Match Game: Finding my donor + scanxiety

"Matchmaker, matchmaker, make me a match,

Find me a find, catch me a catch."

-from Fiddler on the Roof

I knew going into this week that it had the potential to be a big week. Today (Wednesday, 4/17), marks two weeks since I spoke with my nurse coordinator and found out that there were 35 perfect matches for me on the National Bone Marrow Registry and they began the deeper search to find the best match for me. 

The first step is for them to initiate contact with the potential donor and have them submit blood work to verify that what they see on the registry is accurate. 

Isabel said it would be about two weeks before I heard anything about the search. I was fully prepared to call in today and get any news.

However, I had some questions for her about other things and when she responded to me, she let me know that one potential donor had their blood in the lab and that another's blood is scheduled to arrive today.

This doesn't end the search. More potential donors' blood will continue to roll into the lab and they will check it as well.

After a potential donor has confirmatory blood work whose HLA (human leukocyte antigen) matches mine, they will initiate further studies. The donor will meet with a doctor who goes over what the donation process requires. If the donor continues to agree to donate, they will then have a much more extensive blood panel done to screen for things like hepatitis, cytomegalovirus (CMV), HIV, varicella (chicken pox and shingles), and other blood toxins.

If the donor passes all these tests, they'll join the list of cleared potential donors and the doctors will look at factors like age. Eventually, the donor that's selected will have stem cells taken from them through an IV. In the days prior to donation, they'll give themselves shots that will boost their production of stem cells. Then the IV will filter out their stem cells to give to me and deliver the remaining blood cells back into the donor in a process called aphresis. This is much easier on the donor than the way bone marrow used to be harvested and it can produce much more powerful cells.

Eventually, through this process, we'll find the best match for me. Isabel said that I will probably hear from her in another two weeks or so.

It was a surprise to learn that there were already samples in the lab and coming to the lab already, so I'm hoping that it'll go the same way in another two weeks. I'm thrilled by the prospects, but I'm also nervous about them finding the best match and having to wait for that process to work. 

I'm experiencing scanxiety right now, over the donor and my own appointments and scans as I go through this process, which a lot of cancer patients get -- whether it's blood work, donor matching, PET scans, MRIs, CTs, etc. It's an anxiety-ridden process, having to wait for things to come back and knowing you have almost no control over it. I'm definitely feeling it as it relates to finding a donor. I also was experiencing it over my blood work for the week. Last week, my liver enzymes were still up, but my white blood cell count was finally going down and the Hydrea seemed to be doing its job.

I got my labs back this morning. My WBC has taken a jump, but my liver enzymes have gone down and are almost normal! The other thing I'm nervous about is my creatinine which has been climbing in very small intervals. This can be a sign of kidney issues, so I'm hoping it goes down. My blasts also are at 1% -- this is very good. If they climb about 15%, I'll be in blast crisis and we'd suddenly need to get to this process much more quickly. Right now, we are shooting for last week of May or first week of June. And I really need every minute of that time to get my room clean and my laundry done, so I can come home to a room that is clean and neat, where it's easy to find whatever I need.

I was supposed to see the dentist yesterday, but I woke up sick, with a horrible sore throat and headache, so I pushed it 'til next week. The dentist remains the thing that I'm most nervous about. I'm also still waiting for the results of my Echo-cardiogram from last week.

We have started to prepare a little for my hospital stay. I'm a LuLaRoe consultant, so I was just going to bring a bunch of LuLaRoe to wear, but it all has to be washed in a very particular way and hung to dry and I didn't want my parents to have that responsibility. So we ordered 16 pair of pajamas that are either henleys or button front to be catheter friendly. We also ordered a pack of 12 pillowcases so that I can change my personal pillowcases frequently. My mom also ordered me a twin bedding set with a comforter, so that I can be warm, since hospital blankets and even one of my normal fuzzy blankets won't quite be enough for me if I have chills or am running cold.

I'm spending the rest of the week resting and trying to get better so that this doesn't interfere with the process

xo,

Heather