The Main Event
It's been over a month since my stem cell transplant so I guess it's time to try to sum it all up for a blog post. First of all I'm happy to say that I survived. It was an experience that I don't particularly care to repeat (even though I may have to in a few years) but now that I'm on the other end it wasn't too scary.
Here's what happened... The day before the actual transplant I got a high dose of chemotherapy. The dose is so high that the stem cell transplant is actually necessary to reboot your immune system. In fact, most, if not all, of the unpleasantness to follow is a result of the chemotherapy.
The transplant itself was remarkably quick and simple. I was in a room with a bed, a nurse, a doctor and a technician. They defrosted my frozen stem cells (looked like an ordinary bag of blood) and then hung it from a hook on the ceiling. The bag was attached to my central line (a kind of permanent IV in my chest) and then gravity-fed into me. It felt weird and gave me a really terrible taste in my mouth, but was over before I knew it. I was monitored for a little while then sent on my way back to the hotel.
I should tell you about the hotel, or prison. In normal times there is a wonderful lodge available for patients to stay in while going through treatment in Halifax. It provides meals and has rooms with TVs, games, puzzles, etc. They even have yoga classes and visits from therapy dogs. Unfortunately the lodge was closed because of Covid-19. Instead we were put up in a hotel. A hotel that was under construction, had only one functioning elevator used by both guests and construction workers, and no open kitchen. We were forced to use delivery for our meals and were stuck in a small room with no opening window. Yes, there was a TV, but boy oh boy does cable suck these days! We stocked up on what we could from the grocery store but the mini fridge only holds so much and the functionality on a Keurig coffee maker is limited. This is not an ideal space for medical recovery. We spent 10 days there at the beginning and another 8 days after I was discharged, though I get ahead of myself.
So the transplant happened and I was sent back to the hotel for the next 6 days. I had to go to the hospital every day for monitoring and medications. I was tired and nauseous but didn't feel too bad at this stage. On the sixth day post-transplant I was admitted to the hospital. At this point Scott went home as the visitor rules were very limited and not worth it. I was in the hospital for 2 weeks. During this time my blood counts crashed (as expected) and I became a vampire needing a unit of blood every few days. I also got an infection and fever that resulted in 7 days of hardcore antibiotics. The best part (sarcasm alert) was the mouth and throat pain I got from the chemotherapy. I was warned about it and did my best to minimize the damage but man oh man... I've been through a lot and have never before needed a pain pump but I sure did for the throat pain. I ended up on a Dilaudid pump for about 5 or 6 days and it was a life saver. Even so I was unable to swallow most pills or eat solid food. But, it got better.
Eventually the infection, throat pain and nausea cleared up and my blood work improved. I was discharged back to hotel prison with Scott. This time 2 elevators were working and there was a room service menu, but it was still a dusty construction zone. Also, everything on the room service menu was greasy and pretty much inedible for me. It was wonderful to see Scott again though. I couldn't have gone through this without him to support me and keep my spirits up. I still had to go for daily check-ins, fluids, and the odd unit of blood. I was exhausted and spent most of the time sleeping while Scott watched endless reruns of bad SciFi television. I never want to see another hotel room.
A week later I had an appointment with the Nurse Practitioner and was given the all-clear to go home and recover there. I was so happy. We hit the road as soon as I got back from my appointment. Five hours later I was snuggling Barney in my own bed with a permanent smile on my face.
I'm still tired and weak and have to be very careful to avoid infection. I'm on a restricted diet and am not allowed to garden or play in the sand. I have to go for regular blood work and am not supposed to be around many people. Covid-19 is good training for a stem cell transplant. I'm back on solid food and coffee and can even cook a little bit. I start back at physio in a couple weeks. I can concentrate enough to read and do the NYT crossword again. I have Scott and Barney to keep me company all day and can meet mom and dad for tea on a regular basis. Things are good and will only get better.
That's it for now, I'll leave you with a before and after pic (yep, I lost my hair again...).
Here's what happened... The day before the actual transplant I got a high dose of chemotherapy. The dose is so high that the stem cell transplant is actually necessary to reboot your immune system. In fact, most, if not all, of the unpleasantness to follow is a result of the chemotherapy.
The transplant itself was remarkably quick and simple. I was in a room with a bed, a nurse, a doctor and a technician. They defrosted my frozen stem cells (looked like an ordinary bag of blood) and then hung it from a hook on the ceiling. The bag was attached to my central line (a kind of permanent IV in my chest) and then gravity-fed into me. It felt weird and gave me a really terrible taste in my mouth, but was over before I knew it. I was monitored for a little while then sent on my way back to the hotel.
I should tell you about the hotel, or prison. In normal times there is a wonderful lodge available for patients to stay in while going through treatment in Halifax. It provides meals and has rooms with TVs, games, puzzles, etc. They even have yoga classes and visits from therapy dogs. Unfortunately the lodge was closed because of Covid-19. Instead we were put up in a hotel. A hotel that was under construction, had only one functioning elevator used by both guests and construction workers, and no open kitchen. We were forced to use delivery for our meals and were stuck in a small room with no opening window. Yes, there was a TV, but boy oh boy does cable suck these days! We stocked up on what we could from the grocery store but the mini fridge only holds so much and the functionality on a Keurig coffee maker is limited. This is not an ideal space for medical recovery. We spent 10 days there at the beginning and another 8 days after I was discharged, though I get ahead of myself.
So the transplant happened and I was sent back to the hotel for the next 6 days. I had to go to the hospital every day for monitoring and medications. I was tired and nauseous but didn't feel too bad at this stage. On the sixth day post-transplant I was admitted to the hospital. At this point Scott went home as the visitor rules were very limited and not worth it. I was in the hospital for 2 weeks. During this time my blood counts crashed (as expected) and I became a vampire needing a unit of blood every few days. I also got an infection and fever that resulted in 7 days of hardcore antibiotics. The best part (sarcasm alert) was the mouth and throat pain I got from the chemotherapy. I was warned about it and did my best to minimize the damage but man oh man... I've been through a lot and have never before needed a pain pump but I sure did for the throat pain. I ended up on a Dilaudid pump for about 5 or 6 days and it was a life saver. Even so I was unable to swallow most pills or eat solid food. But, it got better.
Eventually the infection, throat pain and nausea cleared up and my blood work improved. I was discharged back to hotel prison with Scott. This time 2 elevators were working and there was a room service menu, but it was still a dusty construction zone. Also, everything on the room service menu was greasy and pretty much inedible for me. It was wonderful to see Scott again though. I couldn't have gone through this without him to support me and keep my spirits up. I still had to go for daily check-ins, fluids, and the odd unit of blood. I was exhausted and spent most of the time sleeping while Scott watched endless reruns of bad SciFi television. I never want to see another hotel room.
A week later I had an appointment with the Nurse Practitioner and was given the all-clear to go home and recover there. I was so happy. We hit the road as soon as I got back from my appointment. Five hours later I was snuggling Barney in my own bed with a permanent smile on my face.
I'm still tired and weak and have to be very careful to avoid infection. I'm on a restricted diet and am not allowed to garden or play in the sand. I have to go for regular blood work and am not supposed to be around many people. Covid-19 is good training for a stem cell transplant. I'm back on solid food and coffee and can even cook a little bit. I start back at physio in a couple weeks. I can concentrate enough to read and do the NYT crossword again. I have Scott and Barney to keep me company all day and can meet mom and dad for tea on a regular basis. Things are good and will only get better.
That's it for now, I'll leave you with a before and after pic (yep, I lost my hair again...).
What an ordeal - but look at those smiles. You are so tough. I cannot wait to come and see you again. All my love to you and Scott and Barney - you guys are amazing xoxo
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