Sunday, April 25, 2010

Adieu

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.

Friday, April 23, 2010

Practical and Legal Advice - Part III

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.

Wednesday, April 21, 2010

Dead Woman Talking

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.

Tuesday, April 20, 2010

Practical and Legal Advice - Part II

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.

Saturday, April 17, 2010

Canto Della Terra (Song of the Earth)

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.

Wednesday, April 14, 2010

Practical and Legal Advice - Part I

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.

Monday, April 12, 2010

Ashes to Ashes

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."

Friday, April 9, 2010

She Is Risen

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.)

video

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.

Monday, March 29, 2010

Susan F. Harper


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

or

Mennonite Central Committee
1012 G Street
Reedley, California  93654




Saturday, March 27, 2010

A Beautiful Ride Redux

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"

Saturday, March 20, 2010

Plan B

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!

Wednesday, March 17, 2010

Let's Go Home, Kemo Sabe

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.

Tuesday, March 16, 2010

Letting Go

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

Sunday, March 14, 2010

PEGgy Sue

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

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."

Saturday, March 13, 2010

Freeway Chicken

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?

Friday, March 12, 2010

Hospital Moments

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.

Wednesday, March 10, 2010

Reved Up

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.

Monday, March 8, 2010

Rant

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

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

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.