This is going to be a long post.
I was admitted to the BMT Unit at Northside Hospital Atlanta on Tuesday, April 19. They took my blood and we settled in for a couple hours before they started my transplant. My mom and Justin took me to the hospital and a bunch of my sorority sisters (ECKO, Forté, Demure, AiKo) came a little bit later to be there for my transplant. I lucked out because the nurse that was performing the transplant was actually a mutual friend so she wasn’t just some random stranger.
A stem cell transplant is pretty interesting. The stem cells that they harvested from me before my high dose chemo were brought over from where they were being frozen and stored. They’re put in these huge syringes. There were 4 total. It was basically like a blood transfusion. They just pushed the syringes through my triple lumen catheter in my chest. I had a bunch of pre-meds. Most of them were to prevent nausea and an allergic reaction. Ironically, I threw up right after they gave me all of my pre-meds. I felt super sick while they were pushing the stem cells. But, the whole process took probably 20 minutes.
Another fun fact about stem cell transplants: you smell like garlic and tomato soup afterwards. I smelled like tomato soup for days after my transplant. When I was walking in the hallways, I always knew who got their transplant that day because you could smell it. So weird… and a little gross.
Everything was going pretty well. I got a few blood transfusions and a few platelet transfusions. About 8 days after my transplant, I developed a fever and I was feeling really bad. I basically slept all day because of all the meds they were giving me. After they tested my blood cultures, they found that I had an infection where my port and catheter were. So on April 27, they took me down to radiology to have my port and catheter surgically removed. They gave me meds to “relax” me during the surgery so they didn’t have to put me under. Justin says I was really out of it when they wheeled me back to my room. I don’t even remember the surgery or being taken back to my room… or Justin being there when I got back.
After the fever and infection were under control, everything started to get better. The only think that really sucked was that I had to have IVs the rest of the time because I didn’t have my catheter anymore. So instead of taking blood from my catheter, I had to be stuck with a needle every night. They took blood work every night at midnight. I also had vitals taken every 4 hours. So the most sleep I could get in the hospital was 3-4 hours at a time.
It was pretty uneventful once I started to recover and my blood counts started to normalized. For the first week and a half, I was throwing up 2-3 times a day. They finally changed my anti-nausea meds to something that actually worked for me. A few days before I was discharged, they started weening me off of some of my medications. So I ended up throwing up again before I left. But, it definitely wasn’t as bad as the beginning.
The nurse practitioner and doctor would come in on their rounds every morning and tell me that everything was looking good. Eventually, it was just like, “Hey. What’s up? You good? Ok. Bye.”
Eventually, the veins in my left arm were so beat up from blood work every night. I got stuck one night and no blood came out of my vein. So she tried to stick me again in my hand. No blood. I didn’t even bleed when she took the needle back out. She tried to stick me again in another spot on the back of my hand. Nothing. So 4 more nurses came in. Another nurse tried. No luck. Finally, another nurse tried and finally got some blood. They could only use my left arm because my right one had two IVs in it.
The hospital was really nice. I think I only had one nurse that I didn’t really like. Luckily, I only had her for one day. There were very accommodating to family members. There was even a pantry where you could get free ice cream! Sorry if you visited and I forgot to tell you about that. I had a lot of visitors too! That definitely made time fly by. My best friend, Kelsey, came every single weekday after work and every weekend for a few hours. Knowing that I was always going to see someone that day made things a lot more bearable. She also brought a bunch of pictures to brighten up my room. My LLS family brought me some decorations too.
I’ve been home since Tuesday. I’m so glad to be able to sleep in my own bed and not be poked and prodded every day. Definitely happy to not have to eat hospital food anymore. I’ve been sleeping so much. It feels so good.
I’ve had two follow up appointments at the BMT clinic already. I had some side pain but my doctor said I probably just strained something because he didn’t feel anything alarming when he did the exam. Otherwise, all of my blood work looked good. I’m supposed to be discharged from BMT and handed back over to my regular oncologist next week. They said usually people stay in BMT care a little bit longer but I’m doing so well.
It makes me nervous when they say I’m doing really well though. In the hospital, so many people were so much sicker than I was. This is the same thing that happened with my first 3 chemo treatments. They said I was doing great and when the PET scan came around, they found that it didn’t actually work. So I’m trying to stay positive. But, I’m really hoping this is not deja vu. We don’t have any scans scheduled yet. We’ll see what the plan is for that. I just can’t wait to be able to drive again. I don’t even really understand why I’m still not allowed to drive.
Even though I’m at home, I still have to be in isolation for a few more months. I won’t be able to go into public places until the end of July. Hopefully, I’m recovering so well that maybe it’ll be sooner than that. I can have visitors at my house though. Just don’t be sick.
I’ve been very paranoid since I’ve been home. Everything was so clean and sterile in the hospital. Being back home, I feel like everything is going to get me sick even though my white blood cell count is back to normal. I still need to redo all of my vaccinations since my immune system was wiped clean.
I can’t wait for things to get back to normal. I’m tired of going to the doctor every day. I’m really, really sick of being so dependent on other people. It feels like I’m being such a burden. My mom had to take off 3 months of work and my dad keeps having to take time off to drive me to my appointments. I hate not being able to do things on my own.
I suppose that’s all that’s happened. I’m just trying to get my appetite back. My taste buds are still all messed up. Everything tastes sour, even water. I’m also still very tired all the time. I’ve gotten a lot weaker too. A lot of recovery still.
Thank you to everyone who donated platelets for me. I think the lady at Atlanta Blood Services was blown away by the number of people who called for me. Thanks to everyone who came to visit me in the hospital. I felt like I always had the party room. Thanks to everyone who checked in on me and kept me company even though you couldn’t be there in person.
I don’t think these next few months will be too eventful since I’ll just be at home in isolation. But, I will keep you updated with any scans/doctors appointments. Congratulations for reading this whole rant! Most of you probably didn’t. I know I ramble.