Here I was, cruising along in the middle of week five. The nurse practitioner said I was doing “awesome” and that she was sending me “to the head of the class.” I found out that my cancer was shrinking on my tongue, and they reduced the size of the field for the highest-powered radiation. My weight has been steady and I could eat, maybe not easily, but I could eat. That’s all wonderful news, right?
Well, that was 24 hours ago. Now, all of a sudden, everything is hard. Bam! The skin on my neck is on fire and I’m having trouble eating. Before my treatment started, I made a bunch of soups, planning ahead for right now. A friend gave us some tasty split pea soup for our freezer. We have every kind of Boost and Ensure on the market in our pantry. So we’ve got lots of liquid food stockpiled for when this time came. For my lunch today, I heated up some soup and made a grilled cheese sandwich, thinking I could just dunk it in the soup and get by. A few days ago, that would’ve been fine. Problem is, I wasn’t able to eat a single bite of the soup. The grilled cheese took about 45 minutes to eat. In response to Suzy’s simple question about what was wrong, I had no answer. When I put the soup in my mouth, I was unable to swallow it, not from pain but from… I’m not sure what. It felt like a small spoonful filled my mouth and was thick like honey or that my mouth was full of cotton.
All of a sudden, this has gotten hard, really hard (already said that, huh?). I’ve read books and blogs describing this, and I’ve talked to other patients, but I didn’t expect it to happen overnight. I’m quite scared of what this means. More than one of the other patients I see in the waiting room has lost 10 pounds in a week. One of them is having a feeding tube put in today. Will I end up on a feeding tube? A feeding tube is not Plan A, or even Plan B or Plan C. According to the nutritionist, it’s Plan Z. I’m really worried, and I can see the worry on Suzy’s face when I can’t eat.
I was also told yesterday that radiation continues to work and cause side effects for two to four weeks after treatment ends. Oh, f**k!
I would love to have a string of average days. Not real-world average days, or even pandemic average days (although right now even a few of those would be nice), but just no difficulty cancer days. It’s easy to overreact and freak out on this roller coaster. And not the fun kind like at Disneyland. The runaway kind. There must have been a movie made where a roller coaster takes control and won’t let you off. I could be the star of that movie.
It’s Thursday morning and I’m afraid to eat. What if I can’t eat again!?! I’m chickening out on testing my chewing and eating ability today. Suzy is making me a 955 calorie, 77 grams of protein very DRINKABLE smoothie goodness. Team Fleury to the rescue. I’ll kick the can down the road on chewing for a couple of hours. Or as it turns out, until tomorrow.
So the fun continues. I went to the doctor and in 2 days, I lost 4 pounds. It turns out I have thrush, usually found in babies (is that a hint?). Turns out in chemo/radiation patients it’s pretty common; it causes difficulty eating, a sensation of cotton in your mouth. Hopefully, the medication will help and I can get back on track. As far as my neck, there’s really not much I can do. It’s just going to be sunburn on top of sunburn on top of sunburn for a while longer… then two to four weeks after that, evidently. I can put lidocaine in some skin lotion and get some temporary relief, but that’s about it.
But I can’t let all of that overshadow the good news — the cancer on my tongue has significantly shrunk. I can’t tell you what a relief that is. One fear I had was I would go through all this, and it wouldn’t work. Even though that fear is still there, at least now the fear is slightly smaller.
I realize that I’m being a bit reactive, but while this cancer thing is 90% physical, the other half is mental, to paraphrase that still great Yankee philosopher, Yogi Berra. It’s really hard to deal with these ups and downs. I decided to let you see my human frailties, rather than go back and clean what I already wrote. This is all so much harder than I thought it would be, a common theme as you can tell.
This is the end of week five, 24 radiation treatments complete, 9 to go. Five chemos done, one to go.
The only appointment I had today (Friday) was radiation. It was tough, as all I could think of was the last day, getting off that table and walking away with that mask. Over and over, I projected myself into that day, Christmas Eve. I’m not sure how I will not break down that day. Probably start sobbing the second they pull the mask off.
But for now, I am ready for the weekend!
Cancer in the time of corona 
Whew, talk about a ringer! Weight loss? Gift horse? I lost 16 pounds with my picc line meds but sadly, they found me again. The END of week 5 sounds pretty good. It signifies the passing of time leading you quickly to the finish line of health. Yay for shrinkage! Hugs!
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We were excited he’s been doing so well until these last couple of days – we had heard that Week 4 would be where it got hard, and that came and went without too much trouble. It seems he’s still doing way better than average, side-effect wise. They’re pretty specific on how many pounds he can lose before they want him to have the feeding tube, and it’s really not a whole lot of leeway, all things considered (it’s 10% of his beginning weight). As the doctor put it Thursday, those 4 pounds are like a warning light at this point. So on to Week 6 and a bunch of my 1000-calorie smoothies!
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Steve – sorry it’s become even harder but 5 weeks out of 7 is pretty significant.
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It is good to be nearing the end. Not sure what that will be like.
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Thanks for sharing your innermost thoughts..Woohoo on the tumor shrinking – the end of the tunnel is getting closer! Positive thoughts and hugs!
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Thanks Donna for all your support
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Oh my Steve. Such a mixed bag of terrible and great (cancer-shrinking). Hang in there buddy, day by day you can get to the finish line. When you need to gain some weight back, give me a call, I’m a professional in those matters. You’ll get this buddy. Breathe In Zamo, breathe out bad stuff.
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You’re getting so close to the end–and everything’s working! Love and positive thoughts your way from Team Germany. You can do this
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Thanks Mike. Think of your support often.
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Hi Suzy, can you give the recipe for the 955 calorie, 77 grams of protein very DRINKABLE smoothie, or the 1000 calorie? I would like to get prepared when my turn comes. Sorry to be asking so many questions, this blog is really helping me. Thank you and wishing you both the best for the coming week, you are an inspiration in this strange new world!
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No apologies needed for asking questions! We’ve learned a lot from others, so we’re glad to share what is working for us.
Some notes —
Steve has been having trouble with the thickness of our original smoothie, so I’ve been adding water to thin it out (unfortunately that adds volume, but at least he can swallow it easier. We haven’t figured out how to pack everything into a smaller volume, so he ends up with 2 big glasses of smoothie).
Protein powder thickens it up, so we don’t always add it.
Steve’s nutritionist suggested adding heavy cream for calories, but if you blend it in the blender, it gets thicker, so we just stir it in by hand at the end. She also suggested adding olive oil to add calories, but we haven’t tried that yet.
Lately, instead of milk, we’ve been using a nutrition drink as the base. Boost Very High Calorie for when he needs calories, or Core Power Elite for when he needs protein (Core Power comes in chocolate and vanilla – they’re both really tasty. But they’re a larger size, so volume becomes the problem).
The nutritionist said that adding salt may enhance the flavors, since Steve’s taste buds aren’t working like they used to.
Here’s the high-calorie smoothie. The calorie count may have changed, since we’ve been adjusting the ingredients a bit. This makes 2 big glasses of smoothie.
Team Fleury Peanut Butter and Banana Smoothie:
1/2 cup whole milk (or a carton of Boost Very High Calorie Vanilla – 8 ounces/237 ml, or a bottle of Core Power Elite, chocolate or vanilla – 14 ounces/414 ml)
1 frozen banana
1/4 cup peanut butter
1/2 cup high-fat yogurt (5% fat)
15 grams protein powder (more or less, sometimes none)
2 packs Stevia sweetener or a tablespoon of honey or sugar
a pinch of salt
2 tablespoons of heavy cream (stir in by hand at the end)
cold water to thin it out enough to drink easily
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Thank you so much Suzy, I’ll try the smoothie tomorrow. I already lost 1.5Kg and today was my 12th radio session, so a lot to eat:)
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Reach out anytime. The smoothies are key for me.
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Damn Steve, this sounds SO hard!
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It’s a grind, but today the nurse for my Radiation Oncologist, during a consult said I am doing PHENOMENAL. Can’t imagine how hard it would if I were doing bad. I think a lot of patients get hooked on checking the internet and chosing alternate strategies. If they tell me to do it, I do it.
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Hi Steve and Suzy, I had to go back to this post because now is my Bam day, more or less at the same time as you, I have another 8 sessions to go. I am starting to feel much more and eating was much harder. Did you have pain? I was prescribed morphine but I did not take it yet. Hope your recovery is now going faster!
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I never had a lot of pain. My throat was pretty sore, but I never got any sores in my mouth. For me it was just this over night thing where I couldn’t eat. I never1 had morphine, but was prescribed Oxycodone. I used it mainly to help me sleep because my neck was so painful.
Hang in there Carla, and take it a day at a time. Eight more treatment days, and then you will begin recovery. Keep in touch.
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Thanks Steve! I was almost wondering if it is ok not to have so much pain:) hope I’ll be you!
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