Way overdue update- The Holidays and Cardiologist

My apologies upfront for those checking the blog, your interest and support are great and I feel terrible that I have not kept things as updated as intended. There has been a lot going on and I will try to provide the latest.

Christmas was hard on Chris. Not physically, but emotionally. She loves the holiday and to her it represents the best family time of the year. So while she was thrilled to have everyone home, she was worried how many more of these she would have. She was switching between the joy of having everyone around with the fear of the future. It was the most negative and depressed I had seen her in months. We had my entire family as well as her parents over for Christmas Eve (23 people) and she worked her tail off to make it happen. It was fantastic and she pulled it all off. I played a surprise Santa for the neighbors next door (they did not even know it was me for a long time) and we all had a good laugh. Yet when it came time to go the midnight service at Church, she was too exhausted to go. She loves this candlelight service and it really puts the holiday into perspective for us all. But we went without her on her urging and returned home to her being very upset and depressed. It was the lowest I had seen her since July. I know that holidays can be extremely tough on people, and Chris wanted hers to be perfect. Yet I completely miscalculated how difficult it was on her emotionally. She was so tired, and had such conflicting emotions around the family all being there while being so scared of the future. It was a tough night for her and I blame myself for not preventing this. A lesson learned.

Christmas morning was fun and Chris did well. We opened stockings and presents and had a good breakfast with a very beautiful white snow outside. She seemed to have lost her sadness and was glad that her parents spent the night. We then went to my sisters for dinner. It was a blast (she knows how to hold a party!). The dinner was great, my Aunt joined us as well (so now 24 people) and the food was fantastic. Chris enjoyed it and really had a great time. Yet, she did not join the "dance party" where the adults and the teenagers went into a big time party mode. We had the music cranked and the place was jumping. What a blast. Chris never has been much of a dancer, but it would have been nice to see her rocking out. So Christmas Day was a very good one after a tough Christmas Eve.

The following Saturday (the 27th) was Chris' birthday. We all were up at her parents in NH and all of her siblings (Tim, Sally, and Debbie) made it up from NJ and PA to help her celebrate along with all but one niece/nephew (who was in Denver). She had a good time, a good dinner, and received some nice gifts. Again, I think this may have been a bit tough emotionally as well, as these milestones often cause one to think about the future.

Today, 12/31, we had the long awaited meeting with Dr. Falk - the cardiologist in Boston. Despite 8 inches of snow here, we made it in. Chris did the stress test that she did poorly on a month earlier. This one went much better. We then met with him and discussed the results - briefly. To make it simple, and to reconfirm my now strengthening hypothesis - Medicine is an art, not a science. We took Dr Falk through the BU results from early December and basically he dismissed them saying it was not possible to see such a reduction in the Ejection Fraction. The BU cardiologist had it at 25%, and today we heard "not possible". In fact, he was very upbeat, saying that based on her stress test results and his clinical observation, she was doing very well. He gave her the green light to start yoga, continue daily moderate exercise, and potentially start an even more aggressive exercise routine. We clearly have conflicting results from two different doctors. This is very frustrating, and of course we believe the more positive results. He wants us to have BU send the actual CD (not just the report) to him so he can see them directly. As I have stated earlier, I am not sure how doctors in different organizations work together, but when I see them dismiss anothers perspective, it is very disconcerting. We have to make our own decisions as to whom we believe and who's direction we follow. Clearly an art, not a science.

We will have the actual data sent from BU to Dr Falk and we will meet with him in 3 weeks - Jan 22nd to be exact.

So we walked out of the office today feeling very positive. We asked about the potential for a second stem cell transplant/high dose chemo OR the oral chemo. He said he would wait for the March 3 day analysis to give us his perspective.

So to wrap up the year, it has been a hell of a ride. Chris started what we thought would be a normal year last January, in April we heard the word Amyloidosis for the first time, in May she was confirmed with it, in June she had all her stem cells in her body removed and was given an almost lethal dose of poison (chemo), and in July she returned home 30 pounds lighter, no hair, no immune system, no strength, and in a distant stupor. She sat listless, never smiled, never did anything on her own, and watched life go by. Yet, she has worked relentlessly to get herself back to a normal life. She walks daily, is very independent, and actually yells at me like the good old days. I can't believe I am saying this, but it is so great to here her say "Steve, stop that" or "slow down" or "fix this". Of course she usually says it nicely, but I will take it any way she gives it. Chris has also seen both friends and fellow sufferers pass away from this terrible disease. It scares the daylights out of us, and in fact sets us way back emotionally after we work so hard to rebuild our confidence and optimism.

But now, on the last day of December of 2008, we end the year very optimistic. Chris told the doctor today feels better now than she did a year ago. That is progress, that is medicine, that is the power of prayer, that is the result of hundreds of well wishers all genuinely caring about Chris. She has reconnected with old friends, she has experienced more love than she ever thought possible, she has leaned on many people and they have supported her and she has verified that her family and friends are the most valuable people in the world.

For me, I have learned more than I thought possible. I have learned about blood disease, about medicine, about hospital practices, about how doctors think, about clinical trials, support groups, drug research, mortality rates, bio-markers, and how the human body rejects the poison of chemo by attempting to force it flying out of all ends of the body. And I have learned how to clean that up after that as well. But more important than the medical side of things, I have learned an amazing amount about the human side of this. I have seen what complete fear of death looks like, I have seen how a community has given all they possibly can to help a friend in need, I have seen a sibling give up months with her own family to take care of ours, I have seen my colleagues at IBM offer their help and support, and I have seen a very brave and strong woman fight a killer disease like a prizefighter. She may get knocked down, but she gets right back up again and goes the next round. She is amazing.

I have owed my Top 10 lessons learned for months now. I think I first promised back in July. My hope is to write those this coming weekend. I pray nobody ever has to go through what we have been through, but there has been a great deal of learning and I owe it to everyone to share.

I wish you all a very Happy New Year. Drink a toast to both Chris and yourselves as you usher in the new year. I will drink a toast to all of you!!!

And again, my apologies for my delayed posts. I know how many people check it regularly.