(Warning: This blog post is non-technical but purely personal. I write openly about my current health issues. This blog might be triggering for people who struggle with, or lost dear ones to, cancer and other similar diseases.)
This is the ninth post in a series on my personal road from first signs of leukemia, through diagnosis and treatment, to, hopefully, full recovery. Click here to read all posts in this series.
Not a joke
We all know them. We all have told them. Jokes (often not very funny) that start with a doctor telling their patient that they’ve got good news and bad news. Except in my case, it was not a joke (though it did meet the ‘not very funny’ requirement).
Last Thursday, January 12, I got a phone call from my hematologist. This was surprising. We had a phone appointment for Monday, January 16. Why would she call four days early?
The reason for calling early, she told me, is that she had some good news and some bad news to share, and she wanted to inform me as soon as possible.
The good news
Earlier that week I had been to the hospital to undergo yet another bone marrow aspiration. The good news is that the lab results were in, and they showed that my bone marrow is still completely clean of cancer cells.
This was not at as obvious as it might sound. Yes, I was clean after my second chemotherapy period. But cancer cells can return and regroup for a new attack. That’s why normally the stem cell transplant procedure starts within a week or two after the second chemotherapy, to give the cancer the final blow before it can regroup.
But in my case, the unexpected discovery of a tumor in my kidney had necessitated a considerable delay. It would not have been safe to undergo the stem cell transplantation procedure with that kidney cancer lurking inside me, so that cancer had to be removed first. That’s a very invasive surgical procedure, so I also needed time for my body to recover. All in all, the stem cell transplant was delayed by seven weeks.
Seven weeks, that is long enough for the leukemia to return, even after two successful chemotherapy treatments. That’s why the hematologist had ordered an extra bone marrow exam, to make sure that a return of the cancer cells would be detected early, so that she could prescribe an extra “mini chemotherapy” to counter those bad cells if needed.
As you can understand, I was quite relieved and happy to hear the good news. Just for the principle of still being clean, and also for the practical reason that chemotherapy sucks, even if it’s a “mini” version.
The bad news
But there was bad news as well. This bad news is that “my donor” (they are not actually my property, but that’s how I call the person selected to be the one to give stem cells for me to receive) has apparently been disapproved during one of the final health checks.
For privacy reasons, no details are available. Even my hematologist does not know who this donor is, nor what specific reason resulted in them being disapproved. But I do know that any potential donor undergoes lots of medical checks before they are approved for donation, partly to protect the receiving patient, but much more to eliminate any potential risk for the donor of giving their stem cells. That’s how the procedure works. The donor is more important than the recipient. Even the tiniest risk to the donor’s health disqualifies them, as the doctors do not want to sacrifice the donor’s health for a stranger (the recipient). A principle that I generally agree with, although in this case it does hurt me.
There was a silver lining to this bad news, though. Apparently, when the international database of stem cell donors was searched for a match for me, there was not just one donor found, but also a “back up donor”. So now the back up donor has become the primary donor (sort of like database servers in an Always On Availability Group failing over – except that in this case the failover time is a lot longer than any DBA would ever accept), and they will be donating stem cells for my recovery.
However, this back up donor needs to go through the same tests as the original donor. And that takes time. More time than was left in the planned schedule for my stem cell transplant procedure. And hence the procedure had to be delayed again. I now have a new tentative date of February 10 as the start of the procedure, which means that the actual administration of donor stem cells would take place on February 24.
Sadly, this delay means I don’t avoid the “mini chemotherapy” after all. Because of the additional delay, my hematologist felt it is better to prescribe this mini chemo as a precautionary measure. Even though I was still clean at the time of the last bone marrow exam, she felt that the total delay simply caused a too high risk of the cancer returning. And because that would make things even worse, she wanted to minimize that risk. By giving me that “mini chemo”.
The good news is that this mini chemo does not necessitate hospitalization. I can stay at home during the treatment, and the side effects should also be less than I’ve experienced in my previous two chemo treatments. However, due to the high toxicity of the chemotherapy medication, their usage is highly regulated in the Netherlands. This means that this specific medication can only be applied in the hospital. So this entire week, plus the first few days of next week, I have to drive to the hospital and then back home each day (a total time investment of one and a half to two hours) just to get two simple injections in my stomach.
Oh well. It is what it is. And if this keeps me healthy, then I will accept this as a necessity.
Now let’s just all cross our fingers and hope that the back up donor will get through all their checks without issues and be approved for me procedure.
You can help!
I guess that this, once more, proves how important it is that there are lots and lots and lots of candidate donors registered. So if you are reading this, if you are prepared to help a fellow human in a way that is risk free for you, then please register as a bone marrow donor! (Find an organization in your country from this list).
You might not help me personally – because I already have a donor, and because the chance of you and me being a match is very small – but you might one day get a call and learn that you will be able to save the life of someone.
Why would anyone not want that opportunity?