Wednesday, September 30, 2009

The Good That You Have Done

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.

Sunday, September 27, 2009

Harps In Heaven

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?"

Thursday, September 24, 2009

ruoT yretsyM lacigaM

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.

Wednesday, September 23, 2009

Common Ground

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'

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.

Tuesday, September 22, 2009

Too Many Cooks

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

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.

Thursday, September 17, 2009

Out and Out Doesn't Work

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.

Wednesday, September 16, 2009

Home Sweet Home Again

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.

Monday, September 14, 2009

Gone To The Mountains

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

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.

Sunday, September 13, 2009

Haircut Day

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."

Saturday, September 12, 2009

All Things New

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.

Friday, September 11, 2009

Light House

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.

Thursday, September 10, 2009

Peleton Charge

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!!!

Wednesday, September 9, 2009

By Far The Hardest Thing

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"

Tuesday, September 8, 2009

Numbers Number 4

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

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.

Monday, September 7, 2009

Numbers Number 3

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."

Sunday, September 6, 2009


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

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.


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

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.

Saturday, September 5, 2009

Ghost Riders

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

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!

Friday, September 4, 2009

Numbers Game

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

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".


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.

Thursday, September 3, 2009

Hardware For The Soul

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

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 or 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."