Monday, April 27, 2009

Dimmer Switch

The hardest thing about coming home is learning to pace yourself. The nurses and doctors warn you. I have given my patients the same advice for years. But, once you walk through that door, all of those ignored priorities are there to greet you. Additionally, after becoming the emaciated man twice in one year, one has a desire to find that lost muscle mass to match the new baldness.
I feel like a light switch; either on or off. I need to install a dimmer switch.

Last week was quite busy. On Monday I drove with Rebecca to Utah as she starts school again tomorrow at BYU. She will continue in her major, Marketing and Advertising and should graduate in June. She did not tell me that her apartment was on the 3rd floor. The altitude, and the multiple trips up and down winded me. Alexandria and Jeremy are doing well. Alexandria got an intern position doing quality assurance at a meat processing company. Jeremy was supposed to take the MCAT last Friday, but a computer glitch shut down the testing center delaying him by two months to take the test necessary to apply to medical school. He was, however, very calm about it; resolving to put that extra time to better use. Sam and Michelle are doing well looking forward to the slower pace of summer. I was also able to visit family and old friends (a roommate from 32 years ago) making it an enjoyable trip.

I flew home Thursday to celebrate Caitlin's 16th birthday, but the real party was on Saturday. We had a barbecue/swim party for about 25 friends. She had a great time; but for me, Sunday was now a day to crash. My health score yesterday would have been 76. Today, however, I'm back to 82.

I will now pace myself a little better.


Caitlin and Grandma Dison
blowing out candles

Sunday, April 19, 2009

The Lonely Adrenal

The adrenal glands live just above each kidney. (Hence the name ad-renal) Even though they are small in size and well hidden deep inside the body, they are very busy. Among the myriad of useful stuff they make to keep us alive and moving, are glucocorticoids or steroids. However, when the 'big guns' move into town, they can't compete. Prednisone would be like the Walmart of steroids. Clearly the low cost leader and used for everything from arthritis to poison oak. (Poison ivy for those east of the Mississippi.) After a transplant, you live on prednisone for months. This would make Decadron the Costco of steroids; buy in bulk and save.
The poor adrenal gland grows locally, (Yes, it is the Farmer's Market, stretching the metaphor a little too far.) And eventually goes out of business.
Then one day you move to a place where Costco and Walmart don't exist, and the adrenal is now your only source. That is a good thing, but now my adrenals have shrunken to the size of two raisins; it will take a few weeks to get production back to normal. What does that mean for me? I am about a half bushel low on energy.

As you can probably guess. I am off steroids now. Yeah!! But my body now has to readjust. Mostly it means I move pretty slow in the mornings. But hey, who doesn't?

I saw Dr Arai on Friday and everything is going well. My chest CT scan show resolution of the pneumonia. I finally rode my bike yesterday. Not too far, but enough to really provide a good workout.

Tomorrow I will drive with Rebecca to Utah, as she returns to BYU for the Spring term. We will miss her so much.


Health Score 83

Monday, April 13, 2009

Weekend in Pacifica

Day + 31 Health Score 85

I never expected to be 85 this soon. That is what I was prior to the stem cell transplant on my better days. It is probably because I went into work today; mostly to take care of administrative items and prepare fro my eventual resumption of duties. It felt so 'normal' to be there. I am anxious for the day when I begin to see patients again. It will be here soon.

Since we had an appointment with Dr Arai (BMT) on Friday and then would attend the Amyloidosis support group in Walnut Creek on Saturday, we decided to stay in a hotel Friday night. We stayed in the Best Western Lighthouse Inn in Pacifica. Our room was literally 10 feet from the beach. As you can see, we our continually drawn to the beach, to be Pacific. The support group is quite helpful, in that the fellow participants can often answer the questions that the doctors can't. They also had a breakout session specifically for caregivers. Those who care for the chronically ill face very difficult challenges that are often overlooked as people focus on the person that is ill. I am glad that Barbie was able to attend.

We spent Easter with our friends, the Hinson's and ate prime rib. Skip ham, I thing prime rib should be the new tradition. We then spent the evening visiting and singing. Rebecca and Caitlin sang one of the songs that they have written together. I am surrounded by talented women.


Wednesday, April 8, 2009


Day + 26 Health Score 83

It looks like NPR co-opted Barbie's phrase, 'a new normal'. Of course, they were describing the new economy, not our family life. Yesterday was a busy day. Since Santa Clara and Stanford are so far away, we try to pack in as much as we can. We left at 4:00 AM to be at Kaiser, Santa Clara at 6:15 AM for the heart biopsy. Then a visit in the cardiac transplant clinic. 20 miles north brings us to Stanford for a chest x-ray and one last visit to the ITA to make sure I was improving from the pneumonia. Everything looked well and I was discharged from the ITA to clinic. We then had an appointment with Dr Schrier at 3:00 PM to address the amyloidosis. At this point we watch the light chain levels and my symptoms. As a urologist, my older male patients can become obsessed with their PSA level (marker for prostate cancer). The same can happen with light chain levels, however, they can be vary spurious in their values, even in the same lab. So you can't put too much weight on one number. I asked them when I should get my first lab test and they at least a month, but that it can take a few months to drop. Anticipating the clinic visit, I had a Kappa light chain level done on Sunday, (probably a little too soon) To call the transplant a success, the value should drop by 50%. But which value do I use? The Stanford pre-BMT value of 32 mg/dl or the Kaiser pre-BMT value of 16.5 mg/dl? The kappa light chains level was 9.3 mg/dl, which is certainly trending in the right direction. My heart biopsy was NER, No Evidence of Rejection. I haven't had that result in over 4 months. (Then again, with no bone marrow for 2 weeks, there was nothing to cause rejection).

All in all, things are moving in the right direction. We bought an exercise bike today so that I can begin reconditioning and training. The bike may be stationary, but I am moving forward.


Sunday, April 5, 2009

Health Score Revisited

Day + 23 Health Score 83

My son, Samuel, asked me about my health score and where I thought it was going. It gave me pause to wonder how I daily arrive at this arbitrary number. As a physician, I have always been a bit suspicious when research papers attempt to quantify and statistically support data that is based on the subjective reporting of patients; which is inherently biased. It is, however, done often and there are many models which have proved the 'test of time' as statistically significant.

I can say that my approach to reporting a health score for myself is completely biased and is a daily melange of what I feel physically, emotionally and psychologically at the moment that I report it. It's more of a gestalt; (I would say gut feeling, if my gut would cooperate).

That does not mean that it does not have value. It truly reflects how I am feeling. What I find interesting is that as I reflect on the course of events over the last month I see a pattern emerge.
I made the scale from 1 - 100; 1 being dead and 100 signifying perfect health. What I experienced was as follows:

40-50 Body systems malfunction, can barely get out of bed, feel horrible
50 - 60 Can walk to bathroom, no appetite, somnolent but feel OK
60 - 70 Feeling better, but still want to be in bed, able to eat, no motivation
70 - 80 Stronger, eating well but not hungry, able to function well, limited motivation
80 - 90 Motivated, want to be out, active, can enjoy activities.
90 - 100 Back to work, Riding my bike up hills, don't remember being sick

My lowest day was 49. When I started, I said subtract 8 for unbridled optimism. That still hold true.

I would imagine the lower brackets as follows, (thankfully, I did not experience them).

1 - 10 Comfort care preparing to die, can still talk if awake.
20 - 30 On life support, ventilator, dialysis, confined to bed
30 - 40 Breathing on oxygen, on nutritional support, in pain, bed ridden, delirious

What always amazed me was that I always felt better than I intellectually knew that I should. I never really worried about how bad things were. Except for the second day of mouth sores, I never felt any pain. I realized, however, that if I was my doctor, I would have been really worried about me. As a patient, I was not. I do remember the look of concern on my doctor's faces, not reflected in their words to me when I was septic. I also remember, the look of relief only a few days later.

I don't know what it is about me that has to minimize the crisis of the moment. Even when they told me that the CT scan showed bilateral pneumonias; I had to add that they consider the pleural effusion after the heart transplant, as that made have caused chronic scarring and masquerade as a pneumonia. I had to find some explanation for it to make sense in my mind.

Samuel asked if I could ever be 100. Healthy people are 100; personal illness is not part of there thought process on any given day. I responded that, given the side effects of my medications, I can probably hope, at best, to be 95 some day. But, with me, you never know.


Saturday, April 4, 2009

Looking forward

Day + 22 Health Score 82

I see a day in the not to distant future where people will ask how I am doing. I will answer, "I'm fine." But the resulting conversations will not be about my health. We will discuss our mutual patients, our friendships, politics, the economy, movies etc... My illness will not take center stage. Everyday, now, I continue to make progress toward that goal. I do have my work cut out for me. My doctors said I would be fatigued for some time and that is true. However, yesterday we went for a walk in the neighborhood and I had no problem walking 3/4 of a mile.

I am now on the 'Hobbit' diet, but in smaller portions: Breakfast, 2nd Breakfast, Elevensies, Lunch, Dinner, Supper and Midnight Snack. I wake up hungry. Besides all of the water weight that I lost. I also dropped 10 lbs of body mass; fat and muscle. I need to build back the muscle, (not the fat). Of course, this will be easier when I am finally off steroids completely in about two weeks. Notwithstanding, I have six months to prepare to cycle 100 km.

Now that the bone marrow transplant process is done, I may not write every day. I felt that a daily log of what the treatment process involved might help another who might be facing the same ordeal. I really feel that you get a more true account when writing in the present rather than retrospect.I hope that my experience will be of some value to others.

Last night we visited with our close friends, the Boatmans, whose son Tyler underwent surgery two weeks ago for cancer. He has a Wilm's Tumor. Tyler is six. He completed radiation therapy and is now on chemotherapy. While there, Tyler and I compared our scars and catheters. I showed him where my Hickman catheter was removed and he was very curious to know if it hurt when they removed it. I reassured him that it did not. After he saw my heart transplant scar, over the next half hour he slowly removed his steri-strips, one by one. When he finished the last one he jumped up to show me his scar as well. We also talked about how life with one kidney would be normal and he could do whatever he wanted to. He asked what if the other kidney got sick. I assured him that that would be unlikely. It amazes me what insight a six year old can have toward his condition. Kids often possess more strength in these matters than do adults.


Thursday, April 2, 2009


Ready to leave Stanford

Caitlin's Honors Piano Recital

Day + 20 Health score 82

What a wonderful feeling to be home. We drove into Lincoln about 4:00 PM after sitting in the ITA all morning. My labs are essentially back to normal. We were greeted by Caitlin and Rebecca, who somehow seem more beautiful than usual. Barbie was so relieved to be home and not have to split herself, as she has done for the last month. The first thing I did was to go stand in my backyard and soak in the most beautiful day in my recent memory; 75 degrees, scattered clouds and everything is green and growing.

The timing was nice because Caitlin performed in the Honors recital tonight. She played one of my favorite pieces and was transcendent. It just feels good to be home.

I go back next Tuesday for a heart biopsy at Kaiser, Santa Clara and follow up at Stanford for oncology and BMT. It will be a busy day, but at least we are home during Barbie and Caitlin's Spring break.


Wednesday, April 1, 2009

Lesson Learned

Day+ 19 Health Score 81

“Dad, you always do that when it’s going to be a teaching moment,” Rebecca reminded me. I don’t remember what the issue was. But she was a senior in High School at the time and just had told me of some experience she had had where the outcome was undesirable. I moved forward to the edge of the couch cushion and raised my left hand with my index finger pointed as if to indicate that I was now literally going to make a point. I was just about to expound wisdom on ‘what do we learn from this experience?’ as she caught me with the observation above. I realized that my children had seen this particular pose all of their lives as I would turn every experience in to a lesson in life learning. It’s not that they resented this tendency of mine, but that it was so common in my approach to every problem.

So at this point in my journey I pause to reflect, “Class, what have we learned thus far?”
First of all, it must be stated; life isn’t fair. It was never meant to be. Bad things happen that are beyond our control. Unfortunately, because of this, some people become discouraged or despondent; some will ask, “Why me?” and even, heaven forbid, try to blame others for their problems, even blaming God. This response only leads to wasted energy and wasted time. It would be like a man sitting in a taxi in midtown Manhattan; the driver is off getting a knish and toffee peanuts. He sits alone, the meter running, while the world is passing him by.

My nature has always been different than this. I record very few failures in my life, mostly because of the way I define failure. Failure is when an outcome is bad and you don’t learn anything from the experience. Generally, I can always learn something from my ’failures’ and not make the same mistake in the future. Simultaneously, I find that often, in failure, we learn the most. I believe that we gain confidence from our successes and learn from our failures. We need both.

T o succeed is critical; for without it we would never gain the confidence necessary to progress. However, no confidence is gained if the action did not contain the risk of failure. Parents who attempt to remove the risk of failure by ‘stepping in’ at the last moment to spare their children from failure may irreparably impair their ability to act independently and build confidence.
In any worthwhile endeavor, we practice over and over to continue to improve. One particular surgical procedure done in Urology is a great example of this principle. The TURP, or transurethral resection of the prostate, is done in men with a benign enlarged prostate that have significant difficulty in urinating. The procedure is done with a specialized cystoscope where the tissue of the prostate is removed one piece at a time. Essentially, you are ‘sculpting’ out the inside of the prostate. It is one operation where experience really makes a difference, the more you do it, the better you get. With each successful outcome, your confidence increases. Every prostate is different in size and anatomy and some are very difficult. There are complications, but over time you learn both to avoid them and recognize and address them quickly when they occur. A surgeon cannot operate without the confidence that they can succeed.
Interestingly, the two animals that are the best at urinating are kids and race horses. I know this because after a successful TURP (or Roto-Router, as the patients call it) a man will often say, “I haven’t pee’d like this since I was a kid.” Or sometimes exclaim, “Doc, I’m peeing like a race horse.” But I digress.

I guess what this all means to me is that I expect things to turn out well. They always have. I am, as many have observed, ‘the eternal optimist’. Since I always prepare for the worst, and hope for the best, I am never disappointed.

Then one day, you learn you have a rare and fatal illness. How does that fit in to your life philosophy? Everyone who is faced with a diagnosis that is fatal goes through the same process. It’s is the opposite of seeing the light at the end of the tunnel. On the contrary, a light goes on and you see the door at the end of the tunnel. Life has an expiration date and death is on the calendar. Mortality is no longer and abstract idea. It is as real as what you had for breakfast today.

People react very differently to this knowledge. For me, however, it is just another challenge that I must learn from. I have learned things about myself in the last nine months that I could not have learned in any other way. This is good. Additionally, I still expect things to go well, and they have; unbelievably well; miraculously well.

Faith is a critical part of this process. I have not only my faith to rely on, but have been blessed with the combined faith and prayers of countless numbers of people. I cannot comprehend the combined effect of the faith of so many on my behalf, but I feel it every single day. There is so much goodness out there; I wish that everyone could see it.

I have just come through the bone marrow transplant. It was not uneventful. I was really sick. But my doctors were swift and skilled in their care for me. And what they learned from my complications will give them the confidence in treating those who follow me.
But I never feared that I wouldn’t make it this far. I expected things to turn out well, and they did.

Fear of failure that paralyzes a person into inaction is the greatest curse that could inflict any individual life. Faith will always swallow that fear.