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 insurance. What we pay this month via our new insurance won't go towards our max out-of-pocket for next year.
Their miscommunication is delaying my medication timeline and now screwing with our finances. Don't get worried, we are fine, we are financially prepared, we have what we need, so don't start a gofundme. It is unfortunate because I depend on these people to do their jobs effectively. They do this process for people all day every day and for me personally, they are 0 for 3 over the last 7 months.
I'm talking about this to help increase awareness. People who don't regularly need healthcare probably don't know the extent to how complicated our healthcare system is.
I once read a personal account from an American who was living in a foreign country who felt a lump on their breast. They went to a clinic, saw a nurse, then a doctor did the exam, then was escorted down the hall for an x-ray, and then returned to their room and received a diagnosis and a recommendation for a treatment plan. The whole process took 90 minutes. They felt the quality and efficiency of their care was awesome. It was free.
For me, the process was: I asked for a scan on January 25th, got my scan on February 14th, a diagnosis on February 19th, and started my treatment on March 15th. What took 90 minutes for another person took me 7 weeks and cost 2k out-of-pocket. Since then, I have had to babysit and pester people to get my meds.
I'm tired. I'm frustrated. I cried yesterday.
Cancer is hard enough without all of the drama. I'd like to think that we could do better than this.
Luckily, I've been at this long enough that I know how to navigate the mine field. What to ask, where to call, etc. One less thing to worry about.
Not all of my friends in my brain tumor group have the know-how or cognitive ability to advocate for themselves like I do. So please do me a favor and advocate for universal healthcare. It has the possibility of creating a world where others and I don't have to work so hard to get our needs met.
Torin turned 18 months on Tuesday. He hardly looks like a baby anymore! Today I walked downstairs (I sleep later than my boys do) and saw him standing on a dining chair holding onto the back of it like it was a railing, just casually watching TV. 😱😱😱. He climbs onto the couch on his own. He tried to climb from the couch over a ledge to get onto the kitchen counter. He wants to lay on the TV stand parallel to the TV. He has accomplished this twice, so far...
I know this is karma. Taking into account my mom's stories, I was worse than this. However, he's just getting started so he might tell me: "hold my baba".
Who knew that this precious dinosaur could wreak this much havoc before lunch?!
His snuggles are the best though, I hope he never becomes too cool to hug me.
