Today I woke up sick as hell, and I knew trouble was definitely afoot. I either caught Bill’s sickness or picked something up along the way but I am feeling super shitty.
My first appointment was at 9, and it was a consult about the total body irradiation process they would be using for my myeloablative (bone marrow removal) process. They explained that it was not a large dose of radiation, and that it’s inclusion in my conditioning regimen would reduce the likelihood of a relapse, which we definitely want. I wasn’t keen on getting radiation but they did a good job explaining why I needed it and what the risks were.
After that, I got measured for radiation. This took about an hour and was kind of interesting. There were 5 people helping perform the measurements, One physicist, one student, one fellow and two radiation technicians. This was one of those awkward tests where you wear a hospital gown, but there’s basically no point. They’re constantly moving it out of the way, and everyone in the room gets a free show. You lay on a platform on your back that moves in an and out of a CT style machine. You can’t move during the procedure and measurements, so you lay very still.
They align your body with lasers on the wall and ceiling, put stickers and draw marks on your body to align the images later, and then when everything is ready, everyone leaves the room but you, and the machine moves you in and out. Then they come back in the room, and as you continue to lay still, they pull your mattress on to a stretcher, well you around the opposite direction and load you back onto the machine. Then they leave again and perform it on the other half of your body. When this is all finished, you lay on your stomach, another 15 minutes of making sure you are aligned, marked and lining up with the lasers takes place and they repeat the same two steps again.
After this I went upstairs to see the dentist. He said I had gotten an infection in my mouth after the extraction last week and would need antibiotics to deal with it. I secretly hoped this would also take care of my chest cold too! He fixed a couple more cavities and tried to temporarily patch the tooth that was damaged during the extraction last week. Some bone chips from the tooth breaking had gotten trapped along my gum line and were causing a lot of pain. He cleared them away filled the hole with a hardening antibiotic gel, and wanted to wait an extra week to see if the pain it was causing subsided and if it could be re-capped and repaired. If they could not fix it, I would need to have this tooth fully extracted as well, next week. Fingers crossed that doesn’t happen!
After that I went back to the condo and had some lunch with Bill. We then headed back over in the afternoon for my final transplant assessment, and that was where everything kinda went to….shit ??♀️
All of my pre-transplant assessment tests were passed with flying colours. My heart, lungs, organs and strength were all excellent. Everything was ready to go. I signed all of the consent forms to proceed to transplant, and we discussed a few final questions I had. One of these questions was regarding the cold I had caught, and whether the antibiotics from the dentist would take care of it. My transplant fellow calmly assured me that yes, the antibiotic would take care of the cold. I could sense the BUT.
She left the room and came back with my transplant doctor, who told me that because I was sick so close to my transplant that it could present huge complications for my recovery. He explained to me that they were considering delaying my transplant until I was healthy, and that they would give me until Friday to contact them and tell them how I was feeling before deciding how to proceed.
He explained that delaying the transplant if I wasn’t fully healthy was a better idea than pushing ahead with it, just because I was frustrated, or didn’t want to wait. They didn’t want me to do that. Any residual viruses or bacteria that were present when I started my chemo could create an immune reaction that rejected the transplant, or worse, kill me. They would prefer if I was completely healthy for 2-3 weeks prior to transplant so that they knew there were no risks. They told me they weren’t worried about moving it back, they didn’t see an immediate risk to my health and my tests all indicated that my disease was still stable and hadn’t progressed to a later stage that could complicate the transplant. They would contact the donor and sort out everything if the date had to change. All I would have to do was accept that it was moving, if it did, and that everything would be OK.
I left frustrated as hell. I have had a low ANC for almost a year, and haven’t been sick since last summer. For a whole year my body rallied and kept me healthy, but the stress, anxiety, lack of sleep, constant hospital visits and busy social schedule I’d been trying to maintain had finally gotten to me- and at the worst possible time.
As we walked back to the condo Bill said he knew I was sad, but that he was so happy to maybe have more time with me before the transplant, and I thought that was a good way to look at it too. All I’ve wanted for the last few weeks is a bit more time, and maybe the universe just has my back. ??♀️
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Day -16
