This week seemed to go by much faster than the last one. Maybe it was because it was a shortened week due the holiday Monday or maybe because there was more going on. Either way, it was a better one. Here are the details.
On Saturday, Aug 3, we spent most of the day relaxing. We hung out at the condo watching the world go by, partially due the fact that I had little energy to do a whole lot. Naturally, it was just nice to sit around and relax in such a wonderful place with a great view of Toronto and Lake Ontario. My only excitement was when I was watching the RedBlacks football game on TV. It had been a while since they won, I think since the week before I went to watch them back in early July, and it was a very exciting game as it went into OT. It was a weird game as it was the special teams that made most of the points but Ottawa took it.
There was a bit of excitement on Sunday, Aug 4, as we were able to meet up with my uncle Richard and his fiancé Leslie for brunch. They met us at the condo and we walked to a nearby restaurant. We sat out on the patio as it was a nice afternoon. We all had great meals and even better conversations. It was nice to catch up as I do not see them as often as I would like and to have a personal audience was even more special. Unfortunately, they had to leave after a few hours but it was still nice to see them for the time we had. MA and I spent the rest of the day lounging around as I was pretty tired and needed rest. It sucks having no energy to do much.
Since Monday, Aug 5, was a holiday, we were able to stay at the condo for one more day this weekend and we took advantage of it. Again, we slept in and slowly packed and cleaned up the condo. We left Roncesvalles (Roncy neighbourhood) on our way back to the Lodge late that afternoon to have some leftovers for dinner. Though I did not see him, MA said that Mark, my roommate at the hospital for one night, was at the Lodge and out in the garden. This was the only time that we would see him all week. MA did speak with him then and said that his treatment went well and only required 1 “Tozi” treatment (I needed 2). I suspect that since we did not see him the rest of the week, he was dealing with more side effects that I was during the similar weeks that we were out. That night, MA and I prepared for bed knowing that we could sleep in the next day as there was nothing planned for Tuesday, or so we thought.
At 1:00 AM, on Tuesday, Aug 6, I got up for a pee, as I typically do every night, and afterwards I could not sleep. During my time awake, I realized that my PET and CT scans were on Aug 6 which was not Wednesday as I thought but actually this morning. And since the first appointment was at 8:15, I needed to set an alarm to wake up on time for this. Last thing I needed would be to miss these appointments and delay my return to Ottawa. Though I caught this in time, I was still too stressed to sleep right away, possibly because I needed to inform MA of this change. Luckily, while I was not sleeping, she also got up to pee and I took advantage to let her know our new plans for the day. We got up early that morning and headed to the Toronto General Hospital for the CT scan. I think they may have forgotten that I was in the first waiting room (a common theme this week) as it took a long time for them to call me. Typically when I get a CT scan, I need to consume a contrast drink for about 45 min prior to the scan. When they finally came to get me at 8:30, they were surprised that I was not already drinking it so they got me my drink and consumed it for 45 min before my scan. My PET scan was scheduled for 9:15 across the street at the PMH. I was going to be late as I needed to continue drinking the contrast until 9:15 and then do the CT scans. MA tried to call the hospital to let them know that I was going to be late while I prepared for the procedure. Naturally PMH was not answering the phones so she left a message hoping they would call back but they never did. The good thing about doing both these scans on the same day is that time can be saved as they can skip some steps that are common between the two like putting in an IV and drinking the contrast juice. Once the scans were done, MA and I rushed over to PMH to check in for my PET scan. We were only 15 min late but this delay seemed to cost us almost 1.5h. It turns out that there is more time savings when I can do a PET scan first instead of the CT scan. The reason for this is because the PET scan requires me to receive a radioactive sugar contrast that is inserted via an IV line. This contrast requires time to get into my system so the similar CT contrast drink can be consumed during this time. As I had already drank the “juice”, I still needed to wait the 45 min before my PET scan to allow the radioactive sugars to be eaten by the cancer cells. I finally got called into the PET scan at 11:00 for a 20 min scan. With our appointments for the day done, it was time for us to take the 12:00 shuttle back to the Lodge. I was very glad that I remembered the dates correctly and did not miss these very important tests. The rest of the day was spent relaxing. Though it was a Tuesday and normally there would be music in the evening, it did not happen as the musicians were not in town so we had to find our own entertainment which was watching Netflix on the iPad to pass the time.
Wednesday, Aug 7, was a mostly uneventful day. MA and I got to sleep in (the only time this week) to try to catch up for the fact that we needed to get up earlier than expected yesterday. There was still a bit of excitement though this day as my PET scan results showed up online. Though I am not a doctor, I could see that they suggested some positive results. I did not want to get too excited as I have been known to not read them correctly. MA, with her more extensive medical knowledge, was a lot more excited than I was as it showed that the treatments seemed to be working. I, personally, was being more cautiously optimistic. Dinner at the Lodge was not ideal as it was very small so I was able to convince MA to go for pizza as a late night snack. Though it was cheap, Pizza Pizza pizza, it was still better than the Lodge food.
It was another early morning on Thursday, Aug 8, as we were meeting up with our new friends Sue and Brian at the PMH again today. Brian had a follow up appointment so we met them that morning. Sue surprised me once we got there with a gift as I arrived. Upon opening it, I was greeted with a fresh apple pie, chocolate chip cookies and Lindt chocolates. Brian was looking much better compared to the week before but it was not an easy week for him as he was recovering from pneumonia and bronchitis. We stayed with them for a few hours chatting and catching up. We were able to stay during Brian’s discussion with the nurse practitioner which was nice to see that they felt comfortable in having us join them during this time. MA needed to leave early around 10:15, as she had booked a free tour of the Arts Gallery of Ontario. I stayed a bit longer until Brian was taken away to go to his chest X-ray. I left our friends around 10:40 and went to see if I could take the 10:45 shuttle. This was going to be tight as I was waiting for the elevator at 10:45. I got outside at the shuttle pickup location and tried to talk to someone there to see if it had gone by yet. As I was trying to find someone who might know the answer, I saw the shuttle coming down the street. Lucky for me the shuttle was 5 min late so I was able to get back to the Lodge early and did not need to wait for the next one at 12:00. I had lunch and then rested in the afternoon waiting for MA to come back from her outing. She arrived around 3:30 and we took a nap before dinner. Again, dinner was light which, this time, I did not mind as I knew I had a full apple pie waiting in our room for dessert. We ate half of it that evening while we watched movies to pass the time away. We also packed up for the weekend as we were headed to the condo again with the hopes that the doctor will tell us we can leave early to head back to Ottawa. At 9:00 PM, MA had not paid for that night’s parking and she left to do so. She decided to bring some luggage with her to save on some loads the following day. As she packed up the car, she noticed this young man who was obviously under the influence of something who was walking around the courtyard, next to the cars in the parking lot. He watched her every move even when she went to pay and while she was heading back to put the ticket in the car. This guy who seemed to be pretending not to be watching her had an empty old lady shopping cart (not sure how better to describe it and provide a proper image). She thought he was impaired based on how he was walking and talking to himself but she felt uneasy so she sat in the car for a while, trying to figure out what to do next. Should she drive around the block and park in a different spot so he wouldn’t notice which vehicle had this “stuff” that he wanted to steal? There was nothing valuable in those bags… dirty laundry, a yoga mat, random stuff we had with us in Toronto to help make our 4 weeks more bearable. “Nothing valuable worth stealing”, she told herself, “just being paranoid”, so she got out of the car, locked it and walked away, pretending everything was fine. When MA was heading back to the Lodge and walked by this “gentleman”, he wished her a nice evening and MA did the same. This action woke up her spidey senses even more and she second guessed her decision to leave things in the car. She decided to turn around and go back and grab the stuff while making it obvious to the several onlookers, who had now recently gathered, that it was obviously empty. This was probably a great decision as this crowd seemed a bit shady. That night, I did not sleep well that night, not because of MA’s story but because I was a bit excited for the following day as I was anxious to hear what the doctor would say about my results.
The day we have been waiting for finally came today. This Friday, Aug 9, was going to provide a lot of news. MA and I decided the night before that I would head to the PMH using the 8:00 shuttle by myself even though I was not needed to give blood until 9:00. This was the closest shuttle time that I could take to still make this time. MA was going to stay back so that she could pack the car and then drive it to the hospital to allow us to leave from there to go to the condo. This was a good thing as it ended up being a very long day, longer than planned. I gave my blood to the vampire and then went to get a coffee at Timmies. I have been scanning my rewards card a lot lately and have been getting a few free coffees. For some reason, I got another free coffee today even though I had one earlier in the week. With coffee in hand, I proceeded to the doctor’s office to check in early with the hopes of being seen sooner as I also needed to do a lumbar puncture afterwards and there was only 30 min between the two when originally scheduled. MA caught up with me shortly after 9:00 AM and she mentioned that the car was OK with no break ins. As we had hoped, we were called in early for our doctor’s appointment at 9:30 (originally scheduled for 10:00) This was a greatly anticipated moment, 3 months in the making. This appointment provided a lot of varied news that was both expected and not. We started the appointment with the Good news. Dr Kuruvilla was at this appointment and he mentioned that, based on the results, it looks like my tumors had been reduced by about 50% thanks to the CAR-T cell treatment! More time is still needed to really see how well the treatment will work so another follow up appointment is scheduled on Sept 6th. Not sure if PET and CT scans will also be scheduled for that time or the next one after that but either way they will be useful in knowing the full extent how well the treatment worked on me. The doctor also provided some Bad news in his address as he told me that my platelets and white blood count numbers were critically low so I was going to require a transfusion for the platelets and more needles for the white blood cells. This was very disappointing for me as I did not like the idea of having the transfusion. I have been able to avoid them throughout all my fights with cancer and have been proud of this fact. This news was then tempered by the Great news that, if the doctor had his choice, we could have been gone today, but Victoria, the trial nurse, overrode him and said I could only leave on Sunday with one condition: we needed to get confirmation from my Ottawa hematologist, Dr. B-B, that her team could take me on for any follow up blood work and transfusions as needed. Dr. Kuruvilla mentioned that not every doctor is able or willing to take on a new patient before they have been properly transitioned between doctors. This was still Great news as I was originally not scheduled to leave until Wednesday which then changed to Monday, at the earliest. This saves me 3 days of having to be in Toronto! Because my platelets were so low, I could not get the lumbar puncture done until I got this transfusion. Victoria went off to book it for me and when she returned she said it would be at 2:00 PM. A benefit of it being booked so late meant that there would not be any time to do the lumbar puncture so this procedure was cancelled. I have to say that I was not sad about this at all! While we waited for Victoria to gather info, prescriptions and book appointments, I wrote up an email to Dr B-B to forewarn her that Dr. Kuruvilla would be reaching out to her and plead with her to allow this plan to work even though I had no concerns that she would as she tried to do this many times when I started going to Toronto. Once done chatting with the doctor and the nurses, MA and I decided to head back to the Lodge to pack up our stuff and have lunch. Shortly after finishing lunch, I got a response from Dr. B-B stating that she was a go with the plan, allowing us to leave on Sunday. This was the best news of all! While MA went to the pharmacy to drop off my prescription for my week’s worth of Grastofil (the daily injections she gives me to help boost my production of white blood cells) I proceeded to the Lodge office to cancel our reservation for the following week as we will not be back for a while. We were back on the shuttle for 1:15 with the rest of our luggage and off to the PMH for my transfusion. We dropped off the bags in the car and MA and I went our separate ways: she went to pick up my prescription for my injections and I went to check into my transfusion appointment. Remember I said my appointment was for 2:00, well I did not get in until closer to 3:45. We had to ask a few times as to when I would be seen. I really think they forgot about me as it seemed like they were packing up for the weekend. Also, when we finally made it to the pod where I was to get the transfusion, they were not ready for us. As we got in, I sat in my chair and the nurse ran over to tell me she did not think it was cleaned yet from the previous patient. She cleaned and dried it right away and I sat down. She started an IV with saline and then went off to order my platelets. This process seemed to take a really long time, as well. I finally got them and started the process at 4:05. It was going to take 1h to drain the bag and then a line flush for another 15 min. We finally got out of the pod and on our way by 5:30. Good thing we had the car with us as there were no more shuttles going back to the Lodge this late on a Friday. It was a long drive to the condo as we were in rush hour traffic but it was still nice to be there as it was going to be our last time here, most likely. We had a late dinner and chilled in front of the TV before bed.
Saturday, Aug 10, was spent enjoying the condo and the views it offers. In the evening, we went over to MA’s cousin, Melissa’s, for dinner and spend time with her and her parents Cathy and Neil who were in town from Kirkland Lake. Unfortunately, we did not get a chance to see Matt, Melissa’s husband, as he was out for the evening. It has been a few months since we had seen MA’s aunt and uncle so it was good to see them along with her cousin. Dinner was great and so were the conversations. Now back at the condo, just one more sleep until we are home. Getting very antsy now!
The upcoming plan for the coming week is MA and I are heading home Sunday, after our longest time away. We are as anxious to see the family and Shelly as they are to see us. Monday morning will be spent at the Ottawa General hospital to give blood and see if another transfusion is required and possibly meet up with Dr. B-B who I have not seen since June. It will be great to finally do this in my home town for a change. I was hoping that I could finally be able to play baseball and hockey this week but, given my current situation, I may not be able to. I will need to play this by ear for now depending on the blood work numbers shown this week. Baseball and league hockey playoffs are both on Tuesday (of course ☹) and I have my usually Thursday night hockey game. Even if I do not play any of these games, I will try to make it to them anyway to see the gangs and catch up with them. On Friday, I have my annual charity golf tournament which I should be able to play regardless of my numbers but will take it easy none the less as I may not have the energy to play a full game. Luckily it is a best ball format so even if I can’t play, there may be someone else who could pick up the slack and, who knows, I may outshoot them in the end. There is also talk of going to Richard’s cottage as, earlier in the year, we had planned on spending our holidays there this week and my family is already off and it has been way too long since we have been there. Again, we will need to see how things go based on my required visits to the hospital. All in all, it was a good week and I seem to be getting more energy as the week went along, still not where I need it or want it to be but still positive news none the less.