One Less Thing To Worry About

I feel like we're getting to the point where the cards went flying and we're trying to catch them mid-air before they hit the ground. On January 6th I had a scan and on the 12th we discussed the results in length. My tumor is growing fast. Brain tumors are rare so it is hard to tell what that means. There isn't enough data to say "tumors that grow x amount over 6 weeks tend to...". What is certain is that they are "very concerned". So much so, we are trying some treatment options that aren't the standard practice but show promise for some of the genetic mutations of my tumor. I appreciate their creativity in crafting new options for me. Whatever it is, it's worth a shot! My cognitive abilities are holding up well. At every appointment, they test me on my vision, memory, thinking, and balance. They try to keep professional and neutral, but they seem surprised at how well I perform despite what they see on my scans. I love that look of relief they ...

It's been a year. Diagnosis, poison, radiation, two more poisons. You know, the usual. Pandemic, you know, the usual. We all are burnt out from the sickness, drama, and isolation. Don't get me started about Betty White.  Torin is amazing though, so that light shined all year long. He's the light of my life, obviously. When people ask how I'm doing I say "I'm ok, I'm tired", and I shrug. It's because that's the easiest way to say all of it, you know? It's a new year, I think I'll get a haircut because my hair has stopped falling out in chunks. I'm still losing it, just not as much so fast, one less thing to worry about! Brief synopsis of the last couple of months: I finished radiation at the end of October. I had a not good scan on the week before Thanksgiving. At the beginning of the month I took the same chemo I had taken in September. Then, after two weeks of a restrictive diet and nightly pills, I took my last dose of a third che...

 It's been a tough week. On the 16th I had a scan. On the 24th we heard it wasn't great news. What we expected, but not good. There is inflammation in the new tumor area that isn't clear whether it is irritated from radiation or new growth. Now we are adding a second chemo to my current one. These are all things we were warned about so we are less alarmed. What is most concerning is my ability to access my medicine. Every time my doctor's office has tried to get me set up with a new chemo drug there have been massive miscommunication issues and delays. Aaron started a new job at the beginning of November which meant that our new insurance kicked in today. We had paid over 2k in cobra for November so that I would have the same coverage for my scan and the new medicine. We met our out of pocket max in February so we could have gotten this new chemo for free. I found out yesterday morning that we have to start the coverage request for my chemo all over again with the new i...

Radiation is DONE! Sad and a relieved. I built some relationships while going every day and I'm going to miss them! They were caring and friendly! The last 5 days have been hard. My forehead and a good portion of my scalp burns/itches and if I itch or rub it, it stings. It's like having a sunburn from the inside out. It's not unbearable but it is uncomfortable. Also, my hair is falling out in small chunks. I expected it, not a huge deal, it's just, my hair is EVERYWHERE. I am constantly picking it off myself and everything around me. It's gross.  This will be the status quo for the next week or two but it's temporary, one less thing to worry about! Funny side story, after my last update my friend Sara texted me the picture of me in my mask and was like "this is your Halloween costume right?" My response was "it can be, they give it to me when I'm done. All I had to do was get brain cancer and then I get a free mask!" ..."the s*** you...

Sorry for the radio silence. Fall has been busy in the not so great way but now we are moving forward! I started radiation on the 29th of September and I took chemo the day after. They went back and forth for weeks on whether or not I should pair chemo with the radiation. It was frustrating to not know what the plan was for quite a while. Now I only have four treatments left out of 20 for the radiation. It has been a lot smoother since the treatment began. Radiation is also far more efficient and streamlined then it was 10 years ago. I am in and out in 12 minutes. It takes longer to drive there than it does to get treated. That is kind of amazing given how close we live to the hospital.  The chemo was pill form again but I only had to take one dose and it's supposed to take me out for 6 to 8 weeks. I had nausea in the beginning but that seems to have died down some. Right now I'm just so tired I can't even explain. Overall, I am still chatty and myself, but I get about 15 o...

Radiation next. They are working on a treatment plan and we hope to start soon. We took a mini trip to St. Joseph in the middle of the week to avoid the crowds. We also found a secluded cottage on the water. My requirements were to wake up hearing and seeing the lake. It was a needle in a haystack to find an affordable version of these requests last minute, but we found it. Aaron's parents took the dog and the baby so we could relax. A nice change of scenery before it got colder and my energy waned.  I feel incredibly lucky that we are able to just take off like this. Aaron has the flexibility at work and the means to take his spoiled wife to nice places like the lake.  I grew up right on the bluff of Lake Michigan and it feels like I am part of it. When I hear it I feel at home. It's like pushing the reset button and I immediately relax. I've been specific with those closest that after I expire I want part of me spread across the water, back home.  So, a plan is in the w...

Not great news. Chemo isn't working. The original area of concern seems to have responded, however there are new mutations and they are moving fast. This week has been scary. I had a scan last Friday night and Monday evening I was able to read the results in my health portal. Some text in that report said "this is concerning for disease progression". So then we were worried with no context for 2 days until my appointment on Wednesday that confirmed the chemo wasn't working. My case was presented to a bunch of doctors Friday morning and it looks like radiation and a new chemo combination is what they came to a consensus about. But, that's not set in stone. We will find out next week if the location can be safely treated via radiation. If not, straight to chemo. For now, all treatment will stop until radiation is set up which means I might have a couple of weeks of feeling better. So now we are discussing how we will spend that time. Obviously we want to take advant...