Thursday, July 30, 2009

Busy week

I guess that once you start to feel better, life comes at you fast. Saturday we drove just north of Truckee to pick up Caitlin who had just finished a three day reenactment of the Mormon pioneers as they pulled handcarts for miles up through the Sierras. It is apropos since she is descendant from two different ancestral lines that were in those original ill-fated handcart companies that got stuck in the snow at Devil's Gate Wyoming in 1856. She had a wonderful time.
We have had many visitors this week, both family and friends. I am one of nine children in my family. Monday we had a family get-together at our house that included 7 of my 9 siblings. Five of us live in Northern California. Additionally My sister Mindy and her family came from Ohio and my sister Elaine and her family were visiting from Utah. It was a wonderful evening to re-connect and I have never seen so many people in our pool at one time. (It was 102 degrees).
Tuesday, Barbie and I went back to Santa Clara for my 1st annual heart transplant evaluation. This takes two days because it includes an extensive doctor visit, an ECG, chest x-ray, multiple labs, and an echocardiogram on day one. Day two I then underwent both a right (through the femoral vein) heart catheterization to check pressures and do a heart biopsy; as well as a left (through the femoral artery) catherterization to check the coronary vessels. In sum, the heart looks great. The vessels are wide open, the pressures are in an excellent range and the biopsy just came back showing 1a or very minimal rejection. This is doubly reassuring since I am just finishing my first course of Revlimid which was thought to have caused my severe heart rejection back in November. However, this time they treated me with cyclophospahamide to reduce the chance of the theoretical risk of rejection that Revlimid might have. It worked. This is quite significant in that it means that post heart transplant patients can have Revlimid as a treatment option. Next week I will get a light chain level to determine if the Revlimid was successful in controlling my amyloidosis.
The trip was even more memorable as Barbie suggested we not stay in Santa Clara (yet again) so we found a resort in Santa Cruz called the Chaminade Resort and Spa and spent the evening walking on the beach and found ourselves mesmerized by the flocks of brown pelicans diving and feeding in the surf just off the beach. We then drove down the coast to Capitola and dined at the Shadowbrook restaurant. It was a beautiful old three level building built on a hill overlooking a small inlet of water. The food was divine. I had a fillet Mignon with Bearnaise sauce and potatoes gratin and Barbie had the chicken Saltimboca with baked polenta. We shared a fresh peach cobbler with cinnamon gelato. It was strange to recollect that only four weeks ago I could even look at soup without a sense of nausea. I feel the miracle of good health and it feels wonderful. Again I am left with a profound sense of gratitude for all of the prayers and fasting on my behalf. How amazing it is that while I daily struggled to eat, there were other that chose to go without food so that my appetite might return. I haven't felt this good in recent memory and I have a good memory. I look forward each day to get up and go to work. Life feels so normal. The only downside is that my warped sense of humor has returned and I am driving Barbie crazy with my quips and puns. Things have reversed as the health is good and the humor is sick.

May this continue forever.


Wednesday, July 22, 2009


Wouldn't the world be a wonderful place if everyone was as excited to go back to work as I am. It's like losing your appetite and not being able to eat for two months, and then you stumble into Jack in The Box and eat three of their specially engineered pseudo-tacos and they actually taste good as they remind you of your childhood when that was the only fast food you could afford on your fixed income of collected, stray Bubble-Up bottles that you turned in for the deposit. (stream of consciousness alert) Suddenly, the mundane becomes fun and exciting.
Work was quite busy today. Yesterday I drove to Oakland for the regional chiefs' or urology meeting and there are a number of initiatives we need to put in place to continue to provide superior care during this recession. Hence, today I began work some of those projects. Additionally, I scheduled what will be my first surgery in over a year. I will be using a laser to blast a stone in a horseshoe kidney. (Yes, it really is a kidney shaped like a horseshoe.) That will be awesome.
The ride home was accentuated by driving the BMW with the sun-roof open; blasting Marc Broussard's "Home" so loud that I got a call from the international space station requesting that I turn down the volume.

Relish the mundane, it won't last forever.


(What I wanted to write but didn't was, "Muster the courage to Relish the mundane, it won't last forever and you can always Ketchup later.)

Thursday, July 16, 2009

One Year

At the Coldplay concert

It was one year ago when Barbie and I left for Rochester MN and the Mayo Clinic and that was when we began recording our journey of hope on this website. What a journey it has been, I have described it as a roller-coaster ride; in reality, sometimes it feels more like a space shuttle ride, major ups and major downs. Fortunately, right now is a major up. Three weeks ago lying in bed most of the day, I dreamt of the time when I could stand for 5 minutes without having to sit down, I imagined sitting down at Sizzler and eating the whole steak and baked potato, (which I did today) I couldn't imagine that day ever coming, but we held onto hope and all of your prayers. I am sitting at work now writing this and it feels wonderful to be back. My excellent physicians figured out that it was indeed a virus and put me on the appropriate drug and I got better. I was at a health score in the 60's for weeks, today would be an 82, despite the hiccups from the Decradron.

Tuesday was magnificent. We sat under the stars with a slight breeze and experienced Coldplay once again. I am always transported by their music since it is the soundtrack to the last year of my life, especially the songs "Death and all his friends" and "Viva la Vida" Being there with Barbie and our friends Frank and Jennifer Penney was a life affirming experience. Yesterday we went with Caitlin and Rebecca to see Harry Potter and had a great time.

At the year anniversary of writing this blog I reflect on the impact that it has had on my life. When our close friend, Steve Hargadon, set it up for us the night before we left home, we had no idea how transforming this ability to share our lives would be. Initially I thought it would just serve to inform friends and family of our whereabouts and progress; but it grew and developed into something bigger than I could have imagined. I know it has helped other people who have learned from our experiences, but I never expected the transformative and therapeutic effect that it has had on me. There is great power in sharing our personal story. It allows others the courage to share theirs and thereby opens a critical dialogue that can engender social healing and dispel the sense of isolation. All that is required is uncensored and non-judgemental honesty. Your comments, concern and prayers are the wings that have carried us. My gratitude can never be properly conveyed; but fills me with hope every day. Thank You for your continued compassion and support. We made it through the first year.


I'm seeing a theme here

Monday, July 13, 2009

Scooter Love

In the midst of all of our experiences in the last year, we still have cause to celebrate. This year when I asked Barbie what she wanted for her birthday she said she would like scooters; note the plural in that request. Generally, I am the pragmatic type and this immediately made complete sense to me. Sometimes, in the middle of it all, you just need to escape. We have spent many cool summer evenings catching bugs in our teeth as we ride with wide grins. Barbie, wanting the sleek European retro look got the Yamaha Vino, the only wine she enjoys. I got the Yamaha Zuma. I love it when I get to enjoy her birthday present so much. Personally, I think she looks really chic on her ride. And this is the only time when we can both simultaneously be 'drivers'. That is way cool.

Happy Birthday, Barbie

(No, I am not yet at 180 lbs., but I'm working on it.)

Saturday, July 11, 2009

Rain in July

As soon as I get to 180 lbs, I'll post a picture of myself. That may require the consumption of quite a few Drumsticks, (Not chicken, rather the ice cream type) Finally, on Thursday, I began to feel better. This was just in time to begin chemotherapy on Friday and today I was down again. This is probably because I had an IV infusion of Cytoxan and began taking Revlimid. Notwithstanding, I feel like the antiviral treatment is working. However, I need to pace myself and not overdo things just because I wake up craving doughnuts.

Rebecca flies home tomorrow to visit for a week, which is exciting. She did well her last term at BYU and is now working until she begins school again in the Fall. Caitlin continues to be the most difficult teenager one could imagine, (I jest, she daily amazes us with her insight and compassion). As parents we somehow hit the jackpot to have such wonderful and responsible children. Clearly this is because I married way above myself. When the mother is a saint, you end up with angels. I must beware lest I become like my dad; the epitome of hyperbole.

It is hard to plan ahead when you can't predict how you will feel tomorrow. I look for a string of three good days to indicate a pattern. However, this Wednesday I begin Decadron, which means that by Friday I should be a bipolar zombie. I think Barbie will be out of town that day. Somewhat like 'Dr Jekyll, everybody hide'.

Everyone has been so incredibly supportive. I have fantastic doctors, wonderful colleagues and staff in our department and so many friends that encourage us. If I feel down, I read the comments that people post on this site and I am lifted. Thank you. We must continue to find the beauty in everyday. Yesterday I saw a elderly man completely bent over at the waist. He could barely walk, and yet he slowly moved through the farmers' market with his daughter picking out fruit. What courage it must require of him just to leave the house. Today it rained, it rarely rains here in July and I just love that smell of fresh rain on hot pavement. What beauty did you experience today?


Tuesday, July 7, 2009

The past week has been very difficult. I have had little motivation to do anything. I haven't been on my computer for four days. Every day I would wake up, eat a small breakfast, take my medications and go back to bed. I am completely wiped out all of the time. I have had to stay home and not work. Emotionally, Barbie and I are spent. If this is only caused by a virus, then I should improve. But if the bowel problems are from amyloidosis, I may never get better. You can imagine what that feels like when the proximity of death is so palpable.

Everyday I eat and drink as much as I can tolerate; this means a constant consumption of very small amounts of food and liquid. I am maintaining my weight so far.

Today, I have had some good moments. I had to give a lunch lecture in Rancho Cordova to a group of Primary Care Physicians. Mostly I answered questions about urologic issues and cases. However, at the end I presented a case which, in essence, were all of my symptoms and findings before I was diagnosed. Finally, from one corner of the room I heard 'amyloidsosis'. I was quite pleased that someone thought of it. The physician told me after that he once had cared for a patient with renal amyloidosis. At least the other doctors will think of it in the future.

I am hopeful. I will start Revlimid this weekend which did seem to work last fall to treat my amyloidosis.


Thursday, July 2, 2009

Home again

Barbie and I returned home on Tuesday. The initial biopsy results showed cytomegalovirus (CMV) in the colon and some 'fluffy' stuff that required further identification. This turned out to be plaques of amyloid protein in the stomach and intestines. I am now on high doses of an antiviral drug called Valcyte. Additionally, they temporarily stopped my Cellcept (an anti rejection drug) to allow my immune system to fight the virus. Next week, when I am feeling better, I will start the chemotherapy to fight the amyloidosis; hence my new slogan, 'chemicals for better living'.

I am feeling a little better. Of course, just being home does that. I am still very weak, but I am eating better and getting plenty of fluids. Barbie is a wonderful nurse. Yesterday we were pleasantly surprised to have a visit from Samuel and Michelle who are here for a family reunion for Michelle's family. The pool was 86 degrees and I went swimming with Caitlin and my niece, Sofia.

I face a difficult road; the next two weeks are critical. We will have to fight these invaders now on two fronts simultaneously. I cannot do this alone nor do I have to. I will always have Barbie at my side.