I know I said I would blog more often but the last ten days were such a rapid roller coaster, I was afraid by the time I blogged about it, what was/would be happening with my treatment and recovery would have already changed (because it changed on a dime like.. 6 times haha) The good news is, I’m getting really good at going with the flow. The better news is, this time the roller coaster has a REALLY happy ending!
So where we last left off I had just finished the Rituximab for the EBV infection and we were hoping it would get things in line quickly. The following Monday if my CMV infection hadn’t started responding to the valganciclovir I was going to be put on a 24/7 pump of a stronger anti-viral. When Monday rolled around, my CMV infection still hadn’t responded so they booked me in for the pump to be placed on Tuesday. My EBV results hadn’t come back yet, so they also scheduled me in for a second Rituximab treatment that Friday. Later on Monday though, my nurse called and said that after much discussion with my doctor he wanted to wait to place the pump until Friday. He felt it would be best to wait until we were finished with the Rituximab treatments before we got more aggressive with the CMV, and he also thought perhaps if we just gave it a bit more time things would turn around.
On Wednesday my EBV results came back and surprised everyone- They could see EBV still but the level was so low it wasn’t quantifiable on the test. One treatment of Rituximab worked! ? We cancelled my treatment for Friday, and the plan was to just have me come in and do a normal clinic visit that day instead. My friend Emily was caring for me that night, so we made a Couch fort, some home made guacamole and veggie pizza and watched the raptors game. It was fun!
On Thursday I noticed a gland on the left side of my neck suddenly had an enlarged node in it as well, and I called my nurse and she asked me to come in so she could take a look. I still had an enlarged node on the right side as well, and now having a second one made me panic. Her and a doctor both checked it out and they felt that perhaps it was just residual irritation from the EBV. Their main fear in these situations is that EBV can morph into a lymphoproliferative disorder post transplant that can become secondary lymphoma. My first needle aspiration of the one on the right side didn’t appear to show any malignant cells, so We decided to ‘watch and wait’ on it, and if any additional nodes appeared or if they grew larger, we would do a full biopsy and a CT scan to ensure they weren’t missing something. They would keep running my EBV levels to make sure it didn’t re-appear.
I was told to plan to stay close to the hospital over the weekend because if my CMV came back unchanged on Friday, I would be finally getting the pump on Saturday, so I had to rearrange some of my care schedule to plan for that. On Friday though, all my counts looked amazing. My Nurse was so excited and so was I, it was one of my best clinic visits in regards to my counts yet, and it was really promising. She felt that since everything had improved that perhaps my CMV was finally starting to respond as well and if that was the case I should go home for the weekend and be with my family! Since it takes a while for the EBV and CMV results to come back, she told me to go back to the condo and she would call me in the afternoon once she knew more. Around 3, she called and told me my EBV was now officially negative, and my CMV had Finally started to respond to treatment and that I had her blessing to go home for the weekend, see my family and spend some time in the nice weather (as long as I was in the shade haha) I was so excited! I haven’t been able to sleep at home for over two months, and I really missed my cats too. It felt like I was finally turning a corner and I was literally BEAMING.
I was so excited, I got all the way to Courtice, and in the middle of watching the Raptors game on Friday night realized I left my freaking anti-virals in Toronto. I have to take them twice a day at a certain time, and I can’t miss a dose or risk the infection I finally had under control getting worse again. So my saint of a husband dropped everything mid-game to drive me back out there and get them. We got to Markham and he said to me ‘Did you grab the keys to the condo?’ ?♀️ Chemo-Brain spoiler alert… I clearly did not. I have to give this man some serious credit. I think I would have lost my sh** at this point, but he calmly turned the car around, and we headed back to Courtice to get them. I found the raptors game on live stream and we listened to the rest of it in the car. We didn’t make it back from Toronto until after 1am, and we were both exhausted.
Billy had already planned a big guys night out on Saturday to celebrate his birthday as well as a couple of his friends birthdays. They had all rented a limo and were going to go out in Toronto. I was really excited for him to finally get some time away from work (and me) and just have fun. I spent the day hanging with my Mother-in-law Mary, who I hadn’t really gotten to see since before my transplant. We sat outside in the backyard under an umbrella all day and talked and it was really wonderful.
On Sunday I spent some time with my mom and we checked out the 50% off Value Village sale (because I’m a serious thrifter) and then Bill and I barbecued our own burgers (I really like burgers now in case you hadn’t caught on to that) and then headed back to Toronto.
I had a clinic visit early yesterday, where my counts were down a bit, but it was likely caused by the resolving CMV infection and it’s treatment so my nurse wasn’t worried. In fact, she was so happy with how things have been coming along, I officially graduated from transfusion clinic and back to my oncologist! That means I get to only go once a week now to see my regular oncologist and he will follow me from there. I was sad because I loved my nurse but happy to spend less time at the hospital! She also gave me permission for a couple outings this weekend (one of them was begrudgingly but I basically told her even if she said no I was still going to go) so we talked about precautions and best practices and I promised her I would follow all her rules. I also was told I finally don’t need a caretaker 24/7 anymore, and that over the next month depending on what my bone marrow biopsy next Monday says, they will be phasing me towards going home! WOO HOO! I still can’t drive, but hopefully soon ??
I definitely feel like I have finally turned a corner in my recovery, and I’m just so happy and grateful. I truly had an amazingly lucky transplant experience and even with the infections, I had minimal complications, minimal GVHD, and I just feel like my body worked it’s ass off to get back to normal and I’m so proud of it and grateful for it. The next step is weaning me off of my anti-rejection drugs to see if any GVHD pops up, fingers crossed if it does, it’s minimal!
I’m looking forward to my day +60 bone marrow Biopsy on the 17th so I can see the results and finally, hopefully say that after all this I am CANCER FREE!!! It’s my Birthday tomorrow and instead of people giving me gifts and good wishes, I have something special I want to share with you 🙂 Can’t wait to tell you all about it!