A Lot Can Change in 7 Months Too
I don't even know where to start. But the longer I put off trying to write this post, the harder it gets, so...
Matt was feeling better and regaining strength each week. As he became more active and independent, I was back at work more. The Temozolomide continued to be easy on Matt, with no side effects, and his MRI at the end of the month showed a slight reduction in the size of the tumour. This was wonderful news that felt great to share after so many setbacks.
We were sad to see our exchange student, Helen, return to Germany, but we had a really great month enjoying all of the best parts of summer - slow mornings with coffee, regular workouts at the gym, time with family and friends at cottages, walks with dogs and lots of music. Matt coached Henry's baseball team with his friend Scott and looked forward to the weekly practices and road trips for games.
At the end of the month, Matt went to Waterloo for a Strongman workshop at BlackFyre Performance Training and loved the time he spent there lifting heavy things with Chris. To see his transformation from struggling to walk in the spring, to confidently doing a farmer's carry with 155 pounds in each hand was truly inspiring.
We celebrated our 19th anniversary at the beginning of the month. Matt continued to coach baseball, work out at the YMCA, and take the dogs on long lazy walks. We let each of our kids choose an event that they wanted to go to this summer. Rya and I went to a 5 Seconds of Summer concert in July, but we had the events for the two other kids to get to this month. We took Max to a Twenty One Pilots concert in Toronto and Henry to Detroit to see the Giants play.
When we were at the ballpark in Detroit, Matt seemed a little bit off. I noticed that both his spatial reasoning and his vision were different that day, but he didn't have a headache and otherwise seemed okay, so we carried on and enjoyed the rest of our day with Henry.
Matt had an appointment scheduled in London for the next morning, and the timing was kind of perfect. We asked the doctor about the changes I had noticed and after a few tests, he confirmed that Matt's vision had changed significantly. It was no longer just his peripheral vision that was questionable, Matt couldn't see anything left of centre, regardless of the height or the distance. An MRI the following week confirmed that the tumour had started growing again, and the doctor told Matt to stop taking the Temozolomide as it was no longer effective.
Transitions have always been challenging for Matt, so as the return to school approached for the kids and me, Matt made plans to fill his days as the rhythm in our house changed. I took on a new position at work and Matt was very supportive, taking on more responsibilities at home to make sure that things ran smoothly for our family.
Last November, Matt left the classroom on a Friday to have surgery the following Monday. We didn't realize at the time that it would be the end of his teaching career. He was back at work six months after his first surgery so we both assumed this one would be no different. After such a difficult spring, it became apparent that returning to work was not in Matt's best interest, but it didn't feel good to either of us that a long and successful teaching career had ended with what Matt described as "an unceremonious thud". After chatting with a friend on staff, it was decided that a celebration was in order, and they would happily host it. Matt has been on medical leave since his second surgery, so it didn't seem right to call it a retirement party. Instead, it was dubbed Fitzapalooza and Matt prepared a guestlist and a playlist. We had a great evening with friends, colleagues and former students and Matt said that next to our wedding day, he had never felt so much love and support.
There were more appointments in September as Matt's team developed a new plan. After his first surgery, he had 30 sessions of radiation, and we were told that was the most he would be able to have. When the discussion of additional radiation came up in September, I didn't think that he would be able to have it again. The doctor explained that most Glioblastoma patients are only able to have the initial 30 doses of radiation because they don't survive long enough to be able to tolerate more. However, because it had been four years since Matt's initial radiation, he was approved for 10 more sessions and they were scheduled to start at the end of the month. It was also decided that he would try two new chemo drugs once the radiation was done. The first was called Lomustine and was oral. All of the pills would be taken in one day, and then repeated every six weeks. The second was an IV treatment called Mvasi. It isn't covered by OHIP for Glioblastoma, so it would be administered at a private clinic in Guelph once every 3 weeks. It felt good to have a plan.
Matt had to learn to adjust to walking with half his vision. Initially, there was a lot of trial and error on his part and a lot of hovering and worrying on my part. I struggled to find a balance between preventing as many injuries as I could, and respecting his independence. He struggled with tripping, falling, bruising, and cutting himself - mostly his head and shins - and accepting help. The running joke in our house became "who put that door/fridge/table/dog/sofa there?!?". We both learned to accept that this was just another challenge to tackle, and the kids were really great about helping Matt find his way when we were out together as a family.
Other September highlights included a trip to Toronto where Matt and I consumed copious amounts of seafood before seeing Mastodon and Ghost in concert, brunch and dinner dates with friends, and a fun night at Heartwood Hall to see Ron Hawkins perform. There was also a reoccurrence of DRESS thrown in there for good measure, but an adjustment to steroids got things under control before radiation started.
Matt had been away from the kids so much this year that he didn't want to leave for another two weeks for radiation. Friends and family graciously volunteered to drive him back and forth each day to London, and he really enjoyed these road trips. They were a chance to spend some quality time with some of his favourite people. The remainder of the month was pretty uneventful. Matt was a bit tired from the radiation but generally felt good. He spent hours and hours researching and creating a new workout plan to get him through his upcoming chemo.
At the beginning of the month, Matt and I went to Prince Edward County with friends and enjoyed a really relaxing weekend away. When we returned he had his first dose of Lomustine and then spent the week walking dogs, juggling coffee dates with friends, and doing workouts at home, but by the following Saturday, he had a really bad headache and lots of nausea. He spent all weekend in bed. A trip to the ER a few days later revealed that it was a combination of radiation necrosis and tumour progression that was making him sleep a lot and barf any time he was upright for more than a minute or two. They increased his steroids, which helped with the headaches, but he continued to struggle with fatigue and nausea. As the month went on his balance and depth perception continued to get worse, his short-term memory was a bit sketchy and he had some confusion at times. Some days he would be up for a few hours and be chatty, but most days he felt pretty awful and spent 20+ hours in bed.
Matt was scheduled to have an IV treatment of Mvasi in Guelph in the middle of the month. This drug does not slow tumour growth for Glioblastoma patients, but it helps to alleviate the symptoms associated with it and improves quality of life, so it's often given in conjunction with Lomustine. I wasn't certain that he would be able to tolerate the drive or the treatment, so I called his doctor in London the day before his appointment. Dr. Climans told me that given the sudden change in his symptoms, the progression of his tumour, and the length of time since his initial diagnosis, he thought that it was time to transition to end-of-life care. It maybe shouldn't have come as a surprise, but I was not prepared for this news. When I asked if we should proceed with the Mvasi the following day, he said that if I felt I could get him there, it might give us some peace of mind to know that we had tried it. He said that if it worked, we would see an improvement in his balance, his nausea, and his pain and that he would feel like he did before he had radiation. I enlisted the help of a friend, dug his wheelchair out of the basement and the two of us got him to and from his appointment in Guelph the next day.
While we waited to see if the Mvasi would work, Matt was assigned a local palliative care team and the home care coordinator for our region was really helpful in getting some support in place to make things safer and easier for Matt at home. As the month progressed, Matt had a few falls, and couldn't be left at home on his own. We were very fortunate to receive the maximum home care support available, but the 15-minute daily check-ins with a nurse and the twice weekly 45-minute sessions with PSWs weren't enough support. I set up a schedule of family members who could take turns staying at the house with Matt while I was at work each day. Although he was in bed all the time, he didn't sleep well, continued to feel nauseous, and had difficulty finding comfortable positions to rest.
It was a relief to meet the palliative care doctor who was assigned to Matt. She was calm, kind, and direct and took the time to answer our questions. After creating and scrapping so many plans over the past month, she reassured me that we didn't need to figure out everything at once. She focused on getting some of Matt's symptoms under control, changed some medications, and said she would see us the following week after consulting with the doctor in London.
As awful as Matt felt this month, I was really grateful that he had a few mornings where he felt well enough to have some difficult conversations. The home care coordinator spent several hours with us one morning, carefully laying out things that we needed to consider and I was so happy not to have to make these decisions on my own. A few days later he had another good morning, and we were able to talk to the kids together about the changes in Matt's health status. It was good for the kids, and for me, to be able to have Matt be part of this discussion.
When Dr. Hodgson (the palliative doctor) returned for an appointment at our house the first week of December, Matt's symptoms hadn't improved. He was uncomfortable regardless of his position in the bed, he was nauseous every day and was starting to have trouble swallowing his pills. He was no longer able to sit up or get out of bed on his own.
In November, Matt had decided that when the time came, he wanted to go to Chapman House, the local hospice. But as long as he was still being treated for Glioblastoma, hospice wasn't an option. He was scheduled for another dose of Mvasi the following week and I didn't know if this was a good idea or not. I knew that Matt wasn't getting the best care at home, but I didn't want to forego the next treatment if there was a possibility that it might help him feel better.
After speaking with Matt's team in London, Dr. Hodgson said that both she and Dr. Climans felt that if his symptoms hadn't improved after the first treatment of Mvasi, it was unlikely that they would improve significantly with another treatment. They felt the discomfort of the travel and the treatment was not worth it for Matt. She said that if we were in agreement with discontinuing his chemo, she felt it was time for him to move to Chapman House. We were in agreement.
On December 7th, Matt moved into the hospice and within a few days was feeling better than he had in several weeks. With round the clock nursing care and some additional changes in medication, they were able to get Matt's pain and nausea under control. He still sleeps a lot, he doesn't talk a lot, he isn't able to get out of bed at all, and he is often a bit confused. But he is enjoying the freshly cooked meals and the milkshakes and all of the visits from friends and family. He is comfortable and well cared for and surrounded by love.