Wow, this is getting to be a book. But I wanted to get everyone up to date with all the info I have so they won't have to call or e-mail me when I might not be able to answer them.
- In the immediate, where do I go from here?
Here are some of the probable logistics about how it all works, although the schedule is not certain at all yet and different patients require different timetables. It sounded like the most likely timetable would be to start the transplant process itself in a couple of months--it seems to take about that long to get everything in place with donors, matching, other tests, etc. But it could be sooner and it could be later. The process of finding a match and how long that takes seems to be one of the most variable things.
The hospital phase of the transplant process appears to take about 3 weeks to a month in most cases. The chemo is given, MY HAIR FALLS OUT (good thing I ordered my Aretha hat!), and a few days are required to kill all the old bone marrow cells. About 5 days after starting chemo, if I understood correctly, it is time to implant the new stem cells. In most cases, this is just like a platelet transfusion...no big deal. I am not clear if it is always done this way, however, but this sounds like the most likely procedure. Then there is a period of 2 or 3 weeks in the hospital while I wait for the new marrow cells to start cranking out all blood products--red, white, and platelets, and maybe other stuff. All of this sounded pretty good because we were afraid there might be 2 or 3 months in a hospital, and it sounds like this phase is probably more like 3 or 4 weeks.
Then there was something of a surprise. The patient has to stay "in the area" for about 90 days (typically). Is where we live (2 hours away) "in the area" you might ask. We did. Nope. Apparently "in the area" means within 30 minutes of the hospital and the transplant doctors. For this 90 days, more or less, the patient is subject to the possibility of wild blood count swings and something called "neutropoenic fever" which can be gravely serious if not recognized and treated within an hour. Of course, this is a complication that very possibly will not occur--but it is not uncommon.
So for about 90 days, I will be living in Nashville. For most of this time, I must also have a "caretaker" with me all the time. So for about 90 days, Mike will be (mostly) living in Nashville, too. We are hoping that after some short(?) period, we can do trading out, so that Mike can come back home perhaps one or two nights per week to visit DD#2 and pay bills and stuff while someone else can spend a day or so with me.
Sally and Abbey have both volunteered to be backup caretakers and we will just have to see how this all works out. I know my sister and my daughter will enjoy a day or two in Nashville occasionally. And once I can go out in public my sis will love to go antiquing on 8th with me. Mike would probably take me over there, but he doesn't like dishing or antiquing. It's much more fun going with someone who does. (BTW, once my donor is determined the possible caretakers and my children will need to go to a Caretaker Class, done by the transplant team. There are things they need to know about how I will have to live for a while and this class will explain all that. Plus they get to see where I will be in the hospital, etc.)
We are told that they "make" the patients walk a lot during recovery in the hospital and strongly encourage it afterwards. The transplant group has the entire floor of the hospital to themselves and the entire floor is rather isolated. For example, all the air supply for this floor is HEPA filtered to prevent germs from floating in--not just the individual rooms as in most similar hospital settings. Lots of walking or other exercise is encouraged afterwards as well, so the patient is encouraged to get out in the fresh air and sunshine. Tight crowded areas are discouraged, but people in general are OK--for example, we were told that movie theatres would be discouraged, but a grocery store is probably fine.
We are considering renting a space at the one of the extended stay/residence hotels for the entire Nashville time period as a base of operations for the caretaker during the hospital time and as our home away from home for the 90 days (more or less, they keep saying) afterwards. We found one that is only about 5 minutes from the hospital and close to a big park with lots of beautiful open spaces for walking, etc. They do have a monthly rate and a discount for medical stays. And insurance may pay some of this; we do not know yet. Since we had to stay overnight in Nashville to do the bone marrow biopsy, we decided to see if we could stay at this hotel overnight and check it out.
We could and we did. The conclusion is that while it is small, it will do. It's a bit larger than an average room like one would get at a Holiday Inn, for example, and has an almost full kitchen with cooktop, full sized refrigerator, microwave, kitchen cabinets (and some pots, utensils and dishes). No oven. Of course, we can bring some of our own pots, utensils and dishes. I might need my colourful dinnerware, a toaster oven and a cast iron skillet. So...more or less a hotel room with a real kitchen. Importantly, it also has high speed wireless internet; we tried this out, of course. LOL. But they do not have HGTV or FNTV on their cable. I can get used to being without my two favourite channels for awhile and intend to use some of this time to work on the plans for our house at the farm.
So here we are, Wednesday, 4 March. I have an appointment with my doc here at 2:00 this afternoon. I'm sure I need platelets, so will likely get those this afternoon. And they will probably want me to get red cells tomorrow. I'll try to keep you all updated as things progress.
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