‘Just one more breath; not one more day, not even one more hour.. just one more breath’ was the advice I received recently from a bone marrow transplant survivor and I have lived each day with that motto. It’s such a great piece of advice because this process can feel so suffocating and anxiety ridden that anything more than a breath seems like too much to bear.
Today, at 2am in my usual middle of the night blogging session, I am day +8 from my transplant. The day of the transplant, October 6, was considered day 0. Mom was really cute and got me birthday balloons and a few presents to celebrate this ever important date in my life. Just as it was explained to me, the transplant itself was uneventful. The nurse came in with a large bag of what looked like blood, we had it blessed by the hospital chaplain and then I received the cells like any other transfusion. We figured out about half way through the blessing that the chaplain thought my first name was Sudell but none of us had the courage to correct him as he takes his job so seriously. Mom, my nurse Barb and I just exchanged small smiles knowing the mistake. It was Barb’s first time giving a transplant and she was so incredibly nervous. I had become very close to her during my first stay at Brigham and Women’s Hospital (BWH) so it was really special that it was her who gave me the cells.
The transplant has been nothing compared to the round of chemo I had leading up to it. I was admitted into the hospital after receiving the two hickman lines in my chest (see previous posts and picture below) and the next day, what they call day -5, I started receiving Busulfan and Fludarabine. I received these two chemotherapy drugs nearly 24 hours a day for 4 days, then had a day off before the transplant. Holy. shit. These drugs threw me for a loop and I still haven’t recovered completely. For what’s been exactly 2 weeks now, I have not gone a single day without extreme nausea and vomiting. I also haven’t had a proper meal in 2 weeks. Thankfully I can get my nutrition through one of my lines so my body still has strength to fight. As many times as the team has told me I’m doing great and these side effects are to be expected, I disagree. I don’t want to accept that this is me doing great but I will take their word for it. I am trusting them with my life after all.
I’m so lucky I was able to have those 3 weeks at home before the transplant for a refresher. These days I am living vicariously through my own memories to get me through each day knowing that I can have more memories like that in the future if I just keep swimming (aka fighting.) I hung out with every person I could possibly fit in, ate at every single one of my favorite restaurants (I was bulking lol), went to the beach and swam in the ocean on every clear day, went kayaking, went on a nighttime boat cruise and swam in the intracoastal where the phytoplankton bioluminescence could be seen with every move of a hand, had some much needed time at my therapist’s office, ate dinner on the beach, attended my own fundraiser and made it to my 10 year reunion! Mom and I even had a chance to squeeze in a mini-vacay on Martha’s Vineyard thanks to an old high school friend. We had the most relaxing 2 days, it was absolutely perfect. I also have already had 3 visitors, Shannon, Alicia and Dad, to Boston which makes all the difference!
Oh, and did I mention I snuggled with my dog Bumper as often as he would allow? I love and miss that guy so much.
Like the Tim McGraw song, I lived like I was dying.
There were a few days there where I truly considered not going forward with the transplant. I still have a fighting chance at a cure but after a local girl succumbed to her battle to ALL while I was home, I was terrified I would have the same outcome and end up passing in a hospital. I really questioned the quantity vs. quality of life concept. If I didn’t go forward with the transplant, I’d be giving myself maybe 6 months to live. Obviously, I decided to move forward with the transplant but those were some really dark days. Another thing that contributed to those dark thoughts, was my attempt to freeze my eggs for reproductive preservation which was not successful. There’s still the small chance that I will be able to have my own kids after this transplant but it’s the exception, not the rule. After spending a few thousand dollars and giving myself shots daily, I found out it was not working. That was a devastating blow. But, as I’ve had to do with everything else, I scooped myself off of the kitchen floor, realized that I have a new reality to accept, and move forward with my day. I’m hoping I’m that miracle story one day but now my focus is back to surviving this transplant and worry about building a family later on in life. Although, I still desperately want to #savethecheekbones, I know I gave it all I could.
Now my job is to try to stay positive and get out of my hospital room to walk everyday, take a shower, journal, and do anything I can to keep moving. I have another couple weeks before being discharged and more importantly before finding out if the transplant is working and my body is engrafting the new cells from my donor. It’s an incredible, nerve-wracking process but I’m doing it!
Huge shoutout to everyone who made my time home so special. You know who you are. Without my support system, amazing friends and family, I would not be getting through this as well as I am without each and every one of you. That includes every person who sends me a message or mails a card, you all make my days a little brighter.
My friends are back at it again with another fundraiser! It will be at Square Grouper on October 27 from 4-10pm. Please visit the Facebook page for more details. Click Here. If you can’t make it to the fundraiser but still want to donate to my transplant, you can find the GoFundMe here.
Prayers and postive vibes are always welcomed!
All my love,