two birthdays

Once you’re in remission and you are a transplant candidate you go from being a “cancer” patient to a bone marrow transplant patient really freaking quick. As soon as I could even say the word “Remission” my transplant coordinator immediately started scheduling all the necessary tests prior to transplant-they don’t waste any time. You have another team of doctors and nurses entirely and you become someone else’s responsibility.

It was really overwhelming because you don’t really do any planning until you know for sure that you have achieved remission. You talk about the possibility of a transplant without a guarantee. It is a lot of “IF” whenever you meet with the transplant coordinator or doctor and you talk about the transplant process.

Pre-Transplant

One week later I went through a very typical “pre work up” process where they take what seems like a million samples of blood and do several tests to make sure there are no underlying risks or issues prior to the transplant. I went through kidney and liver function tests, pulmonary function test, CT scan, ekg, dentist visit, chest x ray, echocardiogram... the list goes on. It is a lot of testing but they’re all done within a few days of each other so it’s over quickly.

I had a lumbar puncture last Friday (this is where they extract fluid from your spine to make sure that the cancer hasn’t crossed the blood brain barrier). I had several of these done when I first become diagnosed with leukemia. It usually goes like this: the doctor will withdraw about 3 ml of fluid from my spine with a long needle and then they will also push some chemotherapy through the same puncture. I mean while the needle is already in me we might as well make the most of it...so it’s like a two for one!

They are testing for the presence of cancer cells and giving me chemotherapy “just in case”.

Not to be a total baby but, I fucking hate these things. Just to be clear, someone is sticking a very long fucking needle in my spine, pulling fluid out and pushing chemotherapy (Methotrexate in this case) in-through my spine.

Honestly, I’m done pretending that this isn’t a big deal, this thing is a bitch. It gives me anxiety and scares the living hell out of me. I have had several of these procedures done in the past and like I said in a previous post, I blocked out the painful experiences. Well, I must have had so much ptsd from these procedures that last Friday I fainted and passed out while the needles were in my back all the while telling myself in my head “don’t be a little bitch, this isn’t a big deal, you got this!” I was definitely saying this with David Goggins’ inflections. Thank God they still got my sample but it was the talk of the unit-let me tell you!

Oh yeah, and then I got another one on Monday, because I had some “scant” cells that could have been cancerous. This delayed my transplant admission slightly. But I got the results yesterday and I was clear to be admitted today to Indiana University Hospital in Indianapolis.

And so we begin.

This week I will undergo multiple high dose rounds of chemotherapy. This is called “induction chemotherapy” it begins seven days prior to the actual transplant date. It is not uncommon for patients to go through radiation and chemotherapy but the treatment regimen that they currently use at IU alternates between 2 types of chemotherapy and no radiation. It will destroy all of my bone marrow and any chance of my body producing any more cells, because honestly it’s not very good at it anyway!

That means Makayla’s DNA will replace my DNA and hopefully all the cancer problems with it. I am still trying to understand this, in fact my blood type could actually change. What I’m actually getting from her are her are stem cells, this is where all the magic is stored and that will potentially save my life.

Let’s talk about my donor, Makayla. I was lucky enough to have a sister who is perfect match. One of the benefits is that she can be ready at a moments notice to go in and have her stem cells harvested. For other people in my situation finding a donor that is a perfect match is difficult and then having them available to donate can also be another challenge. Those are two challenges I don’t have to think about! The same day I went in for testing Makayla went through additional testing and questions at the hospital. They outlined the process with her, explaining the details of the transplant every step of the way.

Five days before the actual transplant takes place she will have to give herself shots to stimulate the stem cell production in her bone marrow. These actually just showed up in the mail yesterday. This will be relatively painless, but she might experience some bone and joint pain. I am incredibly lucky to have her as my match. Most people only have a 25% chance of their sibling matching but I have two! My brother Seth is also a perfect match.

Something you might also want to know is that “Day 0” is the what they call the day you receive your actual stem cells. Then day + 1 is the day after, I guess it’s a way to keep track of your process, it’s like your new birthday.

Does that mean I have 2 birthdays!? I better. So for me today is considered Day -7 of my transplant because I have 7 days before the procedure takes place-April 8th. The second Birthday.

I didn’t know anything about cancer (let alone blood cancer) before I was diagnosed with it. I didn’t need to. I have no close family that has been diagnosed with any type of cancer. But now, this is my entire world, at least at the moment.

I tried to run from it but now I’m trying to understand it.

Cancer is hard to understand.

You don’t know what you need to know until you need too know it to survive. This is such a complicated disease that is so misunderstood. It can be so intimidating you might not even want to ask someone how they’re doing.

For those of you that are curious or just want to track my progress I finally want to share. Everything. I want you to know you don’t have to understand cancer to be there for someone you love who is going through it. More than anything they just need your normal day to day bullshit.

Here’s to day -7 probably the easiest day I’ll have on this journey for a long time. I will bring meaning to the suffering and track every little step so even on my worst days I know that I still made progress.