My lymph node biopsy last, last week went well. They did an ultrasound guided needle biopsy so I didn’t have to be put to sleep. The results came back and it’s still Hodgkin’s lymphoma. They wanted to make sure I didn’t end up forming another kind of cancer. Lucky me, still have just the one! They took the samples from the enlarged lymph node in my underarm. So, that was awkward. I could barely put on a jacket or anything afterward. But, that only lasted for a day or so. Not bad.
The next day, I had my consultation at the Bone and Marrow Transplant Center of Georgia. My best friend, Kelsey, came with me. She took notes and asked questions while I sat there in shock. It was a long appointment. Since it’s the winter time, everyone in the office has to wear masks. We met with an RN for about an hour to go over my entire health history. Then, I had a quick physical. Then, we met with the doctor. He’s the transplant specialist. He went through every single step of the process. He even explained better what Hodgkins is and how it spreads. After we talked to him, we talked to a coordinator who is in charge of basically getting all your shit together. She’s the one who works out your schedule and helps you find caregivers, etc.
So for those of you who have been asking me about what an autologous transplant is, here is the best I can describe it. The process begins with me getting these shots that make my body produce more stem cells and lure them out of my bone marrow and into my blood stream. I think I do that for about a week. After that, I’ll have my stem cells harvested through a process called phoresis. They’ll take my blood and cycle it through some machine that sorts out the stem cells and puts the rest of the blood back in me. They’ll store and freeze my stem cells for later. The process takes a few days in order to get enough stem cells and I believe I’m in the hospital for this part.
Then, I’ll receive high-dose chemotherapy. The goal of this is to completely kill all remaining cancer cells and get me into remission. This also completely depletes my bone marrow and immune system so I’m in a highly vulnerable state at this point. Once everything is clear, they’ll transfuse the stem cells back into my blood. The stem cells have to “engraft” themselves to my bone marrow to begin building my immune system back up from scratch.
While I have no immune system, I’ll be put into isolation. This begins in the hospital and once engraftment happens, I can finish isolation at home. The safe period is 100 days. I’ll have to go to the transplant clinic pretty much every day for the first 30 days or so. Then, it’ll become less frequent… every other day. I’ll need a caregiver with me 24/7 in case anything happens to me like I get a fever or infection. The cancer center’s social worker is looking into transportation programs since I don’t have anyone who will be able to drive me into Atlanta for my appointments. I won’t be able to go into public places, eat raw foods (including fruits and vegetables), etc. But, hopefully, I will be done after that!
I’m not actually getting the transplant until next year. First, I’m starting second-line salvage ICE chemotherapy. This is what lucky patients like me get when first-line ABVD chemo doesn’t work! Yay! ICE is more toxic. My doctor tells me that the side effects will be worse and I will definitely lose ALL of my remaining hair, especially with the high-dose chemo during the transplant. But, they were pretty surprised with how much hair I still had at the end of ABVD. So, we’ll see.
ICE chemo is three consecutive days of infusion. The first day will be about 5 hours. Days 2 and 3 will be about 4 hours. Then, I will come back the next day for a Neulasta shot that is supposed to help keep my white blood cell counts up. I’ve heard really bad things about Neulasta. It makes people throw up and it makes your body hurt so much because it makes your bone marrow over produce white blood cells. Just more fun stuff to look forward to! I start ICE on December 14. I only have to do two treatments. So the next cycle will be 3 weeks after that. Then, we’ll wait a few weeks for the chemo to cycle through my body and start the transplant process.
I wanted to start a vlog series about going through the autologous transplant process because I haven’t been able to find many personal experiences about it. I’ve been connected with a few people who have had them though, so that helps. But, my computer is super slow and I keep getting these weird error messages. We’ll see how that project goes.
Other than all that cancer stuff, I had a nice Thanksgiving with my parents and my grandma at home. We had a small dinner and just hung out. I had a nice Friendsgiving the night before. So much food there! It sucks that my appetite is shot because I could have eaten so much more!
What else has happened? I got to go on a fancy lunch with the Leukemia and Lymphoma Society staff members who raised over $1,000 for the Light the Night Walk. We went to the SunDial. It was pretty cool. But, eating while you’re spinning around on top of a building is kind of nauseating.
I also went to the Atlanta Symphony Orchestra with some friends for my line sister’s birthday. It was Star Wars + the best of John Williams night. There were a bunch of Star Wars characters walking around and you could take pictures with them. They played Star Wars music. But also, they played music from Harry Potter, Jaws, Indiana Jones, etc. It was amazing!
I had a nice anniversary potluck dinner with my line sisters to celebrate 8 years since we joined this Everlasting Sisterhood. It’s so great to see my line sisters, even though we can never get all 13 together at once. We even hung up our banner and had a mini photo shoot. It was great. Again, so much food! I wanted to eat more!
We also had our sorority’s 17th anniversary. Some UGA alums got together for a lunch. We also had a toy drive for CHOA. That was really fun because you always see people you haven’t seen in a while. Everyone comes out for the big anniversary and it’s so nice to see everyone.
I suppose that’s it. I really want to do a lot of stuff before I start chemo again on Monday. I’m not sure how I’m going to react to this new chemo and then I’m going to start the transplant. So, I want to do everything! But, I’m so tired. I can barely go shopping for 2 hours. I just have so much physical pain and I get so tired. I had to cancel my New Year’s Eve trip to New York too. I’ve only been to New York once this year and it feels really weird. First world problems.
I also kind of can’t wait to start chemo again just so these crappy symptoms will go away. But, then I’ll get a whole new slew of crappy symptoms. It’s a lose-lose… but kind of a win-win? It’s weird.
As usual, positive thoughts and prayers are much appreciated. I’m really hoping this will be it. I’m tired and I just want to be done. Thank you to everyone who has been keeping up with me and my appointments. I’m sorry if I’ve been short with you. But, it gets overwhelming trying to explain everything to every single person all the time. And, honestly, it is really difficult to talk about. Please bear with my mood swings. But, I really do appreciate all of the support and love!