Down, but not out.

I found out that the entire time I SHOULD be in the hospital before the transplant is 10 days.  That is as long as they don’t decide I need a couple rounds of chemo before then.  10 days and then I check into The Gift-of-Life Transplant House for 100 days give or take a few.  It’s better than checking into a hotel in my opinion, even though some of their rules are a bit strange.

The 100 days is to catch any severe graph vs host disease issues and any bad infections.  I still am having problems getting my head around the concept of 100 days, it just seems like a long time.  I think Teresa has decided that she is going to be my primary care giver for the whole 100 days, which means my mom will just come and visit.   Leaving the Transplant House at 9pm each night (remember, I said strange rules).

My mood plummeted yesterday, I think all that is going on with this new cancer, all the changes that have to happen with my life temporarily and permanently has just overwhelmed me.  When I feel overwhelmed, I get depressed and try to shut down.  I was working on the list of stuff I need to take for the 110 days, that stopped.  I just can’t do it right now.  I got 5 to 7 weeks to get it together.  (a week ago I was told the transplant would be in 6 to 8 weeks).

Luckily, my mood will improve quickly, the joys of good mental meds that keep me stableish.  I get down for a day or three or four and then my mood pops back up.  Controlled Bipolar has it’s purposes.

It’s gonna snow today.  I’m not going anywhere.  I try not to go anywhere while it’s snowing, Iowa drivers drive me nuts while it’s snowing.  The roads all get slick and the drivers here just don’t know what to do.  Not all of them of course, but enough to make it very scary at times.  So I am just gonna stay home today.  The weather people are saying it could be up to 4 inches today.

Got phone calls to make today, Dentist and Shrink’s office.  Got to make an appointment for cleaning and stuff with the Dentist office (get it done while I can) and I need to inform the Shrink’s office about what is going on with the transplant.  I don’t need to see him, just let him know I am not going to see him for a while.

I am also waiting for at least 1 phone call from Dr. Alkahteeb (the transplant doc) with the first of the results from my bone marrow biopsy.  The rest of the results won’t be available for 2 weeks or so (the chromosome study).  He may end up calling me back to Mayo this week for more testing, I hope not but it could happen.

First we have to find a donor, hoping my brother can be my donor.  He has a 25% chance of being a match.  If he isn’t a match, we go to the national registry and try to find an unrelated match.  Man preferred over woman.  Younger preferred over older.  Performing the search isn’t covered by my insurance, so we will have to kick up like 4500 dollars for someone to fill in the blanks and hitting enter on a computer (actually I assume there is more to it than that, but that is the main part of performing the search).  We found a 100% match in 2015, but that match is no longer available.  So, we may end up doing a 2018 match, and doing the transplant with an unknown person.  It’s all good, as long as they match.

After we find a donor, we start making the plan and getting me ready for the transplant.  I thought the plan was already made, but there is some doctors on my “team” who think I may need a couple rounds of chemo before I go in for the transplant.  I don’t think I need the extra chemo.  I will argue against it.  —  Getting me ready for the transplant, I have to see a cancer psychiatrist and get a bunch of tests of my organ functions.  The cancer psychiatrist is just going to determine if I understand what it happening, my answer to that is “all too well”.  And the organ function tests are to give a baseline so when the mess me up, they can tell if things go wonky from GVHD.

Graph Versus Host Disease (GVHD) is the biggest concern about the transplant.  There is a whole lot of problems that can arise from the Graph attacking my body after transplant.  There is a slight chance that I will have zero GVHD issues.  I hope to hit that percentage.  But personally, I don’t know anyone who got thru with no GVHD, and I have spoken with a lot of people who have had bone marrow/stem cell transplants.  Anyhow, like I said GVHD is the biggest concern because it can cause a complete rejection of the new graph and then I will be dead.  Simple as that.  Rejection of the donor bone marrow/stem cells = death for Jeff.  Good news is that straight out rejection is very very rare.

Mentally I am borked right now, but physically I am feeling great.  If I hadn’t been told I have blood cancer again, I wouldn’t know.  The doctors up at Mayo warned me that it could/will change really quickly and then I would feel like crap.  Heh, until that does happen, I am going to enjoy feeling good.  Nertz to cancer.


Author: Jeff Campbell

I am 50 year old guy, who beat blood cancer but is getting his butt kicked by bone marrow cancer. At this point it appears I am dying. Married and in love with the most wonderful woman in the world (27 years). She has stood by me thru a lot of crap and I love her so.

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