No News is Good News

As they say in the medical world, today was an "unremarkable day". That always seems like a very strange comment when it is said. To them, unremarkable means that everything is going as planned and there were no major incidents. To me, the entire process is incredibly remarkable, in fact it is completely amazing. So Chris' "unremarkable" day consisted of her daily trip to the hospital and her evaluation and blood work. The real indicator of activity is her white blood cell (WBC) count. The normal range for all of us is 4,000 - 11,000 WBC/Milliliter. Yesterday, her count was 9,000 (this was 6 days after the chemo). Today it was 1,200. They predict that tomorrow (Wednesday) it will be down to zero. She will then see the start of the new white blood cells (generated by the replanted stem cells) start to be produced by Sunday. Within two days, she will be back to an acceptable level (much quicker than I had understood).
She is extremely tired, sleeping often from exhaustion, but she is doing great. They ask her a laundry list of questions every day (does she have heartburn, dizziness, nausea, mouth sores, etc.) and she really has not had any in the last 2 days. Very unremarkable!!!

One thing I did today was to sit in the "Amyloid Support Group" that is held weekly at the Amyloid Center. This is really a one hour sharing session with anyone who is there as a patient or a caregiver. Chris and I sat in on this the first week of May when we were there for the initial evaluation. Back then, just about a month after we had heard of Amyloidosis for the first time, we were in a state of complete shock. We sat in this support group like "deer in the headlights", completely dazed at what was happening. There were four patients today who were being diagnosed with their three days of tests, and I knew exactly what they were feeling like. They have a blank stare, they have lost all color, and the are on the verge of a complete breakdown. Chris and I know this feeling painfully well. However, as I listened to these stories today, I was amazed to here the similarities. One woman said " I kept telling my Doctor I just did not feel right" as she was losing weight and energy. Another man said that he had been diagnosed with four different diseases, none of which were Amyloidosis and none that had any treatment. Yet, he got to Boston after doing his own research, they did the one required biopsy, and it was confirmed he has Amyloidosis. Finally a woman told her story, that she had felt bad for about 2 years and kept losing weight and getting weaker. She told herself that she was getting older and this was normal, but she had lost over 40 pounds. Her delay has caused her to get so ill that they cannot treat it with either the stem cell transplant or even oral chemo. Other stories I heard are a testament to how lucky Chris and I are. Many people are using their life savings to go through this. They have a single room in an inexpensive motel where the father( patient), the mother, and there two kids are living for the summer. They take a bus to the center everyday and the kids sit in the lobby all day long. Another man said his son left for Iraq last week for 14 months and he did not even tell him of his disease. The reason I explain these stories is that Chris and I both feel so incredibly blessed. We have gone from symptoms to treatment in about 6 months (others are years and too late), we have the financial resources to make this comfortable for Chris, we are very close to our family and friends, we have the most amazing support network, we have people praying for us daily, and I have enough experience in my job to know how to handle crisis situations. We certainly do not know what the end result of all of this will be, but one thing I am certain: we have everything going for us and we truly know how lucky we are. We know somebody is looking out for us.