It was another fun filled and busy last week. On Tuesday, I was able to meet with another Neuro Oncologist in Grand Rapids. I am still consulting with the Neuro Oncologist at University of Michigan, however it will be a lot easier and more convenient to be overseen by someone in Grand Rapids. Due to Covid and fears of medicine shortages, the doctor went ahead and ordered my Chemotherapy drugs and I should be receiving them from the specialty pharmacy in the next few weeks.
The Oncologist decided to have me start with Temodar, which is not quite as toxic as the other Chemo option called PCV. It was also the opinion of this doctor that I should be doing Radiation in conjunction with the Chemo. Temodar turns out to work well with Radiation and can actually make it a little more effective. So, I will start the Chemo once I start Radiation, which should be about 3-4 weeks after my next surgery. I will need to take the Temodar along with some other prescribed medications 7 days a week at specific times.
The first round of Chemotherapy will match the length of Radiation treatments, which will last around 6 weeks. Assuming I only need one round of Radiation, I will get a 4 week break from Chemo before I have to take the Temodar for 5 days, then a 23 day break and then back on the Temodar for a length of 6 months. I’ll have an MRI after the Radiation treatment and then an MRI every 2 months. One major side effect besides the nausea is fatigue. Radiation makes you tired, Temodar makes you tired and the anti nausea medication also makes you tired. So I will have basically no energy at all during this time.
I was also able to meet with the Radiation doctor this week as well for my initial appointment. This Doctor agreed that now that my cancer is Meier aggressive than originally thought that we need to do Radiation after surgery. Unfortunately, on this side of the state there are only Photon Radiation machines. There is another type of Radiation call Proton Radiation that allows for a more targeted aapproach to Radiation. Basically, with Proton, less radiation is needed, and they are able to target the tumor areas more efficiently. There are only two hospitals close to us that have the Proton technology, one over in Detroit and the other in Chicago. However, in order for me to receive that type of treatment, I would need to basically live at one of those areas over the course of 6 weeks as radiation is given 5 days a week. I was all for this but Lisa refused to be stuck home with the kids by herself for that period of time. Also, this means I would not be able to work during this time and have to pay for a place to live. And depending on when we start this I may still be recovering from surgery and unable to drive etc. we just can’t find a way to make it work.
Here is an image to show the difference in technologies (although it is a little exaggerated since it is a marketing photo 😊 )
The big concern with Radiation is that when the radiation is sent into my brain, it will kill the surrounding cells as they try and target the tumor. For example, when they target the tumor that was in the front of my head, they have to be extremely careful with the Optical Nerve for my right eye. If they are not careful with the radiation, they could end up permanently blinding me. The same concern with the tumor in the back of my head which runs along my motor strip where paralysis is a potential issue.
The last exciting thing for this week was that I was able to get my Functional MRI scheduled at Spectrum and we have scheduled my next surgery. I will be getting the F-MRI next week and will be going in for the next craniotomy on April 13th. I am relieved that I was able to get my surgery scheduled (although what got me on the schedule was the upgraded tumor stage… Which isn’t a contest that I want to win). At the same time though, Lisa is not going to be allowed to visit me so I will be stuck in the hospital by myself for 3-4 days or however long it takes me to be released. We decided this time I am going to stay as long as possible, since the kids are home. No school and social distancing makes it hard to find babysitters to take the kids for the day, and I will need to have quiet time to recover. Lisa is really struggling that she won’t be able to see me after the surgery, and she is a nervous wreck about all of it. No one will be able to sit with her and distract her this time and she’ll have to keep the kids busy on top of it.
Overall, it has been a pretty hard week. Being 30 years old, its hard to grasp what I am diagnosed with and what the life alternating effects could be. The surgery could end up paralyzing me on the right side of my body… If it doesn’t, then I need to worry about the same thing happening during Radiation as well as potentially going blind. To top it all off, I’ll have to deal with the side effects of Chemo and Radiation for the next 8ish months or so. Plus of course I have the same worries as everyone else with COVID-19, which has also effectively halted any fundraising options for us. We definitely won’t have the support like we did last time, simply because of COVID and honestly, last time was a struggle and we didn’t know how we could have gone through it without everyone’s help and support. This will definitely be interesting... hopefully Lisa won’t have a panic attack 😊️
That all being said, I know it could be worse. Luckily for me, I have recovered nicely from my last surgery and am getting to spend so good time with Lisa and the kids. My diagnosis is not the best, but its also not the worst either. I also have options out there to help me fight the cancer, and eventually move on with my life. I am very thankful for my wife, family and support network. I am thankful for my job and the support I have received from them. Hopefully in 8ish months from now, I can look back on this time as a crazy experience and move on with other things in life.
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