I went through three cycles of CyBorD (cyclophosphamide, Velcade, and dex) with a happy outcome - complete remission! I had zero presence of malignant cells when I had a bone marrow biopsy done after those three months. Like many of you, I debated whether to have the SCT now or save that for later. After talking with my husband and my medical team, I decided to move forward. His opinion (the doctor, not my husband
) was that now was the PERFECT time to do this. An analogy that was given to us that was really helpful was this: Think about the treatment plan like a boxing match, with the jabs being chemo and the transplant being the knockout punch. Since I am playing for nothing less than an infinite complete remission (until there is a cure for this .. and I believe there will be), I decided to move forward with the SCT. I recognize this was the decision; it felt right for me, and may not be for everyone. So today is Day 1 (or -2). I checked into Robert Wood Johnson Hospital in New Brunswick, NJ around 9:30 a.m. and was in my room not too long afterwards. I am in the Bone Marrow Transplant Unit in a private room (naturally). I elected to have a port put in during my induction chemo because I have very uncooperative veins and figured it would make that process, and this one, easier. They took my vitals (height, weight, temp and blood pressure) and then left me alone for a while. A nurse walked us through a calendar of the next few weeks and what to expect, which was really helpful.
Another nurse explained some of the restrictions I can expect in the days / weeks to come, once the white blood cell counts have dropped. For example:
- No contact lenses
- No razors (well electric razors are allowed)
- No typical deodorant / anti-perspirant; must be deodorant only
- No cold cuts, fresh veggies, or fresh fruit (except bananas, because the outside of the peel hasn't touched the inside)
- No "real" showers. While there is a shower in the bathroom, you can essentially only bathe from the neck down because you can’t get the lines (in my case, the port) wet. Same with washing hair. If you have a family member or someone else help you rinse it, you can wash it, but with the same precautions
- No brushing teeth with a typical toothbrush, because of the risk of infection should your gums bleed.
One thing that has been really different than my last hospital stay when I was diagnosed with multiple myeloma is that this time I have my own pillow and comforter. And I got a memory foam mattress topper which makes a HUGE difference. I never would have imagined having a GOOD night of sleep in a hospital! Let’s see if it all works (of course this can’t combat the midnight and before-dawn vital checks).
My hope is to try and report back each day, while I have the strength and energy. I know I have read and re-read about other’s experiences and I hope I can help someone else about to go through this!
#gameon
