It is day 46 since I had the transplant. I have been in Stanford since September 5th. Think back on what you have done since then. Me, I spent about 40 of those days in a hospital bed. I had tubes sticking out of more places on my body than I can remember. I have had more than my fair share of chest X-rays and CT scans. Suffered through mountains of pain and a sea of discomfort. I have been on death's door and recovered to the point where I can walk for 15 minutes with a cane and no oxygen. It has been a long hard road. I have had moments of pure happiness and clear gratitude. I feel so overwhelmingly lucky to have been supported so well by so many wonderful friends and family.
Today I walked the one block to the ITA using a very little 02 (2.5L). When I got there I went off of 02 and they checked my saturation. It is at 96% which means that my lungs are recovering. The doctors told me when I got to that level I would be ready to go home. So the plan is that after my appointment at 7:00AM on Tuesday, if everything is still going good, I will be discharged home!
I am, needless to say very happy about this. But there are other feelings as well. I am nervous, I have felt this way every time I have graduated to a new level; when I left the ICU and when I moved to the apartments. I wonder how I will perform. I am still really weak. I am walking, and in many ways better than when I went in to the hospital. I still have lots of fatigue. I am still dependent on help from others. I can hardly wait until I am completely self sufficient to the point where I can drive, or go out by myself. I know, I know, it will come in time.
There is more. I am going home after a long absence. Things have changed, my home is different. My family has been through a real trial. The Chickenhawk has been through every bit of hell that I have and then some more. She has managed a household, the schedule of 5 and 7 year old girls, and the volunteer schedule of 120 people. She did all this while being my primary caretaker for the last 8 months which means that she has not only been caring for me in every way thinkable. Not only that but she has been my advocate, she has learned as much as any non-medical professional could possibly learn about multiple myeloma, fanconi syndrome, diabetes insipidis, pneumonia, sepsis, BCNU induced pnumenitis, hematapoetics, the side effects of countless drugs, the inner workings of nursing staffs, the hierarchy of doctors in a teaching hospital, and the best food to order from hospital cafeterias, made countless trips up and down highway 80, returned many, many phone calls, and written countless beautiful email updates. All while watching her husband go from healthy athlete, partner, breadwinner and engaged loving father to a sickly walker and wheel chair bound invalid who cant muster the energy to play with his kids. It is more than anyone deserves to go through.
My daughters have started school and grown. I have seen them only once in 50 days. They no longer have the childhood comfort of knowing that mommy and daddy will always be there. They have had to learn the harsh lesson that sometimes mommy and daddy have to put other priorities in front of tucking them into bed every night. They know that I am mortal. This is more than a child that age deserves to go through.
Don't get me wrong, I do not feel guilty about this. It is not my fault. It is Cancer. That word, Cancer, has just become more and more evil to me.
I've got two more days here. Dad and I are having a great time. We went out for a meal today, This was first for me in months. Frankly, it was bit too much. Tomorrow Aunt Judy and Uncle Peter are coming to visit and I am really looking forward to seeing them both. I don't have to go anywhere and am looking forward to that.
The battle is not over, It is great news that I get to go home, Once I am discharged, I will have to return to Stanford weekly to visit the doctor. I don't think I'll be able to make that trip on my own any time soon, so I will be looking for volunteers to do the trip with me. Let me know if you might be interested.