On Tuesday evening I received a call from my oncologist on her way home from work. She wanted to give me as much notice as possible because a bed opened up on the Bone Marrow Transplant (BMT) floor and it was mine if I wanted it. Was I ready for admission on Thursday… as in a day a half? I was stunned. I, up until her phone call, was prepared for six weeks of extra time before hospital admission and here we were, just one week after my original date.
I thought about the plans I recently made like a chiropractor appointment and dinner on the patio of a lovely restaurant with a dear friend. But I was never going to pass up this spot. I would do whatever it took to be ready. My emotions needed to catch up.
The day before
I worked all day wrapping up projects, resubmitting FMLA and disability leave paperwork and creating my project list and folders so teammates of mine could jump in and help if needed. (Shout out to my INCREDIBLE team members and friends for being so awesome!)
With one day to get ready, Maggie came over and helped me pack. Essentially being my legs, I sat on my bed and pointed and she ran up and down stairs and all around my house.
Lastly, an emergency text was sent to my friend and massage therapist to see if she could squeeze me in before I went into the hospital. She came over at 6:30pm and I was able to turn my brain off for 90 minutes of massage pampering.
The morning of
I was a wreck. I didn’t sleep well at all and my brain was consumed with fear and uncertainty. I can seemingly hold things together until someone I care about is nice to me, in which case the damn breaks and the tears fall. My beautiful neighbor came over to walk my dog in the morning and I started hiccupping and ugly crying when she asked how I was holding up. I looked at her and said, “I’m scared.” She immediatly opened her arms and embraced me.
Shortly after, I received a text from a colleague telling me to hold my bald head high today and that she was holding me close to her heart. Small but important touch points matter and somehow my friends reach out exactly when I need them. I needed to be a mess to get to the point where I was in control. It was as if I couldn’t contain all the emotions I was feeling inside my body – they needed to come out. I cried tears of fear and uncertainty then got in the car and off we went to Cleveland Clinic.
Admission day went pretty fast. I got situated in my room, unpacking comfy clothes, gym shoes, my pillow and blankets.
The Interventional Radiology team came in and inserted a PICC line into the inside of my right arm. This was all done bedside in my hospital room. Apart from a little soreness when I move my arm, the line is no big deal and beats getting tons of needle sticks. This time it has two lumens, rather than three like my central line catheter. Showering once again requires wrapping a body part of mine in Press n’ Seal saran wrap — what fun!
I met my care team including my nurse, two BMT nurse practitioners, my oncologist and her fellow. Then I had a rapid COVID test to ensure I was negative. Maggie ran to Starbucks for me and we played some travel boggle. Please note: Maggie wins at all word games but I still enjoyed the game and distraction.
In the transplant world they count days in the negatives before transplant, day 0 is the day you receive the transplant and any day after is positive. So admission day yesterday, was -7.
I received my first chemotherapy, Carmustine to kick off my week-long chemo adventure. At one point towards the end, my blood pressure plummeted. Everyone in the room, my sister, Maggie and the nursing team, sounded like Charlie Brown’s mom. I couldn’t understand or hear words and had intense ringing in my ears (apparently a sign of low blood pressure). I was nauseous and dizzy all at the same time. I was administered saline and quickly recovered my blood pressure and felt better.
I walked the halls of the BMT floor a few times to get movement in and was reunited with my wonderful friend, Erin. They of course put us on opposite ends of the hall. Which is probably a good thing as it forces us to move.
As I write this on day -6, I am already hooked up to my next chemotherapy cocktail for the day which began at 6:30 am. Today’s menu includes Etoposide and Cytarabine. It’s hard to picture that receiving the chemotherapy is the easy part. The worst and most challenging time is still to come but I feel well looked after, safe and in very capable hands with an expert medical team.
If you’re confused or new to the HSCT process you can read my previous post where I try to break it down. I’m a little less than one week away from transplanting my stem cells that were harvested in May to rebuild a new and glorious immune system!
Thank you to all my friends and family for the words of encouragement and support given from near and far.