It has now been 71 days since my husband had a seizure that ended us in the hospital for several days. The seizure led to an cat scan that led to MRIs, EEGs, and other tests before they did a brain biopsy and told us that he has stage 4 Glioblastoma Multiforme and 18-24 months to live.
It’s been about a month since the last update. He finished chemo on the 8th and radiation on the 9th. He now has four weeks off from both. After four weeks he will have a new MRI to see if the treatments did any good or if the tumor is still growing despite the efforts.
After the four week MRI he will probably be starting chemo in some form again and will also be starting use of Optune, a device he wears on his head to send electric waves in to his brain 18 hours a day.
To be honest, every step of this whole process has been utterly horrific for me and I can’t begin to imagine how hard it all is for him. In total honesty, in an especially hard moment, I had the thought that it would have been so much easier for all three of us if we had lost him after the seizure instead of going through all of this to try and prolong his life a little bit longer. I didn’t mean it and I am grateful for all 71 of the days we have had together since the seizure that I thought was him dying. Everything is so hard though.
The current worry is that his red blood counts are too high and they may have to take a pint of blood out to thin it out next week if we can’t get it thinner with more water and exercise. They are also talking about a sleep study to check for sleep apnea. We’re not sure we’re on board for that, but will cross that road when we get there.
We’re trying really hard to take things just one day at a time and to keep things as normal as we possibly can. I’m hoping being off of chemo and radiation for a month means he will need less sleep, currently he is sleeping about 14 hours a day between night and nap.
Unfortunately we’re also terrified because he will be off treatment for four weeks. His tumor grew another half an inch in 19 days before he started treatment. What will it do while left to its own devices for four full weeks plus some days for analysis and appointments to be made? There is nothing we can do about it though. That’s protocol. We just have to hope the tumor doesn’t grow rapidly enough to kill him before we see another doctor and start the next phase of treatment.
In the mean time I check a dozen times a day to make sure he’s still breathing. I bought a security camera to face the bed so I can check on him if I have to be out of the home briefly while he is napping. I check his fitbit multiple times a day to be sure he is sleeping soundly and his heart rate isn’t getting too high. I worry constantly about how to best care for him while still being able to take the best care of my four year old. Since the seizure it feels like every choice I have to make is to choose between my husband and my child and I hate it so much. It is so much work and so much stress and so unfair to all of us, my four year old especially.
But for now we wait and we do our best.
ETA: An Aunt has started a Gofundme campaign for my husband, daughter, and I. If you would like the information on how to find it let me know.