Bone Marrow Transplant
Hello, Friends!
So much has happened since last time I updated you all. Let's start with the most important update though. No, I did not meet Taylor Swift at our concert, but we moved up to the 6th row, I met her guitar player and one of her dancers, and I met an amazing cancer survivor (a sweet little girl named Elizabeth). We were so close to Taylor, it was insane! It was an amazing last night before this transplant journey I went on.
As soon as we got back from Maryland from the concert, my family and I headed straight to Richmond. The next day, I checked into my room in the bone marrow transplant unit at VCU and started chemo. The type of chemo I received was called BEAM. It lasted for 6 days, and usually consisted of receiving chemo for a few hours at a time in the morning and at night. It was definitely a physically and mentally exhausting experience. I didn't feel any symptoms right away. The worst chemo was the Melphalan, which I received the last day. It messes with your GI tract literally from top to bottom (sorry, TMI). They call these symptoms Mucositis, and I had this for about two weeks. It caused mouth sores and stomach issues. They put you on a Mucositis diet as well, which is NO FUN. I think this is why I lost 12 pounds haha. You can have broth, cream of wheat, crackers, and popsicles. I sweet talked my way into having dry cereal and Nilla Wafers though :)
The day I felt worst was the day of my transplant, by far. On the day of my transplant, it had been two days since I finished my chemo and was the day I got my stem cells back. That morning, I was completely exhausted and tried to get up to shower (because they have you shower every day and walk around the unit three times a day). When I got out of bed, I felt dizzy, sat down, and passed out. It was all downhill after that. I started getting sick and feeling absolutely awful. So much for an exciting "new birthday, huh? :) They call it your new birthday because it is "Day 0", and the rebirth of your immune system. My mom and grandma had decorated my room and everything. I pretty much slept the whole time they gave me my stem cells back, because I felt awful. Something interesting though, is that when you get your stem cells back, it has such a strange smell. Some people smell tomato soup, some people smell creamed corn, and some people smell other things. I thought it smelled like tomato soup.
Although I was absolutely exhausted for the first week or so following transplant, they told me I was doing really well. I was slowly gaining more energy back, and moving around more. The one thing I had to deal with though was being orthostatic, which is where my blood pressure would drop when I stand up and my pulse would skyrocket. This would make me very lightheaded and pass out. They put me on some blood pressure medicine and steroids though, which helped a lot. I am finally starting to wean off of those now. During the day, I would walk three times around the unit and look out one of the windows out at the cars. This was definitely pretty discouraging because you weren't allowed to leave the unit. All I wanted to do was go outside and feel the fresh air. I was in the unit for almost three weeks without going outside even once. I feel bad complaining though, because I was one of the lucky ones. Since I received an auto transplant (my own cells), I only had to stay in the unit for 11 days past transplant. Even for auto transplants, this is almost unheard of how early I got out. There are so many people though that receive allo transplants (donor cells) and they have to stay in the unit for months at a time.
Here are a couple of pictures from my stay in the unit:
Even though being stuck inside can be pretty depressing, the nurses in the VCU bone marrow unit brought joy every single day. I got to know almost every one of them on a personal level, and they were so sweet and good to me. It made my day to see who would be taking care of me, and we had some great conversations throughout my stay. The nurses on the bone marrow unit definitely know how to make you feel loved and special!
I was so excited to be able to leave on day +11. Although I wasn't allowed to go home yet, I was able to go stay in the apartment in Richmond with my parents. It was a short distance away from the hospital, on the canal walk. It was WAY more relaxing than staying in the hospital, let me tell you! And I LOVED getting to sleep through the night without having to be woken up every three or four hours to get vitals taken :) Cameron even got to be there when I was released from the hospital and went to the apartment, which was super exciting.
Here is the picture of me getting released from the hospital, and the view from our apartment:
We lived in the apartment for about two weeks. During this time, I had appointments to get my labs drawn every day and would see a doctor or a nurse practitioner once a week. I really have been pretty lucky, only needing fluids once, and really only needing potassium which I can take in pill form. Everyone has been very impressed with my numbers and how well I have been feeling. While we were at the apartment, I made it my goal to start getting in shape by walking. I would go down and walk the canal walk every day, whether it be with my parents, Cameron, or my friends when they came to visit. This started building my strength back up, and in the long run has really helped my blood pressure start getting back to normal. At the apartment, I was also able to start adding foods back in, and homemade meals tasted AMAZING compared to hospital food. Days in the apartment consisted of reading lots of books, binge watching the Office with my parents, walking, eating, playing board games and Nintendo switch, and going to matinee movies (in a mask of course).
So much has happened since last time I updated you all. Let's start with the most important update though. No, I did not meet Taylor Swift at our concert, but we moved up to the 6th row, I met her guitar player and one of her dancers, and I met an amazing cancer survivor (a sweet little girl named Elizabeth). We were so close to Taylor, it was insane! It was an amazing last night before this transplant journey I went on.
As soon as we got back from Maryland from the concert, my family and I headed straight to Richmond. The next day, I checked into my room in the bone marrow transplant unit at VCU and started chemo. The type of chemo I received was called BEAM. It lasted for 6 days, and usually consisted of receiving chemo for a few hours at a time in the morning and at night. It was definitely a physically and mentally exhausting experience. I didn't feel any symptoms right away. The worst chemo was the Melphalan, which I received the last day. It messes with your GI tract literally from top to bottom (sorry, TMI). They call these symptoms Mucositis, and I had this for about two weeks. It caused mouth sores and stomach issues. They put you on a Mucositis diet as well, which is NO FUN. I think this is why I lost 12 pounds haha. You can have broth, cream of wheat, crackers, and popsicles. I sweet talked my way into having dry cereal and Nilla Wafers though :)
The day I felt worst was the day of my transplant, by far. On the day of my transplant, it had been two days since I finished my chemo and was the day I got my stem cells back. That morning, I was completely exhausted and tried to get up to shower (because they have you shower every day and walk around the unit three times a day). When I got out of bed, I felt dizzy, sat down, and passed out. It was all downhill after that. I started getting sick and feeling absolutely awful. So much for an exciting "new birthday, huh? :) They call it your new birthday because it is "Day 0", and the rebirth of your immune system. My mom and grandma had decorated my room and everything. I pretty much slept the whole time they gave me my stem cells back, because I felt awful. Something interesting though, is that when you get your stem cells back, it has such a strange smell. Some people smell tomato soup, some people smell creamed corn, and some people smell other things. I thought it smelled like tomato soup.
Although I was absolutely exhausted for the first week or so following transplant, they told me I was doing really well. I was slowly gaining more energy back, and moving around more. The one thing I had to deal with though was being orthostatic, which is where my blood pressure would drop when I stand up and my pulse would skyrocket. This would make me very lightheaded and pass out. They put me on some blood pressure medicine and steroids though, which helped a lot. I am finally starting to wean off of those now. During the day, I would walk three times around the unit and look out one of the windows out at the cars. This was definitely pretty discouraging because you weren't allowed to leave the unit. All I wanted to do was go outside and feel the fresh air. I was in the unit for almost three weeks without going outside even once. I feel bad complaining though, because I was one of the lucky ones. Since I received an auto transplant (my own cells), I only had to stay in the unit for 11 days past transplant. Even for auto transplants, this is almost unheard of how early I got out. There are so many people though that receive allo transplants (donor cells) and they have to stay in the unit for months at a time.
Here are a couple of pictures from my stay in the unit:
Even though being stuck inside can be pretty depressing, the nurses in the VCU bone marrow unit brought joy every single day. I got to know almost every one of them on a personal level, and they were so sweet and good to me. It made my day to see who would be taking care of me, and we had some great conversations throughout my stay. The nurses on the bone marrow unit definitely know how to make you feel loved and special!
I was so excited to be able to leave on day +11. Although I wasn't allowed to go home yet, I was able to go stay in the apartment in Richmond with my parents. It was a short distance away from the hospital, on the canal walk. It was WAY more relaxing than staying in the hospital, let me tell you! And I LOVED getting to sleep through the night without having to be woken up every three or four hours to get vitals taken :) Cameron even got to be there when I was released from the hospital and went to the apartment, which was super exciting.
Here is the picture of me getting released from the hospital, and the view from our apartment:
We lived in the apartment for about two weeks. During this time, I had appointments to get my labs drawn every day and would see a doctor or a nurse practitioner once a week. I really have been pretty lucky, only needing fluids once, and really only needing potassium which I can take in pill form. Everyone has been very impressed with my numbers and how well I have been feeling. While we were at the apartment, I made it my goal to start getting in shape by walking. I would go down and walk the canal walk every day, whether it be with my parents, Cameron, or my friends when they came to visit. This started building my strength back up, and in the long run has really helped my blood pressure start getting back to normal. At the apartment, I was also able to start adding foods back in, and homemade meals tasted AMAZING compared to hospital food. Days in the apartment consisted of reading lots of books, binge watching the Office with my parents, walking, eating, playing board games and Nintendo switch, and going to matinee movies (in a mask of course).
Before I knew it, it was time to come back home! They let me come home a little early since I was doing so well, and Williamsburg wasn't too far away. They also started letting me come in two times a week, and then one time a week. My labs have been consistently good, and I haven't needed any repletions. Now, I'm just the girl in a mask until day +100! Around day +100, I'll get a PET scan to make sure everything is clear, and then all of my restrictions come off. I'm realizing now I haven't really talked much about my restrictions, so I'll list out some of them:
- I have to wear a mask whenever I'm in public
- I'm not allowed to touch raw food, my mom still has to make my meals :)
- No cleaning
- No touching animals that aren't mine
- I can't be around crowds
- No fast food
- No Starbucks
- No running outside
- No alcohol
- No peanuts or nuts with shells
- No caffeine (THIS ONE IS SO HARD)
- No sharp cheddar cheese (???? This one I don't get)
- No fruits or vegetables unless they're cooked when I'm out, or washed SUPER well when I'm at home (but I can't clean them, someone else has to)
That's all I can think of on the top of my head right now, but there's more, trust me :) Right now, I'm on day +45, though, and it is honestly going by really fast! I've been busy wedding planning, getting back in shape (I've been walking 4 or 5 miles a day and have started working out with my friend), and hanging out with friends. Again, I'm super thankful to have gotten an auto transplant, because after day +100, all of my restrictions are lifted. If I were to have gotten an allo, there's no telling how long I would be the girl in the mask for.
I have officially been discharged from VCU and I am able to see my oncologist in Williamsburg again. I am so glad to not have to make that trip up to Richmond every week anymore, and this is one step closer to being DONE!!
Thank you all so much again for all of your prayers, support, cards, texts, facebook messages, etc. !! I am so blessed to have every single one of you in my life, and I cannot even begin to tell you how thankful I am for every single one of you. Hopefully the next update I give you will be me telling you this journey is over! Here's to the future!
You are an amazing young lady and I'm certain God has special plans for your future! Prayers WILL continue for your journey.
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