Sorry that it is taking longer to provide updates. With all the travelling I have been doing and very little to update that is good news, I have not been motivated to write in some time. Basically, since my last update, all I have been doing is going to Toronto for tests. Every week, I have needed to drive there just to spend less than 1 day at the hospital. This is all for my entry into the CAR-T Cell trial. Needless to say, Mary Ann and I have been listening to my iPhone a lot on the drives to pass the time away.
After our exhausting week in Kirkland Lake, we had a very short weekend of relaxation. As Mary Ann decided to stay the weekend, I was home with the kids, making the meals and bringing them to their activities. I found out Friday, May 24, that I had an MRI scheduled the following Monday in Toronto. This information cut Mary Ann’s trip short so she came back on Saturday instead of Sunday. On Sunday, MA and I packed up for our trip and headed to Toronto. When we got to the Princess Margaret Lodge, we quickly checked in and headed to Mary Ann’s cousin Jennifer for dinner. She was not able to come to the funeral so it was good that we got to see her. Also, she lives very close to where we were staying and the hospital which made it very convenient. We had a great dinner and conversation however, I needed to cut the evening short as I was getting tired due to the long day. On Monday, May 27, we headed to the PM hospital for a blood test, neurological exam and MRI. Unfortunately, the neurological exam was booked at 1:40 PM and my MRI was booked at 2:30 at the Toronto General, across the street from the PMH. This did not give the doctor much time to do the exam, especially when they are running 45min late. The doctor was focused and completed the necessary steps within the 10min that I was in the room. Once done, MA and I hurried to the Toronto General for the MRI. This procedure took about 1h from check in to check out and was really noisy, even with an ear that is still completely blocked and unable to hear much. After the scans were done, we headed back to the lodge and had dinner and then drove back to Ottawa.
The rest of the week was pretty uneventful with me mostly sitting around reading my paper in the morning, checking emails and Facebook and then spending the rest of the day on the couch resting and watching TV. On Tuesday, May 28, I did have some appointments at the Ottawa General hospital. I was seeing the social worker and then Dr B-B, my hematologist. One of the big events that was revealed during my appointment with Dr B-B was that my following week’s chemo session was cancelled. It turns out that Dr Kuruvilla (my Toronto hematologist) wants me to not have any chemo until they collect my cells for the trial. I took this as good news as it means that I am still in line for the trial and they have not yet ruled me out. Also, it means that I will have more time to recover from the last chemo session and get some strength back. The bad news side of this though was that Dr K wants me to do my next chemo session in Toronto which means more trips and stays out of town. It is getting challenging covering the travel costs as I am not able to apply for any help with this funding but, not only that, we need to still plan for meals and rides for the kids who are staying home when we are in Toronto. Thank god that I have great friends (and family) who are willing to support and help out with meals and rides. THANK YOU VERY MUCH to all of you who have already or plan to help. It is greatly appreciated by all of us!
Thursday, May 30 turned out to be an interesting day. Late in the afternoon, I received an email from one of Dr K’s assistant’s providing me with a tentative schedule of all my upcoming appointments. It detailed all the important dates for the next 3 months with an outline all upcoming appointments, scans, chemo sessions, cell collection and reintroduction dates and hospital stays. I knew this would be coming but once I saw it on “paper” it was surreal and scary. I was both happy to see it as it meant I still have not been kicked out of the trial but scary to see how much time I will need to spend in Toronto. Pretty much over the next 3 months, I will be in Toronto about 80% of my time. Unfortunately, it does not mean that I am officially in the trial but it is still a positive (not sure spending so much time in Toronto can be seen as a positive, but anyway, I digress). Later that night, I finally made it to Thursday Night hockey. I had not seen the boys since the beginning of May so I was excited to be there, even though, my mind was still on the fact that I had so many upcoming appts and hospital stays. As usual, the boys made me feel good enough to almost forget about the cancer and said I played really well. They were happy to see me on the ice and I was happy to be with them.
Friday morning was spent organizing all my appointments into a calendar so that I could visually see them in one location. Between the dates in the email I received the day prior and those that are listed on the PMH patient portal website, it was too much to try to remember them all without writing them down in one location. Also, it makes it easier to share with anyone though I have not yet done so as I am still waiting to ensure that these dates are locked in and I am officially accepted into the trial. From the looks of the calendar, I will be in Toronto every week from the start of June to the end of August with only a two week exception, being the last week of June and the first week of July. According to this schedule, I will be in Toronto for 5 weeks straight starting the second week of July with some of that time spent in the hospital after they reintroduce my cells back into my body. So much for my summer plans this year! The rest of the shortened weekend was uneventful.
Saturday, June 1st, was a packed day. It was our annual gala dinner at Gord and Dot’s place. This is an annual fundraising dinner that they have been hosting for over a decade. It was originally started to raise funds for the Relay for Life walk for one of MA soccer friends who had cancer. When it began, it was only for the girls but somehow MA was able to sneak me in as the only male at the table though the servers were all male. Since then, it has continued as a fundraiser however, this year, the proceeds were going to my foundation. With each dinner, there is typically a theme to them and this year’s had a Scottish one. People were to get their tartans out and show them off. The meal itself had strong Scottish influences with haggis paired with scotch along with other traditional Scottish meals. I was lucky and was able to borrow a full Scottish outfit from one of my work colleagues. It came complete with the kilt, shirt, jacket, socks, shoes, sporran and knife. I really dressed the part and as a result I took home the best dressed for the evening.
Once again, MA and I packed up on Sunday, June 2, to head to Toronto for a PET and CT scan. We left late morning so that we could quickly check in and then head to my brother’s for dinner. This was a very busy day in Toronto, not for me but traffic wise as the Don Valley Parkway was closed until 2:30 for a run (this is the main road we take from Hwy 401 to downtown) and it was a home game for the Toronto Raptors who are playing in the NBA Finals. It took a bit longer to get in and out of downtown as a result of all this but we were still able to make it to my brother’s in time for dinner. Another good meal and conversation was had but I was felling pretty tired by the end of it so we headed back to the Lodge around 8:00 PM. The next day was spent entirely at the PMH starting with blood work around 9:45. They were surprisingly quick to call me in and I was done shortly after 10:00. Since my PET scan was not scheduled until 11:30, I decided I would check in anyway and wait in their waiting room. To my surprise, they called me within about 5 min and got the process started. Part of the PET scan requires me to fast beforehand and then get a radioactive agent put into my blood stream through an IV line. After, I need to drink a contrast agent in sugar water for the next 45min which will highlight the cancer’s active parts in my body. Once I was done drinking, they brought me into the PET scanner room and 20min later I was done my scans. I mentioned to the nurse that I also had a CT scan scheduled for the afternoon. She had not realized this so she talked to the technicians running the CT scans to see if I could get in early. Also, she would not have pulled out the IV she had tapped into my arm earlier. I was able to jump the queue therefore I just needed to wait about 30mins and I was in the CT scanner for the final tests of the day. I was done and on my way out of the hospital by 12:30! This was especially incredible given that my CT scan was originally scheduled to start at 2:30. Unfortunately, I was not able to take the shuttle back to the Lodge as the driver was on lunch break until 1:30. Thankfully, MA decided to stay at the Lodge to rest longer that morning while I did all these tests so she packed up the car and came to pick me up. We were on the road by 1:00 heading back to Ottawa. I had to stop for coffee and breakfast/lunch before we left Toronto though as it had been a long morning without the caffeine and food. We were home before 6:00, in time for dinner!
Tuesday, June 4th, was an exciting but tiring day. Not much was done during the day but, in the evening, I was able to play hockey with my League team and then play baseball for the first time this year. I have been only able to play 1 exhibition game in my hockey league as the scheduling did not align well with my calendar and the baseball schedule was even worst. My league team is composed of a bunch of “free agents” last fall that the league put together to make a team. We had so much fun together despite losing every game in the winter that we decided to keep the group together for the summer, change the team name and get custom jerseys. I was very fortunate that they decided to dedicate the jerseys to my Laughter 4 Cancer foundation with its logo prominently displayed on them. This Tuesday’s game would be our first regular season game of the summer session but, more importantly, would be a milestone event for the team. On this night, with a full roster of players, we won our first game! It was a very close game but we won 2-1. We celebrated as if we won the Stanley Cup after the game. Many of the boys went upstairs to the bar to celebrate but I could not go as I needed to run to my ball game at 9:30. Sadly, we did not have as good of a game. Though I played very well, hitting and scoring at each at bat, we lost the game. I was still happy that I made it out and had the energy to play both games in one night.
Of all the days where I would have liked to have slept in, Wednesday, June 5th, was the one that I would have liked to. Unfortunately, 9 months ago, I booked a dentist appointment for 8:00, thinking that I would need to get to work afterwards. It was tough getting up so early but I made it and got it done. I spent the rest of the day resting. Thursday was much of the same but I did spend some time working on the house with some of my new found energy. For many years now, I was bugged by the fact that the people who used to own my house had put a baseboard heater inside the gazebo outside. You would think this would be a good thing to keep it warm during some of the late summer nights however, I could not remove it in the winter when I took off the tarp. This meant that it would sit in the snow all winter and, on those rare winters when I did not realize that it got turned on, would melt the snow around it. I was reminded that I wanted to get rid of it when we put up the tarp this year so here was my chance. I had spent a bit of time in the past years trying to figure out how to take it off and find the associated breaker in the fuse box. It was not easy to find which stalled my progress. This year, however, I was determined that I would figure it out and remove it, once and for all. What confused me the most was that I was told that it should be running on 220V AC but the power line coming in was only a 2 wire one which is typically devoted to only 110V. This week, I traced the line from the heater to inside the house and through the basement to the fuse box. I noticed that it was connected to another baseboard heater inside. One weird thing I discovered, was that the power line from the outside heater went to an unused outlet box. I found a similar unused outlet box near the other baseboard heater in the basement which led me to believe that they were used as junction boxes for the heaters. As I continued to trace the line back to the fuse box, I noticed that it was entering the box on the left hand side which would suggest that one of the left hand fuses controlled the power over this line. Well an “ass of u and me” was had as I was not able to isolate the individual fuse that controlled the power to the heaters. Now royally confused, I opened one of the heaters to find where the power was coming in so that I could measure the voltage. The theory was if it was 110V, I would need to look for one single breaker and, if it was 220V, I would need to look for a double breaker. Another bad assumption! It was 220V so I proceeded to turn off every double pole breaker in the panel with no success in cutting the power. After calling my buddy Richard, he suggested removing the cover of the panel to see where a neutral, white, wire was going into a breaker. Low and behold I discovered the source of all my troubles. Though I should not have been surprised, it turns out that whoever installed the heaters chose to use two single pole breakers to power the heaters. This explained why I could not isolate the ONE fuse that controlled the power. In this eureka moment, I was able to cut the power so that I could disconnect both heaters and throw them out. The plan now is to reuse the line to add an outlet to the gazebo. Another bad assumption I made was that these blank outlet boxes do NOT provide a junction box for the heaters, only one of them does. Luckily, I discovered this by testing one of junction boxes and realizing it had power. I was hoping to finish this today (Friday) but instead I decided to write up this post. I will try to get to it tomorrow, if all goes well.
Thursday night was interesting. Got two calls that night. One from our neighbor who is a small engine mechanic who was calling us back as we asked him to look at my whipper snipper that is not running well and the other was from Dr. K’s assistant. The second call was more troubling. It turns out that the doctor reviewed my latest CT scan and was concerned with how my cancer is impeding the performance of my right kidney. We knew this since the beginning of my treatments and Dr. B-B was working with my urologist to assess if a stent would be required. It was decided they would wait for the next CT to decide this. What causes us concern is in part due to a story of someone we met at the Lodge a couple of weeks prior. Richard is a cancer patient at the PMH who was diagnosed with the same lymphoma as I have and is the same age as me. He has a more aggressive cancer and has been given 2 weeks to live on several occasions. In May, we was scheduled to start a study on a Monday only to find out the Friday before, the study was cancelled. He was at the Lodge to start treatments on a new study that uses a similar technique to the one I will be going through using a drug that will help bind the T cells to the cancer cells instead of genetically modifying the T cells like I will get done. He did not qualify for my study as he needed to have two kidney bags inserted to help drain his kidneys. For this reason, we are now worried that if need a stent, I may get disqualified as well. If I can provide a bit of a positive on this, Friday morning, I got an email saying that my collection appointment was updated. This suggests that someone is still looking at my appointments and keeping them updated meaning that I am still proceeding through the trial qualification process. The remainder of Thursday night was spent with the hockey boys as I was able to make it out again this week. We may not have many more of these nights this summer so I need to take advantage of them. Friday has some big news. After more than a month, Isabelle and Cassandra now have their G1 license which means they can now start driving officially on the roads. Now begins the process of teaching them the finer points of driving and making sure they do not crash the van.
The upcoming plans are that MA and I are going to visit my buddy Rick and his wife Karine on Saturday. Sunday will be spent at home for a change before we head to Toronto on Monday, June 11, for more testing. Tuesday’s tests include blood work, vein check, Quinton Line insertion (used for the collection of cells), lumbar puncture and a consult. I assume the last one will finally tell me if I have been officially accepted into the trial so keeping my figures crossed. Wednesday, June 12, is collection day so, in my opinion, I should know by then if I am in the trial. We will be back in Ottawa later that night. The following week, we have a full calendar in Toronto with more blood work, a consult and then 4 days of chemo. After all this, I get a rest of two weeks before I need to be back in Toronto, assuming the plans do not change between now and then.
That is all for now. I will try to provide an update later this week once we have a better understanding of if we are in the trial and if the schedule changes again.