A Reality Slap To The Face

A very strange week with some great highs and some tough lows.

Chris and I went out to Hartwick to visit Abby on parents weekend last weekend and it was very good. Chris did great with the travel, the two hotel nights, walking all over campus, going out for dinner, shopping with Abby, etc. A very busy couple of days, requiring stamina with little down time. She never complained about being tired or not feeling well. On Monday night, we had agreed to meet with some friends from Ohio for dinner in Boston whom we had met at the BU Clinic back in June. He went through the program about 4 weeks before Chris. We had not seen them since then and they were back for their tests after 6 months. It was great to compare notes, horror stories, medication regiments, exercise routines, etc. He had grown a fair amount of hair back and was walking daily and even playing golf. It was encouraging for Chris to see the improvement in energy, confidence, and demeanor since we saw them last. It was fun to go in to Boston and enjoy a great dinner - something fairly normal that we don't take for granted any more. We received a few notes from them as they went through the various three days of testing during the week.



The rest of the week was very busy as well. Between voting, doing her daily walks, keeping the house organized, Chris was busy and really feeling confident. Wednesday night she told me "I am really feeling "normal" again". These are just incredible words to hear.



On Thursday, she drove up to NH to see her parents. She drove by herself (2-2.5 hours), went to dinner with them and raked leaves and did chores around the house on Friday, driving home late Friday afternoon. A few months ago she just started driving downtown and now she is driving to NH by herself to help her parents do jobs around their house. I know I keep saying it, but I am amazed by the energy and confidence.



After she got home from NH last night, we went to the H.S. football game. We stood and talked to good friends during the game and Chris was laughing and really enjoyed being out, even after a busy few days. Getting home, she stayed up and did more things around the house. Overall, an extremely busy, very hectic last week between NY, NH, and activities at home. Life as we want it.



Then reality set in, quickly.



We received an email Friday night from the friends in Ohio who had returned home from their three days of evaluations. They were devastated at the results that they had just heard. They, like us, thought all was going amazingly well - the ability to play golf, the daily exercises, the alertness, etc. Yet, after he showed so much visible improvement, their results came back at a reduction of the proteins of 65%. Obviously that means that his body is still producing 35% of the defective proteins - not the Hematologic Complete Response (HCR) that we all pray for. In my eternal optimism, my naivete, and daily indicators of her progress, I am afraid that we have been slowly lulled into a false sense of confidence. As posted way back months ago, the chance of a complete response is 40%-50%, a partial response from 25%-40%, and no response or fatility (the 100 days) from 10% to 25%. I think in both of our minds, we have convinced ourselves that she has has had a complete response. That is what we pray for daily. Yet, the reality of our friends results cannot be ignored. He had stated earlier that he "will never, ever, ever do chemo again". Under no cicumstances. However with only a partial response, he has no choice. The tougher news is that they did not collect enough stem cells to do a second transplant and high dose chemo back in June. He will have to do oral chemo for three weeks every three months. He'll lose the hair, have no energy, get all the sickness again, etc. I am sure this second "kick", he will beat the proteins once and for all, but for us, it is reality slapping us in the face. We have no idea what Chris' response will be when we go back in December. It could be 100% or it could be 10%. We have said we need to hope for the best, plan for the worst. But we have allowed little of the "worst" to creep into our heads. False optimism, denial, foolishness - I'm not sure. It's carried us this far, but we need to be prepared for all outcomes. Reality time is coming soon.

Keep up the prayers, this isn't over yet. Thanks to all of you.