Saturday, July 19, 2014

Bring on the popsicles, mackerel, and protein powder

Oral mucositis and popsicles

My taste buds started dying three days ago in a blaze of oral mucositis. When I felt like something was dying in my mouth, I was right. My mouth was dying in my mouth. Taste buds turn over every 10-14 days, so they were on the chemo executioner's list next, I guess.

40% of chemo patients get this. Higher dose chemo makes it more likely. Because I can tolerate solid food and have no ulcers, I'm only Grade 1 on the WHO scale at this time. That's mild. Apparently up to 10% of patients end up at Grade 3 or higher - no solid food!!! That is severe! It could be worse, and I'm so happy it's not. I'm not going to rush out and reach for a hard salty pretzel, but I ate a banana without pain, so that's good.

Sucking on ice chips 30 minutes prior and during the infusion could potentially prevent this. In medical lingo, that's "ice-chip cryotherapy prophylaxis." (And you thought legalese was bad.) It hasn't been studied in my type of chemo specifically, but close enough for me. This page talks about a study in which ice-chip cryotherapy significantly reduced the incidence of severe oral mucositis. Only 14% in the ice-chip group got severe oral mucositis, compared to 74% in the control group. I've had a hankering for popsicles, so I think I will be giving this a try. I really nerded out over this article, which I thought was great. There's also a study that suggests rhodiola algida could help, but I've already been admonished about my previous level of supplement-taking, so I don't think I'll even ask about a new herb. I'm pretty sure I can get away with ice.

The bizarre excessive salivation that showed up around the same time is apparently an unrelated issue; that is actually symptomatic of nausea and at the time, we thought the Zofran was making me bloated because the ovary hyperstimulation nonsense hadn't been figured out yet, so I had no anti nausea meds there for a few days. Oh well, past is past.

Dysgeusia or Alien Taste Buds

Mucositis has been linked to dysgeusia (distorted taste) and hypogeusia
(decreased taste). More medical lingo for you. I definitely have distorted taste. Between 44-76% of chemo patients get one or the other, according to this article. Glutathione helps if you're not on a taxane-based regimine, which I am (docetaxol), so basically I have nothing.

Of the cocktail I'm on, this article suggests carboplatin is the likely culprit behind my weird taste sensations. Supposedly everything becomes metallic and bitter. Makes sense since Carboplatin is made from platinum. I become ever closer to becoming a female super-hero, perhaps a female Wolverine (Wolverine gets his start when his bones are replaced with adamantium, maybe mine begins with platinum. Or maybe it was the titanium clip they left in my breast as a biopsy marker.)

Wolverine's daughter, Wild Thing
Patient-centered books talk about how to improve taste when you have chemo, like a little bit of salt or sugar will make everything lovely. The exception to this is The Cancer-Fighting Kitchen, which is really good and a must-have for any cancer patient and was a gift from a former colleague and lovely friend who sent it to me before I even knew I needed it. Let me be clear, I do not have just less taste buds, I have ALIEN taste buds. I blame carboplatin. Good thing carboplatin has a reputation for melting away tumors. I guess it can stay. The side effect dysgeusia is really trippy though.

Water tastes completely foul. Cranberry juice tastes kind of like water. A banana feels like a banana should feel, but it actually tastes more like a mushroom. Red meat tastes horrible. Peanut butter tastes like paste. Chocolate was a disappointment. Bread tastes happily like bread. Cucumber tastes kind of right, but not really. I haven't tried everything yet, but I do feel like a toddler learning about solid foods for the first time.

Josh and I went to a Japanese restaurant the other night. They had a bunch of specials on strange vegetables, so I ordered 7 small dishes as my dinner. I had no expectation about what they would taste like, which we thought would help. Japanese gobo was not so bad; eggplant tasted like cat vomit smells. Mackerel with lemon was delicious. Kind of like an unspecified pie, with a crispy flaky sweetness I just couldn't place. It really is that weird.

Today I went and cheered on the CrossFit Balance Capital Affiliate League team, the "Balance Beams." It was amazing to see so many friends, coaches and clients again. (It was a little hard on my self-control not to want to do a work out. I deliberately wore flip flops in an attempt to self-regulate.) One of the girls left me a gift bag that had some protein powder muffins. I tried them tonight - AMAZING. Unbelievably amazing. I cried I was so happy to eat something that tasted so good. I am getting the recipe and making them ALL THE TIME. Also, I was gifted a tub of the Vanilla About Time protein powder by another friend, which I tried later in the evening, and it is DELICIOUS. If all I eat are popsicles, mackerel, and protein powder for the next 16 weeks, I am going to be one lean, cancer-fighting machine!

Today's theme song, Kelly Clarkson's Stronger. I am so glad to have the past week behind me. There were many times when I really thought I wasn't going to to make it, but here I am anyway. I'm feeling better. I am supported by family and friends all over the world and right here in my city who love me, want the best for me, are cheering me on, and are praying for my health. In spite of cancer, I feel so blessed. Perhaps because of cancer, I can see how truly blessed I have always been. To everybody I saw today or in the past few weeks who gave me a hug or a high five or sent me a text or even sent a feel-good thought my way, THANK YOU. It really does help.

What doesn't kill you makes you STRONGER!


3 comments:

  1. Your descriptions of how food tastes is making me want to hurl right with you. So sad about chocolate (top of my food pyramid) but happy bread is still bread. I wonder if you could put mackerel in a blender and then freeze them into popsicles? If it doesn't kill you, you'll be STRONGER! We are all cheering for you.

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  2. I burst out laughing.when I read this... mackerel popsicles!

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  3. I'm sure you've probably found this in your readings, but if it gets any worse -- baby food! The texture is gentle on both your palate and your stomach, and some of the flavors aren't too bad. Also, the fruit ones often have a decent amount of sugar, which can serve as a little energy boost :)

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