Greetings from a stronger place. I left off the story after the first day of chemo. The next morning I felt great. I seemed to have fared pretty well at that point. Better than many in fact. The second infusion went smoothly although the electrolyte drinks we are required to intake were noticeably more disgusting. Apparently that is a common side effect of the chemo, taste changes.
As the day wore on the nausea and fatigue increased. A fun side effect of the chemo, and the fact that we have to drink 3 L of water, is that we all ended up having to pee every 30 minutes through the day and night. Not very restful.
As time went by the frequency of my need to pee increased while others did not, almost every 15 minutes. I also noticed a slight burning and became concerned about a UTI. I contacted the doctor and he said that this was all normal and part of the treatment, that I could relax. I then noticed blood and reached out to the doctor again. At this point, he said, “ Oh, you have hemorrhagic cystitis. I will send you the medication to start right away. This is normal, a common side effect, uncomfortable, but not dangerous.” I am one of two patients with this lucky lottery ticket and it has brought us closer.
On top of my chemo fatigue I now have this added layer that kept me awake all night having to pee every 10-15 minutes. This was in addition to the very poor night of sleep the night before. I was exhausted, overwhelmed, and uncomfortable. I have to say, it felt like one of the darkest things I’ve gone through physically. And when you are that physically depleted, it feels like the whole world is lost.
Over the subsequent days I have been slowly emerging out of that hole. In addition to what I described, we also started twice daily Filgastrim injections to stimulate bone marrow stem cell production. We meet together at the first floor clinic as a collective at 8 AM and 7 PM to step into a room to have our vitals taken and our injection given, right arm in the morning and left arm in the evening. We chat, check-in on how everyone is doing, and see if anyone needs anything. HSCT happy hour.
Other than that, the day is ours to do as we please. Games of Yhatzee, reading, talking, eating; all mostly on the roof deck. We are a group of 16 with eight patients and eight caregivers. There are people from Norway, Scotland, the Midwest, the UK, and Washington state (there is a couple here from Olympia).
This is that type of situation where you are thrown together for something very intense and the barriers come down pretty fast. We quickly became comfortable talking about the most intimate details of our lives with MS, our bodily functions, our moods, and experiences through this process. It helps that nothing is private in our discourse with the clinic. There is a series of WhatsApp channels where we ask all of our questions to the medical team, the logistics team, and to each other. These are not private. If you have a medical question, you put it in the group chat. The most intimate things go out nonchalantly and we all are remarkably comfortable with. In fact it helps to know exactly what other people are dealing with to gauge where you are in the process and to make you look at things you might not have noticed. Not exactly HIPPA.
The people are fantastic, it’s an amazing group that I get to go through this very difficult thing with. I will post more about the people later.
The clinic staff and medical staff are exceptional. They are kind, responsive, and very warm. The food has been fantastic. I will also post more about this place we are in at another time.
Now I am emerging back into uprightness. I have learned to wear an adult diaper 24/7 in order to not have to go to the bathroom every 10 minutes, only to pee a teaspoon. My energy still struggles. But all the pieces are improving and this likely will resolve in the next couple of days. The good news is that the hemorrhagic cystitis is highly unlikely to happen with the second round of chemo. I had been terrified that the next time around would be even worse but the doctor reassured me very convincingly that it rarely does, your body somehow gets used to the chemicals and knows what to do.
We continue with the two shots per day until Friday where we begin the process of harvesting our stem cells, the second round of chemo, reintroducing our stem cells, and then moving into neutropenia where we will be isolated.
Through all of this, my mom, as my caregiver, has been amazing. There are a lot of details, a lot of technology, and a lot of doing things for me that are hard for me to do for myself. I have been so thankful to have her here with me and we are together trying to make the best of it. I was especially thankful to have her here during the really hard couple of days.
Off to bed. Thank you everyone for all of your support. I really appreciate the comments and texts and other ways of communicating with me out there. I very much want to respond to every single gesture, but I’m realizing that it’s more energy than I have. Just know that I feel the love and love you back.
