On Jan 25 I was admitted to the Cleveland Clinic to have the BEAM chemotherapy regimen to get rid of my immune cells and then to have my stem cell transplant!
Day 1– I was excited! Today I received carmustine. It wasn’t bad. However, I did find it interesting how the nurses would gown up and wear double gloves while hanging the medicine. How toxic is this stuff they’re putting in me?! 😬
Day 2- 4 These days I got the same two drugs (cytarabine and etoposide) every 12 hours. The chemo starts taking its toll on you, and you end up looking super tired.
But one key thing is to stay ahead of the nausea. If have any slight inkling of queasiness, ask for meds right away. The whole chemo process is easier if you can avoid the nausea/vomiting.
Day 5– I got cytarabine and etoposide again, but this time I also got the horrible rATG (rabbit antithymocyte globulin). This drug is used to deplete your T cells. Well, I found out very quickly that me and rabbits DO NOT get along! 😠
Soon after I started getting the med, my body started shaking uncontrollably. I felt like I was in the Arctic with my teeth chattering away! They gave me Demerol (meperidine), and thankfully that took care of it. Oh but it gets worse…
I started spiking fevers, which in the MS world 🌎 is VERY bad news. I couldn’t stand, roll over in the bed and could barely move a limb. But this is okay, just take some Tylenol and get rid of the fever and things are back to normal, right? WRONG
I have difficulty swallowing during this fever time so pills 💊 are a NoNo and I could barely swallow the liquid but somehow finally got it down
Phew 😅 things got better after that
Day 6– rATG and Melphalan
This time I had no problem with the rATG. After yesterday’s disaster, heme/onc got neurology on board and they recommended high dose steroids and Tylenol around the clock ⏰ I like when they work together 😀
Now the Melphalan. The big problem with this drug is that it can cause mucositis (mouth sores). To prevent this, they try to freeze you. They keep feeding you ice chips for an hour and put ice around your neck and jaws. It is pretty hilarious if you ask me!
So the stem cell transplant was completed Feb 1. Pretty anticlimactic, if you ask me. They premedicate you with Benadryl and Ativan (i guess people get nervous). The whole thing takes about 10 minutes. And WOoHOo you have new cells🥳🎉
Now after transplant is when the adventure begins!!
Appearance. Appearance isn’t as important but it can take you by surprise when you don’t look like yourself.
My face swelled up and also my skin got a few shades darker. Not only did I look different in the mirror. BUT I’d even feel like my legs looked someone else’s.
Neutropenic Fevers. Your white blood cell count has basically reached 0. You feel miserable these 10 days! I spiked neutropenic feversX2, got 2 chest x rays, fun blood cultures, and an added bonus of a diarrhea causing antibiotic. 💩
Pancytopenia. This is when all your counts go down. Your hemoglobin, platelets and white blood cells say bye bye! Over the past ten days Ive had 3 platelet transfusions, and 1 blood transfusion. It’s been a big adventure!
Mucositis/pain. The chemo affects all the rapidly dividing cells in your body, including your mucous membranes and the linings of your mouth and esophagus. So every time I swallowed, I felt like a big spikey ball was going down my throat. I even made little popsicles with my food supplements to try and get it down! Haven’t been able to eat a real meal in 10 days! 😩
Your secretions get very thick! You need constant suctioning and cleansing of mouth. I brushed my teeth 4 times a day, used a salt water mouthwash and ended the whole routine with an anti fungal lozange! My secretions got so thick, I had to use a cough assist device to help me! Pretty cool contraption!
Loopiness. Hehe You are so out of it from all the pain meds you are getting. You start asking nurses random questions and your caretaker gets sad 😢 because you’re saying gibberish. Truthfully, I don’t remember anything. To truly understand you need to ask everyone around me. I just know when I started speaking like a normal human, all the nurses were so happy 😀
And that was my experience with the transplant.
Here are some outside perspectives:
Husband: You would text every morning with updates and then suddenly the updates stopped.
Mother: You’re breathing was so scary! You made gurgling noises, and you wouldn’t let go of my hand!
Father: Is this treatment worth it?
Nurse: You didn’t want me to leave the room! You were so scared.
Receptionist: Hey! I can understand you now! (Apparently I couldn’t speak well)
Physical Therapist: wow! It’s good to see you awake and not out of it!
The transplant is a lot to go through, but if it stops the MS, it’ll all be worth it! 😀