The past two weeks have been full of appointments to get me ready for my bone marrow transplant. It's crazy how much they needed done! Thankfully CHOP is very organized and had a person set up all of the appointments for me.
On Monday (2/25), Mom, Dad, and I met with some doctors from radiation. I've never had radiation before so of course the doctor had to go over all of the possible side effects. Not my favorite. This week I have to get four doses of cranial radiation and next week I have to get six doses of full body radiation. In order to be ready for that, I had to get a CT scan of my body and my head. After they scanned my body they made a mask to protect my face during cranial radiation. That was WEIRD. Here's a video of what that was like. It felt like ramen noodles on my face.
The next appointment I had was with the dentist. I had no idea I would have to go but they sprung that on me last minute. I really hate going to the dentist. I take good care of my teeth but I get so nervous that I'm going to have a cavity! I had to get a full mouth of x-rays and then a typical clean and check. Thankfully no cavities! The last thing I needed right now was to have to deal with that so I was super relieved.
On Friday (3/1), my family and I sat through hours of different people coming in to educate us about different things regarding my bone marrow transplant. We met with my coordinator (the one who set all my appointments), physical therapy, nutrition, social work, a nurse practitioner, and so on. It was a lot of what I have already heard before. I felt like I didn't really learned anything new by the end of it to be honest.
This past Monday I had a surgery consult for the new central line I'm having placed this Wednesday. My port will stay in but this new line is called a Broviac and they use it during transplant because I need to be getting multiple medications/infusions at once.
Tuesday I had a test done for my lungs. I breathed in different ways into this tube thing. After that I finally got disconnected from Blinatumomab after a month of being on it! It was so nice to finally be done with that.
Wednesday I had a bone marrow biopsy again. They wanted to make sure that I am still in a full remission, which I am. My bone marrow is still clear of Leukemia.
Thursday I had to get a CT scan of my chest with contrast and then later I had to meet with an eye doctor. I don't wear glasses or anything so I'm not sure why that appointment was necessary.
Friday I had to go to clinic in Voorhees and get IVIG (just something I have to get monthly to help my immune system). A perk that I forgot about is that on Fridays they have a massage therapist so I totally got a nice neck and shoulder massage. After that I went next door and got an echocardiogram and EKG and that was the end of the appointments!!! In writing it kind of doesn't sound like a lot but it felt overwhelming the last two weeks.
Saturday was a fun/relax day since it would be one of the last ones for a while. In the morning we saw Captain Marvel which was so good! I got Saladworks for lunch then since it was beautiful out, we took Max on a walk in the woods. After that we went to Target and did a scavenger hunt because why not?? Mal and I won. In the evening we just hung out and watched a movie.
Today is when everything is starting. I have four days in a row of cranial radiation this week (Tuesday-Friday). Wednesday I have surgery to get my Broviac put in and I have to stay overnight in the hospital one night. Sunday is the big admission day. It's March 17th so hopefully that's lucky!
My first week or so inpatient will consist of radiation and some really high doses of chemotherapy. March 26 will be my transplant day. Just to clarify, a bone marrow transplant is not a surgery. According to bethematch.com, a bone marrow transplant "takes a donor’s healthy blood-forming cells and puts them into the patient’s bloodstream, where they begin to grow and make healthy red blood cells, white blood cells and platelets. Patients receive high doses of chemotherapy to prepare their body for the transplant. Then on transplant day, the patient receives the donated cells in a process that is like getting blood or medicine through an intravenous (IV) catheter, or tube." After that, it will be a long time of recovering and waiting for the new cells to work inside my body along with dealing with not so fun side effects from the radiation and chemo. They predict a 4-6 week hospital stay. My plan is to just take this one day at a time.
I'm not sure when I'll be able to write next since I'm not expecting to feel too great in the coming days/weeks. As always, thank you for your continued thoughts and prayers! I really appreciate the support and love! 💜
