March has been a hectic month so far. It began with a visit from my sister and her boyfriend, John. They were here for almost a week while she was on spring break from nursing school. We didn’t do much while they were visiting. Her visit mostly consisted of eating a lot.
While she was here, we found out that my dad had two broken hips. At first, we thought he just had one. They did a couple more tests and scans and found out that there were actually cracks in both of his hips. He ended up having double hip surgery the day before my sister went back to Baltimore.
He was only in the hospital for a couple days after that. His home health nurse and doctor say he’s recovering nicely. But since most people only break one hip at a time, recovery will be longer than usual. He said he’s already feeling better and stronger. He’s getting really good at walking. He just has to use crutches to brace himself for a while. He’s already back at work and everything. So he’s doing well.
I gave my second survivor speech at another LLS event for the Team In Training Publix Marathon Inspiration Dinner. I put together a slideshow of pictures to play in the background while I spoke. Some people came up to me afterwards to wish me well and thank me. It was really nice.
I had my last Brentuximab treatment on March 14. I recovered pretty quickly. I had my PET scan on March 21. It was quick and I didn’t break the machine this time! My oncologist scheduled a follow up with me on March 28 to go over the results. But, my transplant coordinator looked up my results in the hospital system and gave me a call late Tuesday afternoon to say they wanted to begin the conditioning process for the stem cell transplant immediately since my results looked good enough to start.
On Wednesday, I had my first day of conditioning which involved my medical evaluation. I was lucky enough to be able to arrange enough people at the last minute to drive me to and from my appointments. My day began waking up at 5 am. My line sister, Diana, picked me up at 6 am to go to the transplant center in Atlanta. It was a long day!
It began with taking blood for all of my labs. They took 15 tubes of blood! Usually my lab work only takes 2-3 tubes of blood. But, she just kept going. I also had to do a VRE sample, which I’ve never done before. But, it basically consists of you taking a swab around your rectum. Awkward. I googled what it tests and I guess it’s something to do with your risk of infection… or something.
Next, I had to do my third bone marrow biopsy. I was really hoping to be sedated because it is the worst pain ever. But, they assured me that it wouldn’t be so bad this time because they’re a bone marrow center and it’s what they do. They also only took samples from one side of my hip instead of both. But, the nurse could tell I was still nervous so she gave me something to “relax.” It really wasn’t as bad as my first biopsy that I did with only local anesthesia. I still cried and screamed, but not as much. Diana was in the room the whole time, too. So that was comforting. Now, I’m just sore and it still hurts where they stabbed me. Not too bad though.
After that, I had another pulmonary function test. Those are so tiring. Breathing is difficult. But, they said everything looks good. I had to get my brain CT after that at a different office. So, Diana dropped me off there. I already had an IV from my biopsy so I didn’t have to get stuck again for the CT. I fell asleep in the machine again. But, it was quick.
My sorority sister/syands, Christine, picked me up from my CT scan since she works nearby. We had some time to kill so we grabbed some coffee and cookies. Coffee was much needed since I woke up so early. And, the cookies were so good. They had so many flavors! I wish I could have tried them all. Christine dropped me off back at the transplant center for my last couple appointments.
I went to the Atlanta Blood Services office. They went over the importance of platelet donation for stem cell transplant patients. So, if you want to help me out, go donate platelets! I’m going to need them. Since I’m technically a blood donor for myself through this autologous transplant, I had to do all the donor questionnaire stuff that you usually do for regular blood donations. That was a pretty quick meeting and then Justin met me when I was done.
Some more info on platelet donation: Platelet Information Flyer
We went across the hall back to the transplant office to meet with the health psychologist. She just went over typical questions to make sure I was mentally ready and stable… I guess? But, that was my last appointment and I was so ready to go home.
With Atlanta traffic, we eventually made it home around 3 PM. All I wanted to do was lay in bed. So that’s what I did while Justin moved my furniture around to make sure I was comfortable.
So now my transplant is in motion. I have a day of patient education. I have to find some 24/7 caregivers. I have about a week of preparing my stem cells for extraction. I have to inject myself with this medicine called Neupogen. It gets the stem cells out of the bone marrow into your blood stream so that they can collect them through a process called aphaeresis.
Once I’m done with the Neupogen injections, they’ll place my catheter through my port. I won’t be able to drive after that. Then, they’ll start the collection process which can be 1-4 days depending on how many stem cells they’re able to collect. It’s like donating blood/platelets. They’ll take my blood out and cycle it through a machine that separates the stem cells out and puts the blood back into my body. My stem cells are frozen until I’m ready for my transplant.
After collection, I’ll have about a week of high-dose chemotherapy to kill any remaining cancer cells in my body. This is when I’m supposed to lose all of my hair and my immune system will be depleted. So, I should be feeling really crappy by the end of that.
My actual transplant day, which they call Day 0 (because you’re born again!), is scheduled for April 19. I’ll be admitted to the hospital that day. Since I don’t have a caregiver that can take me to the transplant center every day after the transplant, they’ll be keeping me in the hospital for 21 days. After that, they’ll only need me in the transplant center about every other day for follow ups.
I won’t be completely recovered for about 3 months after the transplant. Even though I’ll start feeling better way before that, my body will still be rebuilding it’s immune system so I’ll be highly susceptible to infection.
It’s a long road ahead but hopefully this is the end.
Want to help me? In birthday tradition, I’m fundraising for the LLS Light the Night Walk this year. My goal for the walk is $1,000. So you can donate and sign up to walk with my team. The walk this year is October 8.
My GoFundMe for my medical expenses is also still active. With this transplant coming up, things are going to get crazy. So if you want to give me a birthday present, you can help me pay my bills! That would be much appreciated.
Also, don’t forget to go donate your platelets! The Atlanta Blood Services office has two donation locations. If you donate on my behalf, then I’ll have first dibs on your platelets. You’ll literally be saving my life. That would be a great birthday present! And if I don’t need your platelets, you’ll still be saving someone else’s life. There’s a shortage right now. It’s your time to step up and be a hero for someone!
I’ll be pretty busy up until transplant day. Hopefully, I’ll be able to keep you all updated. Things are moving now. Let’s hope this is it.