Six Months

Its been a good week for me!  I had an appointment with my hematologist/oncologist on Thursday and it was good news across the board.  There are two types of response that show progress against the disease--hematologic response and organ response.  My hematologic response is still good showing the disease is in remission.  And, when I asked her directly if my transplant response was a complete response or a very good partial response, she reviewed my results and said it was a complete response.  Granted, the studies show there's no significant difference in overall survival between the two but I guess I feel better knowing it was the best response that could be achieved.  Yes, I even compete with myself!

My organ response is also very positive.  My liver function is improving and my tests showed normal liver function in two of the three key liver function values and the one that has improved 67% from its highest level.  Granted, I still can't lie comfortably on my stomach (which used to be my favorite sleeping position) but I can feel the size improving and I'm hopeful that one day I can sleep on my stomach again and do the Superman/Banana exercise from P90X.

My kidneys are also showing good response to treatment.  The major sign that my kidneys were damaged by the amyloids was the amount of protein in my urine.  The kidney doctor explained that the amyloids pry open the filters in the kidneys allowing protein to leak out into the urine that would normally stay in the blood.  When I was diagnosed my urine protein was 36 times the upper level for normal.  The test this week showed it had improved by 50%. Granted it's still 19 times above the normal limit but a study I read said that the average time to a 50% improvement is 11 months and I got there in 8.  Hopefully, I'll continue to have great progress on my organ response.

Today, I was able to go to one of the workout classes I attended regularly before I got sick.  It's the "Total Body Workout Class" taught by Renee Phillips at the Dublin Rec Center.  I had been going to her core class on Tuesdays but wasn't sure I was ready for the aerobic component combined with the core work that she puts us through in the TBW class.  I was able to keep up really well.  Granted, I wasn't as strong as before but I was able to do about 75% of the exercises and reps and felt really good.

It was nice to see some of the women who I attended class with previously.  They were really happy to see me back and noted how good I looked and how well I did in class.  Their encouragement meant a lot to me.  As I talked to one of the women, I told her that I wanted to work hard to get back into shape in case I need to have another stem cell transplant.  She admonished me not to think that way but I'm not doing it out of fear.  Its really something I feel I can do now to put me in a better place to deal with this disease in the future.  One reason my transplant went so well (relatively speaking) is because of my "excellent performance status" to use the term found throughout my medical record.  I need to get back to that level of physical fitness.

That sense of doing things now so I can deal with this disease in the future is what's motivating me to go to the Mayo.  I trust Dr. Efebera completely.  But I feel that having another physician who is experienced in amyloidosis and knowledgeable about my case will be another source of information for me.  I can integrate that information into my decision making algorithm.  It's the basic predictive analytics process and while I may not be building a huge data set or developing complex statistical models, I still need to have a base of information that is organized and synthesized from which I can make decisions.

In the corporate world, we spend a lot of time trying to figure out how to get individuals to work together effectively.  One of the tools Nationwide uses is the Strengthsfinder survey offered by Gallup.  Its an online assessment designed to help people uncover their hidden talents.  When I took the test last in the summer of 2012, these were my top 2 strengths--

Strategic
People who are especially talented in the Strategic theme create alternative ways to proceed. Faced with any given scenario, they can quickly spot the relevant patterns and issues. 

Self-Assurance
People who are especially talented in the Self-Assurance theme feel confident in their ability to manage their own lives. They possess an inner compass that gives them confidence that their decisions are right. 

I think those two strengths really influence how I go about managing my disease.  I need information to spot the relevant patterns and issues.  Once I have that, I'll have the confidence I need to manage the disease and trust my decisions.

Another good part of this week is today is exactly 6 months after my birthday.  Many of you who are my friends on Facebook will recall the picture that my friend Erin posted of me at the birthday celebration she had for me at her house.  I know a lot of people were surprised by the photographic evidence of how hard the disease and transplant had been on me.  I had Claire take a picture of me tonight so I could look at the progress side by side and I'd say its pretty good.

OK, so maybe the makeup I'm wearing now helps but I don't think its responsible for the majority of the improvement.

Whether its my overall health, physical appearance or physical fitness, I know I'm not fully back to where I was before I got sick but I'm so thankful for the progress I've made.  It's been a team effort between my willingness to work hard (and Alan's efforts early on to make sure I did the work), the care from my amazing physicians and staff, and God's faithfulness that has brought me so far.

I can't wait to see what the next 6 months hold!