Phase IV Begins

At 9:00 this morning the whole doctor team came in, all smiles and handshakes and congratulations; everyone loves a victory! Dana missed it, too bad, but she was busily cleaning and preparing the apartment for my arrival. When Dana arrived at 9:30 we had to meet with pharmacists, IV pack nurses, the nutritionist, and the charge nurse, and Dana had to pass the dressing rechange test (she aced it). We got out of the hospital at 12;30, ahead of schedule. Dana and I are now in the apartment in Palo Alto, and it is perfect. 5 minutes to the hospital, very clean and homey feeling.

So now begins phase IV, daily visits to the Cancer Center, fine tuning the immunosuppessant FK506 so that the new marrow does not go into attack mode, and treating any of the myriad other problems that could occur - liver and kidney being the scariest, but many others as well. So we await now and see if I continue to get lucky and graft versus host disease is minor. Day 90 is now the big target date. They say nobody goes home before 90 days, so that is the target to be in SLO, December 29.

My feeling is this bone marrow has settled in just fine, is working at making product, and I will get some annoying level of gvhd just to remind me not get cocky. My skin has always been my weak point, so that is my guess for minor problems.

I have to tell you that the last 21 days, especially days 6-18, was not like any of my other stays. Those were picnics, walks in the park. This was thru the gates of hell and back again, and don't I pity all those patients that can't tolerate pain and discomfort as it seems I can, nor heal as fast. I am blessed in this department.

Around Day 3 the mucositis set in. Remember the cross-country spikes from high school, with 1" spikes from the toe to the ball of the foot? Imagine a little cross-country meet in your mouth, starting on your lips and ending at your butt. I have said I was just a big sick tube, but not until this started did I really feel like it. That is when I last blogged in earnest. The way they deal with the pain of mucositis is by allowing the patient to control the flow of pain meds, pushing a button as often as every 15 minutes to deliver more fentanyl. (This part is somewhat hazy.)

This is all controlled by hooking you up to a monitor that reads out your vital signs (BP, pulse ox, temp) at the nurses station and triggers an alarm if anything goes wrong. So the tendency may be to overmedicate, and being aware of that, I didn't. But the system limits you much further - you are tethered to the IV pole, to the Pain Control Access system, and to the power to run this. You do not drink, eat or move except to pee and poop. I started getting all my action in my dreams, and in my bathroom attempts.

I was horrified to find myself crapping my pjs just reaching for something, or waking and trying to untether in time to make the bathroom. Not just once or twice, and I had asked the docs to reduce the fentanyl dose that was delivered. I would clean up as best I could, and then reasoned that it was the hospital's system that got me here, and hit the call button for help. Turns out that this was not uncommon.

More horrific than those accidents were the dreams. I would have to work my way up out of a dream to prove it weren't real. I woke up one night and yelled "I did not kill my dog!" I do not remember the dream, only that it was so real I was sure I had killed Woody, I had this awful sense of shame and hopelessness, and only by waking could I make it go away. I was shredded. I had other dreams about the Beauchemins involving lots of junk fancy cars parked throughout a big house, and another where Dana and I were trying to hug but we kept passing through each other. I was sure one of us must be dead, and had to swim up to reality to make sure we weren't.

In the midst of all this dreaming, I was actually making the motions that were going on in my dreams. My IV alarms started going off more frequent, and I had twisted IV lines. The nurses confronted me to say that I was twisting my lines on purpose, some nurses had seen me working at the lines. I was not in my best arguing form at 2 am on fentanyl, but managed to ask why I would do that? I thought maybe I was just twisting and turning in my sleep.

Dana pointed out to me that when I napped during the day that my hands were very busy, trying to do some actions. One night (around Day 12) I had a dream that Mikey had been abducted by Chinese mafia, and there was some overall sense that exceeding bad harm was coming to him. He was about 8 or 9 years old. When I finally rescued him he was in this sack, and I struggled mightily to open this sack. I awoke and found I was trying to open my blanket, a single layer of cloth.

I asked the doctor to untether me from the fentanyl and I would deal with the pain on my own. I did not hit the more fentanyl button for a couple of days, so he unhooked me. I rode it out from there with much better results. Other than the dry heaves from swallowing blood and mucus, the pain was already abating, so it worked out just fine. The dry heaves make a great abs workout, by the way.

While I was down there in hell, I could feel the support, the hands reaching down to me, trying to pull me up. I wanted to write a blog entry, but literally could not without ruining my laptop. But I knew you were all there, pulling for me, and I really thank you for all that support and caring, for helping me and my family rise up from the depths. The road is not finished, but that was a hard stretch and with all your help we are through it.