Sunday, May 31, 2009

On the Right Path

Memorial Day
My nephew, Michael, found me a new heart floating in Folsom Lake

Sometimes the path to recovery feels like hiking on the Appalachian Trail. So not to trip, you spend most of your time looking down to avoid tripping over half submerged roots and protruding rocks. Occasionally you have to stop and look up to see the pale green translucent light as the sunlight pours through the spring leaves above. Then you remember why you are on the trail in the first place.

The last month has been quite difficult. I have slowly been getter weaker, and subsequently, more despondent. My appetite has diminished and I have to force myself to eat. My labs results do not show a positive response to the Stem Cell Transplant. Everyone says that it is still to early to tell, but I can't always remain positive about the future. Essentially, I have no idea what is going on. Yes, this is from the guy who always has an explanation for everything. Not being able to write something positive left me without a desire to write; but that is disingenuous. I shouldn't be afraid to reveal all sides of this journey. In desperation I did something without getting my doctors' approval first. I started to take steroids again. Ironically the thing I had so been looking forward to stopping for so long. I will see my BMT and Oncology physicians at Stanford on Tuesday to discuss future treatments; I feel that they are going to start me on steroids anyway. However, in only 24 hours, the improvement is more than coincidental or purely placebo. The foot neuropathy that was so uncomfortable is lessened and my energy has increased. We are flying to New York on Wednesday for a reunion at Yale University and I needed to be stronger for the trip. I just couldn't wait any longer.

I keep reminding myself to be patient. All this will improve with time. The more time the better. As I incline my gaze upward, the light is always there. I am reminded that I am progressing on the right path, one slow step at a time.


Friday, May 22, 2009

Between a rock and a hard spot

Last Saturday I got a little stoned, but it passed. I had symptoms of a stone for the past month and finally it passed. This stone has been sitting in my left kidney for the past 8 years and gave me the first symptoms of discomfort the night that I went into septic shock from the bone marrow transplant. Stones always pass at the most inopportune time. The last few weeks have been tough. I am constantly fatigued; making routine activities difficult. I know that they said it would take a year to recover and it has only been two months, but I was hoping for a little more energy. I am constantly wondering whether all of my symptoms are from drugs side effect, chemo side effects, persistent amyloidosis or infection. Recently, I have developed significant peripheral neuropathy which makes it hard to sleep. One wonders if this will stabilize, improve or continue to worsen. All of this affects my motivation.

I will return to work part time in 3 weeks. I know this will help as I am able to focus on others rather than on myself. I guess I have to be patient and accept each day as it comes.


Tuesday, May 12, 2009

A blast from the past

As you might have guessed, after the requisite fiasco at the DMV, Caitlin is now a licensed driver. It was so surreal to see her round the corner last Wednesday with her behind the wheel and me standing dumbfounded in the middle of the road. I am so used to seeing her drive from the passenger seat with my right foot firmly planted on the imaginary brake. Now she can drive where and when she needs to and we don't need to schedule our lives around her chauffeur schedule.
Since she is now driving the Prius, I have been relegated to using my bike to get around.

I jest. Now I have the distinct pleasure to drive my BMW 325xi. I haven't really driven this car since my kids took it back to Utah for school two years ago. It is really fun to drive. But Caitlin has not yet learned to drive a manual transmission, so I am stuck with it.

Today I rode my bike 11.2 km (7 miles) only 88.8 km left before I am ready to ride a metric century. I have till October to train for this event. You can't imagine how wonderful it felt to be riding the Lincoln countryside on such a beautiful day. My muscle strength is starting to return so that I don't look so much like 'stick man'. Three weeks ago, Dr Arai, concerned that my pneumonia had not completely resolved, put me back on an anti-fungal called Vfend (more like offend). I immediately lost all energy. After two weeks of suffering, my labs came back showing anemia and moderate renal failure. My test for amyloidosis also worsened. I asked her if I could stop the drug since my follow up CT scan showed resolution of the pneumonia. She agreed. Within 24 hours I went from a 75 to an 83. It is hard when you realize that most of your symptoms are side-effects from the life saving drugs that you must take.

I visited my friend, Debbie, at Stanford yesterday. She is just now starting the BMT process and is in good spirits. it is my hope and prayer that she does well. Our parallel journeys continue.


Monday, May 4, 2009

Still Waiting

It seems that I am always waiting for something. Last week I ordered through two gallons of energy and a half pound of motivation; it hasn't arrived yet. While I was visiting the Urology department today, one of our nurses asked what my health score was. Honestly, I had to report it at about 77. I think it still may be from all of the medication changes. My doctor put me back on the exotic anti fungal at the same time that I stopped my steroids. Sue, the heart transplant nurse warned me that it can take a month to recover adrenal function sufficient to supply the body's basic needs.

The great news this week is that Barbie will take her last Organic/Biochemistry exam on Wednesday. She has spent the last 4 months studying all of her waking hours and 30% of her sleeping hours. Caitlin has an important test on Wednesday as well; her driving test to get her license. It is a big day when the 'baby' of the family can jump in your car and just take off on her own. I guess that means we're done being parents. No worries.

My medical assistant, Dina, told me in no uncertain terms that she would not let me come back to work until I had a note from my doctor. Dr Sardar, my good friend and oncologist, provided me with such a note and, 'barring some unforeseen incident', I will return on June 15th. I will, however, start at part-time.


Some doubters might say that a person with amyloidosis will overcome it 'when pigs fly'.
However, I have already noticed that the swine flu.
(I couldn't resist)