When I started my blog as “rich experiences of my family”, this was not what I had in mind at all. But spending most of your days with some sort of healthcare system participant is a whole new life – la vida loca!

A few things stood out today as I was driving back from my spine MRI that I bailed out of. Yes, I bailed out, just couldn’t take it today. I realize that I have a love/hate relationship with the MRI machine – I am grateful for it being available to me, living so close to 4 different ones and for it actually finding my “oli-glioma”. However, I also hate meeting it so often, feeling like I am in a coffin for 2 hours, the noise it makes and the news it usually delivers  – AND the still position I have to be in with my mind wandering to other places – usually not so good ones. So today, my heart rate tripled when I went in, I couldn’t breathe and I left. For a while I felt like a total hypochondriac, telling myself “you’ve done this twice already” but also realizing that the next one was always worse than the first one (from handling it). Given I will need to do this every 2 months, I better get used to this. Apparently, Xanax is the solution which I am not thrilled about so any recommendations on how to reduce anxiety while being shuffled into a large GE coffin-like monster in a complete immobile position, I am all ears. (it looks open but you don’t see the open ends, all you see is the few inch ceiling from your head and can’t move a bit) – this is not me by the way and you are there alone.

MRI

I have noticed slight differences in my life as one of millions living or being diagnosed with this disease:

  • it is a weird feeling to know it is here to stay, for the rest of my life. I don’t know if it is chronic, curable, observable – you pick adjectives – but definitely something that is here to keep reminding me. It is like someone moved in, uninvited and you can’t evict them – you are stuck with them and you do not get along at all! Sometimes you just ignore them, don’t see them – but at times, they are in your face and you can’t take it. Usually that happens when I am in some doctor office where we go through all the details again and it becomes too real.
  • There is a huge abundance of cancer advertising. How is this allowed? I must have not noticed this before but now, literally every ad or some talk on news is about cancer. It is a constant reminder that you now belong to this community and B and I usually smirk – well, thanks TV for the gentle reminder I should be looking at this facility – oh my gosh. I know that for others this may be helpful and great for public health – but it is not for me. I want my information to come from the doctors, not TV or companies trying to make a profit.
  • Everyone is very concerned, probably freaking out a bit more than I am. I assume it is because I have more information and am getting a bit more positive news – but also because the word “cancer” just plainly sucks and has a horrible connotation for everyone. I do appreciate that feeling of shock, trust me. But I also don’t have enough energy or strength to calm other people down – I need to manage myself first, and the closest around me. Just stay positive, send “butt kicking” messages and encourage me – keep your sorrows for your private time 🙂
  • I also realize that it is very hard to come up with something to say – boy, I wouldn’t know how to respond myself. One thing I find kind of funny is the quintessential American question of “how are you” or “how are things” followed with the face of “I don’t really care or want an answer, it is rhetorical“. I always found that to be a strange, strange American joviality. We Czechs are a bit more direct– when you ask, you will get a direct answer. So, there are times where I say “well, it kind of sucks or not so great” because you asked.  If you are not ready for honest answer, don’t ask me. I do reserve the right to just say “good or fine” to the random people –  I don’t need to get into deep chat with every waitress or Uber driver 🙂 Particularly funny is when in some non-neurology office the nurse asks you “has anything changed since your last visit”? I just burst out laughing. Yep, a tiny bit.
  • I got excluded from a lot of clubs 🙂 We get these life insurance sign ups in mail for great prices as I used to be a  fabulous candidate. Not so much anymore – last week the mailing said – “life insurance for $20/month and no health exam, no labs, nothing – just 2 questions and you are in” – well, surprise, the first question in and Misha is out – forever. I also have screws in my head so now the “what metal parts do you have” question is an essay.
  • You start recognizing the healthcare folks and calling them by their first name. And you also develop a bit of an anxiety from doctor’s appointments. Normally, I’d treat them as a complete checkmark, no news, super healthy, mark every question No. Now I have explain it over and over, get some new test and wait for some news – it is always a cringe feeling to wait for the results.
  • I am too aware of everything going on with my nervous system and very suspicious. This one sucks! I had a tingling on my pinkie, ants feeling on my leg, a small pain in my lower back – and my mind goes “which nerve is this, could this be a cell going weird, is this normal, which part of brain controls this” – I will become a total hypochondriac if this continues – hopefully it will not. I started exercising so my body is probably going – what the heck? Surgery, drugs, now treadmill? Give me a break! I am coming off the anti-seizure medication so probably not as numb, but still – things I’d normally just blow off are staying in my head way longer.
  • Everything is incredibly EXPENSIVE. I am going to write about this separately but holy shit – universal health insurance and control of pharma prices are absolutely needed. I need to calm down and go through the bills – 2017 out of pocket met in December alone, 2018 deductible met on Jan 5th – so vacay of 2018? Not on the books right now – and boy, we actually do have health insurance – and a good one.

But today was not the best day – had a radiation oncologist appointment – first one so things are sinking in a bit – so B found this video for me and I just about had a laughing fit in that waiting room – how appropriate !!! Enjoy… this would be our basset.