Not much has happened in the last few weeks and that is a good thing. My blood counts have been stable and slowly improving though I have not seen the numbers in a little while. I continue to get fatigued really easily and forget how quickly it can happen until it is too late and I am run down and can’t move. I am still getting out to play hockey regularly and have since started jamming with some friends who I have not played with since high school.
I am becoming a popular man with the LLSC (Leukemia and Lymphoma Society of Canada). They have invited me to give a brief talk about my experiences being in a clinical trial. I will be part of a presentation where the main speaker will be talking about clinical trials in general and I will be talking for about 10 min at the end about the patient experiences. The challenge with this one is not the length or speaking in front of an audience, it is the fact that I need to do it in French. Though I can speak it fairly well, I do struggle to find the right words and use a lot of “anglicisms” when I speak. Even with these challenges, they still want me to participate. I will be live on the internet on Feb 17 at 6:00 PM. You can join by following this link https://www.sllcanada.org/evenements/demystifier-la-recherche-clinique. I was also asked to speak at a brunch this summer to talk about what it is like to be a survivor. It will happen some time in June in Ottawa. I will update you on this once there is more info to share.
I have also been spending some of my time updating my website. This is my personal site where my old blog can be found. The new site is much nicer and I have started to add some of my older posts from this Google group to it. It is not as up to date as the group posts you get by email but it is now publicly visible to the world. You can go to this site and reread my posts in an easier viewing format and also search them for specific topics. I have included posts up until Oct 2019. I will slowly add more to the website as time goes on. Feel free to check it out here: www.bessettefamily.com. Keep in mind that what I continue to write in the Google Group chat should not be shared with anyone outside the group. If they are NOT part of this group, you can start to point them to the website for the older updates.
Another positive event that has happened this year is that I was able to get rid of another doctor. On Jan 15 (MA’s birthday, by the way) I had an appointment with my urologist, Dr. Rowe. I started seeing him around the same time I was diagnosed last March. The reason for seeing him was that some of the tumors were pressing up against my right kidney and squeezing its ureter thus reducing its capability to drain. As a result of this prolonged reduction in function, my right kidney was damaged by about 50%. Luckily, I have two kidneys so my left one is picking up the slack. It looks like from all the scans and tests that it has not degraded over the last 8 months and everything is working ok given the atrophy in the right kidney. As such, he says there is nothing for him to do or monitor right now so I do not need to see him anymore. This was great news as, over the summer, we were worried I may need to have a bag strapped to me to drain this kidney which would have been hell to deal with and would have probably kicked me out of the trial had it been inserted before I had my CAR-T Cell treatment.
This week I saw my hematologist, Dr B-B, to get an update. As mentioned, my blood counts have risen since their fall before Christmas and seem to be relatively stable. Because of that unexpected downturn though, I will not be going to work for a little longer. I need to have more stable results for a longer period (at least 3 months) to ensure that I am healthy to go back to work and stay there. She will continue to monitor these results over the coming few months and if they continue to stay stable and steadily rise, we can discuss again a plan to go back to work. Though I want to go back to work, I am realizing that I am still not ready yet. I have good days where I seem to do a lot and then, suddenly, I crash and am so fatigued that I can’t move. Usually, it happens before I can realize it so I push too far and it is too late to slow down before I am completely exhausted. I am still trying to know what my limits are but they seem to change each day.
I had a really great hockey game on Thursday, Jan 16. I was paired on a line with some talented guys and I scored a hat trick in the game. I was in the right spots so they were able to find me well allowing me to score with ease. I had a really nice tip in that was certainly a highlight reel goal.
The past few weeks have also been better, health wise. I am not coughing anymore and have finally gotten rid of my sinus infection and bronchitis. My right inner ear is still plugged but it is showing signs that it might be getting better. I have more times where it seems to open up and allow me to hear normally (without sounding like I am under water). Dr. B-B is recommending that I see an ENT doctor so that should help me get to the bottom of what is going on with my ear. Also, if I can clear it up, it could help minimize any new sinus infections.
For this next update, I have been struggling as to if I should talk about it. It is something that I am very excited about but fear that I will be judged for it. As such, I will put some context around it. Four months ago, MA and I booked a cruise to the Southern Caribbean. It is part of a celebration holiday that we are doing with two of MA’s soccer friends and their husbands. Each one of us is celebrating something. MA and I are celebrating our 20th wedding anniversary and my cancer remission diagnosis, Rita and Pierre are celebrating Rita’s 20th anniversary being cancer free and Yvette and Gilbert are celebrating their 25th wedding anniversary. We are leaving on Feb 1 for one week on the boat while Yvette, Gilbert, MA and I stay a little longer in San Juan, PR to visit the city. It will be a great time and a much needed vacation after the rough year we recently overcame. However, I do feel guilty in going as I should not be spending the money right now. When we booked the trip, I had planned that I would be working by now so it would not be an issue. However, I am still not working and my rainy day funds are drying up quickly. Had I known then what I know now, I probably would not have booked the trip. I have been trying to reduce my expenses a lot lately so it feels wrong to now be spending so much on this at a time where I need to be saving for other things.
After I get back from this wonderful trip, I have a day and a half at home before I repack my suitcase to head to Astorville for the annual Family Feud hockey tournament. Once again, the Ethiers will be hitting the ice (some of us face first) to battle it out for fame and glory. Our first game is on Friday, Feb 14, against the Gillemettes at 2:00PM. We play two games on Saturday, one at 10:00 AM against the Champagnes and then at 9:30PM vs the Corbeils. We will be playing at the Astorville Community Centre so, if you are in the neighbourhood, stop by to cheer us on. The finals are on Sunday, if we are lucky enough to make it. I will be in nets again this year, a position I have not been playing much lately so it will be a challenge. I will get a chance to spend some time with Mom and my brother who I missed seeing at Christmas this year. This will be my last update for a little while. I will catch you up once I am back home.