coming, then drift back into an oblivious, pain-free contented sleep.

As I sit here looking out the window at the late afternoon, and see the trees and roses and flowers in bloom with spring leaves and colors back-lit by the waning sun, and hear the neighborhood birds and squirrels and dogs, and I think of the hundreds of people out there somewhere, you blog readers included, who have prayed for Sue and whose prayers for her are being answered beautifully, if not differently than we hoped or imagined, I am again reminded of the Gary Allan song "Life Ain't Always Beautiful" I blogged about last June under the blog title "A Beautiful Ride."

"No, life ain't always beautiful
Tears will fall sometimes
Life ain't always beautiful
But it's a beautiful ride"
"What a beautiful ride"

Plan B

2010-03-20T22:00:00.000-07:00

Sue's friend, Cindy, once gave her a card that said, "Success in life depends on how you handle Plan B." Sue has come to understand that the prospects for her attending Jessica's wedding in Idaho are dim, so, because Luke is here visiting for spring break, Sue and Jessica hatched Plan B.

The other evening seven of us huddled around Sue's hospital bed and had a mini-version of the Celtic handfasting ceremony Jessica has planned for May. First , Sue said a few words, including how happy she was that Jessica found Luke and that she does not have to worry that Jessica might have made a bad choice. Then Sue read from Ecclesiastes 4:9-13:

"Two are better than one, because they have a good return for their work. If one falls down, his friend can help him up. But pity the man who falls and has no one to help him up. Also, if two lie down together, they will keep warm. But how can one keep warm alone? Though one may be overpowered, two can defend themselves. A cord of three strands is not quickly broken." (and here she pointed out that God is the third strand in their cord)

We then tied the knot on Jessica and Luke. I don't know if this is where the term "tie the knot" comes from, but the idea is the two to be wedded hold hands and different colors of ribbons, symbolizing different things, are tied around their wrists sort of binding them together, while words are spoken. Sue and I tied a blue ribbon on their wrist, symbolizing tranquility, patience, devotion and sincerity, and while the gathered few looked on, recited from the handfasting verses selected by Jessica. I am not allowed to print the whole thing, but a selected section was particularly meaningful, and appropo (apropos, if you prefer) to the moment: "These are the hands that will hold you when fear or grief fills your mind. These are the hands that will countless times wipe the tears from your eyes; tears of sorrow; and tears of joy."

It was a time for both tears of joy and tears of sorrow. But it was good, and gave some closure to all involved. Following the ceremony I told the happy couple they could kiss, but they still couldn't sleep together until after the real wedding on May 22. Couldn't brandish my shot-gun, though, since we were in a hospital. (Actually, I don't have any guns. I've never really wanted one, and anyway I always figured that if I had a gun I'd have a much greater chance of getting shot by Sue with my own gun than by an intruder.)

The whole saga of Sue's cancer and the timing of it and all the "best laid plans" that have "gone askew" and the need to go to Plan B caused me to want to re-read the Robert Burns poem, "To A Mouse."

To A Mouse, on Turning Her Up in Her Nest, with the Plough - by Robert Burns
(translated to English from the original Scottish version)

Small, crafty, cowering, timorous little beast,
O, what a panic is in your little breast!
You need not start away so hasty
With hurrying scamper!
I would be loath to run and chase you,
With murdering plough-staff.

I'm truly sorry man's dominion
Has broken Nature's social union,
And justifies that ill opinion
Which makes thee startle
At me, thy poor, earth born companion
And fellow mortal!

I doubt not, sometimes, but you may steal;
What then? Poor little beast, you must live!
An odd ear in twenty-four sheaves
Is a small request;
I will get a blessing with what is left,
And never miss it.

Your small house, too, in ruin!
Its feeble walls the winds are scattering!
And nothing now, to build a new one,
Of coarse grass green!
And bleak December's winds coming,
Both bitter and keen!

You saw the fields laid bare and wasted,
And weary winter coming fast,
And cozy here, beneath the blast,
You thought to dwell,
Till crash! the cruel plough past
Out through your cell.

That small bit heap of leaves and stubble,
Has cost you many a weary nibble!
Now you are turned out, for all your trouble,
Without house or holding,
To endure the winter's sleety dribble,
And hoar-frost cold.

But little Mouse, you are not alone,
In proving foresight may be vain:
The best laid schemes of mice and men
Go often askew,
And leave us nothing but grief and pain,
For promised joy!

Still you are blest, compared with me!
The present only touches you:
But oh! I backward cast my eye,
On prospects dreary!
And forward, though I cannot see,
I guess and fear!

Let's Go Home, Kemo Sabe

2010-03-17T18:47:00.000-07:00

Fran Striker was the author of the Lone Ranger. You should be a little older than me to really remember the Lone Ranger or his indian friend, Tonto. I do remember it, though, and I remember that Tonto used to call the Lone Ranger "Kemo Sabe." A fair amount of speculation has circulated over the years about the meaning of Kemo Sabe, but Striker's son, Fran Jr., has more or less put an end to the speculation. Kemo Sabe means "faithful friend."

Chemo Sabe is a term used by a number of cancer people. There are a couple of books by that name. One thing I can tell you, chemotherapy is a friend to cancer people, but it's not really the kind of friend you want to have. There are some situations in life, I guess, where you'll take whatever friend you can get.

But chemo is not a friend of Sue. Not anymore. Nor even a companion. Dr. Hackett stopped in on Wednesday morning and told Sue that Dr. Wolf wanted to start yet another chemo drug on Sue, Cytoxan. So Sue would have been getting Dexamethasone, Revlimid and Cytoxan. But neither doctor was holding out much prospect of recovery of muscle control in Sue's legs, left arm or throat. The malignant cancer in her spinal fluid had already done a lot of neurological damage.  Both doctors agreed that the malignant multiple myeloma cells that have lodged in the wall of Sue's spinal column and traveled up and down her spine and possibly into the brain through the spinal fluid, wreaking havoc up and down her spine, makes Sue's an extremely rare and difficult to treat case of myeloma. And but for the high levels of neurontin and hydromorphone, the pain she experiences is unbearable.

So she said no to further chemotherapy. It was an informed decision made with doctors, family and friends. That decision was made two days ago. Sue was discharged today and is now home.  Her care is now under the supervision of Saint Agnes Hospice. All feeding, fluids and drugs are administered through her PEG tube. It's not difficult, just time-consuming. The primary concerns are for comfort. The orders are DNR -- do not resuscitate -- and don't call 911.

Sue is happy to be home. We will hire one or more people to help with Sue's daily care needs.  There are nurses and nurse assistants and chaplains who will call on Sue at home, periodically. You are also welcome to stop and visit, Kemo Sabe.

Letting Go

2010-03-16T23:05:00.000-07:00

Lots of movies have gripping scenes where someone is barely hanging on in a precarious life-threatening situation, and others are encouraging them to "hang on" and "don't let go." Some do hang on and are rescued. Others don't.

The movie Titanic had a couple of scenes like that. I am thinking of the scene after the Titanic has sunk when Rose is floating precariously on a flimsy board, and Jack is in the water, holding her hand and telling her "Don't give up, Rose. Don't you quit." Soon, though, the freezing water is too much for Jack, and he loses his grip, lets go and slips under the water. But Rose hangs on and is rescued and lives a full and satisfying life.

Hanging on is not always the best thing, though. Five years ago friends of ours lost a grand-baby. The baby was only a few days old when it died. That was a sad time and there is still grieving over that baby. Our friends have a little letting go tradition they started on the baby's first birthday. They buy a happy birthday balloon, say a little prayer, and let the balloon go. I was over there for dinner tonight, on what would have been the baby's fifth birthday, and participated in the letting go ceremony. My buddy and I stood there watching that balloon until we couldn't see it anymore.

Sue was in a lot of pain today, on and off. Headaches, neuropathy, nausea and general discomfort. You want to be encouraging, but days like this you don't know if it's even right to stand on the sidelines and holler "Don't give up." "Don't quit." "Hang on." "Don't let go."

Someone, presumably Leslie Plyler, posted this letting-go poem as a comment to one of my recent posts.

UNTIL WE MEET AGAIN
In the silence of your slumber
There's a low-lit burning fuse
Your journeys almost over
And you've paid your final dues

Your sun will now be setting
From a view I cannot see
A prism of crystal colors
That plays a beautiful symphony

You'll finally have the option
To soar on the eagles wing
To fly from near the mountain tops
Down to the nearest stream

No more burdens of this life
You'll not find them around
You'll finally be released
Of the chains that held you down

And I won't hold you back
Being selfish with my tears
By dwelling on your life
That you had when you were here

With unconditioned love
I send with thee my friend
And holding memories dear
Until we meet again.

Written by Leslie Plyler
with Dennis Coty 1948-2002

PEGgy Sue

2010-03-14T23:27:00.000-07:00

The G.I. (gastrointestinal, or gastroenterologist, if you prefer) doctor, stopped by to consult with Sue this morning. He's planning to put her PEG (Percutaneous Endoscopic Gastrostomy) feeding tube in tomorrow afternoon. He says the procedure will take about 20 minutes. After the surgery is complete Sue will no longer be called Sue, but Peggy Sue. Her mom's name was Peggy, so it's all coming together here.

Sue was tired today, and slept a lot. Today was day 7 on the Rev-Dex combo. The past couple of days she's had persistent headaches in the frontal lobe area, just behind her forehead, and periodically throughout the day she'll have hot flashes -- hot enough to make the back of her neck and head sweat.

We expect to make arrangements this week for home health care and subsequently, if indicated, home hospice care. We tentatively expect Sue to be discharged later this week or early next week. Sue has made the choice to wear the DNR (do not resuscitate) wrist band, and we've placed a copy of her Health Care Power of Attorney in her binder of medical information in her room.

Her immediate goal is to try to get well enough to attend our daughter, Jessica's wedding in May. Her back-up plan is to have all of Jessica's surrogate moms attend, and when Jordan asks "who gives the bride away?" I am to have them all stand up and say "her mothers and I do." We have yet to run this back-up plan by the bride to be.

Dr. Roper and the Hospitalist Swing

2010-03-14T08:14:00.000-07:00

A number of years ago Sue made me take a class with her to learn how to dance the West Coast Swing. She was a Cal Poly Aggie in college and a life-time member of the 4-H and the FFA. I was glad that Kim Buendia made her husband take the same class, too. Misery loves company, you know.

Left two three, right two three, back step, and left two three, right two three, swing your gal around. After I got the rudimentary moves down I bought some roper boots, Wrangler jeans, a western shirt, and Sue and I each got a Montana Silversmiths silver belt buckle (indian designs). Oh, and Stetson hats. Somehow dancing the West Coast Swing with a bunch of legitimate cowboys and cowgirls at Jim's place in Clovis just wasn't right with white Nike tennis shoes, shorts, a t-shirt and a baseball cap. I still wear the roper boots from time to time, but we haven't been dancing much this year.

The current hospitalist seeing Sue daily is Dr. Roper. He's going to have a G.I. doctor (that's gastro-intester-something-something-ologist) see Sue about inserting a peg -- a feeding tube -- directly into Sue's stomach. It's not a big deal as far as surgeries go. But it will allow them to remove the tube from Sue's nose and gives a little more latitude in terms of what you can grind up and insert into her stomach. I gather that the peg insertion is preparatory to discharging Sue from the hospital.

Just sitting in bed and talking, she seems like her old self. She's been cutting back on her pain meds. Physically, she is barely better. While her left arm is still pretty much dead weight, she has juuuust enough strength, with assistance, to swing her legs over the edge of the bed and, with assistance, sit up, and scooch to the edge of the bed and, with assistance, stand up. Then, standing in front of her and holding her left hand in my right hand, with my left hand behind her back holding the safety strap they make you clip on before assisting people out of bed, I have the fleeting sensation we are timing the music to kick off an up-tempo swing dance. But we just stand there while she stretches her calves. She's good for a few ginger steps forward and a few ginger steps back. While holding on to you she can rotate to the commode, which is worlds better than a bed pan. Back two three, front two three, swing your gal.

Well, like the John Michael Montgomery country song says, "life's a dance you learn as you go." I call this new dance "the Hospitalist Swing."

Freeway Chicken

2010-03-13T10:25:00.000-08:00

About a year ago I was driving to my main office, from Fresno to Madera, California. I was headed north on Highway 99, a north-south "freeway" with two northbound lanes of heavy traffic and two southbound lanes running through the middle of the San Joaquin Valley. The northbound and southbound lanes of this arterial highway are divided by a large dirt center median with oleander bushes running shoulder-to-shoulder down the center of the center median. During the times of the year when the oleanders are in bloom, it's quite colorful driving up and down the Highway 99.

This part of California is farming country, and mostly what you see as you drive through here are grape vineyards, fruit orchards, and nut orchards. A lot of the farms have your typical menagerie of farm animals, like chickens. As I was headed north on the 99, between the Avenue 9 on ramp and the Avenue 12 off ramp, right in the middle of the center median on the east side (northbound lanes), just clucking along and pecking contendedly away at the seeds and chicken-feed bounty in the dirt, was a red-feathered chicken.

I chuckled and shook my head and thought to myself "that chicken isn't long for this world." Well, over the past year I've seen that same chicken periodically in the same general area of the freeway median, and I've thought to myself: "Chicken, you're either really lucky, or you're smarter than I gave you credit for, or some higher power has your red-feathered back."

I headed for Madera this morning after a brief visit with Sue up in SAMC room 310. Right after I hit the 99 North off the Avenue 9 on ramp I saw that freeway chicken again, contentedly pecking it's freeway chicken-feed, and thought about Sue. If that dang freeway chicken can defy the odds, why can't she?

Hospital Moments

2010-03-12T09:02:00.000-08:00

If you hang out in a busy home-town hospital for any length of time you will begin to see a lot of people you know. Not just people who come to see your intended visitee, either. My next door neighbor's mother was in the hospital a few doors down from Sue. Our old neighbor's father was in last week too, but, sadly, he passed away a few days ago. He'd been living at the same alzheimer's care facility where my mother lives. I've seen a few of my clients here with various ailments. And, it turns out a lot of people I know work here. Saint Agnes Medical Center is one of the largest employers in Fresno.

You meet new people too. I met Tu, in fact, whose wife is two doors down from Sue. She also has cancer. Tu and I are getting to know each other. As I mentioned, I used to work here as a janitor back in the late 70's and early 80's. I have yet to meet anyone on staff who was working here back then. But the current staff are all real people, and they all have their own stories and their own lives and their own concerns and joys etc.

The good news for me is that I've been to the hospital cafeteria so many times in the past couple of weeks they've begun to ring me up with the employee discount. Of course, if they ask "Employee?" I tell them no, not anymore. But I don't feel bad about taking the discount when they ring it up automatically. For one thing, Sue is contributing about $5,000 a day to the hospital coffers, and for another thing, I am a little OCD, and I do a fair amount of work picking up, tidying up and cleaning up things around the place.

Like all hospitals, Saint Agnes has a loudspeaker system. When I worked here we used to call the hospital operators and ask them to page fictitious names we'd made up. It made us laugh hysterically sometimes. One time I thought the guys were up to it again when I heard the operator page "James Bond." Later, I met James. He was a real guy and a pretty good guy.

A new tradition they have at Saint Agnes now is that the labor and delivery unit plays a short, music-box rendition of Lullaby and Good Night over the hospital's loud speakers every time a new baby is born here. I'm sure I've heard it at least fifty times over the past several weeks. Sometimes they pop them out pretty rapid-fire. I've heard that Lullaby three or four times in a span of 30 minutes. You see a lot of joyful people passing through the lobby, headed to the sixth floor to see the new babies.

A lot of praying goes on in hospitals. And I sure hope God is multi-lingual, because I've heard and participated in prayers here lately in four different languages, including English, Arabic, Hmong, and Spanish. I've heard stories from some of my Mennonite friends about how some of their Mennonite ancestors would only pray and sing hymns in low-German because that was the official language of God. It brings back vague memories of Bible stories, like the Tower of Babel and the story of the pentecost.

I'd say that, for honest, passionate, self-motivated prayer, hospitals might be one-up on the local churches. One of my employees, Yesenia, stopped by the other day to pray with Sue and me and one of our pastors, pastor Loren, who happened to be visiting. We prayed around a circle holding hands, and when it came her time she prayed passionately in Spanish.

I assume that all the prayers are heard, but I don't know if all the prayers are answered. Garth Brooks has a song in which he thanks "The Man Upstairs" for unanswered prayers. If all prayers are answered, I'm pretty sure they're not all answered in the way the pray-ers might want. But the whole spectrum is here, right here in this hospital. Prayers of thanksgiving for each new life, each new loudspeaker lullaby. Prayers of the concerns of ordinary people. Petitions for forgiveness and absolution for what we've done that we know wasn't right. Prayers of petition for healing and mercy for each sick and injured person. Prayers of thanks for miracles and answered prayers. Prayers for what we want that we know we probably won't get. And prayers of grief and sorrow for those who pass on.

And somehow I think that's what God intended with these hospital moments of our lives. That we step away, for a time, from the routine, temporal daily tasks that consume us, and focus for a moment on our eternal, divine creator.

Reved Up

2010-03-10T07:55:00.000-08:00

Sue started on Revlimid (thalidomide/lenalidamide) Monday night. She is getting the highest daily dose they make, which is 25 mg. They dose her one time a day at night, because the stuff wears you out and makes you tired. The high dose Dexamethasone treatments (40 mg/day, administered at 10 mg every six hours) started over the weekend. This combination of drugs, known in the myeloma medical community as "Rev-Dex," is now commonly prescribed for myeloma patients who've had at least one prior course of chemotherapy with a different drug than Revlimid. The FDA has only conditionally approved the use of Revlimid for patients who've had at least one other drug therapy.

Everything now hinges on whether the Rev-Dex combination will bring the myeloma under control again, and if so, for how long. They will be testing Sue's blood to see if the cancer goes back into remission. Myeloma is one of the cancers for which there is not really a cure, so a typical history of treatment, or management of the disease, is drug therapy to bring the cancer into remission or partial remission, followed by an inevitable relapse, followed by more drug therapy, and so on. The patient's prognosis for long-term survival usually depends on the amount of time they remain in remission. According to an aritcle in Wikipedia, median survival for myeloma patients is 50-55 months. I have seen other articles indicating a lower median survival time of approximately 3 years, but those articles may have been based on older studies. Some patients remain in remission for years. In Sue's case, she has never remained in remission for more than a couple of months following any course of therapy, and her current symptoms are rather dramatic. I believe that is why the doctors are not optimistic.

The Dexamethasone has brought up her energy levels and puffed her face back up. The Revlimid will now knock her energy levels back down. The potential side effects of Revlimid are many. One negative side effect, birth defects, is a non-issue for Sue. The most common and potentially most dangerous is blood clotting. One of the questions Sue asked Dr. Wolf in our initial meeting with him was, what does death from Multiple Myeloma look like? My recollection of his answer was that it would be a slow wasting away and that eventually some of her internal organs would stop working. We remain hopeful but grounded. We are investigating hospice care options.

The one drug that has the best effect on Sue these days is endorphins, and she gets them from the many visits, phone calls, cards etc. that you have been giving her. She is not reading her emails lately, so that is not the best way to communicate with her. You all have been so kind and shown so much love that, notwithstanding her crummy circumstances, Sue's cup is running over.

Rant

2010-03-08T23:36:00.000-08:00

Damn these doctors! You want the truth, and you ask for it, and they give you what they've got. And you appreciate it, and then you don't. It's not their fault. They're doing the best they can. But really, what do they know about when your time is going to be up? I've met lots of people who've told me that x number of years ago they were told by a doctor that they only had a few months left to live.

I'm telling you, I know my wife, and today I do not believe she is dying. But I've flip-flopped on this question every other day. In any event, if she isn't dying, she's living well; and if she is dying, no one ever has or ever will die with more grace or humor or dignity.

Because I Knew You

2010-03-08T23:20:00.000-08:00

Last February, barely more than a year ago, Sue, Jessica,Valerie and I went to San Francisco for a weekend with our friends, Mark and Cindy, to see Wicked the Musical. The story is that of two college-age girls coming of age, and explores our perception of what it means to be wicked or good. It's a good story, the music is terrific, and I recommend it to you if you get the opportunity to see it.

As the story progresses, the two antagonists -- the "good" witch, Glinda, and the "wicked" witch, Elphaba -- are saying goodby to each other, and they realize they have deeply impacted each others' lives, and they sing one of the memorable signature songs of the musical, "For Good."

"Who can say if I've been changed for the better?
But, because I knew you,
Because I knew you,
I have been changed for good."

Because I Knew You Click here and then click to play the first audio/video.

This is really the best we can hope for -- that we have impacted the lives of those we encounter and that they can say we changed them for good, and for the better. A lot of teachers are privileged to be in this category, and for sure this is true of Sue -- as a teacher and as a friend. She doesn't have a lot of friends for no reason. This evening she called me and was deeply touched by her friends and teaching partners at Pinedale Elementary School, who are planning to honor Sue and her contribution to the Pinedale Elementary School community in their upcoming year book. She wouldn't be prouder or more honored if she'd won the Nobel Peace Prize.

The Way We Were

2010-03-08T06:07:00.000-08:00

When Sue and I were married, back in October of 1980, I was an undergraduate student at California State University Fresno. My job, every Friday, Saturday and Sunday, and every holiday, from 3:30 to midnight, was as an "environmental engineer" -- i.e. housekeeper/janitor -- at Saint Agnes Hospital. The job was perfect for a student because it did not interfere with going to school. However, Sue hated my job because it left her alone every Friday, Saturday and Sunday evening, and every holiday from 3 to midnight.

They call it Saint Agnes Medical Center now, and it's more than twice as large now than it was back in the day. Now, almost 30 years later, Sue's hell bent on getting even. She's been over there every night from 3 to midmight for two weeks.

We met at a high Sierra Christian camp about three years before we got married. I was on staff as a maintenance "man" and Sue was hired as a cook. Maintenance back then meant everything from fixing things to cleaning toilets, and included washing dishes three and sometimes four times a day. That set the tone for our marriage, as Sue has spent thirty years dirtying up the kitchen (she's a really good cook, by the way) and I have spent 30 years traipsing behind cleaning it up. Our youngest daughter likes to say that my favorite thing to do is run the dishwasher. Darn right. Leave no dirty dish behind!

We've have had involvement with the camp, Camp Keola, in some capacity for all the time we've known each other, and our Lakeview Cottages which we co-purchased with a group of friends is right next door to Camp Keola, on the southwest shore of Huntington Lake. So Huntington Lake is, quite frankly, our favorite place in the world. In a sense, it is our place in the world.

Each summer for as long as I can recall, Valley Childrens' Hospital runs a camp at Camp Keola for kids with cancer. They call it Camp Sunshine Dreams. The camp is run by the doctors, nurses and staff of Valley Childrens' Hospital, as well as involved family members and volunteers. It is an annual week of high-energy fun and encouragement for kids in a tough situation. Through years of peripheral involvement with Camp Sunshine Dreams I learned one unequivocal truth: cancer's tough on the body, but it doesn't kill the spirit. If anything, it kindles the spirit. (Click the Camp Sunshine Dreams link and look at some of the slide shows if you're not convinced, or if you just want to be inspired.)

The Camp Sunshine Dreams organizers have a nice campfire tradition. Every year on the last night of camp they have a special campfire where everyone puts down a wish or a hope or a prayer on a piece of paper, and wraps it up and puts it into the fire. The prayers are sent heavenward with the heat and smoke and flames, and, mixed all together with each other, form a powerful elixir of life and love and hope.

Life is very real for the Sunshine Dreams kids, and so is death. Every now and then they lose one of their kindred. And then, by symbolism, or sometimes by ashes of the deceased, they introduce the decedent to the campfire of dreams, to the elixir of life and love and hope. And when the fire has died down and cooled, they stir up the ashes and take home a jar of the ashes, and next year, when the campfire of hope is rekindled, they start with the ashes from the previous year.

And that campfire of dreams is a metaphor for how we should live. We have our hopes and our dreams and our prayers, and we offer them in community, sharing each others' hopes and dreams and prayers; and we live life to the fullest; and we don't forget our fallen fellow travelers; we take them with us and their spirit is and always will be a part of who we are.

The Bomb Revisited

2010-03-06T20:20:00.000-08:00

Dr. Birnbaum came by this afternoon with Dr. Whitlinger. Dr. Birnbaum is the neurologist called in by Dr. Crooks. Dr. Whitlinger is an oncologist who works with Dr. Hacket. They delivered the bad news. The spinal tap shows a lot of active, malignant cancer cells. Dr. Birnbaum says the fact that the spinal fluid contains malignant cancer cells is a sign they have spread beyond the spinal area to the whole body. His take is that the cancer is interfering with neural transmissions, which is the cause of Sue's muscle failure, as well as the cause of Sue's pain.

The local doctors said they'd report the findings to Dr. Wolf, which apparently they did. Dr. Wolf called my cell phone later in the afternoon and I put it on speaker and set the phone on Sue's stomach, and we had a conference call with him. He was grave and, God bless him, he's never pulled any punches. When asked for his honest prognosis, he gave it to us straight. He says it isn't good. He's treated a lot of myeloma patients over the years and rarely has had one this tough. He will prescribe massive doses of Dexamethasone (40 mg/day) and the current rave drug for myeloma, Revlimid. However, he said Sue's cancer has proven extremely resistant and, because of her 4/14 chromosome transposition, he does not want us to be overly optimisitic. She's had Velcade (VDD) chemo treatments last summer, a Melphalan autologous stem cell transplant in September, radiation in December, and now, barely two months later, the cancer is back and aggressively advancing. He said her time left could be in the range of "a couple of weeks to a couple of months." He says she will not leave the hospital to begin the Dexamethasone and Revlimid, and might not leave the hospital at all if the Revlimid does not work.

In one of my earliest blog posts from May 2009 titled "The Bomb", the one where the local oncologist first informed us that Sue had multiple myeloma, I naively stated that "cancer's cancer." A falser tautology has never been penned. In the past ten months we have learned that there are better and worse cancers to have, and that , in the grander scale of things, multiple myeloma is one of the bad ones. In the past ten months we have learned that the treatments for multiple myeloma have improved greatly, and that life expectancy for myeloma patients is going up. We have followed the blogs of lots of "survivors" of multiple myeloma who are years past their diagnosis. We have also followed the blogs of several myeloma patients who succumbed to the cancer. We are not giving up the fight just yet, but it's looking like Sue will pull the three year post-diagnosis survival median down.

But also in the past ten months we have acutely tuned in to another lesson not specifically tied to the cancer diagnosis. People have asked, what's Sue's prognosis? And both Sue and I have replied that her prognosis is the same as yours and mine: None of us know when our time is going to be up. On the other hand, she now has a better fix on the answer to that question than you or I do, and in some ways she may be better off for it.

On the lighter side, they've given Sue a pair of "mittens" to wear while she's sleeping so that she doesn't pull out her feeding tube. They're more like boxing gloves than mittens. In every hospital stay she's always wanted her cell phone close at hand as a "life line" to her friends and family. She's sleeping now, with her right hand "mitten" placed on top of her cell phone in her lap. The mittens are tightly velcroed at the wrist and, I swear, I don't know how she could ever answer that phone or make a call or even call the nurse with the call button with those big mittens on. Or press her PCA button for pain medication activation. On second thought, it isn't the lighter side. It's another sad page in a sad chapter of an otherwise really good and upbeat book.

Temporary Home

2010-03-06T08:29:00.000-08:00

It's dangerous to listen to country music when you are emotionally on the edge. I've spent the past week thinking my wife is dying and bottling up all the emotions that go with that. Yesterday I was driving to work, which, since the core of my property management business is to collect rent from about 600 tenants every month, the only way I can imagine not going to work on the 5th of the month is if Sue actually did die on or around that day. She didn't die yesterday, and last night I switched back over to the other side, and now I think she isn't going to die anytime soon. But more about that later. I've already told you, this blog is about me.

So I was driving to work and listening to country music, and this Carrie Underwood song comes on the radio called Temporary Home (click the link to hear the song), and the tears started to flow a bit. The song is co-written by Carrie Underwood, Robert Laird, and Zac Maloy, and the words go like this:

Little boy, 6 years old

A little too used to bein' alone
Another new mom and dad,another school
Another house that'll never be home
When people ask him how he likes this place
He looks up and says with a smile upon his face

"This is my temporary home
It's not where I belong
Windows and rooms that I'm passin' through
This is just a stop, on the way to where I'm going
I'm not afraid because I know this is my
Temporary Home."

Young mom on her own
She needs a little help got nowhere to go
She's lookin' for a job, lookin' for a way out
Because a half-way house will never be a home
At night she whispers to her baby girl
Someday we'll find a place here in this world

"This is our temporary home
It's not where we belong
Windows and rooms that we're passin' through
This is just a stop, on the way to where we're going
I'm not afraid because I know this is our
Temporary Home."

Old man, hospital bed
The room is filled with people he loves
And he whispers don't cry for me
I'll see you all someday
He looks up and says "I can see God's face"

"This is my temporary Home
It's not where I belong
Windows and rooms that I'm passin' through
This was just a stop,on the way To where I'm going
I'm not afraid because I know this was
My temporary home."

This is our temporary home

And if that song doesn't cause you to tear up a bit, maybe you have a heart made of stone. But anyhow, back to Sue. Something was different last night, and I can't quite put my finger on it. It's almost like a corner was turned, but seeing the difference from yesterday to today might be like sitting outside and watching your grass grow.

She's still sick and has all the symptons described in my blog of yesterday. Plus she has the bad habit of pulling out her feeding tube, which she's done three times already. In her defense she does it while sleeping and drugged up. I joked to Mark W. last night (we were in the room with Sue and her sense of humor is very good -- for example she accused Mark of only stopping by to visit with me) that Sue is trying to commit suicide by x-ray. (You've heard of suicide by cop where the person wants the cops to shoot him? Well, they seem to think they have to x-ray the tube every time they insert it to be sure it's in the stomach. She's been x-rayed for the feeding tube insertion four times now. However, I heard from Debbie F, an R.N. of old (or is she just an old R.N.?) who said that, back in the old days, they used to insert these tubes all the time without an x-ray and they could tell it was in the right place without an x-ray by forcing air into the tube and listening.)

So maybe the hospital is just a temporary home for Sue until she comes home to the temporary home where we currently live. But anyway, I'm temporarily going out of the predicting business.

P.S. I have ultimate respect for police officers, and only use the term "cop" because the phrase "suicide by cop" is now in common usage. I used to adhere to the "copper badge" theory as the probable derivation of the term "cop." However, I just now discovered (on the internet, the ultimate purveyor of truth) that the "copper badge" theory probably is a myth. Click here for the latest on the derivation of the term "cop."

On A Clear Day

2010-03-05T00:03:00.000-08:00

Yesterday it rained hard in the San Joaquin Valley of California, and snowed hard in the Sierra Nevada Mountains just a few miles to the east. I left the hospital around midnight and the clouds had cleared by then, leaving a cold clear night (well, o.k., 41 F is cold for Californians). Cold clear nights after heavy rains yield stellar stellar views.

The pain medication Sue is on, Dilaudid, is powerful stuff. I've heard it's about ten times stronger than regular morphine. It clears up the pain (or does it occlude it?), but simultaneously clouds the brain. Sue had a number of halucinations last night which she called periodically to report to me. I came back down at about 3:30 a.m. to sit with her and woke up at 6 a.m. to the most gorgeous, clear view out Sue's third floor window of the snow-capped Sierra Nevadas framed by a cloudless morning-blue sky. 50 miles to the west the coastal mountains were also clearly visible.

The clouds moved back in early in the morning though, and the exceptionally clear view was reduced to a memory. If you ever wanted to paint this landscape as it should be -- at it's best -- that picture of rain-fresh cloudless clarity would be it. It isn't often, or long, that things are presented at their picture-perfect best.

Sue had a pretty good slew of guests today: Lots of friends came by. Cindy W. was the first, at 8:30 a.m. and Jenny A. was the last at a few minutes after 10 p.m.; Two of her pastors stopped by at different times; Several chaplains popped in; A hospital dog -- a labrador -- came by with it's handler; both of our daughters spent time with Sue; and several hospice workers stopped to visit and provide information. One visitor, the infamous "singing chaplain" -- i.e. Tim S. from North Fresno M.B. Church, sang Sue the hymn of her choice.

Sue's sleeping solidly now. She's tired and her throat hurts. She's got a tube stuck into her nose and down her throat into her stomach so that she can have a TPN, which is a way of dripping nutrition into people who can't take food or liquid by mouth. So her current situation is that she is more or less immobile, her throat isn't working right, she's in a lot of pain for which she is getting a lot of Dilaudid, which causes her to have an unclear mind with periodic halucinations, and she can't eat. And she has no answers to the what or why or how long.

It's rather a bleak situation when you add it all up. For sure Sue's not at her picture-perfect best. Like the clear view of the mountains this morning, that's a memory. Remarkably, though, she has a smile for every visitor, and a gladness and humor you'd expect to find only in people without any of her myriad, legitimate reasons to complain.

Happy To See You

2010-03-02T21:45:00.000-08:00

In my life I've had several dogs, and all the dogs I've ever had have behaved the same way; when I came home, whenever that was, the dog was always happy to see me. Nay, excited and happy to see me. Run-to-the-door and wag-their-tail and jump-in-my-lap happy to see me.

That kind of happy to see me was true of my two daughters when they were young. When I'd come home, if they were still up, they'd run excitedly to me yelling "Daddy's home! Daddy's home! Yay!" and either jump in my arms or, if my arms were full, each grab one of my legs and be dragged along. They grew out of that, though. Trust me, they don't get up off the couch now, much less yell "Yay!" or anything like that.

Sue hasn't always been that happy to see me. For example, when I'd come home late from work and missed dinner, or some ill behavior like that. There's an old and sorry joke about the difference between your wife and your dog. If you put them both in the trunk of your car for an hour and then come back and open up the trunk, the dog will be happy to see you, and your wife will be ready to kill you. There've been times when I'm pretty sure Sue was ready to kill me. O.K. Real sure.

But being really sick and being in a hospital and being at the mercy of forces beyond your control can reduce you to a more animal (or infantile, if you prefer) state. One like the dog or the child who's happy to have any kind visitor most anytime, and even happier to have a special one. That's the state Sue lives in these days. I call it the "Happy To See You" state.

Of course, she wears out quickly, too, and so does your welcome. Sometimes when I wanted to be ornery, as visitors were leaving our house I would announce, "John, everyone who comes here brings joy to our house. Some bring joy when they come, and some bring joy when they go." In the case of visiting Sue at the hospital, you will likely bring her joy on both ends of the equation.

Another Moving Experience

2010-03-02T17:20:00.000-08:00

Sue's been moved from isolation room 319 to room 310, which is an ordinary two person room (although currently Sue is the only tenant). Room 310 is a straight shot to the right out of the main wing elevators, and right across from the third floor nurses' station.

The recent move is confirmation that Sue does not have T.B. So it was, and is, safe to visit. No masks required. Hugs permitted. Breakfast, lunch and dinner served via I.V.

How Do You Feel Today?

2010-03-02T16:36:00.000-08:00

1. Madder 'n Hell. This morning the oncologist appeared in Sue's room at a few minutes after six and announced to Sue that he was concerned about the weakness in Sue's muscles and that he had been unaware until this morning when he spoke with Dr. Crooks that Sue was having these issues with muscle weakness. It's probably a good thing I hadn't got here yet, because I'm still mad enough to spit. What have we been doing here for a week? We presented Sue to the E.R. a week ago with complaints of muscle weakness and fatigue. Granted, Sue also had a fever of 103 F at the time. Somehow she ended up in isolation with a red-herring diagnosis of TB, and so now it appears that for the past week "we" have not been addressing the real issue(s).

2. Tired, and Needing A Little Focus. Sue called me at five after six this morning and said don't bother to come down to try to meet with the doctor, because he'd come and gone. But I was up and had coffee brewing so I'm operating on five hours' sleep today. Good for marines in training, perhaps, but I'm not genetically disposed to operating on that little sleep.

I'd hired a second maintenance man last month and he had scheduled work out of the office for which he needed to use my truck. So I "loaned" him my truck and "borrowed" the 2010 Ford Focus I bought last month for Yesenia to use showing and inspecting properties. I drove the Focus to downtown Fresno to file papers at the courthouse and the Sheriff's office. On my way back to where I'd parked, I was thinking distractedly about "things" when I noticed the empty parking stall where I thought I'd parked my truck, and I had about 30 seconds of great annoyance as I approached the empty stall thinking (in terms moderated for public consumption), "Oh this is just great! As if I don't have enough troubles, some idiot has stolen my truck." Momentarily I regained my focus, and realized I was standing next to my Focus.

3. Needing A Little Male Counseling. A lot of people who know of Sue's unfortunate medical situation have an inexplicable urge to ask me how I'm doing. I'm not the sick one, but to be sure the recent events surrounding Sue's hospital incarceration have been stressful for all involved. For you ladies who like to ask, I'd like to explain what a good man to man "counseling" session might look like. To set the stage, the Counselee will be the one "needing" counseling, and the Counselor will be the male friend who offers it. We speak here in the third person because no self-respecting male of my generation and geographic upbringing would ever admit to needing or wanting counseling.

So typically, Counselee is home "sipping" beer and watching a sporting event on t.v. Counselor rings the door bell, and Counselee answers. The following dialogue occurs:

Counselee: Hey, what's up?

Counselor: Not much, how 'bout you?

Counselee: Just watching a little basketball. (A few seconds of uncomfortable silence pass where, following the briefest of eye contact, Counselor inspects his nails and Counselee inspects the neighborhood while deciding if he wants to invite Counselor in.) You want to come in?

Counselor: Sure.

Counselee: Want a beer?

Counselor: Sure. (Counselor sits down and another minute of silence passes while Counselee gets the beer, opens it and gives it to Counselor).

Counselor: Thanks. You hear about the Jazz beating the Lakers?

Counselee: Yeah. That was disappointing. (Aha, true emotions spilled. That was truly healing.) This basketball game's a little lame. You want to watch some UFC reruns? (UFC cage fighting.)

Counselor: That'd be good.

Counselee then tunes in ultimate cage fighting reruns. Counselee and Counselor watch three fights of three rounds without speaking, quaffing two more beers each and periodically making exclamations like "ooh" and "ouch" and "ahhh ahhh ahhh" while watching angry, testosterone pumped fighters punch, kick, elbow, and knee each other in bloody, sweaty combat, trying to put each other to "sleep" (i.e. knock each other out) or submit the other guy by popping his elbow out with an arm bar to get a "tap-out submission." This is a vey gratifying way for both Counselee and Counselor to constructively relieve stress and agression.

Counselor then stands up and says: Well, I gotta run.

Counselee: O.K. See you around.

So that's what a good counseling session might look like for a man.

Not-So-Great Aspirations

2010-03-01T23:08:00.000-08:00

Doctor Crooks just left Sue's room. He said I could take my mask off because Sue does not have T.B. That's a relief for about 500 people besides Sue and me.

Sue had a swallow test earlier today and completely failed it, so now the thinking is that she has been aspirating some of her food and probably has (food) aspiration pneumonia. The problems noted in scans of the upper lobes of Sue's lungs are now believed to be food particles that have lodged in the lungs (as opposed to TB lesions), some of which are merely infected or causing toxic releases, and some of which may have become abscessed. They are going to do a needle biopsy on the ones (or some of the ones) that appear to be abscessed tomorrow. Fun.

So Sue is now ordered to be NPO -- Nil Per Os, meaning nothing by mouth. No food. Bummer. One of the few happy spots in her day shot down like a Zero.

On the bright side, Dr. Crooks is ordering a PCA for Sue. That's the little red button she's been wanting so badly. (See my "If I Had A Button" blog of 2-28.) PCA stands for Patient Control Activator. Dilaudid on demand. Party! Uh Huh.

Dr. Crooks (new doctor on call tonight) is concerned about the causes of the muscle weakness that has affected virtually Sue's whole body. Finally someone on the medical staff noticed that she can't walk, can't get up, can't lift her left arm etc. and is concerned about it. And apparently what caused them to take notice was that she failed a swallow test. And it was the R.N. on duty yesterday who suggested they do a swallow test because she saw Sue gag when trying to swallow a pill. But Dr. Crooks is on it. He's going to review Sue's charts, review her MRI, and get a neurologist into the brain-trust mix tomorrow.

It's after 11 pm and I want to be back here (at the hospital) by 6 am to try to catch the oncologist when he makes his rounds tomorrow. They say he comes early, around 6:30. Ah yes, well the early bird gets the worm, so they say.

Flower Power

2010-03-01T18:00:00.000-08:00

On my way out to my truck the other rainy day, headed for the hospital, I noticed a single yellow and red tulip pushing out of the ground by the white picket fence in our front yard. The tulip was stunted and its leaves were bug-eaten and abused by our gardener's weed-eater, but it was colorful and bright and it brightened my day and reminded me of a story told to a group of artists at Huntington Lake by local artist, Margaret Hudson.

Margaret told of how, following the suicide death of one of her sons, she had spent a good deal of time fighting depression. She'd taken a long walk in the woods one late-winter day, and the woods had been damp and the trees had not yet emerged out of winter hybernation, and as she was coming out of the woods she encountered a single flower pushing up out of the humus of a dead and decaying tree. That single flower, she said, was a revelation. Margaret paints a lot of flowers.

Our across the street neighbors (we live in a cul-de-sac) Linda and Terry, came over this afternoon and weeded Sue's flower beds out front. Linda is a flower person, too, and she and Sue both have an affinity for sweet peas. Linda has been surreptitiously leaving flowers near our front door in singles and bunches and pots for Sue's and our enjoyment. Here is a picture of a single camelia Linda left by our clay statue of Saint Francis of Asisi. The Saint Francis sculture was made by Margaret Hudson's Earth Arts Studio.

Yesterday colleagues of mine from Kings View Corporation sent a beautiful bouquet of flowers to Sue. We have both been getting a tremendous amount of enjoyment from them.

Flower power has a nice alliteration. But there really is a certain power in a flower. Flowers are like a song you can't resist singing. A flower, or a bouquet of flowers, is like a beautiful, smiling face you can't resist smiling back at.

Not TB, Grandma G

2010-03-01T06:55:00.000-08:00

A couple of days ago Grandma G posted this comment question:

"TB, or not TB? That is the question."

According to one of the doctors who saw Sue yesterday, the first phlegm test they ran came back negative for TB. They have to get two more negatives before they move Sue out of the isolation room. But for now, it's looking like it's not TB, Grandma G.

I'd like to meet you someday, Grandma G. You crack me up. You also sound like a really nice lady.

If I Had A Button

2010-02-28T22:28:00.000-08:00

There are a lot of people in the world who feel powerless over their situations. Imagine children living in homes where abuse occurs. Imagine people in disaster zones, like Haiti, or more recently in Chile. Imagine young people who live in under-developed countries where resources and jobs are not only scarce, there simply aren't any. How will they live? Criminally insane people and jihadists come from the likes of these.

And then there are the chronically sick. Lately Sue's been experiencing chronic pain. You get tired of being sick, and you get tired of being in pain, and you get tired of feeling powerless, and then wierd things start to happen. Sometimes this feeling of powerlessness leads to despair. Sometimes it leads to anger. In Sue's case, she wants a button to push. The way she put it last night, and again this morning, was something like this: If I had a button to push, I'd push it.

In her case that's a double entendre. It's frustrating, and it makes her mad, that she can't get her pain medications administered on time while she's in the hospital. Even when she asks for them they don't get timely administered. Sometimes, in hospitals, they will give you a little morphine pump that hangs on your I.V. stand and it has a little red button you hold in your hand and can push every so many minutes to self administer your pain meds. Sue wants one of those, but so far they haven't given her one.

But the other sense of the button-to-push double entendre is more ominous (and here I specifically use the word "ominous" instead of "sinister"). Here we are talking about a Dr. Kevorkian, a.k.a. Dr. Death button.
I understand this sentiment of wanting a button to push, and I've always agreed with Dr. Kevorkian's assertion that "dying is not a crime." Obviously not everyone agrees with this assertion, because the "good" doctor served eight years in prison for the crime of assisting terminally-ill patients expedite their own death. He assisted 130 by his own account (see http://en.wikipedia.org/wiki/Jack_Kevorkian ).

So we dealt with these very real sentiments as constructively as we could by co-writing a new verse to the Hammer Song (written and sung by Pete Seeger and later sung by Peter, Paul and Mary, "If I had a hammer, I'd hammer in the morning etc." We now call it "The Button Song" and we had a silly good time singing it in Sue's isolation room this morning.

If I had a button,
I'd poke it in the morning,
I'd poke it in the evening,
And never let it out of my hand,
I'd poke out mor-or-phine,
I'd poke out i-ice-cream,
I'd poke out the love between
Our doctors and insurers,
All over this laaa-aaaa-aaa-and!

P.S. When looking for a YouTube version of the hammer song, I came across this gem:
Hammer Song, by Obi

He Came To Take Her Away Tonight

2010-02-25T23:06:00.000-08:00

The past few days have been a little scary and emotional. Sue's had a lot of anxiety about her loss of strength and what has appeared, quite frankly, to be the end of this age -- or at least for her. We've all been coping with it. Sue's had a steady stream of visitors, calls and cards, all of which picked her spirits up.

Valerie and I did not know what to think this evening when we arrived at Sue's room to find the door closed with a bright orange "droplets precaution" sticker on the door, and a table of masks, gowns and gloves outside her room. The nurse told us masks were mandatory for all visitors. Shortly after we went in Dr. Singh stopped by and gave us the good news and the bad news. The good news is that, while Sue is very sick, he believes she will recover from this and recover her strength. The bad news is that he thinks she may have tuberculosis. Dr. Singh says that the internal infections from TB could account for her loss of strength and general weakness. Her symptoms are consistent with this diagnosis, and the recent scans show lesions in the upper lobes of her lungs. Dr. Singh indicated that pneumonia would normally accumulate in the lower lobes, not the upper lobes. They will do more specific testing tomorrow.

This is potentially bad news also for those of you who have visited Sue, as well as the 180 kids she recently taught and everyone who has been in contact with Sue over the past several weeks. Since this diagnosis is preliminary and not yet confirmed, Dr. Singh is not wanting to publish it. However, I think it only fair to inform those who have visited or who might. If the diagnosis turns out to be TB, Valerie, Jessica and I will each get TB skin test, and you can be sure I will inform you at the earliest confirmation of a TB diagnosis. Dr. Singh did not discourage us from visiting Sue with proper mask precautions and handwashing, but he thought it prudent to caution those with weak or compromised immune systems to avoid visiting at this time.

As an additional precaution, they moved Sue to room 319 in the main wing, which is an isolation room with a self-contained circulation system. You can see down into the chapel from her window.

The visit by Dr. Singh this evening was encouraging to Sue. She was visibly energized and animated just to know someone thought they knew what might be wrong with her and that it might have a cure. (She even responded well to the cancer diagnosis when it was dropped on us last May, because then at least her ailments had a name.) When the burly young man arrived at Sue's room at 9:15 this evening to transport Sue to room 319 he came into her room and announced: "I've come to take you away." Sue, who'd spent the last two days expecting God to come and take her away replied to the young man: "You don't look like I thought you would." Her face was all smile at his puzzlement at her irreverant humor. Valerie and I both got it, but it went over his genial, angelic head.

Where She's At

2010-02-24T08:56:00.000-08:00

Sue's in room 502-1 at Saint Agnes Medical Center. She has her cell phone with her.

Gray Day

2010-02-23T12:30:00.000-08:00

In our living room we have a high, half-circle window with no window covering. It has a decorative window-pane divider that looks like a rising sun with sun rays radiating upward and outward. The window faces east, so in the morning when the sun is rising and sunlight is flowing full through the "sunrise window" the room is flooded with exceptional light. Except not today. Today is a gray day.

Outside the sunrise window the sky is gray, and the tree in the front yard is lifeless and barren. That tree has been dying by degrees since before we bought this house. Every year there is a little more terminal die-back in the wood. This year the tree is full of mistletoe that sprouted last summer. Mistletoe is a parasite that reminds me a lot of multiple myeloma.

Sue's myeloma is like a parasite, sucking the life out of her. She's weaker by the day. Yesterday she was shuffling around with Connie's Winnie Walker, but had trouble transitioning from the walker to a chair or a toilet, and then getting back up was a major production. I've installed as many assistive devices as I can -- raised toilet seat, grab bars, shower chair. But today Sue can't even sit up in bed by herself.

Looking out at the sky through the sunrise window, I see the gray, and I feel it. I know the sun will shine through that window again, but I'm not sure if the tree is going to make it through another year.

Do What You Wanna Wanna Do

2010-02-22T10:00:00.000-08:00

This week I started studying in earnest for the general contractors' license exam. You might think I have enough credentials, with an MBA, a JD and a real estate broker's license. True enough. But this isn't about the money or needing something else to do. This is about doing something I've always wanted to do. From an early age I've dreamed of building certain things and by George, I intend to build some of those dreams if I can.

This all came to a head for me a couple of weeks ago. A 50 year old guy from our church, a guy who worked with me as a paralegal and property manager for four years, suddenly up and died. Massive heart attack. Boom! He's gone.

Later that week, Sue was cleaning up some papers and filing them in her little file box and she stopped, pulled out a file and started weeping. What's wrong? I asked. She held the file out to me. It was titled: Hikes I Want To Take. It was filled with cut-out magazine and newspaper articles about hikes -- mostly local but some in exotic places like Switzerland, Hawaii, Ireland etc. We haven't talked a good deal about it, but we both sort of know that Sue's hiking days might be over.

So for those of you who still have your get up and go, you might want to get up and go. Dust off your files of dreams and, like the Mamas and the Papas sang, go where you wanna wanna go, do what you wanna wanna do.

Oh Snap!

2010-02-21T19:30:00.000-08:00

Sue has read about or heard about a lot of people with multiple myeloma who've suffered broken bones. The myeloma cells eat away your bones and weaken them, making you susceptible to breaks. So she's had a lot of anxiety about that.

This morning we were getting ready for church. Sue got up from putting her shoes on and immediately fell. We both heard a big crack and Sue lay on the floor clutching her ankle and crying. We both thought she'd broken her ankle. For Sue it was the one thing she'd anxiously dreaded. For me, it was just a sickening, helpless feeling.

When Sue got composed I picked her up and put her on the bed. She's as light as a feather now (big feather). After we recovered from the shock of thinking she'd broken her ankle we calmed down and realized it seemed more like a sprain. Now that the day has passed we are pretty certain it is just a sprain. The ankle is a little swollen and a little sore, but Sue can support her weight on it and it does not have any discoleration.

The combination of pain in her upper back and pain in her ankle and general pain of neuropathy caused Sue to go back on the Dilaudid (morphine). It also dulls the pain of anxiety.

Who Pneu?

2010-02-20T22:49:00.000-08:00

Sue's been sick and mostly bed-ridden for the past week. She's been very tired, easily sleeping 16 hours a day, and she's had a nasty, deep, rattling cough. Thursday the local doctor put a name on her pneu-est ailment: pneumonia. Who pneu?

Sue's neuropathy is getting worse, not better. She's very unstable when walking. Connie Freeland has loaned Sue a souped-up rolling walker with hand brakes and a padded chair. It's a "Winnie Walker." I'm going to install hand rails in the bathroom and shower tomorrow. Remember Melanie, the singer? "Don't go too fast, but I go pretty far." Well Sue don't go too fast or too far. And Melanie rode her bike or roller-skated -- she didn't drive no car. But Sue wants a new car. I am presently leaning toward a power wheelchair.

The local cancer doctor wants to put Sue back on total disability from teaching. She has a follow-up appointment with Dr. Wolf in San Francisco on March 5, and I expect he will concur.

The going back to teaching thing lasted three weeks before the pneumonia hit. The staff at the middle school Sue got assigned to were terrific. The kids were horrible. They were like sharks who smelled blood in the water. They were like predator cats, sensing a weak animal (Sue) and going for the kill.

Aside from all that, everything is hunky dory.

Knocked Back Down

2010-02-14T22:50:00.000-08:00

I've taken a break from blogging this past two months. I've been depressed and not eating right nor exercising. Nor have I felt like writing.

Sue had her stem cell transplant in September, then had a relapse in December and had 12 sessions of radiation specifically directed to eradicate a pocket of active myeloma cells in in lower back. Some of you wrote to caution against radiation. While we felt that there really was no alternative to radiation for eradication of the myeloma cells in her thecal sac area, it is apparent that the whole course of radiation treatment has caused a lot of damage over a short period of time.

During and following the course of radiation Sue's doctor also had her taking the steroid dexamethasone. She's been backing off that stuff and will stop next week. The steroids have her face all swollen up and she has a chubby chipmunk-cheek look about her face. The steroids may also have contributed to a rapid decline of Sue's health.

Prior to and during the radiation and continuing after the radiation through today, Sue has experienced a significant decline of muscle strength and muscle mass. She is weak to the point that she has difficulty getting out of a chair, difficulty getting into or out of a car, and difficulty walking -- especially up hill or up stairs. She also has trouble with her balance, and she has fallen a number of times. Additionally, she's lost a lot of weight. She is down to about 100 lbs. Pre cancer diagnosis -- ca. April 2009 -- Sue weighed about 140 lbs. When I first met her, about 30 years ago, she was about 115 lbs. She was a little thin following the stem cell transplant, but she's lost so much weight in the past two months that her legs look like tooth picks and she has very little body fat. Her skin hangs on her in several places like elephant skin, and she has the gaunt appearance of prisoners of war who've been on near-starvation diets.

Worst of all, her neuropathy in her feet has intensified and creeped up such that now she has numbness, pain and tingling from her knees down. This past week she's had a disturbing pain in her back between her shoulder blades accompanied by numbness of her finger tips. We are hoping this isn't another relapse with active myeloma cells again.

We don't know what has caused the muscle weakness, loss of muscle mass and the increased neuropathy. Some say it is the steroids; some say it is the radiation; some say it could be from the nerve root damage caused by the myeloma pre-radiation.

Sue's general decline of health in the past two months has been accompanied by a general decline of energy for the daily tasks of living. She is very tired and easily falls asleep at night and seems to need 10 to 12 hours of sleep.

The only bright spots since December are that the lower back pain Sue was experiencing pre-radiation seems to be resolved and Sue has stopped taking the Dilaudid (morphine) that had been prescribed for her pain. Getting off the pain killers has given her a better grasp of reality and brought her a little closer to her pre-chemo mental acuity.

Aside from these bright spots, this past couple of months has seemed a bit like a death watch. That's probably overstating the grim reaper's case, but that how it has seemed. For the time being we are both running low on optimism.

Don't want to end on a downer note. We're finding some inspiration in the winter Olympics. One can only imagine the work that goes into the pursuit of a single Olympic medal. It isn't just the winners who have been in pursuit of that medal. A lot of effort goes unrecognized on the medal stand. Every athlete who trains hard and competes with her best effort is a hero in my eyes. I'm giving the same accolade to the cancer warriers who fight hard; some get the prize and some don't. But they're all winners and heroes in my eyes.

Jessica and Luke Host Christmas Dinner

2009-12-27T23:59:00.000-08:00

Luke came to Fresno for a visit.

So we put him to work right away.

Practicing working in the kitchen together with Jessica.

They did get some occasional input from Sue.

But not much.

Jessica cooked the turkey, the potatoes, the gravy,

the cranberry relish, the jello, and the vegetables.

And Luke helped. He cleaned the turkey,

put it in the oven, took it out, carved it, and

said the blessing for the meal.

Valerie set the table and made the salad.

And we're talking first class all the way.

The elders sat and enjoyed ourselves.

Sipped a little wine and encouraged the dinner hosts.

And it all came together without a hitch.

Maybe Luke and Jessica will host Thanksgiving in

Colorado Springs next year?

Joyful Christmas Morn

2009-12-25T14:20:00.000-08:00

2009 was a hard year, but we have a lot to be thankful for. This Christmas morning we had sunshine and blue skies, good friends and family, good food spread over the Christmas table, and a honkin' big bottle of brut champagne. Here's a few snapshots from our joyful Christmas morn.

Red and greeen girls with red and green surrogate mom, Cindy.

Christmas presence. Two peas and a pod.

Love around the table. Family, friends and food.

Who could ask for more?

Similar haircuts, similar smiles, similar devious natures.

Simlar black and red outfits. Maybe they're related?

Dr. Woof inspects the sedated Christmas scene.

We were young, once. But that was then, and this is now.

Treed up.

T'd up. Mamosas and fire-hot eggs.

Now that's a California Christmas!

When It Rains

2009-12-23T15:14:00.000-08:00

You'd think having cancer for a year would garner one enough attention. But some people seem to like a lot of attention. It's not as if Sue wasn't already getting enough attention from Doctors and other medical professionals. Still, that is her car, and that is her in the driver's seat, and that is a fire truck and a police car and Sue was interviewed by paramedics as well as the policeman. And that is the ambulance that took Sue to the emergency room this morning, where she was attended by doctors and nurses and x-ray tecnicians and such. And that is me dressed for the office Christmas party I didn't attend, and Valerie took the picture and also didn't go to the Christmas party.

However, the Madera Management Company office Christmas party traveled to Fresno and we had a festive exchange outside the Saint Agnes Medical Center emergency room.

Sue did her very best to take out the electric service boxes that control the lights at the First and Herndon intersection. She got the first one good, but the second box was a little instransigent; It turned out to be on a concrete base. Sue's car smells like gunpowder now from the driver's side air bag deployment. The car also looks a little shorter today than it did yesterday. And a little dehydrated.

Sue 's back home now. I think she'll recover. I have my doubts about the car making a full recovery.

What Good Am I?

2009-12-13T12:32:00.000-08:00

Sunday December 13, 2009. University of California at San Francisco. Sue's back in the hospital here, and I am reacquainting myself with some of my old friends, like Ms. Blood-bot. I said I was done blogging but as they say, never say never.

A month ago Sue had scheduled a routine follow-up exam with Dr. Wolf for Friday, December 11. It turned out to not be routine. About a week ago Sue started experiencing pain in her lower back again. By Thursday night Sue was experiencing extreme pain in her lower back and increased neuropathy pain and weakness in all four extremities (feet and hands). She was discouraged, in a lot of pain, and emotionally wrought.

Until recently Sue had been doing very well, so I booked one of our favorite Christmas vacation spots, the Grand Hyatt at Union Square. Union Square at Christmas is usually festive. This weekend it was rainy and cold. While we managed to squeeze in a nice late dinner Thursday night with David Carico and his friend, Rhonda, at Zuni's Cafe on Market Street, Sue was uncomfortable the whole evening. Sue did not sleep much on Thursday night. She paced around and cried a lot. Some of the crying was from the pain, and some was from the emotional stuff, mostly unspoken and inferred by me: Why me? Why now? I was getting better. I was planning to go back to work in January and get back on with my life. I can't keep doing this. It isn't fair.

So on Friday she was also quite exhausted, both physically and emotionally. As we sat in the exam room at 500 Parnasus, waiting for Dr. Wolf, a young woman walked by with an older man. Normally the exam room doors are closed, but this time it was open. The young woman looked at Sue, stopped, backed up, approached the room and said, to Sue, "You're my oh my myeloma, aren't you?" My Oh My Myeloma is Sue's blog "handle." The young lady, I'll call her "SFL" for San Francisco Lady, had recognized Sue from her blog. SFL had been reading myeloma blogs because her father had been diagnosed with myeloma. SFL's father had a stem cell transplant at UCSF just after Sue had hers, and so Sue's blog (and mine) about her STC experience was of particular interest to SFL. SFL's father doesn't speak english, so she has been his primary assistant through all of his medical treatments.

Sue was delighted and encouraged by our brief encounter with SFL and her father. We had but the briefest hint of the struggles SFL was going through. She was in college at another UC campus, she'd said, and it was hard for her to concentrate on her studies. Further, she really didn't have anyone to talk to about her situation. SFL is from a private family and from a private culture where talking about such things is not usual. Just the day before she had decided to start a blog.

We have been extremely blessed by the many caring friends we've encountered on Sue's cancer journey. Our blogs have brought us in contact with many good people outside our normal circles. We've developed friends and prayer partners throughout the world. You blog readers have been a community for us.

Sometimes when you are knocked down you think thoughts like, "I'm broken. My life is over. What good am I?" There are times of experiencing sadness and loss. We had prayed for God to show us what good could come from Sue's cancer experience, that is, what good we could do.

We don't think our encounter with SFL was a chance encounter. We think it was an answer to our prayer. SFL's blog is titled: A Daughter's Perspective, and can be found at:

http://dadsmyelomajourney.blogspot.com/

I invite you to read SFL's blog and then to join Sue and me in being in community with her. I specifically invite you to pray for SFL and her family.

Gone Fishin'

2009-11-14T01:43:00.000-08:00

When Sue was diagnosed with cancer last May she started blogging to inform her friends and family and cancer family about her treatments, her prognoses, and her needs. She suggested that I blog about my perspectives regarding her cancer experience. So I did. I blogged for six months under this blog title --The My Wife Has Cancer Blog.

While she still has some healing to do, Sue's better now, and there's not much to write about on this blog. She's very much alive, and this blog is dead. I got hooked on blogging, though, so I'm starting a new blog called The Fisher's Line. And if you care to read it, it can be found here:

http://thefishersline.blogspot.com/

I thank you all for following this blog, and especially for your prayers and concern for Sue and our family. I've enjoyed getting to know some of you better through your comments and by following your blogs.

If you have been reading this blog because you have cancer, or because someone you know has cancer -- particularly multiple myeloma, and you want to know how all this ends -- or if you are concerned that Sue's cancer may kick up again -- in which case I'll probably start blogging about it here, you can either click the "Follow" button at the top of this page (if you are a member and if you are logged in), or the "Subscribe To" button at the bottom of this page, to be advised of any future posts. Remember, though, no news is good news on a cancer blog.

If you wish to dialogue with me about your cancer, or about our experience with Sue's cancer or her treatments, or any other subject of interest to you, please feel free to email me at:

thefisher@comcast.net

For now, like Louis Armstrong and Bing Crosby in their famous song (click the link for the song), I'm Gone Fishin'.

Follow Your Dreams

2009-11-09T14:04:00.001-08:00

One time I had dinner at the house of a man who loves to listen to Rush Limbaugh. “Do you listen to Rush?” he asked. “I’ve heard his show on a few occasions, but I don’t listen to it.” I replied. “Why not?” he pressed. “Because I find him to be mean-spirited,” I said. I really don't have time for negativity, or for dream-bashers.

There are lots of choices in this world in terms of who or what you can follow. You can “follow” talking heads, like Limbaugh, “follow” sports teams, “follow” certain shows on t.v., and “follow” your favorite blogs. This blog even has a few faithful followers.

The 1947 broadway play, Finian’s Rainbow, is playing again on Broadway. The show features a song called Look To The Rainbow which features this chorus: “Look, look, look to the rainbow. Follow it over the hill and the stream. Look, look, look to the rainbow. Follow the fellow who follows a dream.” (I believe it's author, Edgar Harburg, also penned Somewhere Over The Rainbow.)

For the past 20 years or so there's been a coffee cup on my desk at work with a broken handle and a picture of a rainbow and the words "Follow Your Dreams." The cup holds my pens, pencils and letter opener, so I look at it multiple times a day. Over the years I've tried to be true to that motto. About four years ago Susan and I had an opportunity to follow another dream, that of co-owning a small resort at Huntington Lake with some of our friends.

Lakeview Cottages is a seasonal resort. Every fall we have to board up the cabins and winterize them to withstand the snow and freezing temperatures that inevitably blanket the high Sierra Nevada mountains. This year Tom Curwen, an annual summer guest of the Cottages and a writer for the Los Angeles Times, wrote a story for the Times about closing the Lakeview Cottages for winter. His story, "An Elegy For Summertime," is personal and poetic, touching on Sue's cancer and how fragile and uncertain life can be. There is a companion audio slide show by Times photographer, Mark Boster, titled "Buttoning Up."

Life really is fragile and uncertain. We don't have forever to do what we have to do, or what we want to do, or what we're called to do. Follow your dreams. And if you follow someone, follow someone who follows a dream.

Is There Another Way?

2009-11-03T06:25:00.000-08:00

Often when Sue and I are hiking in the back country of the Sierras -- particularly over unfamiliar terrain -- we'll be trying to look and feel our way through, trying to find the best path to where we're ultimately headed, and we'll come to a place where the path ahead looks difficult, dangerous or even impossible. When that happens we are faced with a choice: forge on, or retreat. Always the underlying question is: Is there another way? Or maybe more correctly: Is there a better way?

Usually, though not always, there is another way. But what constitutes a better way? One that's less risky? Shorter? Easier? More scenic? More memorable? Usually the easier way is less risky, but also less scenic and less memorable. Sometimes you really don't know which way will be better, and once you pick one route over the other(and unless you later traverse the other route) you may never know whether the choice you made was the best choice.

People, like Sue, who are faced with life-threatening medical conditions are often faced with this question. Sue and I had to decide whether a stem cell transplant was the best way. There were alternative routes. But once we chose that STC trail, or at least once we were committed to it, there was no turning back.

It's been a hard trail -- especially for Sue. For a while there she was hecka sick, and majorly distraught and discouraged. But it's been a memorable trail (though there are parts of it that Sue doesn't remember). The big ups and downs, great victories, the high mountain passes, as well as the big valleys, the hardships and trials, tend to etch their circumstances into our memories. The hard trails are like that. The unusual trails are like that. And this has been the most unusual trail of our lives so far.

Did we choose the best route? Would Sue have been just as well off, or even better off, if we had not chosen the STC trail? We'll never know. All we know now is, this is the trail we chose; this is the trail we're on. So we're making the best of it.

Oh sure, like every hike we've been on, there's been pain and irritation. The pain of sore muscles, tired feet, blisters. The pesky mosquitoes and gnats that dog you on the trail. The tiredness at the end of the day, hoping the climb will end, hoping the day's campsite will appear so we can throw down our packs and rest. But we're waking up every day and giving thanks for another day on the trail. For another sunrise. For another scrambled egg and bacon burrito eaten over an open fire. For another breath of pure mountain air. For another beautiful vista. For the awe that fills us every time we are on the trail.

And we are thankful for our hiking companions. For each other, yes. And for each of you who have walked all or part of this trail with us.

Is there another way? Well, maybe there was. But not now.

Is there a better way? I don't think so.

We Gather Together

2009-10-25T11:33:00.000-07:00

Last weekend I enjoyed five "gatherings" outside around open fires; two night-time campfires; two early morning fishermens' warming fires; and one mid-day trout-fry fire. Though the gathered few were somewhat disparate in our faith views and practices, each of these "gatherings" was a worship session of sorts. For example, the first night fire was started by my buddy, Mark, in the campfire ring by his cabin. Five of us gathered around to cook hot dogs on marshmallow forks, sip wine and share a deep conversation that ran from politics to fathers. And through it all we each were held in wonder and awe at the handiwork of God with which we were surrounded.

One of our gathered group, Mark Boster, is a professional photographer. He had come to our gathering from an assignment taking fall pictures in Yosemite. Somehow the subject of the well-known Yosemite Chapel came up. At 130 years of age, the Chapel is allegedly the oldest structure in Yosemite National Park. The Ken Burns television series on the National Parks, which aired recently on PBS, noted that John Muir thought it somewhat asinine to build a church in one of the greatest cathedrals in the world, though, according to a May 2009 article by Lynn Arave, Muir did speak there on at least one occasion. We might even assume that Muir worshipped there occasionally. Galen Clark was another Californian who, like Muir, sought to protect Yosemite. Clark put it this way:

"It seems almost sacrilege to build a church within the portals of this the grandest of all God's temples. It is like building a toy church within the walls of St. Peter's Cathedral in Rome. But it will clearly show the contrast between the frail and puny works of man, as compared with the mighty grandeur and magnificence of the works of God, and I hope it will do good."

I pondered these thoughts this morning while sitting in my home church, North Fresno Mennonite Brethren Church. We were gathered in a group of two hundred or so church brothers and sisters, surrounded by sedate tan walls, listening to Gary Wall, our district minister, preach (among other things) about the importance of gathering as a community.

Do we need the buildings of the local church to discover the mighty hand of God? Not at all. God's own creation will be witness enough. Do we need the gathered body of the local church to worship God? Not at all. We may walk alone in the wilderness -- or be together only with the wild animals in one of God's own grand cathedrals -- and have a most excellent time of worship. But what of being community?

It is for community that We Gather Together. One can sing a most excellent melody alone, but, aside from multi-track recording, one cannot sing alone in four-part harmony. However, it isn't solely for the harmony of music we gather in community; We gather together because we are social beings made whole only by the blessings of being in community. Sue is lifted up and blessed, and healed, by our community of church friends.

Whether we gather with a thousand faithful in the Crystal Cathedral in Garden Grove, California, or we gather as a group of five around a campfire at Huntington Lake, being together in community is a significant part of what God intended for us. American Public Media has presented a special one hour Thanksgiving program, narrated by Garrison Keillor, titled "We Gather Together." Why don't you gather together with several of your community of friends and listen in? Click the link and then click "listen to the program."

Surrogate Mother

2009-10-24T09:32:00.000-07:00

Sue's mother, Peggy, passed away around 1990. She died at the age of 59 of cancer. We had two little girls at the time, ages 2 and 1.

But Sue wasn't ready to be without a mother. Lucky for her, she had a really good aunt, Aunt Audrie, who stepped in and became something of a surrogate mother to Sue. After she graduated from college, Sue took a job as a quality-control specialist in a garment factory in Los Angeles. During that year Sue lived with her Aunt Audrie and Uncle Russell in Hermosa Beach, California.

Sometimes when you're sick your mind takes you back to yester-years. You remember being sick as a kid, and how your mom took care of you. Now, even though you're "all grown up," sometimes when you're sick you just want your mommy.

Aunt Audrie is one of the most gracious, kind and generous people I have ever met. She calls Sue periodically and I have overheard bits and pieces of the conversation. Sue loves her Aunt Audrie, and several times recently I have heard her choke up a bit on saying goodby to her.

Yesterday Sue's Aunt Audrie, together with Sue's Uncle Val and his wife, Betty, stopped by for a visit. They were on their way back to Southern California following an elderhostel trip to Carmel. We shared a dinner meal with them. Our neighbors, Mark and Cindy, also joined us for dinner. They are surrogates of a different kind. We refer to each other as "chosen family." They've been like an extra mom and dad for our daughters.

For the past two weeks Sue has felt crummy. She's had a cold and she's been a little depressed -- or anyway a little sad. But yesterday was a really good day. She felt good and her spirits were buoyed. It's amazing how much healing power is in a "mother's" touch and presence. It's amazing how important it is to be surrounded by family, even if some of them are surrogates.

Shades of Sadness

2009-10-10T07:27:00.000-07:00

On Monday of last week I left Fresno at 6 a.m. to drive up to Huntington Lake to meet representatives from Southern California Edison and the U.S. Forest Service about taking down some hazard trees to which SCE has attached their power lines. When I hit the country roads north of Fresno with a good view of the mountains it was still dark in the valley, but a pale white light -- what we fisherman call "first light" --was creeping up behind the mountains to the east. The mountains were black, and the only thing ascertainable was the ridge line behind which, slowly, the white light began to illuminate the landscape; First giving gray form to mountains and trees previously hidden in darkness, then, by degrees, giving up details.

As I got up to Pine Ridge, about 4,500 feet in elevation, I had a good view of the foothills and valley below. Low-lying fog filled the areas between the foothills and spilled out in thin sheets across the valley. As the sun rose and the light intensified; it changed the hues of the fog from gray to white to pink to orange, giving the foggy landscape below a melancholy, soft-edged watercolor-painting look.

The temperature at Shaver Lake was 30F, and steam was rising off the surface of the water as if the lake was a huge simmering cauldron. By the time I got up to Tamarack Ridge the outside temperatures had dropped to 20F. There was a fair amount of ice on the road. Icy mountain roads can be dangerous. I slowed way down so as not to become a statistic.

Fog and cold are two things that can slow you down. And while they have the capacity to invigorate, fog and cold also have the capacity to lock you up in unmoving, frozen gridlock. Let's be dead-on honest -- fog and cold can depress you, and if you aren't careful, they can kill you.

Sue was diagnosed with her cancer around May 1, following four months of increasingly debilitating pain. She is now in her fifth month of grinding medical treatment, so this whole process of having cancer, being diagnosed and being treated is coming up on a year now. And while she has, for the most part, maintained an amazingly good attitude throughout the whole ordeal, there have been times when sadness has settled over her like a cold fog. It's understandable. It's almost inevitable, or anyway, it's common.

In Sue's case, the neuropathy has been a constant source of physical pain. At one of her recent appointments with the local oncology doctor, the doctor told Sue that her neuropathy should have resolved by now and, since it hasn't yet resolved, maybe it won't. My mom always told us kids that "honesty is the best policy," but I'm not sure that's always the case. After Sue had that appointment with her doctor, I thought I noticed more sadness than usual.

I've been depressed myself at times, and I was worried that depression may have set in on Sue. True depression is different than just being sad, and, unaddressed, it can be as dangerous as an icy mountain road. Sue denied being clinically depressed, but at my urging she did consult her doctor about it. The doctor thought her sadness was normal and didn't seem overly concerned. I don't know clinical depression from tropical depression. But I know a sad person when I see one.

People often misuse the phrase "I'm depressed" to mean they are sad about something. It's used kind of fliply. But no one wants to cop to really being depressed in the clinical sense. It seems that people are stigmatized by the idea of depression, like it is some kind of a bad thing that you have done or you are somehow defective if you get it. Recently (August 25, 2009) Scientific American ran an article titled "Depression's Evolutionary Roots" suggesting that depression is not a malfunction of the brain, but that it is actually a useful survival adaptation of the human species. The authors of the article cite research which indicates somewhere between 30 to 50 percent of people in the U.S. have at some time met the current definition of "major depressive disorder." The authors conclude: "When one considers all the evidence, depression seems less like a disorder where the brain is operating in a haphazard way, or malfunctioning. Instead, depression seems more like the vertebrate eye—an intricate, highly organized piece of machinery that performs a specific function."

On this sadness versus depression question as it pertains to Sue, and even to me, I am in a bit of a dark fog. I can see some outlines in black against the first light. And as the light is beginning to intensify, the hues of the fog we're in are changing from gray to white to pink to orange, giving the foggy situation a melancholy soft-edged watercolor-painting look.

Power To Move Mountains

2009-10-07T07:17:00.000-07:00

Last weekend while "the girls" quilted a few of "us boys" did a little "man" work. We cut up some wood using chain saws. We spread some wood chips around using a golf cart and dump trailer. We split some wood using a hydraulic wood splitter. If you've ever split wood the old fashioned way and then split wood using a hydraulic splitter, you know the power of machines. It's awesome what a machine can do.

The guys who are going to mill the trees we had felled at Lakeview Cottages have a big machine, a John Deere tractor with hydraulic claws, that can move logs the size of mobile homes. That's me in the cab. Only the photographer knows for sure whether I'm really operating the tractor. But even if I'm not, it's the idea of the thing, that with a machine like that I'd have the power to lift a huge log and move it around like lifting a toothpick and waving it around.

And as I spent the weekend marveling at the power of machines I contemplated the notion of power. What has power to move things? And it occurred to me that, as powerful as machines are, we have at our disposal at least three things with even more power than machines.

With the water level going down for the winter the faces of the four dams at Huntington Lake are exposed. I rode my Yamaha 225 around a bit inspecting dams and lakebeds and old short-line railroad tracks and massive water pipes and huge turbines and just marveled at the work that was done to create this system of lakes and power generating plants. But it wasn't the machines so much as it was the power of an idea -- the power of imagination and vision, that moved this huge project from nothing to reality.

John Eastwood, an engineer who was a pioneer in dam building and hydroelectric project design, rode alone on a mule through the San Joaquin river watershed in the Sierra Nevada Mountains, envisioning a series of dams and hydroelectric power generation facilities at a time when no comparable system existed anywhere in the world. While he was given little credit for his ideas, and did not profit much from them, it was Eastwood's ideas and vision that really set everything in motion to move the mountains and capture the power of the water. Southern California Edison calls the emergent project, the Big Creek Project, "the hardest working water in the world."

Machines don't make ideas; Ideas make machines. So ideas are more powerful than machines. Ideas are in the mind, where another great power originates -- that of faith. I once heard a speaker say that every great champion has one thing in common; they all have faith (a strong and abiding belief that something will happen before there is concrete evidence to support it). These people have faith before they become a champion, that they can and will be champion. Faith is a driving force without which great things usually cannot be accomplished. Faith taps you into power beyond yourself. Jesus once said that " ... if you have faith as small as a mustard seed, you can say to this mountain, 'Move from here to there' and it will move. Nothing will be impossible for you." Matthew 17:20

One thing is still more powerful, or at least more essential. All the recent science fiction movies envision the horror of a world controlled by machines or computers. Great and powerful machines but lacking the one great power of which we humans all have the capacity. And here I am talking about love. Paul, the apostle, put it this way: " ... if I have a faith that can move mountains, but have not love, I am nothing." 1 Corinthians 13:2

Sue's slow recovery from cancer has relied on all of these great powers: the power of machines; the power of ideas; the power of faith; and the power of love. But without the latter, without the love you and we have given her, it's all for naught. Love has the power to move people, and really that's more important than moving things, isn't it? Be a powerful person today. Tell or show someone you love them.

The Fabric of Community

2009-10-02T20:42:00.000-07:00

Last night began the second annual quilters' retreat at Camp Keola. Last year a group of women from North Fresno Mennonite Brethren Church met there for an informal communal quilting retreat. This year they will be joined by women from Mennonite Community Church. It's quite a sight to see these ladies, young and old, with their projects spread out over numerous tables throughout the dining hall; Fabrics in every imaginable color and pattern, notions and sewing machines, clippers and pins. Tables of food and fruit and cakes and pies and cookies and snacks line the back wall, and coffee and tea are brewing all day and all night. All the while the ladies are working and carrying on the conversations of community.

The days at Huntington Lake now are clear and cool, and overnight temperatures dip into the high twenties. But the big dining hall is heated and as cozy as a large community teepee. I can imagine women and girls of the long-ago tribes sitting together cross-legged in their community teepee with their leather or bead or craft projects on their laps, contentedly working and humming and carrying on the conversations of community in the native ways.

Sue does not really have the energy for this yet. But she is there, among them, camped out in a canvas easy chair, wrapped in coats and blankets, with a hand-stitching project on her lap, listening and laughing and enjoying the comeraderie. And napping on and off. There is something healing about community. It's like an aromatic, warm balm.

Jessica is there, too. She's almost finished a dress and is starting a new quilt. Jessica needed help putting a zipper in the dress. Sue did not have the oomph to get up and show her how to do it, so Dotty showed Jessica. That's part of the beauty of community -- the whole village chipping in to help each other, to show the way, to teach and learn, to share stories, share a laugh, share a meal, and to share each others' burdens. For Jessica they are all surrogate moms and sisters.

It will be a busy weekend, but measured. Women creating beautiful quilts, sharing lives, making memories. Tom Hunter's song "Weaving" puts it like this: "We are weaving, weaving, weaving the future from the fabric of our past." These ladies are weaving the fabric of community, and it's a crazy, durable, strong, beautiful fabric .

The Good That You Have Done

2009-09-30T22:05:00.000-07:00

This week Sue and I have been watching the Ken Burns series on the national parks which has been airing on PBS every night at 8 p.m. PST. It's fascinating. One of the most interesting aspects of the series is that it highlights the many and disparate individuals who played pivotal roles in the creation of the national parks, which the Burns' series calls "America's Best Idea."

Stephen Mather was one of the most pivotal characters in the creation of the national parks, and in particular the National Park Service. A self-made millionaire who found his soul restored in the wilderness, Mather spent a good deal of his own money and devoted much of his life and energy to the creation and development of the National Park Service and the creation and development of our national parks. I have stood at Mather Point on the south rim of Grand Canyon National Park, camped in Mather Campground in Yosemite National Park, and traversed Mather Pass in Kings Canyon National Park, never knowing who Mather was and what he did. A number of the national parks have brass plaques honoring Mather which read:

"Stephen Tyng Mather July 4, 1867 - January 22, 1930. He laid the foundation of the National Park Service, defining and establishing the policies under which its areas shall be developed and conserved unimpaired for future generations. There will never come an end to the good that he has done."

This morning while going over a property management contract I was reminded of a recent "investigation" that was done on a former business partner and friend of mine, Mark D. This fellow showed up at my office one day out of the blue and started asking questions about Mark. Said he was an investigator. I was a little cautious until he explained that Mark had applied for a position with the City of Fresno and the investigator had been hired by the City to check on his background by interviewing former employers and associates. I truthfully told the investigator all about Mark, which was all good. Finally the guy asks me, "isn't there anything bad you can say about this guy?" And I told him no, there really wasn't. He told me he just had to meet this Mark guy because I was the tenth person who basically told him the same story. Super nice guy, super competent, great to work with, nothing bad to say. He said he didn't really believe the first two people who told him that, but by the time he got to me he was pretty much sold that it might all be true; Maybe there is a guy who really is a good guy.

This evening when I got home from work a lady named Kathy S. was just leaving after having visited with Sue. Kathy had brought some food for us too. She's one of the ladies who gave Sue the gift certificate for a pedicure last May (see my June 3 blog titled "Decisions Decisions"). We'd just finished a plate of Kathy's food when Connie and Steve F. brought enchiladas and other midwestern food delights. Connie brought food last week too. Connie and Steve have each had their own serious health issues and I am ashamed to say I never even sent them a card (though I truthfully thought about them both a good deal). These are but three of many who have humbled us with thoughtful, helping goodness.

Cards by the dozens, gifts and food and quilts and shawls and hats and scarves and visits, phone calls and prayers. Assistance with appointments and needs. Grater lights, gifts and prayers from people we've never even met. The list of deeds and doers is too long to mention. The good that you all have done for Sue has helped her maintain a remarkable attitude. She has at times been thankful to have experienced such an outpouring of love and goodness which, but for her cancer she would not have experienced to this degree; Thankful to have experienced having cancer, because of the good that you have done.

Harps In Heaven

2009-09-27T21:04:00.000-07:00

O.K. Needler, this is for you.

Larry Martens has been a fishing friend of mine for a few years now. He was our pastor at North Fresno Mennonite Brethren Church and I first got to know him in that capacity. I liked him as a pastor, but I like him even better now that he is retired. You know, for us sinners there can be a little strain when you're fishing with your pastor.

Last weekend Larry accompanied his wife, Kathleen, to Huntington Lake. Kathleen attended Margaret Hudson's annual art retreat at Camp Keola, and Larry and I fished. The fishing was really lousy, but the company was good. In the course of the day Larry told me about a dinner he had recently attended where the speaker was a man named Don Piper. Piper had written a bestselling book about his experience of being dead for 90 minutes and then coming back to life. While he was dead, Piper recalls spending time in heaven. The book is titled "90 Minutes In Heaven." I haven't read the book yet, but based on Larry's description of Piper's story, I definitely will read it. I do believe in heaven, I just am not sure where it is or what to expect when I get there.

Susan and I returned to San Francisco on Friday for a follow-up appointment with Dr. Wolf. Her numbers were good, she was mentally present and alert, and Dr. Wolf thinks she is recoving nicely. Friday was day plus-24. Dr. Wolf says she'll be about back to normal at plus-60, i.e. in about another month. Dr. Wolf is predicting Sue won't be seeing heaven for years. Note: The title of this blog is "Harps In Heaven" -- not "Harpers In Heaven."

On the subject of harpers in heaven, while we were in San Francisco we took a gift basket of appreciation to the staff of 11 Long. When we walked into the main lobby of the hospital, there was a harpist playing who plays in the lobby regularly. I intended to blog about her when Sue was in the hospital up there, but it never worked out. One time Dotty Warkentin, my favorite harpist, called me after I had spent some time listening to this hospital harpist, and I told her the hospital harping had caused me to think of her. (Actually Dotty called for Susan, but I answered the phone. Nonetheless, she seemed pleased to know I'd thought of her.)

Anyway, while Sue and I sat in the hospital lobby listening to the harpist play Bob Dylan's "Blowin' In the Wind" on Friday I thought, "you know, this is risky playing harp music in the lobby of a hospital." Harps, it seems to me, are the official instrument of heaven -- well, besides trumpets. It brought back a memory of a time when Valerie was quite young, possibly three years old, and we were passing a grave yard on our way to church, and Valerie piped up and said, "Hey, there's heaven!" Upon exploring this with her a little, it turned out that she'd added up that (some) people go to heaven when they die, and we'd told her that Grandma Freeman had gone to heaven, and she knew Grandma Freeman was buried in a graveyard, so she figured that graveyard we'd just passed must be heaven (or at least part of it). It all made perfect sense.

We made a quick turn-around on Friday and then on Saturday morning we headed up to our small corner of heaven on earth at Huntington Lake. Sue felt pretty good all weekend and walked around a bit, visited a bit, napped a bit. Here she is inspecting the stump of one of the five trees we had professionally felled last week. This tree quite possibly will not be going to heaven. It literally has a black hole in it's heart. Maybe that's why the tree was weeping constantly. (Really, there was a constant stream of water weeping out of the tree.)

It's sad to lose a big tree like this. We're going to have it milled into lumber and, among other things, we'll be making picnic tables from the lumber to serve the guests of our cabins. You know, in some ways it's like this with people. Life sort of saws you off at the knees and you have to make adjustments to continue to be useful in some other way than you were before. It's either that or just give up and join the Harpers.

Postscript trivia: What is the difference between a "harper" and a "harpist?"

ruoT yretsyM lacigaM

2009-09-24T10:54:00.000-07:00

Roll up, roll up, for the Magical Mystery Tour. Sue's medications were cut back significantly yesterday. Then, this morning, just like magic, she was back in her mind. Sort of like a magical mystery tour in reverse. I knew she was back last night at 2:00 a.m. when she wanted to get up for a snack. I asked her "when did Columbus sail the ocean blue?" By golly, she came right up with the textbook answer.

The medication cutbacks have already resulted in Sue experiencing mild symptoms of pain (mostly the neuropathy in her lower legs and feet) and mild nausea. We are all relieved to know her confusion of late has been medication induced, and is probably not the result of a physiological problem. Our local team of caregivers will be in earnest conversation over the next weeks, together with Sue and her doctors, about setting medication levels that deal with Sue's symptoms while not sending her off on another magical mystery tour.

Meanwhile, the love is back at our house and we are all on our own Magic Bus. But that's a trip to describe another day.

Common Ground

2009-09-23T23:49:00.000-07:00

The comments to my "Too Many Cooks" post are mild compared to some of the emails, personal "talks" and phone calls I have received. Did I hit a sore spot here? Apparently so.

What I have discovered is that there are a lot of people who have gone through a similar situation where a loved one is in need of medical care (and medications) and the nuclear caregiver family members (plus extended family and caring friends) are in some disagreement about how the care should be done. This, coupled with an already stressed family group, various disfunctions of communication and relating and problem solving, etc., has led, in many cases, to personal pain and relationship strains.

Thank you to those who have shared some of your painful experiences with me, as well as your concerns and insights. My post was not a clarion call of distress. Actually, I read the post to both of my daughters prior to posting it. Do they agree with everything I said? No. Will they ever agree completely with me? No. Do they know that I love them and that I am proud of them both? I'm pretty sure they do. I tell that to them often and it's one of the things I say that they do agree with as reasonable on my part. Is everything hunky-dory? Not yet, but that's o.k.

Was my post intended as a public trashing of those who disagree with me? Not at all. It was intended as an honest yet somewhat tongue-in-cheek look at a real situation we faced --which apparently is similar to situations some of you have faced as well. Did I own my own shortcomings? Well, some I did. This is, after all, my blog.

By the way, we (Sue, Jessica and I) did consult the local oncology doctor this morning and she has prescribed a significant cut-back of medications. Now where did I put my own pain and sleep meds? Ciao.

Cancer Cookin'

2009-09-23T18:30:00.000-07:00

As a counterpoint to my last "Too Many Cooks" post I have to mention this gem. Jessica found and purchased a Cancer Cookbook from the American Cancer Society. The book is creatively titled: What To Eat During Cancer Treatment. Notwithstanding the drab but informative title, it is a fantastic book. I recommend it to you if you are being treated for cancer or as a gift for someone you know who is being so treated. I only wish the food service director at the UCSF medical center, where they treat hundreds of cancer patients a year, would have used this book as a resource for providing food to the "guests" of 11 Long.

This isn't to say that the food served at the UCSF medical center wasn't good. I enjoyed it tremendously. Unfortunately, Sue, the patient, could hardly eat any of it. Nausea is practically a given with patients who've had a heavy dose of Melphalan (or other toxic chemo drugs). Diarrhea is also quite common. You would think a big hospital like UCSF medical center would have a special diet specific to the STC/BMT ward. You know, something like the Cancer Brat Diet.

Anyway, Sue's eating better now that she's home. Additionally, our team of cooks is working at getting on the same sheet of music. Or is that the same cookie sheet? Talk about mixed metaphors! We're getting together in some kind of sheet.

Too Many Cooks

2009-09-22T20:14:00.000-07:00

We are living our own version of Hell's Kitchen at my house this week. The problem is, as I see it, that Sue and I raised our girls to be strong, independent-thinking women. We also raised them to not be afraid to speak their mind. Now that Valerie turned 21, that's pretty much what we got two of -- strong, independent-thinking women who aren't afraid to speak their minds. Make that three if you count Sue. I'd also be a strong, independent-thinking woman if I were a woman, though, in my humble opinion, I'd be substantially more controlled about speaking my mind. Who'd've thought they'd turn those strengths against me, their great "tooter?"

Now if Sue were firing on all cylinders this would almost certainly not be an issue. But don't be fooled by the fact that she was discharged and is now at home; she's got a lot of recovering to do before she's firing on all cylinders. In fact we are all concerned about her mild state of confusion. What we are not in agreement about is what to do about it. (Note: We'll ask the local oncology doctor in a follow-up appointment tomorrow morning.)

The disagreements center principally around the administration of the multiple medications the various doctors have prescribed, and are exacerbated by our differences in communication styles. One of the daughters insists the meds be taken strictly according to the doctors' orders. Her take-charge approach has harkened me back to Al "I am in control here" Haig. The other daughter has inferred a sinister belief that my lack of strict adherence to the medication orders may be a subtle plan to off my wife, and/or that my failure to strictly document every medication administered by me may be a subtle plan to have my daughters off my wife by having them overmedicate her. The patient, herself, periodically wants to refuse some of the medications and insists on understanding the name and purpose of each medication -- four times a day.

During Sue's stay at the UCSF medical center, the nursing staff and doctors were fairly quick to acquiesce if the patient refused a medication. Such acquiescence is consistent with the UCSF Patients' Bill of Rights, and in particular the patient's right of "participation in decisions about treatment options, benefits, risks and alternatives including appropriate pain management." The UCSF patients' rights document states: "We respect the rights of each patient. We are aware that each patient has unique and diverse health care needs. We encourage a partnership between you and your health care team. And we encourage you or your designated representative to participate in discussions and decisions about your care, options, alternatives, risks and benefits."

Note here that "designated representative" in the last sentence above is in the singular, and the right of participation is offered to "you or your designated representative." Imagine the fiasco if our "team" tried to participate with the health care team at the hospital (or locally) in discussions and decisions about Sue's care. I am pretty sure that "designated representative" refers to the patient's designated agent for making health care decisions in the event the patient is incapable of making her own decisions. In Sue's case, that would be me. But it points out one of the important reasons for making a thoughtful Advanced Health Care Directive (Power of Attorney for Health Care Decisions) before undergoing significant medical procedures. Well, really, you should make one in any case -- just in case. Who knows when you, or your well-meaning "too many cooks" team might need it?

I leave you with these questions: 1. Are doctors gods whose pronouncements are universally what is best for the patient? 2. Are pharmacological solutions always (or only) the best way to heal? 3. Who should be in charge of making medical decisions if the patient is lacking mental competence? 4. In the continuum between total pain and total incoherence (and assuming the pain medication is the cause or a significant cause of the incoherence), what is the most appropriate level of pain medication?

[Postscript to my several pre SCT blog readers: You will not be out of the woods when you get discharged from the hospital, and you will not be back to normal. Sue pressed for and received an early discharge, but irrespective of when you are discharged you will need a lot of support at home. This will be particularly true if you develop mental confusion or cognitive lapses, which I am learning are fairly common post SCT -- and which are compounded by the medications which will be prescribed for you. In any event, you will need assistance with administration of your daily needs, including medications, food preparation, shopping, cleaning, transportation to follow-up medical appointments etc. Oh, and be sure to prepare an Advanced Health Care Directive.]

David Carico's Ridiculous View

2009-09-22T09:03:00.001-07:00

Maggie posted this question: "What is the 'ridiculous view' OF?"

Well, it's a view FROM this long porch perched on a hill above Tiburon.

It's a view OF the City from the north side of the Bay.

It's a view OF the Golden Gate Bridge from the north side of the Bay.

It's a view OF the Tiburon Yaght Club.

It's a view most of us have to take an expensive vacation to get. David's got it whenever he wants it. He's got it, oh baby he's got it.

Out and Out Doesn't Work

2009-09-17T13:00:00.000-07:00

There are people in the world who have an amazing capacity to serve people in need. They get in there and get dirty and do what needs to be done. How, or why they don't get tired and burned out serving that way is beyond me. There are some, and I'm not one, who are energized by such contact with people. Contact with needy people wears me out.

Sue and I have just had an interesting three weeks in our 30-plus year journey together. She was rendered quite helpless and needy and I was called upon to serve her physically and emotionally. I was tested a little bit. I was out of my comfort zone, but I think I did o.k. I was happy to do it for Sue. But for sure it's not my calling. Don't call me if you need that kind of ministering to.

1 Corinthians 12 indicates that we are all given different gifts, service to those in need being but one of many. My true spiritual gifts, I have discerned, are drinking coffee and going to meetings with people who are well enough to go home on their own power when the coffee and cake run out. I can lead a group discussion. I can also work with a chain saw or other piece of equipment all day. The closest I usually come to ministering to people is to take a guy fishing. I can sit in a fishing boat and "visit" with a guy all day and we'd not say more in total than some people can say in five minutes. Yet we'd come away from the experience feeling like we really connected.

On all but a few days of my time in San Francisco I took time out for me. Time to get some exercise and some air. Time to see something interesting and meet some people who didn't expect anything from me nor me from them. I got sufficient rest. I got in a little reading to feed my mind --I read the beautifully disturbing book "A Thousand Splendid Suns" by Khaled Hosseini. I took time to help David Carico move from one apartment to another. David's new apartment in Tiburon has, as Matt Friesen puts it, "a ridiculous view." I went to a Giants vs. Dodgers baseball game with Dave Friesen and Matt Friesen and went shopping with my daughter, Jessica. I actually worked a bit from my makeshift office in Sue's room, and blogged most every day. And every day included multiple times to get coffee and to contemplate and to communicate with the Great Grandfather In The Sky.

Now you'd think that, having done all that, and more, I didn't have much time to be with Sue or I didn't give much of myself to her. I beg to differ. A pitcher can only be poured out for so long without being filled up again. If you don't fill it back up, it runs dry and is useless to the thirsty. Further, who wants to drink stale water?

So if you are ever called upon to serve someone in this way, take some advice from me. Out and out doesn't work. Get filled and get fresh every day. Then serve.

Home Sweet Home Again

2009-09-16T19:56:00.000-07:00

When I called our daughters, Jessica and Valerie, to inform them to get the house cleaned up and wiped down because Sue was coming home, they panicked. You might have panicked too, given the grave reports of Sue's condition which I truthfully reported in previous blogs. You might have thought, as they did, that you weren't equipped to deal with such a sick person, that you wouldn't know what to do, that something bad might happen and that you'd have to feel guilty the rest of your life about having killed your own mom.

But we did come home, and things are working out beautifully; just beautifully. To be sure, Sue is still sick but she is much, much better. She is really, really happy to be home. And no, no, I am not inadvertently repeating myself. I am not a writer for the department of redundancy department.

Thankfully Sue has lots of good friend support here. Nurse Debbie came over the morning after we got home and "organized" the medications. Neighbor Cindy took Sue to get her blood tested this morning. Nurse Debbie took Sue to an appointment with the local oncologist this afternoon. Jessica and Valerie have been supportive and attentive to their mom, who is very, very happy to be with them. Lots and lots of people are on standby to help, and Jessica will get them organized. Yes she will.

Oh, and did I mention that we got home in time for Valerie's 21st birthday? She's posing with her birthday balloon from Mark and Cindy. The balloon is tethered to the infamous fence-sitting birthday pig. That pig is guaranteed to make you smile or even chuckle when it mysteriously shows up grinning from pig ear to pig ear and waving a balloon just for you. Heh heh.

Gone To The Mountains

2009-09-14T16:07:00.000-07:00

Most of you didn’t previously know that I am partly descended from the Blackfoot Indians, a group of tribes located in what is now known as northern Montana and southern Alberta, Canada. For this reason I have a particular interest in the history of and empathy for the plight of Native Americans, as well as a particular interest in civil rights and humane treatment of all peoples.

The Yelamu Indians once occupied the area now known as San Francisco. The Yelamu were one of approximately 50 tribes of Indians known collectively as the Ohlone tribes. The Yelamu territory included the area known today as Crissy Field, the place I’ve been jogging. They lived and thrived here in harmony with nature for several thousand years before the Spanish colonists arrived in 1769. Then, in less than 100 years the Yelamu became extinct.

Adam Johnston, an Indian Agent during the westward expansion of the United States, took it upon himself to interview a number of Indians from the disappearing tribes. In 1850, the year California became a state, Johnston interviewed Pedro Alcantara, the last known Yelamu. Alcantara was born as a Mission Indian (the Mission now known as Mission Dolores) in 1780. At the time of the interview, Alcantara was 70 years old. Here’s some of what he said:

“I am very old. … My people were once like the sands of the shore … many … many. They have all passed away. They have died like the grass … they have gone to the mountains. I do not complain. The antelope falls with the arrow. I had a son. I loved him. When the palefaces came he went away. I do not know where he is. I am a Christian Indian. I am all that is left of my people. I am alone.”

We too, Sue and I, are leaving this land of the Yelamu today. Hasta la vista, Yerba Buena. Sue is being discharged today. We are going to the mountains.

P.S. By tonight you will not be able to reach Sue on the are code (415) number we previously published to you. However, then you should be able to reach her directly on her cell phone. From here on, any cards or other mail should be addressed to our house. Those who want to (or who are willing to) participate in Sue's ongoing care over the next several months of recovery should contact Jessica on her cell phone, or, if you can't reach her call Sue directly.

Yes, We Can

2009-09-14T10:27:00.000-07:00

This morning I took my last jog in the Golden Gate National Recreation Area before checking out of David's apartment at Filbert and Baker Street for good. I have to be back in Fresno tomorrow to prepare for a labor commission hearing on Wednesday. The labor commissioner denied my request for a continuance even though the attorney for the other side stipulated to the request. Oh well. Just do it.

At 6 a.m. this morning there was a drizzly fog, almost like a light rain, swirling around. I had jogged a bit yesterday but didn't have the energy to go too far. My expectations today weren't high -- just do what I feel like. I made it all the way to Hoppers Hands on the Golden Gate Bridge without a single walk-and-breathe break, then turned around and made it all the way back to Presidio Park without any walk-and-breathe breaks. In all I went about 6 or 7 miles, and I am sure I could have done 10 without a break. But to do that I would have had to bypass my Starbucks-in-the-park latte. (O.K. Bruce Porter, I confess. I was projecting my addiction for good coffee on you. Nothing like a pumpkin spice latte and a slice of lemon loaf from Starbucks, eh?)

In prior jogs I always set goals to reach a certain marker before taking a walking break. Today I blew through all the markers. It was weird, but after I blew through a couple of the markers my body relaxed and it felt like I had an extra lung. I guess when you're just trying to hold on to get to the next marker you get tight, which increases your pain, which diminishes your capacity, which limits you in every which way. This morning was a definite breakthrough for me physically, mentally and emotionally. Last week I didn't think I had it in me to finish a half marathon on November 8; Today I am sure I can do it.

Sue has had a similar breakthrough. There were a number of days in this stem cell transplant ordeal where Sue did not think she could do this. She used phrases like "I can't do this" and "I'll never do this again" and other phrases too colorful to mention. But she has broken through the physical and emotional barriers; Today she is sure she can do it. For all intents and purposes, she has done it.

And for the politically astute among you who recognize the "Yes We Can" phrase as an Obama campaign phrase, I really don't care if you voted for or didn't vote for President Obama. And in my opinion it isn't material whether he turns out to be a good President or not a good President. What's important to me, as a republican in my brain, and as a democrat in my heart, and as a civil libertarian at the core, is that, as a nation we have had a breakthrough of a barrier.

So, yes, we can. Yes, we will.

P.S. Sue's numbers today have gone through the roof. Her WBC jumped from 4.6 yesterday to 11.2. Her ANC jumped from 4.3 yesterday to 9.96. One of the criteria for discharge from this hospital is if you have an ANC count of 1.5 or more for three consecutive days, or if you hold an ANC of 5 or more for one full day.

Haircut Day

2009-09-13T19:36:00.000-07:00

Sue's hair was coming out in globs today. It was getting all over everything, and it was uncomfortable and itchy. So we decided to be proactive. We cut it all off.

I played barber. It kinda reminded me of the time, about 26 years ago, when Sue decided we should save money by her cutting my hair instead of having a barber do it. She bought one of those Oster hair cutting machines, which we still have. The first time she cut my hair it was a big production, getting me seated on a stool in the bathroom, covering my shoulders with a big plastic cape, and then starting the Oster with a flair. I knew I was in trouble when, about two seconds into the haircut she said "oops." She'd started at the top and cut down! Everybody knows you start at the bottom and cut up.

Unless you're using a sled and giving the client a butch. That's what she got from me today. Total payback. Feels real good to rub your hands on it. She's got a nice, round head -- no weird lumps. Now she gets to wear the blue cap Jessica knitted for this occasion. In the pictures below Dr. Woof models the knitted cap pre hair cut, and then Sue tries it on for her first walk in public with her Sinead O'Connor look. (Sinead is one of my favorite female singers, by the way.)

Sue was remarkably upbeat today about the haircut. She felt much better today than yesterday. Her numbers were so good the medical staff thought there was a mistake, and they re-ran them. Her white blood count (WBC) went from .2 two days ago to .9 yesterday to 4.6 today! Her absolute neutrophil count (ANC -- the important one) jumped from .59 yesterday to 4.03 today! The afternoon tests confirmed these fantastic results.

At .59 ANC yesterday Sue was no longer neutropenic in the dangerous sense (less than .5). Today Sue is not neutropenic in any sense (neutropenia being, by definition, an ANC of less than 1.5). So mask precautions are done. Boy is Dr. Woof glad.

Thank you all for your continuing prayers and moral support. A heavy load has been lifted from Sue's head (heh heh heh). I think I'm going to start calling her the "hairless chi-mama."

All Things New

2009-09-12T11:29:00.000-07:00

Yesterday afternoon Jessica and I snuck down to Union Square while Sue was taking a nap. Jessica wanted to try to find a particular pair of Burkenstocks and we remembered there was a store on Stockton Street near Union Square. Turns out the store was closed last year during the recession.

We rode downtown on the N Judah. The conductor stopped the train in one of the underground tunnels and we were stuck there for about a half hour. Some drunk guy had wandered into the tunnel and fallen asleep right by the tracks. It took about 25 police officers and MUNI officials to sort it out. Meanwhile, they shut down the N Judah, so we had to walk to the nearest MUNI station and get on a different MUNI to get to Powell Street (Union Square).

It was a nice father-daughter outing. We went into the big shopping mall on Market (something Plaza, I can never remember the name of the place even though I've been there a dozen times) and bought a few things: some Vera Bradley note cards for Sue (in case she ever feels well enough to write some notes); some scented Bath and Body Works hand gels (mmmm, nectarine mint, my favorite).

There are a lot of stores selling a lot of pretty and shiny new things in San Francisco. There are also a lot of people here who can afford all that stuff. Pretty people dressed to the nines. People who drive B-Mers (BMWs), Lexuses and Mercedes Benzes. On the other hand, there are a lot of homeless and down and out people who can't afford a cup of coffee. Well, the good kind of coffee, anyway. You know, the kind Bruce Porter insists on having. The kind of which there's a plethora in the City.

You see these down and out people all over. At night or in the morning, and sometimes during the day, you see them rolled up in blankets on the sidewalk, blocking the doorways to stores and houses, sitting or sleeping in the parks. You see them coming into and out of the emergency room at the UCSF medical center in ambulances with their grubby, bearded, unwashed faces and their ragged clothes. Wow, such a contrast between the haves and have nots.

There was a pretty good thunder storm here last night, and a fair amount of rain. We're still getting some rain today. I'm sure the rain is a hard thing for the homeless people to deal with. But it washed the City down, watered all the plants, refreshed and renewed the City.

It's a mystery how, even amidst the glitz and allure of non-life-giving things, and amidst the decay of live's gone astray, and amidst the decaying and water starved land, and amidst those who are suffering from chronic illnesses and conditions, God is constantly making things new again -- refreshing, restoring, filling us up with pure, life sustaining water.

Revelation 21:5 And he that sat upon the throne said, "Behold, I make all things new." And he said unto me, Write: for these words are true and faithful.

P.S. Sue isn't feeling as good today as she did yesterday or the day before. But her numbers are up considerably. Her white blood count jumped from .2 to .9. Her ANC jumped from .1 two days ago (no measurement from yesterday) to .59 today!!! This means she is no longer in the critically neutropenic stage (ANC below .5). Indeed, He does make all things new, though we don't always understand the process.

Light House

2009-09-11T19:44:00.000-07:00

Jessica came to visit today. Well, she got here late last night, actually. She had a brief and happy reunion with her mommy (and which was happy for the mommy too) and then we headed off to David's apartment to get some rest.

The fog was heavy at the entrance to the bay, and all night long the fog horn was going off. Think of a loud nasal base monotone: Bouououououou. (short pause, then:) Bououououou. I've grown accustomed to it and it's comforting. It bothered Jessica a little.

So in the morning I told her the poem the dean of my law school recited to the first year law students while we sat in an assembled and numb mass near the beginning of that multi-year ordeal. I've remembered it from that first recitation. It goes like this:

Light House

Light house, him no good.
Him flash lights,
Him sound horn,
But still the fog comes.

Dean Schraber likened the light house to the professors, and said they will do their best to flash their lights and sound their horns and lead us to knowledge of the law, but to be sure, the fog will come upon us. But he encouraged us, as well. The fog will lift, and we will clearly see what was once hidden.

The fog of desperation seems to have been lifted off of Sue. Her visit with Jessica today was a great encouragement. She's been feeling much better and sleeping better. Debbie Friesen is coming for a visit tomorrow, and Sue is looking forward to that. "Visiting" hour upon hour with a husband is o.k., but a visit from a lady friend has a certain appeal to a woman. Debbie's visit appeals to me as well, because during her visit with Sue, Dave Friesen, Matt Friesen and I will attend the Giants vs. Dodgers baseball game. Goooo Giants! (Did I just say that when I know there are some Dodger fans reading this blog? Oh well, the Dodgers beat the Giants up yesterday. I'm not a rabid fan, but hey, this is San Francisco.)

So I won't say that Sue is happy, but I can say with assurance that she is happier. Her smile is back, though not yet constant. Bououououou. Bououououou. I think I see the sun peeking through that fog.

Peleton Charge

2009-09-10T16:53:00.000-07:00

Yesterday was a hard day. Sue was in emotional turmoil and wanted me to spend the night at the hospital with her. I drove to David's apartment to get a shower, get some things, and then came back to the hospital.

Having been woken up repeatedly the night before by Sue's desperate calls for me to come and get her out of the hospital, and having gotten up at 4 a.m. to get down here to just be here for her and do what I could, I was tired. Well, o.k., nearly exhausted. I figured if I didn't get a good night's sleep I was a candidate for a cold, which would render me unfit to even come onto the floor at 11 Long, much less be a physical or emotional support for Sue.

The night started badly, with multiple interruptions from medical staff, housekeepers etc. Sue was also restless, nauseous, etc. and unable to sleep. I was trying without success to sleep on a conglomeration of two uncomfortable chairs. I figured I was doomed. I figured we were both doomed. I prayed for sleep and renewal and protection from sickness. Then, mercifully, peace came over the room and both Sue and I were able to sleep. I woke up at 6 a.m. refreshed and renewed.

Because of the preceding three days of nausea and diarrhea, the medical staff required that Sue's True Blue quilt be laundered again. I took the opportunity to do all of her laundry, and mine as well. While I was at David's apartment picking up my dirty laundry, I figured it would be well to get in a little jog. I wanted to put my hands on Hopper's Hands because I felt like I had figuratively been part of an effort to keep Sue from a suicidal "jump" from the hospital bridge while neutropenic.

The jog turned out to be a good idea. It was a beautiful sunny day in the City, with blue skies and sunshine covering the inner Bay and a low fog sneaking in under the Golden Gate Bridge, just under the famous orange suspended roadway, and then dissipating. As I jogged along the path above the beach at Crissy Field, this verse came to me: Isaiah 40:31 "... but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."

I did grow weary, though, jogging into the headwind blowing into the bay from the Pacific. It made me think of the Tour de France, and how the riders form a peleton to cut the wind and preserve their energy. The peleton riders do all the heavy work for the star riders, so that, at the end of the race, the stars have the energy to dash away to the finish and claim victory. I got choked up thinking about how all of you who have supported Sue through her previous chemo treatments and medical appointments and who have supported her physically and emotionally and spiritually to this point, and who continue to support her, have been my peleton. Now, like Lance Armstrong, I am ready to charge up the final hill and claim the victory.

Except it wasn't Lance Armstrong who claimed the victory in the recent Tour de France. It was his teammate, Alberto Contador, who won. And I am like all of you, just part of the peleton for Sue, cutting wind and preparing the way for her to claim the victory over this cancer. We're a mighty good team and I'm proud to be working with you.

P.S. This has been a much better day for Sue. I think she's turning the corner. Keep up the prayer work, peleton people!!!

By Far The Hardest Thing

2009-09-09T13:10:00.000-07:00

John Denver's song "Follow Me" starts with this line: "It's by far the hardest thing I've ever done ...." It's a love song, not a lament from a cancer patient who wants to go home, but the words ring true for Sue; This stem cell transplant is by far the hardest thing she's ever done.

Today Sue has said on more than one occasion she will never do this (stem cell transplant) again and she would never tell anyone to "follow her" down this road. [If you are considering a stem cell transplant, stay tuned. I don't think this will be the last word. But for now, it's where she's at.]

Last night Sue reached an emotional low after three consecutive days of nausea, diarrhea and pain. Three days of neutropenia. The drugs, and there are a lot of them, have also left Sue a bit confused. After I left last night, Sue got focused on a new plan and didn't sleep much. I left the hospital at about 9:30 p.m. and got to sleep around 11:00 p.m. I got the first call from her around midnight. Between midnight and 4 a.m. she called 3 more times. She wanted me to go down to the hospital and get her out of there. Being sharp and astute, I sensed an emotional crisis brewing. I got up with the 4 a.m. call and came down to the hospital.

I got here at 5:20 a.m. and had to go through a security screeing to get in. Sue was intent on being discharged today and going home to recuperate. I told her I wasn't a medical professional and I couldn't make that call, though I knew it was an absurd and impossible notion. She insisted on having and holding her cell phone so she could call her friends for support for her plan. I had to stop her several times from calling all of you support ladies at 5:30 a.m, so you can thank me later for that. She called nurse Debbie and nurse practitioner Jennifer in Fresno at about seven-thirty to run her plan by them. Rightly, they did not support her plan to be discharged at the lowest point of neutropenia -- at a time when she is getting 24 hour care from top medical professionals.

The doctor came in at 9:30 this morning with a bad news, good news approach that settled her down a little: The bad news was that she wasn't going home today or even this week. End of story. Stop thinking about it. The good news was that her numbers are just starting to go up today. Her white blood count doubled from 0.1 to 0.2. That means the stem cells have embedded in the bone marrow and the bone marrow is starting to work again producing blood. He predicted the numbers will go up a little bit again tomorrow and then start rising rapidly. He predicted she will start feeling better each day from here on out to her discharge. Da Vinci couldn't have painted it better. Just the right combination of firmness and hope.

Vuon Le from Viet Nam posted a touching comment to this blog a few days ago. She had great and timely words of wisdom for me which have been of some good effect. She said: "Give her much more love, dear. And think that she is happy with u. That is all we must do to her. I'm sharing the feeling with u. May Gods bless u and all of us. Just let her feel the warmth of ur hands very time her heart beats. Give her my best regards. A friend from Viet Nam,Vuon le"

Numbers Number 4

2009-09-08T18:15:00.001-07:00

White blood counts still essentially zero. It's been a lousy day of stomach sickness and misery for Sue. She was cold all day so, in addition to the True Blue friends' quilt, I added cousin Bruce's shawl. We know Sue's wrapped in your love and your prayers and we thank you for it.

Hey Little Spouse On The Prairie and Neola - Here's the Blood-Bot waiting for the elevator.

And here she is getting on the elevator.

But I didn't have the nerve to get in and take a picture of her turning around. Maybe tomorrow.

However, I did see the most unusual sight this morning. There was a man down at the beach throwing a stick for his two Labrador Retrievers to go out and fetch. A sea lion was swimming around out in the vicinity of the activity barking at the dogs, who were barking at the sea lion, and the three of them were swimming around each other in circles, and it looked more like fun for the three of them than antagonism.

Mad Mad Mad World

2009-09-08T16:32:00.000-07:00

So according to some news accounts Bernie Madoff is dying of cancer. He's serving a 150 year sentence for scamming $65 billion from thousands of innocent people and institutions. At age 71 he isn't likely to serve out his sentence, irrespective of the cancer diagnosis. Either way you look at it, Madoff is bad-off.

There's a guy on Sue's cancer ward, 11 Long at UCSF medical center, who's being guarded by three armed guards 24 hours a day. Brent Auernheimer first reported to me that UCSF treats a lot of prison inmates when his mother was up here getting treatment. If the bad guy on Sue's ward is as sick as Sue I wouldn't worry too much about him running away. Besides, he's shackled at the ankles, so when he walks the halls with two armed deputies in tow he clinks.

For the bad guy here on 11 Long, think of the cost to the taxpayers. Figure $100,000 for the medical procedures, drugs and hospital stay, then add $50,000 for the guards, all for one man who's obviously a bad guy worthy of three armed guards 24/7. If 100 bad guys like him get treated in California annually, the cost to the state is $15,000,000. If 1,000 prisoners get treated for cancer this way it's $150,000,000. Statewide the cost for prisoner health care in California this year is going to be in the neighborhood of $7 billion this year. This while schools, libraries and every government program you like is getting cut back.

The guy who's promoting prisoners' constitutional rights to health care is J. Clark Kelso. He was a law professor at my law school in Sacramento 25 years ago. I never had classes from him but his father was my contracts professor. I'm not saying it's wrong or it's right, but I'm pretty sure this "constitutional coddling" of prisoners wouldn't have happened in John Dillinger's days.

But really, think about it. Here are two bad guys with cancer. It's hard to feel sorry for them or to pull for them. I'm kind of wondering why we allocate so much money to keeping them healthy. It's one thing to not mistreat prisoners. But is it mistreatment to not provide bad guys top-notch health care at the taxpayers' expense? And one has to wonder, why is it a constitutional guarantee for prisoners to have this kind of health care but not for all the people out here who haven't committed crimes? If that's the way it's going to be, then all your average law-abiding citizen who doesn't have health insurance has to do to get a stem cell transplant is commit a crime and get sent to prison for a while. Hmmm.

Numbers Number 3

2009-09-07T17:07:00.000-07:00

Here are the numbers for today. WBC and ANC are about as close to zero as you can get and still have any white blood cells. Everybody is on mask precautions, including Dr. Woof.

Sue's been pukey sick all day. Can't hold food or pills down. Sleeping mostly. The bright spot of her day was when she solved a 20 questions game. She's on oxycodone, vicodin and a bunch of other mind-numbing drugs, so she had to work at it, but she got it and it made her fall back to sleep smiling. It also made her happy to put on the black polka-dotted nighties that Cindy and Maggie gave her for her birthday. Oh, and Cindy's phone call was a timely bright spot. You can call Sue directly in her room at (415) 514-5320.

It's an absolutely gorgeous labor day in San Francisco. Too bad this ain't no picnic.

P.S. Dear Little Spouse On The Prairie and Dear Neola: I think I discovered the answer to why you can't ride the elevator with Ms. Blood-Bot (I determined it's a she by her voice). I watched it/her enter the elevator and she stands there with her face right up against the doors. When the doors open she enters the elevator and immediately turns around to face the doors from the inside while calling out in a lady-like voice: "Stand clear. Turning around. Stand clear. Turning around." Ms. Blood-Bot literally needs the whole inside of the elevator to turn around. I imagine if you were in her way you'd get run over, or you'd learn real quick how to dance with Ms. Blood-Bot. Hey, I might try it. As they say on the country radio: "Life's A Dance You Learn As You Go."

Unionized

2009-09-06T17:23:00.000-07:00

Powell Street Cable Car starting from Market Street.

Music and dancing in Union Square on a Sunday afternoon.

See the City from an open double decker bus. Hop On - Hop Off.

More than a few shoppers out this afternoon.

Seven disjointed flights of escalators just to get to Nordstroms.

Playing for a sparse audience in the Muni station.

The N Judah approaches the boarding platform in the Muni station. One bored girl eyes me suspiciously.

Nurse Charlotte

2009-09-06T17:04:00.000-07:00

Does she, or does she not, look like Charlotte W? This announcement hangs in every room on 11 Long. Sue's got one on the bulletin board at the foot of her bed. Every time we look at it we think of Charlotte, and it makes us smile.

Exploratorium

2009-09-06T11:39:00.000-07:00

If you have kids and are going to San Francisco, you really should plan to spend some time at the Exploratorium. I currently am staying about 4 blocks from the Exploratorium, so I jog or walk by it almost every day. It is in the Palace of Fine Arts, which is a structure built in 1893 in a Roman/Greek architectural style as part of a world exposition held in San Francisco. It is surrounded by a fantastic park and sits right on the Marina Boulevard waterfront with a nearby beach, yacht club, in view of Golden Gate Bridge and within walking distance to Ghiradelli Square, Fort Mason, The Beach and Hyde cable car terminal, and other downtown attractions.

The Exploratorium is one of the best interactive educational museums around. Every first Wednesday of the month is a free admission day. But it's worth the price of admission if you can't cash in on the free day.

Numbers Number 2

2009-09-06T11:00:00.000-07:00

For the explanation of this white board, you should review my September 4 blog. Note that they rolled today's date, 9/6, to the first column where the 9/1 numbers used to be. Simply put, Sue is fully neutropenic today with an ANC of less than 0.5. This will be a week of high precautions, careful watching and mutiple daily taking of vitals.

Sue's also a little anemic and lethargic. She's sleeping a lot. They'll probably give her an infusion of blood tomorrow, according to Dr. Martin.

Dr. Wolf is off rotation and we met Dr. Martin for the first time today. He kinda reminds me of my computer Dr. -- Dr. Doug Martin. Similar build and face, just a little bit older with curly gray hair and not the same bubbly personality. Dr. Martin is pleasant enough, though, and appears thoroughly competent. He'll be on rotation for the next two weeks.

You can see from the white board that Alex was Sue's R.N. last night. That's not short for Alexandria. Jenn's back on this morning. The R.N.s work 12 hour shifts on this floor.

Ghost Riders

2009-09-05T11:00:00.000-07:00

Yesterday I noted that at peak times hospital elevators can be busy and packed. Riders get on at every stop. And every stop is practically every floor. If you're germ phobic, as most health professionals tend to be, it can be unnerving when someone gets on a packed elevator and coughs, sneezes, snorts or wheezes. Howard Hughes and Neutropnics would just die.

Late at night it's a different story. Very few riders and very few stops. What's a little unnerving at night are the ghost riders. That's where the elevator stops, the doors open, but nobody's there. You know, a lot of people die in hospitals. It's not out of the question that they're riding the elevators with you. Spooky. Reminds me of the old Stan Jones song "Ghost Riders In The Sky."

Ghost Riders In The Sky - Johnny Cash Version

Ghost Riders In The Sky - Vaughn Moore Version

Ghost Riders In The Sky - The Outlaws Version

Meet Dr. Woof

2009-09-05T07:00:00.000-07:00

This is Dr. Woof, cancer guard dog extraordinaire. He's grown very attached to Sue; He never leaves her room. He's become the multiple myeloma patient's best friend. Sitting guard in the window of Room 1116 Long, he'll chase away any bad guys like germs, infections, sicknesses etc. He's super vigilant. He never sleeps and is always pleasant when not chasing the bad guys away.

I once had to restrain Dr. Woof from chasing the blood-bot. He mistook it for one of Darth Vadar's crew.

Speaking of Darth Vadar, Lucas Productions has a rather large and grand office in the Presidio Park. But what I'm sure you Disney fanatics are going to be really excited about is the new Walt Disney family museum they are getting set to open up in Presidio Park on October 1. Now you can do Disney in Anaheim and/or in San Francisco.

Here's a trivia question: "What was the name of the robot in the t.v. series Lost In Space?" Remember, the one that always said "Danger Will Robinson!" Here's a hint: "What kind of cancer is a good kind?" Click the link at the end of this paragraph to find your answer. And guess what? Now you can get your own full size robot just like that one!

Numbers Game

2009-09-04T14:26:00.000-07:00

Here is a picture of the whiteboard hanging on the wall at the foot of Sue's bed -- right above David Friesen's miracles poster. They use it to track Sue's blood counts. They also have a chart which is the official record.

The left column shows: WBC - White Blood Count; ANC - Absolute Nuetrophil Count, which is a subcategory of the white blood specifically critical to/responsible for the body's immunity system; HCT - red cell count; and Plat - platelets. They monitor a lot of things here, vitals, urine, stools, how you feel about everything, emotional state, etc etc. -- but these blood counts are the ones the doctors watch most closely.

They administered the Melphalan late on Sunday 8-30 (between 10:30 and 11:30 p.m. The counts on 9-1 were post Melphalan and by that time the bone marrow had basically shut down. On 9-2 they intravenously gave Sue back her blood which had been previously harvested and frozen. That brought her counts back up for a day. The next day (yesterday) the counts were dropping rapidly again. Today the WBC and ANC counts are pushing on toward zero.

ANC is the critical number the docs watch. My source for medical information, Wikipedia, discusses Neutropenia. According to my source,bolstered by a teaching session by Nurse Jennifer, when the ANC drops below 1.5 the patient is mildly neutropenic; When the ANC drops below 1.0 the patient is moderately neutropenic; and when the ANC drops below 0.5, the patient is fully neutropenic and at severe risk of infection. They expect that to happen in the next day or two.

Think of Sue's condition like this. Her white blood cells are in the white blood cell killer roller coaster called BIG MEL. They've been over some of the low easy drops and curves. Now the car carrying the while blood cells is grinding to the top of BIG MEL and it's time to get a little scared because pretty quick its ... going ... to ... droooooop reeeeeealllllllllly faaaaaaasssssst!

A New Dawning

2009-09-04T13:00:00.000-07:00

Yesterday I jogged along the beach to the Golden Gate Bridge at sunrise. There would be no returning to capture this glorious scene on camera; it was as fleeting as life itself, and as magnificent. Picture a cloudless, fogless calm San Francisco morning with a calm sea, no waves and only a little chop on the Bay. Picture the sun rising over the mountains east of Berkeley, silhouetting Alcatraz island, the Bay Bridge, and the Financial District in a backdrop of dazzling orange light.

Picture two one-man sculls, shadowy slivers in the bay, being rowed across the calm water by their shadow-men. A lone paddleboard rider was paddling along the shore. The pier was occupied by seven of my kindred spirits -- fisherman out to greet the day. The usual cacophony of birds joined the scene, together with the early-bird walkers and joggers.

And I was both elated and frustrated. I've got a few aches and pains and I haven't been able to break through the endurance plateau that's capped my progress. I want to run a half marathon in the Two Cities' Marathon in November, but if I can't progress past this plateau that isn't going to happen.

Then it dawned on me how stupid I am. Sue is lying in a hospital bed and she can't walk the 100 yard loop around the hallway of 11 Long without feeling nauseous. She choked up with tears at every card she opened today. She said she thought this would be easier -- like the chemo treatments she got in Fresno. It's been hard. Harder than she thought. And she's one of the lucky ones. There are some people up here who are critical, clinging to life by a thread.

But that's the way it is. No matter who you are, or where, there are always going to be some who are better off than you, and some who are worse off. You want to progress to the next level, but sometimes you get pulled down. Eventually we all do.

And so it is good to remember that our life here, and our accomplishments, are temporal. Percy Shelly wrote it well in one of my favorite poems, Ozymandias.

I met a traveller from an antique land
Who said: "Two vast and trunkless legs of stone
Stand in the desert. Near them on the sand,
Half sunk, a shattered visage lies, whose frown
And wrinkled lip and sneer of cold command
Tell that its sculptor well those passions read
Which yet survive, stamped on these lifeless things,
The hand that mocked them and the heart that fed.
And on the pedestal these words appear:
`My name is Ozymandias, King of Kings:
Look on my works, ye mighty, and despair!'
Nothing beside remains. Round the decay
Of that colossal wreck, boundless and bare,
The lone and level sands stretch far away".

Blood-Bot

2009-09-04T06:00:00.000-07:00

Here's one of the robots I blogged about yesterday. It stops at every hallway crossing and looks both ways before crossing. It avoids people and obstacles and it talks to itself.

A sign on the back of the robot reads: "CAUTION: Do Not Enter The Elevator Or Ride In The Elevator With This Robot. For help with this Robot call the Blood Bank." They use this robot to transport blood to the nurses' stations. I couldn't get the Blood-Bot to stand still for pictures.

Hardware For The Soul

2009-09-03T13:38:00.000-07:00

Here's a story that has warmed our souls today.

On August 29 I posted a blog about Cole Hardware titled "We Saw A Grate Light." The owner of Cole Hardware, Rick Karp, saw the blog and posted a very nice comment. The blog included a picture of some unusual lights in a window display which were made out of hand-held graters. Turns out the lights were custom made by a Cole Hardware employee, Noelle Nicks, who worked as an engineer in a previous life, and who is currently in charge of displays and merchandising for the four Cole Hardware stores in San Francisco.

In his comment to my blog, Mr. Karp offered to have some of the lights made for Sue. She said she wanted some, so I called today at about 10 a.m. to speak with Mr. Karp. I spoke instead with his chief assistant, Julia, who claimed that Mr. Karp doesn't really have an office or a desk. I left a message thanking Mr. Karp for his kind comments and advising that Sue did want some of the grater lights, and also that I would be willing to pay for them.

At about 1 p.m. today a package was delivered to Sue at the hospital by two Cole Hardware employees; the package included three grater lights, three colorful Cole Hardware helium balloons, a card which said "May only grate great things happen for you!" signed "From Your Friends At Cold Hardware" and a black Cole Hardware hand bag.

The bag has the Cole Hardware logo: "Cole. Hardware for the soul."

We affirm that. Thank you Rick, Noelle, Julia and Cole Hardware. You have indeed delivered hardware for the soul.

Yerba Buena

2009-09-03T10:00:00.000-07:00

O.K. Did you know that San Francisco used to be called "Yerba Buena?" It means Good Herb.

One of the more popular hang-outs in San Francisco is Yerba Buena Gardens. There are many performing arts venues and museums, as well as restaurants, coffee bars etc. in or near the Yerba Buena Gardens. I just missed a free concert and party yesterday after I bought my month-long muni pass at the Market Street Muni Station. Yerba Buena Gardens Festival runs from May through October with free concerts and festivals. Tomorrow's free event is Big Lou's Polka Casserole from 6 to 7:30 p.m. in Jessie Square accross the street from Yerba Buena Gardens. (It's true! If you don't believe me log onto http://www.ybgf.org/ or www.myspace.com/ybgfestival and check it out.) I'm so there. My only regret is that my Minnesota buddy, Mark, can't be there to share the experience. Oh yeah, and Cindy and Sue. (That's Jessie Square below, together with the Jessie Square Garage entrance. You go, Jessie!! Polka! Polka! Polka!)

Yerba Buena Gardens is located in the SOMA (south of Market Street) area of San Francisco between 3rd and 4th Streets and just north of the Moscone Convention Center. If you were around in the 1970's you might remember that George Moscone was the Mayor of San Francisco when he, along with S.F. Supervisor, Harvey Milk, was shot and killed by former S.F. Supervisor, Dan White. There is a very interesting movie about it called "Milk."

Hospital Tidbits

2009-09-03T08:00:00.000-07:00

The robots are taking over the world. Today I saw two robots working in 11 Long. One was delivering drugs to the nurses' station and the other one was cleaning the hallway floor. I'm not kidding you, these were unmanned robots!! I'll post pictures of the robots tomorrow if I see them again.

Nowhere in the world is it more true that the last shall be first and the first shall be last than when getting onto and off a busy high-rise-hospital elevator.

Ty Hadman is a poet who wrote a few Haiku poetry books. Here are a couple of hospital Haiku that loosely fit our situation:

Silent waiting room;
drinking mountain spring water
in a white paper cup.

and

Winter poverty;
I made a new friend
at the blood bank.

and one from Hadman's Vietmam war experience to fit the Fort Point scenario:

No enemy seen;
but I get a good look
at myself.

And here's the penultimate tidbit: even if you don't feel like it, you should get some exercise. Sue's nausea has finally settled down to where she can get up and mobe around with her ivy buddy. Here are two pictures of her in the 11 Long Solarium. I included the fuzzy picture only because it shows Sue wearing the p.j.s Cyndi T gave Sue. She's also wearing the blue "Shhhhh" top. Thanks, sis.

Fort Point and Crissy Field

2009-09-02T16:43:00.000-07:00

This morning I made a terrific discovery on my jog to the fishing pier near the Golden Gate Bridge in the Golden Gate National Recreation Area. A half mile west of the fishing pier, literally underneath the Golden Gate Bridge, is a civil war era fort called Fort Point.

The fort was modeled after Fort Sumter and is the only standing Civil War era fort of this type west of the Mississippi. With granite and brick walls five to eight feet thick, it is an impressive fort. Take note of the arch of the Golden Gate Bridge over the top of the fort. The architect of the GG Bridge saved the fort from destruction with that arch.

I drove back to the fort after my morning jog because I don't like carrying the camera in my jogging shorts. Note that Jessica swapped cars with me because she wanted to take Sue's CRV to Idaho to visit Luke. Picture me driving this bright yellow V.W. bug with daisy wheels around San Francisco. Well, enough about that. I parked the car and bought a month-long muni pass.

The picture above is the beachfront park that the jogging path goes through. It used to be an airfield called Crissy Field. It was covered with asphalt and was pretty much a waste dump. Now it has restored wetlands and is a vibrant recreation area.

The Crissy Field jogging path ends at Fort Point. There is a little red sign there that every jogger puts two hands on and pushes off and turns around and runs the other way. The red sign has two hands on it and it says "Hoppers Hand's." If, like me, you wonder, "who the heck is or was Hopper?" then you should click this Hopper's Hands link. It's very interesting and appropriate to our discussion about being light and salt to the world.

The guy in the picture above holding the fishing pole caught a nice rock cod right after I took this picture. He is actually setting the hook in this picture.

Don't Do It - At Least Not Yet

2009-09-02T11:30:00.000-07:00

If you've been thinking about coming up to San Francisco to visit Sue and show support, don't do it. Now is not the time. First of all, Sue's entering the neutropenic stage of the stem cell transplant. Neutropenia is a condition where you have low or no white blood cells, and thus you have no or low immunity to every bug, virus and sickness known to man. This is actually the most dangerous part of the STC procedure. The doctors and the hospital staff really do not want the neutropenic patients to have a lot of visitors.

Second of all, the Bay Bridge is going to be closed from Septmeber 3 to September 8. Traffic in and out of San Francisco is going to be snarled on all the alternative routes.

I will take it upon myself to keep you informed about Sue and to give you a daily dose of San Francisco history, society, night life etc. Let's get started. Sue is appreciating all your emails, text messages, blog comments and phone calls. If you want to call her use the room phone at 415-514-5320. She's not getting good cell phone reception in her new room.

Here's a couple of more pictures of Sue's new private room, room 1116 Long.

Sue with her ivy buddy and her laptop, checking her emails and blog comments. She sends thanks to the mystery person who wrote the nice poem. Ditto.

Here's George's office away from home. Doug Martin, computer genious, set up George's laptop and office computer so that George can work on his office computer from anywhere. Sooo cool.

That's Dave Friesen's poster on the wall which is a poster of Jesus' miracles. The white paper above it is an explanation and dedication of the poster. This is one of the many thoughtful and meaningful things that people have done for Sue. Collectively you really are a lot like San Francisco -- a city on a hill.

Matthew 5:14 "You are the light of the world. A city on a hill cannot be hidden.

A Great Light Revisited

2009-08-31T22:00:00.000-07:00

A number of years ago I attended a session of the Mennonite Camping Association biennial conference in Michigan. The group of Mennonite camping professionals from throughout Canada and the U.S. assembled for an evening worship session. The room was fully lit and on a stand in the center of the room was a small candle on a stand. The candle wasn’t anything that would draw more than a passing glance. Certainly it was not remarkable, nor memorable.

After the assembled group sang for a while the speaker took the podium and asked that the lights be turned out. When the room went dark, instantly the candle became the sole remaining light source in the room, and the candle became the focus of attention. It’s significance greatly magnified by the absence of any other light source. The speaker went on to point out that when people are in darkness, even a small light becomes a source of focus and hope. We are naturally drawn to the light.

If you are healthy, you may not think much about the darkness that overcomes people who are afflicted with chronic illness. It’s not easy being cheerful and hopeful when you are sick and sore and tired all the time; when life as you knew it is gone and death stares you in the face. Depression and sadness come over you like a moonless night. Even the smallest kindness can be a beacon of light and hope for someone mired in such darkness. I encourage you be that light for someone today.

Isaiah 9:2; Matthew 4:16
The people walking in darkness have seen a great light; on those living in the land of the shadow of death a light has dawned.

P.S. Throughout her cancer experience, Susan has been blessed and lifted up by many kind and encouraging and thoughtful people. Most of you who read our blogs are counted among them. Thank you.

T Minus One

2009-08-31T12:53:00.000-07:00

Last night at about 10:30 they administered the Melphalan to Sue. It took about 30 minutes to drip in intravenously. The whole thing was anticlimactic. The most interesting thing was that they asked Sue to chew ice or popsicles to shrink the tissues in her mouth and neck so that the side effects of sore mouth and sore throat will be minimized. She managed two cherry popsicles during the 30 minute drip. Then they made her chew ice for another half hour.

Today Sue has been sick all day. She didn't sleep much last night so now she's sleeping. Note that she's wrapped in love, i.e. the Sue-Blue quilt her friends made for her. She's missing a great view from her window. It's not too clear in this picture, but you can see the tops of the Golden Gate Bridge in the distance above the top of the 400 Parnassus building. You can see it better if you click on the picture to enlarge it. Use the back arrow to navigate back here.

This is the lunch Sue probably won't eat. It's been sitting here for about an hour already. Sure, the picture's a little out of focus, but you really don't want to see it in all its detail anyway. [Recommendation: don't click on this picture.] At least she's getting her fluids, whether she wants them or not. She can't go anywhere without her rolling ivy buddy.

This is day T Minus One because tomorrow, or early on Wednesday, they will give Sue back some of her stem cells that they harvested earlier this month.

A Jog In The Park

2009-08-31T11:41:00.000-07:00

Most of you readers probably think I'm a pretty good guy for sacrificing and coming up to San Francisco to be with Sue while she undergoes this stem cell transplant. Yeah, I am, sort of. But really, let's be honest; The human condition is one of self-centered-ness. When you distill it down, this is all about me and my adventures centered around Sue's situation.

For example, I slept great at David's apartment last night. No trains. No busses. No people out on the streets making noise. It's just a quiet upscale S.F. neighborhood.

Then I got up this morning to take a little jog through Presidio Park. There are lots of grassy, tree-lined streets in there with names of famous generals and quaint old military houses.

There are walking paths all around -- it is a national park you know -- and at various points you have great views of the bay, the Golden Gate Bridge, Alcatraz island, etc. Down at the bottom of the hill you come to Golden Gate National Recreation Area with a long beach and several wildlife protection areas, all laced with walking/jogging trails.

If you jog or walk west along the beach at Golden Gate National Recreation Area you come to the coup de grace, a public fishing pier in the shadow of the Golden Gate Bridge. At the left end of the pier is a "warming hut" which is really a National Park Service gift shop, coffee shop/lunch counter.

On the way back to the apartment, back in Presidio Park, you go through a nice refined park with gazebos, streams and waterfalls.

And just up the hill from that, overlooking it all, is the coolest Starbucks coffee shop you ever want to visit. You can see the white railings surrounding the outside seating area of the Starbucks on the bottom floor of the red brick building beneath the tree and above the walker's head.

Ahh. I love the smell of napalm, er, I mean coffee, in the morning.

So that's it. Notwithstanding that Sue is sick and in the hospital, my life right now is just an adventurous jog in the park. You needn't feel sorry for me -- unless you want to feel sorry for me being such a shallow, self-centered person.

Stepped Up

2009-08-30T19:57:00.000-07:00

I'm done with the Carl Hotel for a while. David Carico, Sue's step-brother, called to offer me the use of his one bedroom apartment. It's at the corner of Filbert and Baker Streets, between the prestigious Pacific Heights district and the bay. Presidio Park is one block to the west and an ambitious walker could get to the Yaght Club on Marina Boulevard in about ten minutes. Best thing: it's quiet. Second best thing: it's bigger than 12 X 15. Third best thing: it's not a "sleeper chair" at the hospital.

Just Do It

2009-08-30T14:14:00.000-07:00

The whole question today was, would the hospital have a bed for Sue to check into on 11 Long? We were to call after 9 a.m. to see. Sue's been increasingly nervous and nauseous thinking about the Melphalan part of the STC.

We ate breakfast at the Reverie coffee shop. Initially I confused the word "reveille" with "reverie." Reveille seems like an appropriate coffee shop name -- the "wake-up bugle call coffee shop." Reverie, it turns out, is even more appropriate to this day. It means "a state of dreamy meditation or fanciful musing, e.g. lost in reverie," or "a daydream."

After coffee and eggs at the daydream coffee shop Sue called in to see if she'd get checked in today. The charge nurse was busy, so Sue left a message and we drove to the beach. We walked out on a sandy hill overlooking the breakers and saw two whales spouting off and cruising south to north not more than 50 yards off shore.

We drove back along the south side of Golden Gate Park. Clearly there is a big event going on there today, with traffic controls and staff posted at every entrance and people making their way into the park. All we could make out from the signs was that it would be some kind of a music and art festival. Sue was still nervous so I suggested she call in again. She did and they told her to report to admitting on the first floor.

Admitting was a long process, but now she's in "her" bed, bed number 1 in room 1151. The room has a great view overlooking San Francisco. We can see Golden Gate Park, Presidio Park, the top of the Golden Gate Bridge, the financial district, the bay, the whole caboodle. Sue's got the inside bed, though. She has a room-mate for the next two days, then she'll be moved to a private room.

So far we've met Lindsay (that's Lindsay with Sue), the R.N. assigned to Sue and three other patients for the next four days, and Dr. Joy Hsu, a doctor working with Dr. Wolf's patients and the primary RX administrator. 11 Long has it's own pharmacy. Get this, I calculated this morning at the Reverie that Sue's been taking 54 pills a day!!! A pharmacist's dream. Hsu is prounounced Sue. It's a good omen. Joy Sue. Nice.

While we were out tootling around the hallway we ran into Dr. Wiedewilt, the doctor who first interviewed Sue on her first visit to UCSF. He was making some rounds on 11 Long. Dr. Wolf just popped in a few moments ago. He's working on the calculations for Sue's Melphalan dosage. Sue's nervous and nauseous. She wanted to call one of her friends but she was afraid she'd cry so she didn't do it. That's o.k. The staff here are all very nice.

There have been about 4 or 5 other medical staff in and out of Sue's room -- including an x ray tech who took a chest x ray, and a lady who just came in just to measure Sue's wrist for the calculation of how much Melphalan to administer. The calculation Dr. Wolf is making takes into account height, weight, and apparently wrist circumference.

It's 3:30. Dr. Wolf says they'll start the Melphalan soon. They refer to this moment of administration of the Melphalan as "T minus 2." What that means is, it takes about 2 days for the drug to work itself out of Sue's system, or for her system to work the drugs out. That day is called "day zero" because that's the day they administer the previously-harvested stem cells. The actual time for that is whenever the blood tests show that all the blood cells have died.

From there they count days upward as Sue's body works to heal itself. Well, she's still nervous and nauseous. I guess here's where Mark W's advice kicks in. The best way to accomplish a hard job is to just start it. Or, as Nike puts it: Just Do It.

We Saw A Grate Light

2009-08-29T22:59:00.000-07:00

We are back in San Francisco. We checked back into the Carl Hotel and then walked back to Cole Street. There's a hardware store there called "Cole Hardware" that Sue wanted to visit the last time we were here but they closed just before we could go in and look. It was there, in the window of Cole Hardware, that we saw a grate light.

Barring any problems Sue will be checking in to the hospital tomorrow morning to begin the Stem Cell Transplant procedure. Now that Sue's day of reckoning is upon her Sue's feeling a little like these cheese grater lights; her nerves are a little shredded but she can see a light at the end of the funnel.

O.K. That was reaching a little.

We went back to Bambino's Ristorante for dinner. It's right accross the street from Cole Hardware. If you look close you can see the Cole Hardware sign reflected in the Bambino's window. Breaking bread and

drinking wine over a candle lit table at Bambino's did have kind of a last supper feel to it. Actually, we had pizza and it was lovely.

After dinner we took a drive around San Francisco. Today was quite a warm day and it was a Saturday close to the start of the new school term, so there were hundreds of college "kids" headed back from the beaches and the parks. And the Saturday night crowds were making their way to the restaurants and theaters and the City was just abuzz. It can make you want to fall in love all over again to be in San Francisco.

Great Harvest

2009-08-18T21:13:00.000-07:00

Sue was on the dialysis machine for about five hours today. Dina, the nurse assigned to Sue, was very pleased with the amount and color of the bag of stem cell blood collected from Sue. Based on her experience, and without seeing the actual test results, Dina thought Sue had done very well. We left the hospital about 2:00 p.m. with an appointment to be back to meet with Bridget at 4 p.m.

Before we started the harvest process, Bridget had prepared Sue for the worst. Sometimes the harvest takes a number of days. It really depends on how many stem cells your body produces. The Neupogen is supposed to facilitate white blood/stem cell production, but they opted not to give Sue the super expensive (like $6,000 per shot) Plexifor. At 4 p.m. Bridget would tell us the results of today's harvest and determine the course of things for tomorrow.

A stem cell transplant takes about 3 units of stem cells (we don't know what the unit measure is). Dr. Wolf likes to collect at least 10 units of stem cells if possible, so that multiple stem cell transplants over a course of years are possible from one harvest. 6 units would be a minimum target, and sometimes it takes a week of harvesting to get that many. Because Sue did not get the Plexifor, all the staff were anticipating a multi-day harvest.

At 4:20 p.m. Bridget delivered the news: SUE DID GREAT! They harvested 15 units of stem cells from her in one day! That's enough for up to five stem cell transplants. The doctors on staff and Bridget were pretty amazed. Sue just might be a textbook case -- the good results kind.

We recognize this Great Harvest -- and the good results of Sue's whole course of treatments so far -- as the answer to the many prayers of our friends and families. We thank you all for your support and for walking this road with us.

Deja La Luz Encendida, Por Favor

2009-08-18T14:42:00.000-07:00

It occurred to me late in life that I missed the boat by not learning Spanish in my youth. Like most things, language learning comes easier to the young. Notwithstanding my age and sluggish brain, I determined at age 50 that I would become fluent in Spanish. While I have yet to become fluent, I have learned enough words and phrases to get by. Pondering words and thoughts in a foreign language can add perspective to your native language thoughts.

For example, in Spanish the same word, "esperar," is used for "to wait" and "to hope." The beautiful Spanish name "Esperanza" (Hope) comes from it. "Nuestra esperanza está en Dios" can be tranlated most directly as "our hope is in God." "Estamos esperando a Dios" means we are waiting for God. But in the "to" form of the verb, "we are going to wait for God" or "we are waiting for God" and "we are going to hope in God" or "we are hoping in God" comes out nearly identical: "Vamos a esperar a Dios" and "Que vamos a esperar en Dios."

Consider Jeremiah 14:22 in English and Spanish:

Jeremiah 14:22 (New International Version)
22 Do any of the worthless idols of the nations bring rain? Do the skies themselves send down showers? No, it is you, O LORD our God. Therefore our hope is in you, for you are the one who does all this.

Jeremías 14:22 (Nueva Versión Internacional)
22 ¿Acaso hay entre los ídolos falsos alguno que pueda hacer llover? Señor y Dios nuestro, ¿acaso no eres tú, y no el cielo mismo, el que manda los aguaceros? Tú has hecho todas estas cosas; por eso esperamos en ti.

Contemplating that in which we place our hope can lead to ambivalence. You might remember the old Doris Day song "Que Sera Sera" -- "What Will Be Will Be" -- or "Whatever Will Be Will Be." On the other hand, it can also lead to clarity. Do you remember the Spanish love song "Eres Tu?"

(Eres Tu - by Juan Carlos Calderon)

Como una promesa, eres tu, eres tu

Como una manana de verano

Como una sonrisa, eres tu, eres tu

Asi, asi, eres tu.

Toda mi esperanza, eres tu, eres tu

Como lluvia fresca en mis manos

Como fuerte brisa, eres tu, eres tu

Asi, asi, eres tu

Eres tu como el agua de mi fuente

Eres tu el fuego de mi hogar

Eres tu como el fuego de mi hoguera

Eres tu, en mi vida el trigo de mi pan

Como mi poema, eres tu, eres tu

Como una guitarra en la noche

Todo mi horizonte eres tu, eres tu

Asi, asi, eres tu.

[Eres Tu - English translation]

Like a promise, you are, you are

Like a summer morning

Like a smile, you are, you are

Like that, like that, you are

All my hope, you are, you are

Like fresh rain in my hands

Like a strong breeze, you are, you are

Like that, like that, you are

[Chorus:]You are like the water of my fountain

You are like the fire of my home

You are like the fire of my bonfire

You are my life, like the wheat of my bread

You areLike a poem, you are, you are

Like a guitar in the night

My whole horizon, you are, you are

Like that, like that, you are

P.S. "Deja La Luz Encendida, Por Favor" means "Leave The Light On (Burning), Please."

All Hooked Up

2009-08-18T09:44:00.001-07:00

There is an elevator from Irving Street to Parnasus. But Sue got hooked up this morning with a sadistic personal trainer. He made her walk up the hill.

This is Dina, Sue's attending R.N. for the stem cell harvest. She got Sue hooked up to the dialysis machine on the left. The machine "borrows" blood from Sue, spins out the stem cells with a centrifugal separator, then puts the blood back.

The ins and outs of the harvest.

La machina. The machine.

Long and Short

2009-08-18T09:34:00.000-07:00

We wondered why this hospital was called "the Long Hospital." Was it because it is longer than the Moffitt Hospital? Well here's your short answer.

http://www.nytimes.com/1990/12/31/obituaries/joseph-m-long-78-philanthropist-led-chain-of-drug-stores.html

Carl 324, N Judah, 11 Long

2009-08-17T20:22:00.000-07:00

On our way to San Francisco Sunday afternoon we kept seeing the lit-up roadside signs warning us that the Bay Bridge will be closed from September 3 to 8. This, coupled with the threats of an imminent strike from the Bay Area Rapid Transit (BART) workers left me thinking it might become absurdly difficult, if not impossible, to get into or out of San Francisco over Labor Day weekend and the week following Labor Day. Sue’s set to start her stem cell transplant on September 1.

We’ve been debating whether or not I should spend the money to rent a room in ‘Frisco for the month of September. I’ve come up the 101 from San Jose during “ordinary” traffic. If they close the Bay Bridge, and God forbid, if BART workers strike during the same time frame, imagine the mess on the 101. I’m thinking now that I’m going to rent a room and hole up here for at least the first two weeks of the STC ordeal. I’ve got plans. Big Plans with a capital BP.

We stayed at the Stanyan Park Hotel last time in town. That was nice but not luxurious for about $130 a night. This time around the Stanyan Park was booked, so we’re staying at the Carl Hotel, room 324. It’s a step down in class at $80 a night ($510 by the week, plus 14% room tax), but $50 a night cheaper and a shorter walk to get to the UCSF medical center. The Carl is at the corner of Carl and Stanyan, about a three minute walk from where Sue’s being treated.

The N-Judah electric train runs right past the Carl Hotel on Carl. All day and all night. Our room overlooks Carl street, so we get to hear the trains. Fortunately, the frequency tapers off the later it gets. The N Judah is handy though. We rode the whole N-Judah loop last evening just for fun. You can ride the N-Judah to the Ocean west of UCSF, at the west end of the Sunset District on, what else, Judah street. There’s a big beach out there with dunes where you can get sand in your socks. Or, going the other direction, you can ride the N-Judah east down multiple stops along Market Street: Union Square, the Financial District, the Ferry Building at the Embarcadero. And, guess what? N-Judah stops at Pac Bell, er, uh, AT&T Park. Hmm. Maybe a baseball game's in my Big Plans future?

Sue’s stem cell harvest starting tomorrow, and her stem cell transplant starting September 1, will be in the UCSF Long Hospital on the 11th Floor. Around here they just call it “11 Long.” Hey, it’s that magical time of year where baseball season crosses over with the start of football season. Maybe there’s a football game in my Big Plans future, too? I think it’s kind of an omen. If you say this just right, it sounds like a quarterback calling a play from the line of scrimmage: “Carl 3-24, N Judah, 11 Long! Hut! Hut!”

Sticker Shock

2009-08-17T15:45:00.000-07:00

Sue got her catheter tube in today. This is the tube they use to hook Sue up to the dialysis machine to spin out her stem cells, then put the blood back in. You'd think they could do something to make the darn tubes a little more subtle. But no, instead, after they got them sticking out of her neck they covered them up with a bright red sticker that, well, sticks out like a sore thumb. Sue looked in the mirror and got a little sticker shock.

Sue has a blue scarf she brought along for the occasion. She'd been forewarned by one of her myeloma cancer sisters that they put the catheter in your neck in a visibly obvious place and that she (the cancer sister) did not feel comfortable going out in public with tubes sticking out of her neck. She advised Sue to bring a scarf along. Good advice. We had a nice dinner at a crepe restaurant at the corner of Carl and Cole streets. I'm telling you, it's a young crowd spilling off the N-Judah train there; no gray hairs in the bunch. After dinner we took a stroll down Cole and admired the many colorful Victorian houses.

So the whole stem cell harvest thing is a go. Bridget reviewed the results of Sue's blood tests with Sue this morning and again this afternoon. Her Neupogen shots are working like a charm and her white blood cell counts are very high. Much higher than Bridget anticipated. Importantly, Sue's bone's are kicking out a lot of stem cells. It's looking like a good harvest is in store. We're scheduled to start at 7:45 a.m. tomorrow. Nothin' like the excitement of starting a harvest at first light -- 'ceptin maybe goin' fishin' at first light.

Nesting I Guess

2009-08-09T20:23:00.000-07:00

It was subtle, but it was there. I didn't notice it until we returned from the recent meeting with Dr. Wolf in San Francisco. Then I realized -- Sue's been "nesting."

Nesting is a term used for what some women do when they are pregnant, to get ready for the arrival of the newborn. They clean house, stock up on food, organize, get the baby stuff ready. It's instinctual behavior.

No, she's not pregnant. But she is scheduled to go in for a stem cell transplant on September 1. I think the fact that she will be in the hospital for the better part of a month, coupled with the information that it will take 3 to 6 months to recover, coupled with the information that this myeloma is a serious and chronic disease which will most likely cause or contribute to her death at some undetermined but possibly not too distant future time, have triggered this response.

So we cleaned out the garage and gave away, recycled and discarded about three cubic yards of stuff. We called out Elisa, the housekeeper and we're calling out Scott, the window cleaning guy. We've updated our filing. Cindy took Sue out to get some plastic storage containers for fabrics etc. Those fabric-filled containers have been marked and stored on the new shelves in the garage. Even the current sewing and quilting projects have been categorized, labeled and put away.

Maybe nesting isn't the right term for this. But now we're ready, I guess.

CR, Recidivism and Sin

2009-08-08T08:01:00.000-07:00

After reviewing Sue's charts on Augst 5 Dr. Wolf pronounced that Sue's cancer was in "complete remission." He then explained that "complete remission" (or "C.R." as cancer people like to call it) does not mean that Sue is cured or that her cancer won't come back.

As a matter of fact Sue's myeloma almost certainly will come back. The Leukemia and Lymphoma Society has an informational article about Myeloma on its Fighting Blood Cancers website. They don't talk about curing myeloma. Rather, they say that "the goals of treatment for myeloma are to: (a) slow the growth of the myeloma cells; (b)help patients who have bone pain, fatigue or other problems from their disease to feel better; and (c) provide long periods of remission (when there are no signs of myeloma and/or the myeloma is not causing health problems).

The LLS website defines "remission" as follows:

Remission. No sign of disease
Complete remission or response. No sign of M protein in the blood and urine. Normal percentage of plasma cells or no sign of myeloma cells in marrow
Partial remission or response. More than a 50 percent decrease in M protein in the blood.
Complete molecular remission or response. No sign of myeloma cells in the marrow using very sensitive tests.

Dr. Wolf put a little perspective on the complete remission diagnosis by saying it really just means there is currently no measurable amount of cancer in Sue (that is to say, it is not measurable with the instruments and techniques currently available). But there is still cancer there. If Sue had a trillion cancer cells before her (now completed) first four courses of chemotherapy, hypothetically she could still have a billion active cancer cells and nonetheless be declared to be in "complete remission."

The point of the stem cell transplant procedure (the super toxic chemotherapy part of it) is to kill as many of those remaining cancer cells as possible. The idea is to extend the time the patient spends in remission before having a relapse. Mathematically speaking, when the cancer cells start multiplying again, you want to start the inevitable exponential multiplication (exponential growth) with the lowest possible number.

Today I mentally equated multiple myeloma cancer to felons (the worst kind of felons, like child molesters, rapists, wanton killers, etc.). Think of a billion Charlie Mansons running around inside your blood. Think of society as the body, and prison as the bone marrow. The felons are recidivists. You know if you let them out they're going to wreak havoc, cause pain and dislocation and death. The last thing you want to do is let them multiply and run loose. You don't want even one paroled into your neighborhood, let alone a whole bunch of them. With apologies to my pacifist Mennonite friends, you know the best thing to do would be to kill them all. Sooner than later.

On a more personal note, we (you and me both) can equate myeloma cancer to sin. Say we had four courses of absolution from our trillion sins and are declared to be in "complete remission" from sin. Still, we know that there's a billion sins left in us, and somewhere down the road we are going to relapse. Then what are we going to do? Give up? Declare ourselves hopelessly immoral? No. We are going back for more absolution. Try to get them sin puppies back in remission.

Reconciling the necessary killing of the felons on the one hand and our own multiple absolution petitions on the other will be a topic for another day. We can only go so far with these analagies. The rotten apple has to be removed from the bushel. The cancer has to be killed.