Yesterday, Friday, June 9, was a long day, a hectic one at times. On days I go to High Dose, I get up at 5:30, wash up and get dressed, have some breakfast, make a lunch in preparation for a full day in High Dose, get all my pills and reading material together. I leave about 7:20. On good traffic days it takes less than ½ hour, other days more. After I get to Loyola, I text my wife that I made it there and am going into the building. Cell phone service is sketchy at best and Sprint seems to have the only reliable service inside the building. I don’t have Sprint. I don’t have cell service in the Cancer Center.
Next, I get my blood drawn, wait for the results and hope I won’t need anything. I usually do. Once I know, I call Cyndi from the room phone, let her know which room I’m in and how long my day will be. I began with a round of platelets, then snuck out for a bone marrow biopsy with Dr. Tsai, came back, got some blood going, had lunch, got some more blood going, dealt with getting appointments scheduled and talked about my future treatment plan with doctors and nurses.
Finally, I left for home, in the worst of rush hour, stopped at Walgreen’s to pick a prescription I refilled, got home, plopped into my chair only to remember that COMCAST SUCKS. (The cable went out on the main TV and COMCAST won’t be out to fix it until Monday – 4 DAYS.) The other TV works but it’s not in a comfortable place to watch and it doesn’t have all the channels the main TV has.
Plopping down wasn’t the best idea since my butt hurt from the biopsy. It wasn’t too painful, but it reminded me that 4 or 5 new holes were dug out of my pelvis across several attempts to get at some bone marrow and fluids. The one and only time my pelvis was generous was the very first time I had a bone marrow biopsy. Since then, the doctors can’t seem to find much of anything. This was the fifth biopsy.
Where would I rather have been yesterday morning? At BAGS. It stands for Breakfast at Grandma Sally’s. Grandma Sally’s burnt down and never got rebuilt, but the breakfasts continue with a handful of people I used to work with. Every few months, we get together for breakfast. It was nice. I can’t go to these or any breakfasts (or lunches or dinners.) Well, maybe I could go if the restaurant is not busy, it is mostly empty and if I eat away from anyone else. That means I eat alone or maybe with my wife. Someone somewhere even said I should carry some wipes and wipe down the table before eating. The doctors want me to avoid infections. I’m not going to argue about that. I’ve had enough that have delayed me from getting transplanted.
Cyndi says that I am not in control of my life and that the doctors at Loyola are. Cyndi is right. They have controlled my life for a while now. It stinks, but I have no or very little choice. Not letting them control my life isn’t an option. I won’t have one if I don’t let them control me. I get my 2 cents in when I can. That seems to be the best that I can do for myself. I’ll have to give this topic more thought. I really don’t have a life without the doctors.
What’s next —
June 21, 2017 could be the date that I get admitted to the hospital for my bone marrow stem cell transplant. I say “could” because there are a couple of things that need to get done first. Getting cardiac approval for the transplant is the next hurdle. I had an echocardiogram done recently. It showed some changes from the previous echo that Dr. Tsai wants cardiology to look at. The appointment should have been scheduled for some time last week and wasn’t. It finally got scheduled for Tuesday morning. Then after scheduling the appointment, the cardiologist’s office calls back and says they want me to take a stress test before the cardiologist looks at me and tells me if I am good to go or not. You would think that they would have had the sense to mention and schedule the stress test before scheduling the doctor’s appointment. Now, the stress test is scheduled for Tuesday, at the same time as the cardiologist. The cardiologist is going to have to reschedule, hopefully later in the day Tuesday or in the same week.
What a mess!
Trying to schedule anything, especially when multiple doctors are involved is a pain in the ass. Doing it on a Friday afternoon is even harder. Cyndi did the heavy work here. It wasn’t me. This is where her comment about my having no control over my life originated. She sensed that I’m being pulled in all directions without control from these different fiefdoms who don’t always play well together when it comes to appointment scheduling and coordination. Each specialty seems to live by their own rules that ignore the needs of other specialties.
Cyndi did a great job trying to get appointments scheduled, handling multiple phone conversations with doctor’s offices and myself all at the same time . I love that woman.
After the cardiologist hurdle, I get to get begin a desensitization process to reduce the number of antibodies in my system so that they do not encounter rejection problems with antibodies found in the cord blood stem cells that I will receive. My latest labs show that I have less antibodies than before which will speed up the process of getting rid of as many antibodies as possible.
The first step is to get an IV infusion of Rituximab. It takes 6 to 8 hours to administer. The way I understand it is that it doesn’t kill off any antibodies, but works on the cells that produce antibodies. Later in the week I get another drug via an IV called Bortezomib. This one only takes about 15 minutes to administer. I’m not sure what this one does. I’ll have to look that up. Once these drugs do their thing, it will be determined if I need to go through any plasmapheresis, which is used to remove antibodies from my blood.
If I get past all the above, I will be admitted into the hospital where I will spend several weeks, maybe a month or more, first getting my immune system killed, then replaced with cord blood. If things work, the cord blood will begin to produce healthy bone marrow and healthy blood cells. One problem with cord blood is that it takes longer to get cell production going than with matching donor cells. This is mostly because there are less cells in cord blood.
Another post will get into the nitty-gritty of the hospital experience. And, of course, if anything changes or comes to mind before any of the above happens, I’ll post about that.