I know it has been a while since I have written. To be honest, I have been busy and there is not much exciting to report anymore. On the cancer side, I am still in remission. I continue to see both my hematologists regularly to hear them say that I am progressing well. But I know you guys still want to hear details (at least I think so) so here they are.
A lot has happened in 3 months. What should have been only 3 weeks of house arrest has now blossomed into over 3 months! It has not been the year I was imagining when I started it. This was going to me my year! Still waiting for “This Year” to start, I guess. On the bright side, I made up the lost time I spent in Toronto away from the kids quickly (even though most of it was spent with them hibernating in their rooms, sigh).
In my last post, I left off at the end of what should have been the end of the kids’ March Break. This year, this was extended another two weeks while schools closed and teachers tried to figure out how they were going to continue teaching the kids, if there would be a time that everyone would be allowed back at school. For me, the biggest issues were dealing with the fact that everything was basically closed and that people were hoarding while others were shaming them. And, what is it with hoarding toilet paper for a respiratory virus? Anyway, I digress. All this stress just added to the anxiety I was already feeling at the time as I was dealing with shingles while knowing that I would need to start working again. During the week of March 23, I had a call with my work manager to discuss my back to work plans. We decided that I would officially start working on Monday, March 30 and that I would start with doing about 10h/week, translating into about 2h/day. With this in mind, I reached out to the crew at my office in Ottawa to see how they were dealing with the pandemic and found out that they were beginning to close the office and send everyone to work from home moving forward. Though I had my laptop already, I decided to go into the office to pick up a few things to make my home office easier to work out of such as an additional monitor, docking station and headset. Mary Ann also helped me setup an area in the basement that now includes a desk and chair where I can station while I am working. It is right next to my workbench and includes a TV to keep me occupied or to play music while I work.
My first week at work, the week of March 30, was mostly spent on the phone. I spent a lot of time catching up with my colleagues and planning the work I would be doing to start. Two hours can quickly fly by when you have meetings/calls for 1.5h and then catch up on your email. Within no time, my days were done but I did not feel like I accomplished much. This was pretty much the trend for the first few weeks. It was finally great to be a productive member of society after being off for a full year. In my “off” time, I would try to take walks or work around the house. My energy levels were still very low so I needed to pace myself to not over do it though. To this day, I still struggle with this. During the month of April, MA worked on trying to get rid of some things that we were no longer using. One was our kids play structure, the one I built when we first moved into our new house. I remember vividly working on it to only discover that the mosquitos in our neighbourhood never rest and attack you all day long. We were all sad to see it go but understood that it was time. It certainly makes cutting the lawn much easier though.
Much of April was spent in the house. I did not go anywhere except for medical appointments. MA did all the grocery shopping while the kids and I bummed around the house. Mid-April did see a change to our daily lives and schedules. All three kids decided to seek jobs during the pandemic. Many of the grocery stores nearby were looking for people desperately and my kids decided it was a good time to work as their school schedules were all messed up now that they are not in class. Cassy was hired first at one of the Metros in the area. Isabelle was working at a restaurant prior to the lockdowns but lost her position when the restaurant could not serve customers inside anymore. Geneviève had applied at a different Metro and the local Sobeys but did not hear from them for a long time. About a week after Cassy started working, Isabelle applied at the local Sobeys and was hired within a few days with Geneviève coming onboard at the same time, at the same store. Isabelle and Cassy are both cashiers at their stores while Geneviève is working in the bakery. The irony at this point was, prior to the lockdown, MA was the only one working (Isa was working but not much) and now the rest of us are working while MA was not. I must admit, it is really nice getting a paycheck again and not having to rely on insurance payouts. During this time, I tried working with my HR person at work to ensure that I was being paid correctly, had the correct vacation and sick days on file and work towards getting off the insurance. I figured the latter one would be the easiest given my experience last time but, so far, this is not the case. More on that later.
My birthday was a huge bummer as well, not so much because of the lockdown but that one of our friends was killed the day before. You all remember the massacre in N.S., right, well it was my friend who was the RCMP killed. Heidi used to live in Ottawa when she was a member of the RCMP Musical Ride and we got to know her through our neighbours at the time. We were four couples who hung out a lot and cooked great meals together. She was a very kind woman who you would not expect was a cop. Both MA and I were really sad to hear of this tragedy, so much so, that I was not in much of a mood to celebrate my birthday the next day. The following weekend, I did get a chance to celebrate it a bit but, without friends there, it was not the same. Similarly, Cassy and Isa had their birthdays early May. We celebrated the best we could but it was still hard that they could not share it with their friends.
By the end of April, I had decided to bump up my work hours to 15h/week. Though it was a 50% increase, I did not expect it would have such a dramatic impact on my energy levels. That 1h/day was difficult to adjust to and took a long time to overcome. As I mentioned, the 2h I was spending previously would fly by because I was spending a lot of time chatting with people and reading emails. The extra time now gave me a chance to do more and challenged me more making me more fatigued. I was exercising my brain more each day and it was leading to fatigue that came on sooner and lasted longer. By mid-May, I was so burnt out each day after my shift that I feared that I would not recover, further adding to my anxiety. It was around this time that I finally made contact with my case worker at the insurance since end of Jan. When I spoke with her last, she stated that she was going to touch base with me in March to see how I was and if I would be ready to go back to work. I was not in a hurry to chat with her so I left this in her court to reach out to me. By this time, I was working and still getting paid out by them. I did not have her direct number, nor could I even remember her name, not that this info would help me reach her anyway. She had called and left a VM on my home line and I called her back the next day only to leave a VM of my own with specific instructions to reach me on my cell as it is always on me, something I have mentioned every time I spoke with her or her counterparts. Anyway, we finally were on the phone at the same time as she called just as I was about to eat dinner so I was probably not in a great mood to begin with. It was a stressful conversation where she went on and on that I should have reached out to her to tell her that I am working (though I tried) and that she could not agree with my back to work plans (though my company and manager do) and that I need to have my doctor come up with a plan (even though my doctors are leaving it up to me to decide and support the plans I laid out with them). She also mentioned that I could be in a situation where they may have overpaid and that she was going to look into it further. I was furious after this conversation which increased my anxiety as I felt like I somehow did something wrong. Man, I hate dealing with insurance companies! If only I had an aunt who worked in the insurance industry!
With the long weekend of May coming, it was weird not getting ready to drive somewhere. Normally, we would be heading to Mom’s or to KL to visit. This time, we were not going anywhere. It was nice to not have to worry about packing everyone up, especially now that the kids are working, but it was still sad to not see everyone as we have not seen the KL gang in a year and my family since Thanksgiving. The week later, I decided that it was time to increase my hours again. Starting the week of Jun 8, I am now working ½ days, 4h/day or 20h/week. I was still hesitant when I made this decision as I was still feeling fatigued but I thought it was time to push myself a bit more and see what I could do. Prior to ramping up officially, I did increase my “work” hours in preparation. I made efforts to do more each day, whether it was work related or not to see what I could achieve with the hopes of getting back to normal more quickly. Once again, at the end of the month, I received another insurance payment. So much for cutting me off! My concern right now is that they will want the money back when they realize this. I sent my agent an email in early June about this, hoping that this would trigger her but, again, dead air! You can’t say I did not try. In early June, the government opened up the lockdown that allowed MA to see clients again. This was great news once again as it meant she could also start earning money (though she was doing pretty good with the CERB grants to date). On June 8, I finally had someone in to replace my eavestroughs. It has been years since deciding they needed replacement but there was always an excuse to not get them done. The old ones were literally falling off and so backed up that they would overflow with each rainfall. We are also addressing another item on our long house maintenance list. The shower in the kids bathroom is prone to leaks. Though I have tried to address it many times, it has not had a lasting impact. I have been wanted to fix and upgrade their bathroom for years and we are finally doing it. We are in the final steps in the planning phase and have already started purchasing some of the major items. There are just a few items left to pick out before work starts in Mid-July. The plan will be for the family to do the demolition and then have one of MA’s clients come in to rebuild and finish it. This was a hard project as I wanted the kids to be involved in the decisions however they each have different tastes that do not agree on much. On a different topic, I am sad that Geneviève is missing out so much this year. She is graduating from high school this year and will not get to say goodbye to her friends, have a proper graduation and prom, doing frosh week at university in the fall and being in actual university classes, not online ones. These are special milestones in ones life and it is a shame that she is being stripped of them. I wish I could do something to make it better than the simple sign on the lawn. Here are the pictures in case you missed it on FB.
As mentioned, I continue to visit with doctors and nurses. In April, I restarted all my childhood vaccines. I found out that part of the protocol for stem cell transplants and CAR-T cell patients is to rebuild their immune systems. This means that they need to redo all their vaccines. I am slowly getting my shots to not overwhelm my system so I have had only a few of them so far. I forgot how much and how long they hurt. No wonder little kids cry for so long after getting them. Next week, I was scheduled to go to Toronto for another 3 month follow up. I was supposed to be there Jun 17-19. With everything going on and Toronto being a hot stop for COVID-19, I reached out to my trial nurse to see if I still needed to go down. I knew that the doctor’s appointment could be done virtually but there are strict requirements for the CT and PET scans in the trial guidelines that may have forced me to go to Toronto to have them done. On Monday, it was decided that, for the first time (after I have been begging for this for a year) that I can have these tests done locally. What a relief as I was worried that I would need to drive to Toronto and back in one day as I had no place to stay while I was there, should I properly respect the lockdown criteria. So, next week, I will have a phone appointment with Dr Kuruvilla while I wait for my CT and PET scans to be scheduled in Ottawa.
So, this pretty much wraps up the past three months. As you can see, there is not much to talk about. ?I might make this my last post for this round. It has been 15 months that I have been keeping you updated with my life and my fight and it was good. You all have your own lives to live and don’t need to read about my exploits anymore. I will continue to get better and work towards being a fully productive member of society. If the government allows me, I hope to get back to the things I miss and love which include playing softball in the summer and hockey year-round. I hope to get out and see you all very soon as I miss you tremendously! I hope to continue to do my fundraiser each year but still am not sure if I will need to postpone this year’s. I hope I can still count on you for your support with all this. Until we see each other again, very soon!