Once again, I need to apologize for my lateness in posting. It has been a few tough weeks but it was worth it!
So, after my last post, I made it to the fishing derby on Saturday, July 13. It took us a while to get there but MA, Cassy and I made it to Li’s cottage for about 5PM. It was great to see everyone. Richard, Denis and I went out for a quick fish. We were not very successful during the brief hour we were out but at least I did not come out empty handed. I managed to catch a pike that we quickly released. This was all that we were able to catch before we were chased off the lake due to a pending lightning storm. We barely made it back to the cottage before the dark clouds overtook us and it started to rain. We had our traditional Fish and Steak dinner. Good thing that others were more successful in the day to ensure that there was enough bass for others to enjoy. I was perfectly good with my steak. I was still recovering from the chemo so I was not very hungry but still found a way to take in some blueberry pie, which was one of the many desserts that night. We stayed pretty late and left Cassy with Richard and Li for the weekend. MA and I got home around 12:00 to find G and Pat there and so we chatted for another hour before we finally went to bed. I was hoping to be in bed much earlier as I was pretty tired already from the long week in Toronto and the late night on Friday.
It was another travel day on Sunday, July 14, as MA and I were headed back to Toronto for our summer vacation. This time, the ride to Toronto was relatively smooth however it took us much longer to get out on the road than I had hoped. As we got near to Toronto, the hospital called me to see where I was at and if I was still coming in. We reassured them that we were on our way, traffic permitting, and should be there before shift change at 7:00PM. We arrived at the hospital around 5:30PM and checked in on the 15th floor. This time, we had a fabulous single room. It was big enough for MA to stay with me for the week. It was nice having her here with me to help out where needed (and it was really needed in my second week there). My room overlooked the atrium in the middle of the hospital. MA got a chair that converted into a bed which she used for the next 2 weeks. Not ideal but at least we were able to save some money by not getting a room at the Lodge.
Day 0 was Monday, July 15, a day I will celebrate for a long time! It would be the day that I got my cells back! This day would be filled with many visitors from every team that would be following me, the nurses on the floor, the floor oncologist Dr Franke (pronounced Franka), the ICU team and then finally the team that would thaw my cells and prepare them for delivery. I was both scared and excited for this day. Turns out it was much less eventful and scary than I anticipated. My cells arrived to my room in a liquid nitrogen filled keg which opened up to release a cloud of nitrogen vapor as the doctor pulled out a little bag containing 47 mls of frozen super-cancer-killer T cells and thawed them in a mini hot tub of water. Once they were at body temp, they were put on my IV pole and infused back into me. Just before this process started, the nurse handed me a candy which I thought was a bit odd but it turns out it is to mask the taste for what was to come. You see, it turns out that my new cells tasted like creamed corn. The whole process took about 30 min and it was done. No fireworks, confetti, explosions or cake, just a candy and a craving for Paté Chinois/Sheppard’s Pie once everything was done. For first hour, they were checking my vitals every 15 min and then it was reduced to every hour with it eventually going to every 4 hours. Because this procedure it known to cause neurological side effects, they would do a test to see how I was doing every 8 hours until my discharge. This test consisted of asking me the same questions and write the same sentence. See pictures and videos.
Videos from my CAR-T Cell infusion
On Tuesday, July 16, we had a visit from our friends Sue and Brian. They came by after Brian’s treatment and we chatted for a while. Sue mentioned that she was having an issue with her laptop so I asked her if she had it with her so that I could take a look. Turns out she did so she brought it the next day. In the interim, I also added her Hotmail account to her phone which she was very grateful as she could now respond to those emails while her laptop was getting fixed. The rest of the day was spent healing though I was still in great shape as I was able to continue to walk around the floor. The nurses even gave me a hall pass to get off the ward which allowed me to go up to the 16th floor patio. MA and I would head up there every once in a while to get a change of scenery. I would just need to wear a mask where ever I went which was a pain but an acceptable compromise.
Wednesday, July 17, was another day in the hospital. I still had some energy to move around which I did quite frequently. I think I surprised the nurses as they would comment, and so would Dr. Franke, that I did not look like a patient. Sue came by early morning to drop off her laptop for me to look at. I started to look at it almost right away. I had my suspicions on what the issue might be and they were quickly confirmed once I started to look at it. Some work was previously done to it that had upgraded it which whipped out the stored wifi connections. Once I connected it to the hospital wifi, it seemed to work right away. I spent the next 40 min testing and updated it. I gave her a call to let her know it was ready and she stated that they would come by on Thursday to pick it up and bring pizza. Anytime someone offers non-hospital food, I will not say no.
Turns out I created a reputation on the ward after my exploits with Sue’s laptop. On Thursday, July 18, when the cleaning lady came by, she asked for a favour. She had seen me working on Sue’s laptop the day before and she now wanted to know if I could look at her Macbook. It turns out she was having an issue with it where she could not do much with it and it would not reboot. Being so bored at the hospital, I had no issue with working on it. MA and I went to the patient lounge while she cleaned our room and I had a look at her laptop. I do not have a lot of experience with Macs so it was going to take a bit of time for me to familiarize myself with it and the tricks I could use. It looked like there was an app that was blocking it from shutting down but I could not get it to show me the offending window that was blocking it. It looked like the TextEdit app was the one blocking but I could not determine why. My only option at this point was to “kick it”. I did a hard shutdown (hold the power button until it powers down). Once I did this, it was able to power back up and it all worked well after that. Again, a quick fix and she was very happy when I returned it back to her. At 11:30, Sue called to let us know that they were ready so MA called for the pizza and she went downstairs to meet up with Sue and wait for the pizza. Since I could not leave the floor without an escort, it was decided that Sue would bring Brian up to the patio and then she would come down to get me. She picked me up at 12:30 and we headed up to the patio while we waited for MA to come with the pizza. It was surprisingly good for Dominos Pizza (must be because I had been longing for real food for some time). It was a nice day out and we chatted for a while. We saw someone we recognized from the Lodge walking along the patio so we invited Rick to sit with us. Sue was dealing with the movers for the first part of their visit. If you remember, she and Brian were moving on the weekend. The movers were running out of room in the truck for all their stuff. In the end, everything got squared away but not without some frustrations. I can’t imagine moving while going through therapy but they were doing it and I commend them. I had to cut the visit short as it was nearing 2:00PM, time for my next set of vitals and tests. As we were about to walk into the ward, my trial oncologist was coming out and was looking for me. She wanted to do a neural assessment so my timing was perfect. We all headed back to my room and completed it and then the nurse came it to take vitals and ask her questions. This would be the last day where I felt so well until now.
Friday, July 19, was not the best day for me. I woke up feeling lethargic and had no motivation to do anything. I joked with MA that I wished I had another computer to work on to pass the time away. Later that morning, Dr. Franke stopped by and reminded me that my blood cell counts were at their low point after last week’s chemo which explained how I felt. He did not tell me then but he ordered a saline IV because I was losing weight. Had he done so while he was with me, I would have explained that the food portions that I was getting were about 1/4 of what I normally eat so it was not surprising that I was losing weight. This was a bit frustrating for me as I had been happy to not be on IV. On top of this, the nurse told me I would need to change rooms as these rooms are devoted to the stem cell patients since they require to be kept in isolation. I was going to be moved to a semi room and to add to this, I would be getting a roommate later in the weekend. This added to my frustrations and stress of the day. We finally got me moved to my new room and I tried to settle in but another nurse came by and left the impression that my new roommate could be coming as early as today. This information was invalidated by my nurse later that day. I guess all this stress took its toll because when MA finally decided to step away from my bedside for several hours to go do laundry at her cousin’s place, she had everything all packed up, she leaned over to kiss my forehead and say goodbye, and she noticed I had a fever. We called the nurse over and she confirmed what MA already knew. Everything went to hell after this. MA did not leave and stayed with me as a battery of tests were done to see if I had an infection which was causing the fevers. For the next 5 days, I would be dealing with massive chills followed by fevers which I found out later is affectionately called “Shake and Bake”. I would be connected to the IV 24/7 for the next five days with them pumping me with antibiotics that was on top of the oral antibiotic, antifungal and antiviral drugs I had been taking since the evening before Day 0. Even though the IV antibiotics would only take about 1/2 hour to infuse, they would keep me connected as it was easier for the nurses to add the next bag, 8 hours later.
Saturday, July 20, was a very uneventful day. I pretty much spent it in bed. I was exhausted and chilled with my fever going as high as 39.4C (102.9 F). It would come and go and eventually the Tylenol stopped having effect. By Sunday, July 21, it was decided that I would get the Tocilizumab drug to help stabilize the fevers. It had a huge impact by stopping the chills and keeping the fever more stable to not much higher than 38.5C. I had two doses before the day was done. My roommate showed up around 2:00. The nurses were not too excited for 2 reasons. First off, His name was Mark Bennett which was a very close name to mine and secondly, the room was not properly designed to accommodate two patients. Mark’s side of the room was much smaller and awkward for them to work on him. My brother, Marc and Colleen stopped by in the afternoon for a nice visit though I was not at my best. They pretty much talked with MA while I was lying in bed resting. Later that evening we found out that Mark was going through the same procedure that I went through so we provided him with the pictures and video of what I had experienced. Because I had a roommate, MA decided to stay at the Lodge for the night. I knew it was going to be difficult not having her around to fetch me water and assist/monitor me overnight but we both survived. I think it was probably harder for MA though.
Monday to Wednesday, July 22-24, was pretty much all the same: Freeze, get a fever, take Tylenol, sweat, repeat. I was in bed all the time and in pain, not from the treatment but from the crappy bed. My lower back was killing me but I could barely move due to how I was feeling. Mark moved out shortly after getting his cells in the afternoon. This was great as we had the room to ourselves again and Mary Ann didn’t need to stay at the Lodge more than one night. I had a bout of diarrhea on Monday that caused me to be in Isolation for 15h where MA needed to where a mask and gown at all times, even while we slept. Luckily the tests came back negative for C Difficile so they took me out of isolation on Tuesday morning. On Wednesday morning, my fever “broke” so they started the timer. If I could avoid getting a fever for at least the next 24h, they would let me leave. Sure enough, I met the challenge though I did not feel ready to leave. 38C is the magic number. Even though my temperature rose several times to 37.9C, I was considered too healthy to be kept in the hospital. Ironically, my nurse came by in the afternoon and asked if I could look at her colleague’s, the floor receptionist’s, iPad. She could not get into it as it was locked. I reviewed it and could not find a way to break in as I did not have the necessary tools to do so. I waited until the iPad felt I was worthy to put the password back in and then all was good so I gave it back to her just as she was leaving for the day. It may have been a little quick though.
On Thursday, July 25, I got my Christmas in July gift and left the hospital. Thinking I would be leaving late morning, we prepped our stuff to leave. Naturally, this would not be the case. I needed to see the trial nurse before leaving but she was to be in meetings until 12:30. The floor receptionist came back with her iPad as it was acting up again. For some reason, it would magically type and hit icons on the screen. This was a new problem for me. I looked at it again but could not fix it as I needed to reset the iPad but it would not complete the reset as I could not type in her credentials while the onscreen keyboard was not working properly. The only option remaining was to take it to an Apple Store to see if they could fix it. The floor pharmacist came by to inform me of my new drugs that I would be taking moving forward. Marc and Mom showed up for a visit. They stayed a little longer than expected as I was hoping they could give us a ride to the Lodge. Finally, Victoria, my trial nurse, came by to discuss my release and the short term plans for my upcoming appts. I asked her when I could take out the PICC line and she said I could get it out right away assuming the floor doctor had no issues. Now I needed to wait for Dr Franke to come by to discuss this option. At 2:30, Marc decided to head back as he needed to pick up his daughter Melissa and head home. The doctor finally came by and though a bit reluctant, he agreed with me that I did not need a PICC line as an outpatient and it could be taken out. Now I needed to wait for the IV nurse to take out the line. She finally came at 3:00PM only to tell my nurse that she needed to warm my arm for 10 min prior to extracting the line. The IV nurse just watched while my regular nurse prepped and pulled it out. It was done by 3:20 and I needed to wait 30 min to ensure it did not bleed. I told them I needed to be out sooner than that because I wanted to hit the Lodge shuttle that was coming at 3:45 and the next one was not until 5:30. She reluctantly agreed and said to stop by the nurse’s station before leaving to get it checked as she was going on lunch. We did so and were at the shuttle pick up for 3:40. We got on the shuttle and headed to the Lodge. Once at the Lodge, we checked in and headed to our room, thankfully a suite with our own shower. The Lodge is always super cold and I had chills that would not go away for at least 2h of sleeping with a tuque, in bed under MA’s -20C sleeping bag. We had dinner and then back in the room to rest and warm up. The one thing I forgot to bring was a sweater/hoodie so it was difficult to warm up in a T shirt. Later that evening, I set myself up to watch the football game. MA was tired so she got ready for bed at about 8:30. As she kissed me good night, again on my forehead, she noticed I was hot. I had a fever again of about 38.2C so I called the hospital to see what I should do. It was decided to keep monitoring it and take Tylenol to reduce the fever. I was going to see my doctor the next day so we could decide then what was best to do moving forward.
Friday, July 26, was another busy day. Up early to head to the hospital for a blood test and then a doctor’s appt. Just I was getting the appt started, it was discovered that not all the blood tests were ordered so they sent me back down for more blood work. After meeting with the fellow doctor, it was decided I should get a CT for my chest to rule out any issues due to me coughing and to ensure that I would not need to do much going into the weekend. I got into the CT waiting area and started to freeze so MA got me a warmed blanket. We waited for about 20 min before I got in and the CT room was even colder. Once I was done, we went back to the doctor’s office to wait for the results. As I was still cold and had the blanket, the nurse checked my temperature and it was still below 38C. It was getting very close to 12:00 and we had yet to see the doc even though we could see the CT results were online through the patient portal. MA went to reception to see if we could see a doctor soon so that we could hit the 12:00 shuttle back to the Lodge. For the first time since I had my first visit in Toronto, I got to see Dr Kuruvilla! He explained the results and reasoning for the CT test and what we should do over the weekend. I also mentioned a timely article I received that morning from one of the magazines I subscribe to that talked about the origins of CAR T cell therapy (link here). I highly recommend you read this if you want to understand how my treatment was made possible. Once done, we headed to the shuttle back to the Lodge to have lunch and pack up for the weekend. As part of the Fishing derby, we were chatting with Yvon and Claudine and they offered their condo on weekends while they are at their cottage. MA went to get the car from Jennifer and Steve’s place and we packed it to head to the condo. It is a nice place near High Park on the 7th floor. Once we got here, my chills were acting up so I headed outside to warm up. Later in the afternoon, MA checked my temp and again I had a fever of 38.3C so more Tylenol and then TV, dinner and more TV. We got ready for bed. It was the best night sleep as we finally had a very comfortable bed.
Saturday, July 27, was spent writing this update, which took at least 3h to write, so much to say. So far no fevers and finally feel rested. We went to the nearby Dufferin Mall to find me a hoodie and pick up some groceries for dinner. I am hoping that now that I have a hoodie, I will no longer need it as the chills will never come back, crossing fingers! We got back to the condo and MA made a spaghetti sauce while I reread my post (another hour’s work on my part before MA reads it to edit and tweak a few things). Hope you are enjoying these posts as they are not quick to write.
The plan for the week is to stay at the condo until tomorrow, Sunday, and then back to the Lodge. Once there, we will hang out and heal and hopefully not have any more fevers. Friday is another doctor’s appt. and hopefully back at the condo for the weekend.
I am doing well, probably better than most patients going through this therapy even though it may not sound like it. That is all for now so until you hear from me next time.