I started writing this on June 27. At the time, it was a what-happened post and a what-will-happen post. It’s now July 4, my off day. Tomorrow, I get admitted to the hospital. Once in the hospital, I’ll try to post when I can, but I expect a lot of bad days. Let’s say that I am a bit nervous, a little apprehensive, more than a little scared, hesitant, relieved that it’s finally happening while wishing it wasn’t happening.
I’ve been fighting infections since the beginning of the year while waiting to be transplanted. All I know is that I cannot live as I do now with transfusions that do little more than keep me chugging along. The drugs I take to fight the infections are useful, but how long can my body handle those before they rot away my liver and kidneys and heart? I tire easily and it seems that I tire more frequently than just a few months ago. I don’t have the strength to do much more than walk about a mile. Walking used to be pleasurable. It is now work, hard work. I must force myself to do it at times. I can give up, stop any more transfusions, toss the drugs and let myself deteriorate, but that’s not me. I have to go with the only treatment that can cure this disease. I aim to beat this disease.
July 5 is the first day of chemo. July 11 is the day I get transplanted with cord blood – Day 0. If the graft takes, maybe I will celebrate two birthdays every year. Let’s change that “if the graft takes” to “after the graft takes and my bone marrow produces normal healthy cells in the right quantities.”
The week of the 26th of June –
It’s getting close. Ever since the mini-fiasco of last week, everything has been moving along at an accelerated pace. Monday was the day when I had my labs drawn for the antibody testing. Guess what? No results were to be had. I get a call in the evening from Sheila, the stem cell transplant coordinator, that the tests weren’t run because of some screw-up in the lab and that I need to get blood redrawn Tuesday morning. Shit. So, I go in on Tuesday, get the antibody labs drawn and the regular CBC check.
My Hgb on Tuesday is 7.4, down from 7.7 on Monday. The original plan was for me to come Wednesday, but since I was here in High Dose anyway, well, just juice me up with a couple of units of A+ and send me home.
Before I went home – good news. The antibody count the doctors were looking for (under 3000) was achieved. I hit the number 600. Great. The desensitization with Rituximab/Bortezomib is working. Dr. Tsai wouldn’t mind me going into the hospital the next day, but “Sorry Doc,” Sheila says, “The schedules don’t permit that.” Besides, the cord blood I will be getting has not arrived. Dr. Tsai had to agree. The plan is laid out, however.
Wednesday, I come in for another round of desensitization. That means a couple of hours in High Dose getting Rituximab/Bortezomib. While I was getting chemicalized, that nose of mine started to bleed. That means one thing. Give me some platelets. The policy has been to not give me any platelets unless I am bleeding no matter how low the platelet count. A nosebleed is a bit hard to hide. It wasn’t much of one, but enough that I got a bag of platelets. 2 more hours of boredom sitting in High Dose watching inane daytime TV game shows and news. I wasn’t planning on staying as long and maybe would have brought my Kindle to read.
I now have a plan, a calendar that Sheila gave me specifying the dates of things to come.
Friday, I go in for my regular lab checks (CBC, mainly). If needed. I get transfused. If not, I go home. I did need a couple of units of blood. It made for another long day.
What worries me now? Getting sick before July 5. I got a bit scared Wednesday night when I ran a fever in the 99.4 to 99.9 range. Thursday morning, it is back to 98.7. Maybe it was a late reaction to the chemo or platelets I received yesterday. I’m fearful of getting sick now when things are getting so, so close. My WBC and neutrophils are down since they cut back on the Granix and I hope there are enough fighting cells to ward off minor infections. As if I am not worried enough, I had the same low-grade fever Thursday night. Fortunately, normal readings since then.
Saturday, Sunday and Monday, I get to go in to High Dose for injections of KGF, keratinocyte growth factor. This is supposed to help build up the mucus in my mouth to prevent the mouth sores that I will probably get during the five days of chemo and radiation. From what I heard about mouth sores is that they are something you do not want to get.
Monday, I get to give up another tube of my blood for another antibodies check. There were a lot of unhappy people when my labs didn’t get processed last Monday. Some lab people must have got their wrists slapped pretty hard for leaving my blood lying around instead of testing it. It would be interesting to hear the conversations that took place. Because of the troubles my blood caused last week, I have to come in earlier than usual. No big deal.
I get the 4th of July off. One day is needed between the KGF and start of chemo.
The KGF injections – Saturday went well. They made me sit around for an hour afterwards to make sure I didn’t react badly. I didn’t. Sunday was an in-and-out visit. My tongue at times feels like it has a coating of some kind but it doesn’t feel like that all the time. It is either my imagination or the drug working. I’m not sure yet. The third and final injection is now in my system and hopefully producing all the mucosa it can.
I didn’t get any blood or platelets on Monday. The numbers weren’t too, too low and I wasn’t bleeding. We’re all just waiting for the antibodies testing results today. They need to stay under this 3000 number that the doctors want to see. If not, well, we’ll deal with that if it happens. The word is that if I don’t hear anything from Sheila (transplant coordinator,) I should report to admissions on Wednesday. It’s strange WANTING to be admitted to a hospital. I do, so, so badly. I am not sure I can take many more setbacks.
This is the end of this post and I will hit the Publish button on this site sometime today after I am reasonably sure that no one will call me to tell me that I’m not going to get admitted. This is called paranoia and superstition that something will jinx me again.