Life of a radiation patient – week 3


Struggling a bit more this week. Heartburn from the diet, a bit more tired and exhausted from the constant thinking of what I should eat or make. The diet, I did this to myself, largely because I want to control something that is part of this treatment. I am in week 2 of the diet and craving bread, pasta, anything a bit more starchy with real texture. Sick of all the fat, meat and veggies….literally can’t even look at avocado and I love avocados!  I hope (and read) it is temporary in the beginning. I made about 7 different meals from scratch for myself that are keto – butter chicken, snickerdoodle cookies from almond flour, cream cheese pancakes, cauliflower tikki patties, etc…. and I am tired! I don’t love cooking so this is a bit of a drag… but signed up for it, so not giving up yet. B is on it with me, so that helps – and some of my friends offered to help with testing some recipes. I borrowed spiralizer too so exploring. Cut coffee, no alcohol. This is harder than I thought – but the thought of doing it for killing those cells is way stronger than losing weight.

Radiation is beginning to take some toll – my head burns like I got a serious sunburn on top of it. My hair hurts when I move it – it also looks like crap because I didn’t color it, cut it and don’t blow dry it – as I want to give the hair a break while it goes through this extreme sun tanning – and see where we end up. So styling – phew – get up, put some large comb through it, suck up the pain and go. I skip make up as the mask is so tight that my eyelashes touch it so any mascara gets back in my eye (and that is a panic attack waiting to happen – stuck in a mask with something in your eye), skip earrings for the radiation machine… so pretty easy morning routine:-) I started taking pictures daily to see if anything changes…. and capture it.

First 2 weeks – not my best look but who cares, pretty natural.

I am getting to know the radiation therapists and my fellow patients quite well. I am definitely the youngest in the room – not that this doesn’t happen to folks in their 20s or 30s. It also gives me a view of what’s to come – and it is not a great view. One gentleman has a cain, one lady has turban and only walks with support from her husband, very pale and unhealthy looking.  I am not taking it too seriously but still, it has an impact and not a good one. The therapists and I discuss my music choices which change a lot – I need just the right 3 songs to get through it that keep my mind off of it. Today, I almost waved to get me out of it, I just had this horrible feeling that something is burning my brain cells – and that just can’t be good. But breathed through it and focused on Bon Jovi’s Living on a Prayer, word by word. Apparently I am the only patient who blasts loud rock music through the speakers – not sure how others do it but if I didn’t have it, I’d be on Xanax constantly.

I poked into the Oligodendroglioma FB group and got out – it is just not good for me. Most stories are bad, most stories end up with people’s recurring tumors. But most also had no 100% resection – so I got out. Sometimes too much comparative info makes things worse. I am reading Emperor of All Maladies – the Biography of Cancer  which is fascinating. To balance the humor, I added Trevor Noah’s Born a Crime which is great. I also caught up on Handmaid’s Tale and Black Mirror – ooph, I know mostly dark, right? Well, I always liked more of a drama and close-to-reality things that make me think…. but no worries, the evenings are fully owned by the incredibly efficient remote control hands of Max/Mia/Lucas who make me watch Bunk’d, Friends, Lab Rats or America’s favorite videos.

One bonus – today is the first day when I actually have a headache – in over 2 months!! I am beginning to think the tumor had something to do with it – you think? And it is super stormy, rainy today so not a surprise….. I may be headache free – yay. How ironic….

Mum is coming on Saturday and Olympics start on Friday – I am so excited and look forward to spending some time with her and binge watching every Olympic game, even curling! Go Czechs (that is in hockey, not curling). The opening ceremony will undoubtedly remind me of my Rio experience which I am going to go and re-read to get in the spirit! Little throwback to Sochi Olympic opening night – up until midnight!

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Opening ceremony of Olympics 2014

6 comments

  1. Hi Misha, it sounds like you are handling this challenge, just as you handle all you face. As a mom of daughters near your age, I have wondered if your mom and/or dad were coming to spend time with you and so happy to hear your mom will be here soon. I know she so much wants to comfort you and share this time with you. Enjoy the Olympics and my best wishes that you continue to win against this dreaded disease.

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  2. Sorry you’re beginning to feel the cumulative effects. Remember anything you read (or vast majority), is the people who had bad experiences. Rarely do people who had good experiences post in the groups. (Read this somewhere and there was data behind it).

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  3. Páni, náhodou vypadáš skvěle! S tímhle přístupem věřím, že to i skvěle zvládneš. Moc držím palce, ať to dobře dopadne. A i když jsme se už dlouho neviděli, o to víc věřím, že to brzy napravíme a někdy se potkáme. Omlouvám se za češtinu, ale říkal jsem si, že Tě přání v češtině třeba trochu potěší a vytrhne z té záplavy anglických:)) Pozdravuj mamku, užijte si Olympiádu a pořádně fanděte.

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  4. Misha,
    Maybe you should right a book…truly you bring vivid pictures in my head whenever I read your posts, not only on this but all of your other adventures, You have had many and you always look for the positive and realistic view of everything. Even now with all the ‘shit’ going on you face every day with a challenge and make sure you can manage through the very intense treatments. I am glad you got out of that facebook group because you don’t need the negative, you need to surround yourself with positive like you are doing. Hugs to you and your family. By the way–your pictures look great—you just need a little grin 😉
    Cheryl

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