I am writing this week in the beautiful courtyard of the PM Lodge. Too bad, the week has not gone as beautifully as this place. More on that later. Let’s catch you up on last week first.
On Wednesday, July 3, after writing my last post, I spent the rest of the afternoon resting. Pat came over to spend some time with Gene in the afternoon and they had a late lunch with MA while Isabelle was at a friend’s place. Since MA was out for the evening and Gene was not hungry for dinner, I decided to take Isabelle out to dinner and spend a bit of time with her before I leave. We had a great meal and chat but I ate too much as my cravings kicked in and needed some potato skins before the main meal. Luckily, I shared them with Isabelle as I also needed a side poutine with my club sandwich.
Energy levels were getting better and was finally able to do a bit more by Thursday, July 4. I did not do much during the day but was able to get out to hockey to see the boys one last time. It was nice to be able to play and not suck too much wind though it was still tough to keep up as the play was still very fast. I had so many chances to score but could not put the biscuit in the net. It seems that my reflexes are not where they used to be. Though I did not score, the important thing was that I made it for wings and ginger ale. No beer for me still. It was great to also chat with the boys and ended up staying until 12:30 AM where normally I would have left 1h sooner. It’s great not having to get up early on Fridays!
Friday, July 5, was a rest day to start. The only official plan was a blood draw but I was hopeful for more. You see, my good friend Dave suggested the night before that he may have a spare ticket to the Redblacks football game. As I patiently waited for his call, I dropped off Isabelle at the bank as she needed to reopen her account. While on the way to give blood, I got the call I had been waiting. I was going to meet Dave at his place and drive the two of us to the shuttle for the game. With this great news, I dropped off Isabelle and headed to my appointment. While I was there, I was going to visit the doctor’s office as MA was waiting for them to give their blessing to fill a prescription that was 9 days too early. The pharmacy could not fill it without this consent even though we told them we would be out of town for the next 6 weeks and needed it now. Well my Dr’s office staff is useless. Part of the reason for me to go into the office is because MA could not get them to pick up the phone all morning. She would try between clients and would need to give up as it was taking >20 min for them to answer. She had a longer break at 12:30 so she called but got a message that the office stopped taking calls for the weekend. I was determined to help her get this filled. Since the office has a walk in clinic, I spoke to the receptionist about her plight. She was no help as she told me that the pharmacy needed to make the request in writing (ie fax) and that it would need to be done before 4:30 that day if we were to get it filled before we left on Sunday. So I tried calling MA with this news but she was in a 2h massage so she could not answer. That is when I took matters into my own hands. I picked up Isabelle and we headed to the Walmart pharmacy to get this straightened out. Talking with the pharmacy associate I found out that she had faxed the request yesterday (contrary to the impression the Dr’s receptionist had given me) so the ball was in the doctor’s court. Just in case, she faxed it again. For some reason, this fax took a really long time to send. The associate suggested I wait so that we both can confirm it made it through to the doctor. I should have just taken a copy and hand delivered it to the doctor as I waited for about 15 minutes for the fax to go through! It finally made it so I went home thinking I accomplished our goal. Silly me. MA waited well passed 5:00 for the call from the pharmacy saying they got the confirmation but it never came. By this time, I headed to Dave’s place to pick him up. As I was getting there, it was just starting to rain. He packed up his snacks and a mickey for the game and we headed to the bus. By this time, it was no longer a light shower but a huge downpour. Luckily it did not last as it was done once we were on the bus after our short drive and never rained for the rest of the night. The goal was to get there a bit early so that I could try the special food item the Redblacks have at each game. This week’s was the very loaded potato skins with tater tots, sour cream, bacon and other delectables for $23, enough for two people. I got in line at the kiosk where they were selling them but was too late as the TV menu boards behind them said there were only 2 left and there were about 30 people ahead of me in multiple lines. From the ones I saw, it looked amazing so I was really sad I missed out. After that disappointment, I was happy to get the huge lemonades that Dave told me about. It was really good and was probably even better the way Dave “makes” them, wink wink! Finally, we sat down to watch a very disappointing game where the home team got thumped. By the half, Dave and I were socializing with some of the other fans he knew then we got back to our seats for the last quarter where there was a bit of hope for a comeback but it was short lived. After the game we headed back to his place where I dropped him off and headed home to bed. It was a long day but I was really glad I made it to the game and very thankful that Dave invited me.
On Saturday, July 5, not much was done. Cassy was back from camp and Isabelle left for hers before I could say goodbye. I might not be seeing Isabelle until I am back in 6 weeks. Because it was so hot, I tried to get in a matinee with Cassy, as I love going to the movies on a hot Saturday afternoon, but by the time she finished mowing the lawn it was too late. Instead, MA, Cassy and I went to an evening movie. With Isabelle being gone and Gene volunteering at Bluesfest, it was a good time to get away. I know Isabelle will be upset when she hears this but we decided to go see the Avengers End Game at the discount theatre. We have been watching all the Marvel movies as a family over the last year and the plan was to watch this together but it did not happen as Gene went with Pat when it first came out and we could not wait for Isabelle. It was a great movie!
Sunday, July 7, was packing and travel day. This time, we loaded the car with Cassy and Shelly and headed to Toronto. I was able to drive all the way to my brother Marc’s place to drop off Cassy and the dog and have dinner. It was a short but good visit. After dinner, MA and I headed on our 1h trek to the lodge to check in for the week. We were not so lucky this time as we did not get the suite which means using the communal shower. Also, we found out that night that the wifi in our room is terrible but works perfectly just on the other side of our room door for some reason. I had gotten used to these creature comforts so this was going to make for a long week.
I call this day, Stupid Monday, July 8. I woke up very groggy and needed coffee bad. As we had an early start to the day, we got up and had breakfast before catching a ride on the shuttle to the hospital. Unfortunately, we forgot that there is no 7:30 shuttle on Mondays so we Ubered to the hospital. We got into the hospital at the entrance where the Timmies is so we picked up our coffees and headed up to give blood. I was able to get in and have my blood drawn quickly so we checked in for my PET scan. As I placed my nearly full coffee cup on the receptionist desk, she looked at me funny and said you can’t drink that. At that moment, I remembered that I was supposed to fast before this scan. I had to tell her that I had breakfast and state how dumb I was. She called the head technician to see if we could still salvage my appointment and not reschedule because I didn’t know when this could happen. He said that I would not be able to get in until at least 11:30, if they could squeeze me in at all. I proceeded to wait in their waiting room while MA went to Dr Kuruvilla’s office to see if we could get in early as we were originally scheduled to see him at 11:30 as well. Once MA was able to confirm that we could change our appointment, I headed to meet her and wait. A long time passed, about 2h, but I finally got in and then headed to do my PET scan. More waiting and more stress. By the time I got seen and did all the prep for the scan, I was going to be done by about 1:30. The problem was that I was scheduled for a CT scan at 1:00 across the street at the Toronto General. I found all this out at 12:30, lunch time for the receptionists at TGH so I could not call them to let them know I was going to be late. MA was able to call them when they were back in the office to let them know my situation. This was going to be a mad dash between appointments. Good thing I had breakfast as I would be having a very late lunch. I got to TGH by about 2:00. What helped my case when I arrived is that I kept my IV line from the previous scan and I had already drank the contrast juice so I just needed a small top up before the CT scan. I was done by about 2:45 so I walked back to the PMH to meet up with MA who had gone down the street to donate blood and then we headed back to the lodge. Naturally, we took it easy for the rest of the day to recoup from this excitement and stress.
We had a light day on Tuesday, July 9, as I only had 2 appointments and they did not start until 10:15. We had breakfast (because I was allowed to this time) and slowly worked our way to TGH for my PICC line insertion. It went smoothly and afterwards we went to an Indigo to look for a book for me to read this week. I found a great one on the science of cooking called Of Food and Cooking. Afterwards, we wandered the street to look for a place to eat lunch. In front of the Sick Kids hospital, there was a farmer’s market with a bunch of tents. We sampled some of their offerings but were most impressed with one local cheese vendor. She had the most amazing selection of cheeses that we tasted. We bought a few to bring back to our room for more sampling and as a hostess gift. We then hit a taco truck before my hearing appointment. I got my ears tested to see how much I lost due to the treatments. Turns out, I did lose some of my hearing but not enough for hearing aids. I lost a great deal of hearing above 8k Hertz which is ok for conversations but not so great if you are a musician. With that done, we headed back to the Lodge to veg out. I spent the afternoon reading outside in the garden while MA took a nap. While out there, I met a woman, Sue. Her husband, Brian, was there to do treatments at the hospital. We got to talking about what I am going through and she mentioned that I am an angel and a hero for being a pioneer for being willing to be a Guiney pig and leading the way for others who will get this treatment. I never thought of myself in this light so it really made me think and reassured my determination to make it through this and cure this thing, once and for all. That evening, MA and I were treated to a concert put on by some of the guests at the lodge. I did not recognize much of the music but it was really good and one of the musicians was really talented as he played piano, banjo and the harmonica all at the same time. Some of the songs were in serious need of the fiddle as I recognized them as songs Dad would play.
Wednesday, July 10, was my first conditioning chemo day. It was another early morning but at least this time the shuttle was running at 7:30. During breakfast, we were given cold hard boiled eggs. I decided to heat mine up in the industrial microwave. I placed both eggs on my toast and cut the first one without issue. However, the second one exploded in a nuclear blast that burned the tip of my index finger. MA got me a bag of ice for it and I soothed it for the rest of the morning so that it would not blister. Because of the PICC line, I needed to give blood in a different area of the hospital. When we got to this area, it was not obvious where we needed to enter but we were able to figure it out. Once done, we headed to the chemo daycare unit to check it. The purpose of the conditioning chemo is to make room for my newly-improved modified T cells that I will be getting back next week. Once we were finally called in for the treatment, we sat down while our nurse, Joanne, prepped me for the hydration and subsequent chemo IV bags. We really got along with her. Near the end of my session, MA was giving me a massage to help with the slight nausea I was having when she saw us. Now she was jealous and wanted one too, along with the other nurses on the floor. MA found a way to sneak her into our pod so that she could give Joanne a massage. We hid her behind the curtain but her colleges found out and one of them snuck a picture of her enjoying the treatment. With my body topped up with chemicals, we headed back to the Lodge for a nap before dinner. We had a special dinner this night as we were going to MA’s cousin Melissa and Matt’s place for dinner. I was able to walk the 5 city blocks to their place with relative ease. Must have been the anticipation of getting a good meal for a change (the Lodge’s food is very much like hospital food). Great food and better company was waiting for us and we had a fabulous evening. I was even feeling energetic enough to walk home.
July 11, was another chemo day. We were really hoping we would get Joanne again as she said she would make sure we’d see her however she was reassigned to do triage so we were going to have a different nurse. We still got a chance to chat with her and MA gave her another quick massage while we waited to get into our pod. I was a bit more tired and had some nausea again but I got through it. We headed back “home” and we took a nap before dinner. Afterwards, I spent some time outside in the courtyard typing this update.
Last chemo day, Friday July 12! It did not start off well nor did it end well. While we were having breakfast, MA’s open mug of tea spilled while she was trying to move it so that I did not spill it and it landed on her leg, burning it. She prepared an ice bag to cool her burn while I sat there dumbfounded not knowing how I could help. We took the shuttle to PMH and I checked in for my blood draw. It was a very slow process as there was only one nurse today and she was really slow. MA proceeded to check me into the daycare unit while I waited. Unfortunately, she needed to leave at around 9:30. I was getting into my pod as she needed to pack up the car and go get Cassy and Shelly in Bolton before picking me up to head to our real home. Chemo went well with little nausea until the end, around the time the family showed up. The nice part was that Shelly snuck in and was able to provide love and comfort to not just me but some of the patients and nurses in the ward. Once I was topped up, Cassy and I went to meet MA and Shelly outside to head home. I texted MA at 1:59 PM to let her know we were in the elevator so that she can start pulling the car around. Keep this time in mind as it will be important later. We got in the car with relative ease given the new construction around the hospital. As always, there is something going on in Toronto every time we are here and this time it was the Indy race. They closed Lakeshore Blvd which is our typical exit path to the DVP. We used some apps to find a different path and made it to the DVP. The construction on this road along with traffic both on it and the 401 really slowed us down. I had read that the 401E was closed at Deseronto due to an early morning crash so I was monitoring it’s progress. Reports were saying that it should be cleared by the time we would be passing through. Later in the drive, we got the all clear that it was opened at 3:00 so it would be clear sailing to Ottawa with MA saying it will be nice to be home in daylight. Not sure if she jinxed it but this was not the case. As we were tight on gas and could not make it to the Tyendinaga Indian Reserve for cheap gas, we stopped at the Trenton OnRoute for some gas and food. MA tossed the idea of doing a splash and go to make it to the reserve as the price for gas here was $1.339 but she decided to fill it up. The reason why we decided to stop was that the car said we had 100km of fuel but the GPS said that the reserve was 103km away so it was too tough to push it hence the decision to stop. We left the Onroute around 5:00 PM expecting to be home in about 3h. Well it took about 4.5h to make it to the next OnRoute in Odessa. Turns out, there was another major accident at Shannonville, just past the exit where we would have gotten gas at the reserve. At about 5:30, we stopped on the hwy, 9 km before the exit where we would have taken to go to the reserve. It took 4h to get to the exit that got us off the hwy around the accident, ironically at the exit we would have taken to get gas on the reserve. At times we were stopped so long that people got out of their vehicles to stretch, walk their dogs and pick flowers. One guy even got out of his car to switch drivers and he ended up lying down on the hood of the car while his buddy inched the car forward as the traffic moved. It was a lot more confusion once we got off as the detour was not marked and the police were not directing traffic. Naturally, we went the wrong way to start so we did a quick u’ee and followed the crowd. It was slow going through the detour as well but once we got back on the hwy, traffic was light. We had to stop as I needed to pee again and MA needed coffee to be able to finish the drive home. We finally made it, with no more interruptions at 11:50PM, almost 10h after we left, on a drive that usually takes about 4.5h. Glad to finally be home after this crazy week.
Plans for the coming week are to head home for a very short pitstop only to repack for the next 5 weeks. If I have the strength, we plan on going to Li’s cottage to meet up with everyone at our annual fishing tournament. Sunday, we will drive back to Toronto where I will be admitted for at least 1 week to get my cells back and recover. As such, it could be a while before my next post. I am at the finish line just waiting to cross. Wish me luck!