For this round of treatment, I decided not to have any visitors. I was happy to have both my parents there with me and being able to just watch some Netflix. Well thank god I didn't invite any visitors because it would have been a horrible scene for anyone around me. Within five minutes of the first drug, my body wasn't reacting well to the treatment. My body started to get really hot, I could hardly breath, and I started to get rashes all over my body. A few minutes later, I threw up my entire lunch and my nurses had to inject Benadryl and steroids into my IV. After about 30 minutes of being nauseous, I was brought into a personal hospital room to sleep. At this point, I stopped the treatment.
By mid afternoon, my doctor decided to try giving me my clinical trial again. I started to get itchy rashes all over my body again but we continued with the treatment. By 5pm, the Clinical Trial Unit at Stanford was closing so I was going to have to come back the following day for my second drug. My parents and I had already been at Stanford since 9am. It was a long day for us. Right away, I had my mom call Amtrak and cancel my midnight bus ticket back to Cal Poly. I wasn't going to get to go back to school this week. That was really stressful for me but I am lucky to have three professors that are very easy to work with and don't mind me missing class.
On Tuesday, my mom and I went back to the Clinical Trial building to get treatment drug number 2. Luckily, everything went smoothly! I was able to get my treatment and leave within 3 hours. That's a short day compared to normal days at Stanford!
I still don't completely understand why I reacted perfectly fine the first two times but then had a horrible time with treatment this week... my nurse was explaining to me that my body probably wasn't expecting to get the treatment more than once so my antibodies weren't ready for it. Because of this, I had a sort of "allergic" reaction to the B drug on Monday.
On Thursday, January 16, I also had my Bone Marrow Appointment with my new doctor and social worker. I'm at Stanford too much these days! It's my mom and my "home away from home". So here's what I learned at my Bone Marrow Transplant appointment...
- Bone marrow and stem cell transplant mean the same thing. You might hear me use either term over the next few months
- I am having an "AUTOLOGOUS" transplant which means I will being using my own bone marrow for the transplant... Thank you so much to everyone that has offered to donate but I won't need you to:) Luckily an Auto transplant is much less tiring and time consuming than an Analogous (using donor marrow) transplant.
- I will have to take off from Cal Poly SLO for Spring quarter. It will be too dangerous health wise for me to stay in school
- I bought tickets with my friends to Stagecoach for the end of April. It's a country music festival in Indio, California. Looks like I won't be able to go so if anyone wants my ticket then let me know!
- I might be spending my 21st birthday in the Stem Cell transplant hospital.. That will be a birthday I'll never forget
- I will be losing my hair again :(
- I will be going through a few rounds of intense chemotherapy again. This will right before my transplant so that my blood cell count goes down before the transplant
- Might not be able to study abroad in Lyon, France this summer. I was planning on taking a few French classes over the summer for my French concentration and minor!! But looks like I might not be able to fly or be too far away from my doctors at Stanford for 6 months after the transplant.
- I will have to live in the hospital for at least 3 weeks
- I am allowed to have visitors while I am at the hospital. Please come visit me!!!!!
- Still don't know the for sure dates for the transplant but I think it will be around end of March and April
When I met with the social worker this week, I was able to take a tour of the hospital room that I will be living in for a few weeks. For the first week, I will have a roommate with me that is going through the same procedure. Then for the next few weeks, I will have my own room where I won't be able to leave the room because of the bacteria. My doctor even said that I will get a stationary bike in my room so that I can get up and move still. That makes me happy!!
During my bone marrow appointment, my doctor also gave me a paper for me "last wishes" if I were to die. This was a scary piece of paper to see... I have to fill out information about what I want my doctor and family to do if my heart were to stop beating, or I couldn't wake up. My doctor warned me that this paper will probably never be used but it's a precaution before a big procedure like a Bone Marrow Transplant.
Shout out to my Mommy that had to give up a trip to Singapore with her best friends to take care of her sick daughter with cancer. My mom has been so awesome this past year and a half.. this was just one of many things that she had to give up over the years.
Got my Invisalign retainers yesterday.. I have to wear these bad boys for at least 20 hours a day until April or May! I feel like I'm in middle school with braces again.
And right now, as I am writing this blog post.. I'm out of breath and can hardly feel my fingers and toes. I never had side effects like this during my 12 rounds of chemo so this is new to me.
