Fast facts (if you don’t have time to read the full post): Tomorrow is my last day of getting fried! Well, at least on my chest. I got my schedule for my spine radiation so I have three treatments in early January to round out active treatment. I will see my oncologist on January 5 to go over labs and see what she she has to say for next steps. I celebrated 2 years on December 15 as a COVID long hauler (remember I still have parosmia!!) Yay for being chronically the illest.
TO THE LONG VERSION!
When were we taught or conditioned to believe that cancer mainly affects the “old?” I am getting sick of people telling me that I am “too young” to have cancer. It is a weird kind of pity when other cancer patients in the radiation waiting room size you up, their eyes getting bigger as they realize you do not look like the average patient. Everyone gets sad for you, as if your youth is a magical force field that has been interrupted and you’re just weirdly unlucky so they feel bad. I mean, wack genetics is bad luck but that isn’t the point. I don’t need the pity. It makes conversations awkward. Just say, “Damn that sucks.” But I also think even as we age it should not be something we accept as a consequence of getting old. Technically we are all constantly getting older and cancer can just pop up anytime. I am willing to bet cancer sucks at 53 years old, at 75 years old, and probably even 90 years old. Cancer fucking sucks all the time.
I can attest that once I was diagnosed, I was invited into a special cancer club where all the AYAs (adolescents and young adults) hung out and there are a fuck ton of us with cancer. I see fewer AYAs at the cancer center and most folks are probably 60+, but still. We are here and cancer doesn’t discriminate and young people are dying from cancer, too. Let’s work on dismantling that people are “too young” to get cancer and work to say, “Fuck cancer, nobody deserves this shit.” Rant over.
In other news, my last radiation treatment for my chest is TOMORROW! I will finally be at full glowing capacity and you potentially could use my armpit to heat up a chicken dinner. Radiation microwave joke? All jokes aside, the last week and a half of radiation has kind of started to suck. I have developed a tan that high school Madison would have been jealous of, except for the fact I am mismatched in color, itchy, tight, and peeling. Cancer is just SO glamorous! Fatigue has also set in. It isn’t the same fatigue as chemotherapy, but something more subtle. It feels like rainclouds creeping in for a summer thunderstorm. You see them in the distance and then suddenly it is just the whole sky. I am just waiting for some lightening at this point which will come in the form of something the radiologist called “blooming.”
“Blooming” is when you complete radiation treatment and suddenly your skin gets AWFUL, as if it has supercharged itself with all the radiation and erupts all at once into one big problem. This might look like extreme burning and irritation, skin peeling, and tanning. I am literally turning into cow leather. My flesh is so tender right now and I am in need of a long winter’s nap.
I wish radiation was over tomorrow forever, but I received my final three radiations schedule for January 3, 4, and 6. These radiations will take longer, at least 30 minutes, versus 10 minutes because they have to scan my spine twice and then administer the radiation for each section. (Before each treatment, a scan similar to a CT scan is done to ensure accuracy of treatment.) We will be radiating the L1 and T9 locations of my spine located in the lumbar and thoracic regions, respectively. I would recommend clicking on that link to see where exactly these sections are if you are not familiar with bone anatomy.
I mentioned last week I had a simulation scan for my spine and this time I didn’t get any new tattoos! Booooo! But I did lay on this weird bag like material that molded around my body when it was “inflated.” Honestly, I am not sure if it actually inflated or not, but it basically is like a little cocoon that I lay in and the radiation is administered above me and through my body to my spine. Fancy!
The treatment is a little different than my chest radiation. We will be using a radiotherapy called Stereotactic Body Radiation Therapy (SBRT). SBRT is a very precise form of radiation therapy that delivers high doses of radiation therapy in an incredibly targeted manner, in much higher doses. I found this excellent YouTube video that goes over SBRT that you can watch here. Oh and here is one more. It is a bit shorter but not nearly as in-depth. Watch it and come back. I will be waiting for you here.
Welcome back! Now that you are all educated up, you understand what is going to happen to me. These treatments will take place January 3, 4, and 6. I am not sure why they are not spacing me out every other day like they told me (and what you also heard from the videos) so I will have to ask that tomorrow when I see my non-assigned radiologist. Hopefully these will push me into NED (no evidence of disease) and I can be on my merry way. You can be told that you are NED but that doesn’t change my stage IV (potential) diagnosis (yet to be confirmed by my oncologist.) Once I am stage IV, I am that forever but can be NED for periods of time. Fascinating stuff.
Okay enough of the cancer bullshit. All I want for Christmas is to ring the damn radiation bell and my wish gets granted tomorrow. And I am going to ring it again when I finish SBRT because I am cool and the techs said I could do whatever I wanted.
The cancer center has been so festive and generous this season. I scored a free holiday wreath last week and today I took home a holiday egg ornament. I am not sure what it is or what it means or why we get eggs, but I am sure going to miss the daily freebies in the radiation section. I thought the free cheese was amazing in chemo but I sure do love these other goodies.
Of course these gifts are not a one-way street. I prepped 57 hot cocoa bombs this weekend with my mom to give to the rad staff and chemo nurses. At first I was just going to treat my rad techs, but I’ve gotten pretty chummy with the front desk gals. One even decided to call me “Madi.” Not sure why but it feels very nice to be liked and greeted so cheerfully every day. And then I was like well if the front desk gals get gifts, then my favorite rad nurses need one, too. But the rad nurses reminded me of the chemo nurses and I was like what the heck and before I knew it I had 57 people I needed to love on.
I need to stop making friends.
Anyway. Okay one more thought before I depart, I celebrated (not sure “celebrated” is the right term here…) two years as a COVID long hauler on December 15. Two years ago I got the OG COVID. I lost my smell and taste COMPLETELY for several months before my smell evolved into something evil: parosmia. This condition is basically a distortion of smell, making foods and liquids taste anything but how they should. At my worst, I could only eat eggs, pesto, plain pastas, potatoes, oatmeal, and a few fruits. Many foods tasted rancid, acidic (but not in a good way), rotten, chemically, or bland. They were flavors that I could barely explain to anyone unless they had the condition. Folks in the parosmia community just call it the “COVID smell.” It was emotionally and physically debilitating. It also was oddly taxing on relationships because I could not go out to eat and required a lot of accommodations.
At first, people were sympathetic and empathetic but it continued on and on and I could tell people thought I was lying the longer it dragged on. I wish I was not. Parosmia is pretty fucked up. And then I got cancer. I panicked up until my first chemo because I was worried I would not get the nutrition I needed to survive treatment. I was still eating a pretty repetitive diet and taking weird vitamins in hopes that something would shift in my condition. Up until my first chemo, I had not eaten meat in a year and a half. Then, after my first treatment, something shifted in me and I was able to consume meat. I had read that so many people experience shifts in smells and tastes with chemo for the worse that I was trying to emotionally prepare to regress once more with my condition. To my surprise, I actually improved!
I am not sure if the universe felt bad for me and threw me a bone or if chemo has special powers to help repair/rewire parosmia, but I was grateful that my parosmia improved. And I was even more grateful I got to keep my taste with chemo. It was a bright spot in a very dark nightmare.
Here I am, five months post chemotherapy and two years post infection and I am really happy that I can say I am 85% healed from parosmia. I still struggle with many vegetables, peanut butter, wine, coffee, chocolate, yogurt, sour cream, some cheeses, some meats, cereal, soda, and some other miscellaneous foods not tasting right. However, most of the foods I love are tasting pretty normal these days. Sometimes I struggle to identify flavors and harmonies in food when too many flavor experiences are present but I get to eat without fear now.
Small wins.
Today’s song lyrics of the day are brought to you by Bright Eyes.
“I’m not afraid of the future
Have to suffer and repeat
I tend to agree
What happens will be
Pain of my own making
Cut short by eternity
madisonhatescancer 