Going Home
Bad news first: I have the itchy, dreaded chemo/radiation rash.
Good news: I’m going home tomorrow instead of next week because one of my follow-up appointments was changed.
I haven’t seen my own house in 71 days!
Emily Live on Facebook
On April 12, following my last radiation treatment, I went live on Facebook so that everyone who had been supporting me could watch me ring the final treatment bell in the radiation oncology waiting room at Siteman Cancer Center.
It was freaking emotional, man. The video ends abruptly because I was flooded with emotions and just started crying.
The video of this celebration is public on the Facebook page, if you’d like to retroactively celebrate the occasion with me.
Emily’s Last Radiation Treatment Celebration
Post-bell group photo opp with Dan, my parents, brother, and SIL
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The Last Brain Tumor Radiation Treatment
Brain tumor radiation treatment number 28 of 28!!! I’m in the waiting room now at Siteman Cancer Center’s radiation oncology department, and it will probably be another 30-ish minutes before I ring that final treatment bell.
Some people ring the bell with just a couple of people standing by, and some bring their entire extended families. It’s a pretty happy occasion, for the most part, because coming to the hospital every weekday for weeks at a time is grueling and being done with that is a weight off. Not just for patients, but for caregivers too.
My parents, brother, and sister-in-law have come to the hospital with Dan and I to celebrate today.
I will be broadcasting the event on Facebook Live for people who want to join in but can’t physically be in St. Louis right now. (Which is almost everyone.)
Please forgive me if I get a little emotional. I’ve been listening to other people ring the bell for weeks now when they reach their final treatment, and it always makes me well up a little. So I can only imagine how it’s going to hit me when it’s actually—finally—my turn.
Radiation therapy has been hard, and probably a little harder than it would be otherwise because I’m doing it concurrently with low-dose chemo. (It’s supposed to make the radiation work better.) So I’ve got side effects coming out of my…pores. Yeah, pores. And all of that is on top of the fact that I’m still recovering from freaking brain surgery and lying down for radiation means lying down ON. MY. SURGICAL. SCAR. Yes, they put a cushion under my head, but I’ll be honest—the cushion does absolutely nothing for me.
UPDATE: Here’s the Facebook Live archive of my big day. The video ends kind of abruptly because I start crying. It’s an emotional time. What can I say?
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Last Radiation Eve
Our commute time to the hospital tomorrow will be 1 minute…and that’s just because I’m slow getting around.
Dan booked a room at the Parkway Hotel across the street from the Siteman Cancer Center so we can sleep in, have Panera for breakfast (also just across the street), and make tomorrow a total party.
Radiation Treatment 27
Twenty-freakin’-seven of twenty-freakin-eight.
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What a Difference a Brain Tumor Makes
Getting nostalgic as I near the end of radiation. These pictures fascinate me. I don’t look like the same person and I don’t feel like either look like me! First one dated 2/13, the day I was discharged from the hospital and 4 days post-tumor biopsy. Second photo from 3/6, my first day of radiation therapy.
Radiation Hair Loss
Radiation causes hair loss at the site of treatment. Can you tell where they’re zapping me?
“Radiotherapy to the brain can cause hair loss or thinning. If you are having treatment to a particular part of the head, your hair usually falls out in that area. You might also have some hair loss on the opposite side of the head, where the radiotherapy beams pass through.” —Cancer Research UK
Radiation to the scalp can cause loss of hair in the treated area. The hair loss will occur about two weeks after treatment has started. Hair will usually begin to grow again 2 to 3 months after treatment is over. Some patients may find that the new hair growth is thinner or more sparse than before and the texture or color may have changed. —Stony Brook Cancer Center
The scar is healed from the craniotomy, but the radiation treatment is leaving me with burning and itchy skin. I know it’s temporary, but it really is uncomfortable. The skin is very dry, so a nurse gave me some lotion to apply.
Radiation will be over soon enough, though, and I can’t wait. The skin should heal after a bit and the hair will probably grow back.
Doughnuts from Glazy Squares
Woke up hungry this morning!
Me: Dan, my brain tumor says it will shrink if you feed it doughnuts.
Best husband in the world:
Chemo Makes Stuff Taste Bad
I’m down to oatmeal, bananas, yogurt, & pretzels now. The nausea. Dear god, the nausea.
I’m also only getting out of bed now to commute to treatments. I might just have 4 treatments left, but I seem to have saved the absolute worst for last.
I held my chemo pills in my hands for 10 minutes and cried this morning before I got the gumption to actually swallow them.
Things were going pretty well to this point. I thought I was going to get off easy.
About That Thrush
If you’re not familiar with thrush and its treatment, gather ’round. I’m going to make you feel so sorry for me.
Thrush is this nasty white overgrowth of evil incarnate (fungus) that takes over the tissue in your mouth. It is a frequent complication for patients undergoing radiation. It also can show up if you’re given really strong antibiotics (like I was when I had my tonsils out many moons ago).
I was really hoping to avoid it, because I honestly just feel like a brain tumor is enough right now.
All during treatments I have brushed dilligently, eaten my yogurt, used special dry-mouth toothpaste and lozenges…. Sacrificed a couple of unicorns.
Still got it.
It makes things taste horrible. And the medicine? It’s an oral solution that tastes like banana-flavored milk with red pepper flakes. Not only do you have to swish the stuff, but you have to *swallow* what you swish.
It gives me heartburn. And stomach cramps. And it makes food taste so horrible. Even my beige food tastes like it’s coated in synthetic butter and sour cheese right now.