It’s been another eventful week, but I’m happy to say that I am at least finding my stride and have found myself feeling a lot more positive and uplifted this week. I’ve been working hard on finding gratitude in the small moments of every day, and feeding off the positive energy of my team to try and push worry aside and find ‘normalcy’ in a situation that often feels far from it.
On Monday my nurse told me it was time to start pushing through the fatigue and getting more activity, so I’ve been going out for evening walks every day (less people and no sunscreen!) and I’ve found that they’ve really lifted my spirits. I love to walk up Bay, and down to Yonge and Dundas square and back up Yonge st. You’d think it would be torture as a foodie and a former cannabis enthusiast, but I secretly love to smell all the delicious food, the occasional whiff of a joint and just to soak in the energy and culture that Toronto has to offer. I have my one favourite burger place I love to walk by, sometimes I stand outside for a few minutes and just breathe in the smell. Then there’s this Churro stand that smells like funnel cakes from two blocks away. I think the guy must think I’m crazy, but I stand beside it every night for a couple minutes and just smell them. I can’t wait for day 100 to eat ALL OF THE THINGS. On my way back to the condo I usually stop in a little park with these super cool big copper frogs, and take a few minutes to stand in the grass and ground myself. It’s been nice to feel like I’m regaining a feeling of being centred. Even if I can’t do a lot of the things I want to, I can find joy in the things that I can do, if I focus my energy on those.
On Monday things looked not too bad, no movement in my CMV infection, and my EBV viral counts had increased. My skin was starting to look a bit better, so we just crossed our fingers and hoped things would shift a bit by Thursday, but on Thursday my CMV counts had continued to increase, even with the anti-virals, and I also had a swollen gland on the right side of my neck, which can be a sign that the EBV infection has begun to spread to a lymphoproliferative stage of infection that can happen in transplant patients. My platelets had dropped a fair bit again, which indicated my body was trying to fight off the infections, so I was scheduled for a needle biopsy of the node in my neck on Friday morning, and was told that I would start EBV IV treatments immediately afterwards. I kind of have a rule with my nurse that if she’s not worried, I’m not going to worry, so she told me all of these things are not abnormal occurrences, that things were still going OK, and that they had plans in place to handle whatever came up, so to just keep trucking.
Friday morning I had the needle biopsy on my neck, then headed upstairs to the transfusion clinic to start my first Rituximab IV treatment for the EBV. Similar to my Rabbit ATG treatments during transplant, this treatment can commonly have adverse or allergic reactions, so for the first treatment they give you pre-emptive Benadryl and Tylenol, and have an anaphylaxis kit standing by. The typical first treatment drip takes about 3 hours, and if it is tolerated well, they do them faster on your following treatments. The first hour of the IV the drip is very slow and they check your vitals every 15 minutes. After the first hour, If everything goes well, they slowly speed the drip at 30 minute intervals.
About an hour in I developed rigors, which are like shivers but very pronounced and not easily controlled by increasing your body temperature with warm blankets etc. I got similar rigors following my infusion of stem cells on the day of my transplant. It kind of just feels like your whole body is shaking uncontrollably. We stopped the IV and started some Demerol and Gravol, which eventually got them under control (and made me drowsy as heck, so I napped on and off for the rest of the day) and resumed the IV, but had to continue at the initial slow drip rate. Another hour went by and my temperature began slowly creeping up. They gave me some more Tylenol to try and bring it down, but it only worked for about an hour, so we stopped the IV again to do a drip of steroids to see if we could get it down for good. It seemed to work, so we continued at the slow drip rate. At this point, the 3 hour IV had already stretched to over 5 hours, and the transfusion clinic was closed and I felt terrible that some nurses had to stay late to complete the treatment. As we stretched into the 6th hour, it jumped back up again. They told me if it didn’t go down by the time my IV was done I would have to stay overnight. I gave my body a firm talking to, and told it to get its sh** together haha. I really didn’t want to spend the night in the hospital! By the time my IV was done, it finally went back down, and I got the all clear to to go home. My 3 hour IV turned into more than 7 hours and I was so grateful for the nurses who stayed late and took such good care of me the whole time, and was really grateful that the side effects weren’t worse. I crossed my fingers that the treatment worked! 🤞🏻
That night Bill and I walked down to Burger Mania at Yonge and Dundas but it was really busy and as much as I super wanted a burger so freaking bad, I knew it probably wasn’t the best Idea from a food truck. We decided to go back the next afternoon and see if it was less busy so we could scope out how the burgers were stored/cooked, but it was even busier, so we just continued on our walk. Bill could tell I was pretty disappointed about not getting a burger. Smelling my fave burger place every day for a week had given me a craving I could not get rid of 😂! He suggested that if I really wanted one, and was ready to take a ‘risk’ at eating out, we look for somewhere that would be most likely to have proper food handling and storage procedures, and would follow my instructions for cooking to limit any potential risk.
We settled on a really high end place that prepares their own burgers in house everyday, that had an outdoor patio that wasn’t busy, and went at 4 O’clock so that the kitchen would be less busy and more likely to take greater care in their cooking. We had a detailed talk with our waiter before ordering. He spoke with the kitchen immediately about my requirements and assured us we would be in the best of hands, and all my requests would be followed to a T- so we decided to roll the dice! It was an excellent decision. I literally could not stuff that burger in my face fast enough 😂 I crossed my fingers that I wouldn’t pay the price for it the next day- and lucky me! Everything went fine. It felt wonderful to feel like a normal person, just eating out on a patio with her husband finally. It’s the little victories that you’ve got to celebrate.
Last night we took a quick road trip back to the house in Courtice so I could get some shorts since it’s starting to get so warm in Toronto and I got to see my kitties really quickly which was nice. We also stopped by Bill’s parents quickly to say hello, since I haven’t seen them before my transplant and it was so nice to see them.
On Monday we will check my CMV infection counts again, and if there is still no response to the oral drugs, I will switch to an IV pump that I wear 24/7 that delivers a constant stream of the anti-virals. We will also see if the first EBV treatment made some headway. Fingers crossed for some movement in both areas! 🤞🏻 I am now just two weeks away from day 60, which is when they will do the first biopsy to see how well my cancer responded to the transplant and will begin working towards phasing me back home. I’m really looking forward to hearing that I am hopefully ‘cancer free’ and the potential of spending a bit more time at home soon!
Hope you all had a great weekend and that you enjoy a wonderful week ahead 😊 PS- I have a birthday surprise up my sleeve that I can’t wait to share with everyone!