Sunday, June 9, was a relaxing day. I was saving my energy as I had a league hockey game that night which did not go as well as the last game. We were missing a few star players so we could not overcome this strong team. It was still good to get out but was very tiring as the bench was short. Monday, June 10, was another travel day to Toronto. We were here for many appointments. Tuesday started with blood collection at 7:30 at the Princess Margaret and then crossed the street to the Toronto General for a vein check. Veins were good so no need for a PICC line so we went to our next scheduled appointment, being the Quinton line insertion (it is a central line in one of my blood vessels near my collar bone). It was not fun and, once in, was very uncomfortable, especially now that I can’t sleep on my back so I was left to only sleeping on my left side. My next uncomfortable appointment was the lumbar puncture back at the Princess Margaret. (Un-) Lucky for me, I had a resident do it so it didn’t go smoothly. I think MA wanted to get rid of the resident and get the staff doctor, who was watching it all, to jump in and finish it. It was very painful despite the local freezing. We were able to get some good news in during the day though. My last meeting on Tuesday was with the clinical nurse who was able to squeeze in her meeting while I waited to get in for the lumbar appointment. She mentioned the upcoming plans that were still being worked through with respect to dealing with my kidney and my ear issues, on top of everything else. She also wanted the resident doctor helping Dr Kuruvilla to see me to talk more about these plans. Dr. Sharon Ben Barouch, the resident doctor, came by to give us an update on the chemo treatment plan for next week, the options for my kidney being either inserting a stent, a bag, or do nothing and hope chemo shrinks tumor to unblock the ureter. All of these plans are trying to be scheduled in without affecting any CAR-T cell trial dates. What concerned me the most was the fact that they were planning a R-ICE based chemo for my debulking chemo happening next week. As I mentioned a while ago, on my first and only visit with Dr. Kuruvilla, he was pretty adamant about not doing this therapy for many reasons so I am surprised that it is still on the table and no one I am talking to now can answer why that changed. I keep asking questions but never seem to get the answers.
The rest of Tuesday was a bit more relaxing. In the afternoon, MA and I had “couples” massage but I use that term very loosely. The local massage college offers free messages to cancer patients and guests done by the students in training. My massage was not as comfortable as I would have liked given the tubes sticking out of my neck and the pain in my back from the puncture but I had one anyway. MA’s, on the other hand, looked amazing. She really enjoyed it. We got a bit of a scare that night as I felt hot and, of course, did not think to bring one of the three thermometers we have at home. MA rushed to the nearest drug store to get one and, in the end I was a bit high but nothing serious enough to need to do anything about it. By this time, the Raptors game was on so we watched it with the gang at the lodge. We were hoping to be at a party when they win but tonight was not the night. We went to bed after the game as it was going to be an early morning.
We were back at the Toronto General for my T cell collection on Wednesday, Jun 12, for 8:00am. It took a while to get in but we finally got seated. MA stayed longer than expected but headed back to the Lodge to pack and get the car. I got strapped up to the centrifuge machine which took a look time to set up before my collection. The collection of cells would require 15l of my blood to go through this machine so that they could collect enough T cells to ship to California and the whole process would take at least 4 hours. The funny thing in all this was that I did not need a Quintin line because my veins were so good. No one told us we did not need to go to that appointment the day before. A lot of confusion and assumptions but not much confirmation on things, given the new people going through this process. In either event, it did free up my arms to do other things which was nice. The collection process was uneventful except for the tons of questions we had about the machine and the process. We had a great technician who was more than willing to answer and explain everything. It was great overall. The collection ended around 12:45 but it took another 45 min to clean up and take out the central line out. We were on the road back to Ottawa by 1:45. Though they have not said officially, I think I can say that I am in the study!!
Because of all that went on in Toronto and the traveling to and from, I probably did not drink enough water. I tried to catch up when we got back with most of my day Thursday, June 13, spending most of the day drinking water. I had major headaches all day caused by the lumbar puncture and the dehydration which continued into Friday. I still had a dressing covering the location where the central line was inserted and, because of this, I needed to not shower for 48h. My next shower would be 4 days after my last one, which finally came on Saturday. I did make it to Thursday night hockey but it was not a great game. I was very tired but somehow I was able to score, not so much on my abilities but I think more on people letting me.
Friday was a rougher day. Still had the dehydration and spinal tap headache but also getting more fatigued probably due to the cancer getting bigger and I had lots of abdominal pain. I am getting very anxious for the next chemo session as I am expecting it will help with all that. Spent most of the day resting and drinking water to hydrate. I had my worst sleep that night. I was up about every 1.5 to 2h to pee. I also had a bout of diarrhea on Saturday morning. I started to feel a bit better that day though, especially with the massage I got from MA. Not sure what she did but she cleared up all the aches and pains.
Father’s day, June 16 was short but good. I woke before everyone and had my coffee. Later, at around 10:00, the kids got up and we had crepes for brunch. MA and I quickly packed so that we could drive to Toronto for my week’s fun. Because I am going to be admitted for my chemo treatments this time, we decided not to stay at the lodge. Lucky for us, MA’s cousin Melissa, lent us her place for the week. Matt and her were not going to be there as they are traveling and, in return, MA could water the plants to cover our stay. Melissa’s apartment is not far from the Lodge and the hospitals so it works out well for us. Unfortunately we have no parking spot there so we are keeping it at MA’s other cousin’s, Jennifer. Since we needed to drop off the car anyway, Jennifer offered us dinner when we got in. What made it sweeter was that her parents were also in town so we got to see them too. On top of this, Jennifer was hosting the first Sunday Sundays of the summer for her housing block. She set up a table and some toppings while the neighbours brought ice cream and more toppings. Then all the neighbours were invited to come with their bowls and spoons to share a nice Sunday evening in Jennifer and Steve’s driveway. It was the first of what I expect to be many to come this summer. It was well turned out with at least 60 people of all ages making the driveway standing room only. I was not 100% so I did not stay too long but I did chat with a few neighbours before heading back in. Jennifer’s husband Steve offered to drive us to Melissa’s apartment after the event.
Monday, June 17, was an exciting day. Needed to work around the Raptors parade that was very close to the hospital where we would be. We were able to get to the hospital with no issue given that they were predicting that between 1.5-2 million people would be coming to this area to watch. I did more blood work and waited to see the doctor. Turns out that Dr. Kuruvilla is at a European medical Conference so I will not be seeing him this week. Instead I met with his resident Dr. Sharon Ben Barouch, another female Dr B B. We spoke about the chemo treatment plan for the week and about my kidney and ear specialists that would be visiting me while I am in the hospital. Because the trial is sponsoring my debulking chemo, there are only a few options we can use. For this reason and the fact I am only doing one round of it, is was decided to go with the R-ICE therapy. More confusion for the day, I had brought my suitcase thinking I was being admitted today but I was wrong. This turned out to be a good thing as I was able to enjoy some of the parade from afar and watch the rest on TV. The weird part was hearing the Snowbirds fly by on TV and hearing them outside at the same time. Here is a bad picture of one of their flyby’s (the first pass was much better but I was not ready with my phone to take the picture).
Another bright spot for the day was that I was able to eat more. With all that happened late last week, I was choosing to eat smaller meals as my stomach felt a little better when I did.
Tuesday, June 18, started well with MA making me breakfast. We headed to the Princess Margaret to check in for 9:30. It took a long time to get a room and the one I did get was terrible. It was a semi room and my bed was nearest to the door. The room was next to the nursing station and the exit out of the unit. I felt like a was in a fish bowl with everyone who walked by starring at me. It made me very uncomfortable especially since this was my first time that I can remember being in the hospital overnight (when I was very young I was in a hospital but I do not remember it at all). I was in the the process of switching beds to get the window one when my roommate arrived. So much for that plan! Instead I was able to get an upgrade to a private room with a better view. Too bad I did not appreciate it on my first day. With everything going on, I was probably a bit anxious and when combined with what the cancer was doing to my insides, this day was going to go badly very quickly. The nurse started the pre-chemo treatment later than we thought, around 12:30. Almost right away, I was getting signs of nausea, nothing serious. Dr B B came by to check in and give an update. The only good news was they decided to wait for the ureter stent with the hopes that the chemo will open it up. Unfortunately the rest of the day did not go well. MA had left for a few hours to meet up with Jennifer to trade services while I started my treatment. Normally things go very smoothly so we were not expecting different this time. Boy was I wrong! Lunch came around 1:00 and I was very hungry so much so that I did not even complain about the lunch stew (people who know me know I am not a big fan of stew). I hoped it would calm my stomach like it had been doing the last few days but it did not. The nausea was getting worse so the nurses administered drugs to help but they did not have much effect. By 2:00PM the worst part of the day started. I began to dry heave and eventually brought up lunch (Good! One more reason not too like stew!) Both the nurses and Dr B B could not explain what was going on as this was not a typical reaction to the particular drug being pushed into my veins. I felt like shit for the rest of the day and night. Nausea but no vomiting that was keeping me from eating and drinking. Though I was getting IV nothing was passing. They gave me every anti nausea drug they could and later mixed in some Ativan to help with the anxiety. I had a terrible sleep and was up a lot due to the pain and nausea. Finally, around 4:00AM, Tuesday morning Jun 19, I was able to sleep well enough after getting my last dose of Benadryl. After a brief sleep at Melissa’s MA was here early and slept with me so that helped too.
Tuesday turned out to be a better day, complete difference from the day before. My chemo was restarted and it looked like I might need to stay another day to make up for the issues the day before. This would mean I would need to change rooms as I could not stay in this one past Friday. I would be losing my great view. The second challenge (that is what they call it when they administrator it) with the chemo went smoothly. Not only that, they were able to recalculate the time I would need for the rest of my chemo treatments and I am now not needing to move as they can now get it all done by Friday. That was some great news as I would rather not stay longer than needed and also keep the great room. The rest of the day went great. I felt wonderful and everything went smoothly. I had a great sleep that night as well.
Today, Thursday June 20, I am doing the next part of the chemo treatment. Going smoothly so far. The plan is to keep it up, do more treatments tomorrow and head back to Ottawa. The best part though is that I then have 2 weeks where I stay in Ottawa with no trips planned. It will be a welcome break before I spend 6 weeks straight in Toronto. Not looking forward to that part but it means that I get my cells back and the cancer fighting can begin so I am excited about that part. That is all for now.