Chemocation

I am pleased to share with you that I am on vacation. It’s not a “Wooooo!! Spring break! Cancun! No parents!” kind of vacation. It is the vacation your doctor’s give you from chemo when your quality of life is in question.

I went to the doctor last Friday accompanied by the lovely Sarah. The beginning of these appointments after they take your weight and blood pressure are to assess and “grade” each one of the side effects that are having an impact on your life. As I mentioned in my previous post there are quite a few side effects that are making everyday life a bit challenging and unpleasant. You know how you feel when you have the stomach bug? That’s most days for me. My stomach is torn up, my appetite isn’t great, my hands and feet are swollen, I’m nauseated to the point of vomiting at least once per week, and I have an invasion of mouth sores. Fatigue goes without saying but aren’t we all?

Everytime you report a side effect to your medical team they need to know in full detail the frequency and severity of what you are experiencing. They use your feedback to put it in a nice little category and “grade” your side effect based on an established criteria. The trial has a protocol for EVERYTHING. Grade 1 nausea? Do this. Grade 2 mouth sores? Do this. Usually the “do this” part is some sort of pill. The tricky part is that each pill comes with a price. For example, I took myself off of the pill prescribed for skin rash because it was intensifying my stomach issues. It’s like this never ending cycle of pill popping to keep up. I don’t want to be taking 20 pills a day to feel partially normal. My liver is already overworked and underpaid.

I expressed this to a few members of the medical team and I was pleased to see just how responsive they were to my concerns. I asked the NP how long they projected me to realistically be on these drugs and the answer was “ideally, indefinitely”. It was a punch in the gut to hear the word “indefinitely” as I am only 12 weeks in and feeling so out of sorts and worn down. It was at that point that I could no longer hold back my tears (the NP even started to tear up as well). They really empathized with me and the toll the trial is taking on me both physically and emotionally. We had a very open and honest dialogue about the importance of quality of life. I told them that if they foresee me on this drug indefinitely, this is not sustainable as it is now. It’s just no way to live.

They really listened. They didn’t dismiss my concerns and it was evident that they wanted me to feel well and in control. This conversation reinforced that they view me as a person first and a research participant second.
With everything on the table, we made a deal. They are giving me about a week off from the MEK inhibitor. I’m on a really high dose of that drug and it’s the culprit when it comes to the majority of the side effects I am experiencing. I am still required to take the other pill which is either a 2nd drug or a placebo. Once the mouth sores clear up (good riddance) I will return to MGH in a week or so and they will do some blood work and dispense the MEK inhibitor to me at the same dosage. We will check in toward the end of September following my next CT Scan. After that, at my request, we can discuss reducing my dosage.

My hope is that the cancer will still stabilize (or die a painful death) being on the drug longterm but the side effects will minimize once I am on a less intense dosage. I told them that I want to dose reduce (badly) but I do not want to compromise my progress. They assured me that in trials it is very normal to start at the highest dosage and eventually dose reduce.

A few people asked me what I’m going to do this week since I’m off drug. The answer is eat ice cream. I am going to eat ice cream without living in fear of a stomach revolt. Flavor TBD.

Oh and fun fact- I kicked off my chemocation by going to the Providence Roller Derby (if you haven’t seen this before or don’t know what it is, google it. I can assure you that it’s intense and these women are not to be messed with). To my surprise Michelle Kwan was there as a celebrity guest (um, what?). At the beginning of half time she walked by my friends and said “hi” to us. I was oddly starstruck and just smiled back at her like a goon without saying a word. I turned around at my friend Erin and she was also sporting a goon smile. So basically we looked like idiots. I would chalk it up to a win.

My second and final win of the weekend is that I had enough energy today to clean my entire apartment top to bottom, do 2 loads of laundry, and run to Savers to donate some clothes and household items. It’s amazing what you can accomplish when you aren’t slowly and systematically poisoning yourself. Am I right?

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MEK Trial: Week 11

Whenever there are sizeable lapses in time between blog posts I can always count on Stacey Goldman to give me a gentle kick in the pants. As of late I have been doing more of my writing offline in a beautiful notebook that I purchased on downtown Providence at Craftland .

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As an aside I’m totally in love with this little gift shop. It highlights the work of local artists, captures the unique spirit of Providence, and generally has some fun items that remind me why I love living in this strange little city. I took a week off from work recently to enjoy a bit of the summer away from my office. One day I walked downtown, scooped up the journal as seen above, picked a spot with a view on the new Providence G Roofdeck and put my pen to paper. It was beautifully peaceful. There is something liberating about writing, without censoring yourself, while sipping a cold (non-boozy) drink on a roofdeck, in the middle of what should be a work day. If I could have added a fuzzy bathrobe and blankie to that equation I would have been set for hours.

My new writing spot is establishing in my spare room. Little by little I am turning this room into a happy little zen den where I can snuggle up with a book or my journal and stare out the window at the scenery (in my neighborhood the scenery typically includes a shirtless man yelling nonsense, a handful of hipsters, a tree and a chinese restaurant. If you catch the breeze just right, you get the tantalizing aroma of egg rolls). My parents have graciously given me a big, brown, squishy recliner that was in our house in Torrington. In fact, it’s the same recliner that Dad moved into my bedroom while I was recovering from my initial surgery. For a few months it felt like my life only existed between my bed and this chair.

Okay readers, I know you didn’t log on to read about a brown chair, you want to know the extent to which I am crushing cancer. I haven’t had a doctor’s appointment since I last posted so I have no test results to share. I can; however, tell you about the wonderful world of side effects.

1.) Tummy Troubles: As I have complained about time and time again, this chemo is super harsh on your stomach. I will spare you the details but I have a “sad tummy” almost daily. I was finally prescribed something a bit stronger and it certainly helps. What I did NOT realize until this morning at my work retreat is that it makes you kind of drowsy. I wouldn’t say that I would be considered “fall asleep at the wheel sleepy” but I can say that I wasn’t busting at the seems with energy. I felt foggy at best. It wasn’t until I consulted the bottle’s label and saw “May cause drowsiness. Use caution when operating a vehicle or heavy machinery”. Whoops.

In a nutshell it really sucks. It has limited some of my activities and social engagements. It is much better than feeling bound up but again, it is limiting and embarrassing aaaaaaand I hate it.

The nausea and vomiting occurs less frequently than the stomach trouble but I’m still averaging one solid puke a week. Truth be told, I’d prefer the vomiting. Is that weird?

2.) Mouth Sores: It is typical for mouth sores to occur on this treatment. Actually, it is fairly common with traditional chemo as well. I was very fortunate to dodge them the first time but this time I was not so lucky. I have tried many remedies to help relieve the pain and irritation of the sores that have sprung up about my gums and on/under my tongue. My mom came taught me about one remedy that has provided some temporary relief. Ice cubes made of throat coat tea. It is made of slippery elm and licorice/marshmallow root. It tastes delicious and calms the irritation while you suck on the ice cube for a bit. Sometimes I will wake up in the middle of the night from the discomfort from the sores so I will chomp down an ice cube and go back to bed. That will typically suffice until morning.

My mom, my dentist, and Sheila had also recommended “Magic Mouthwash” a prescription mouthwash. The lovely people at MGH wrote me the script at my request. It is a compound that consists of an antihistamine, antacid, and anesthetic. Basically it numbs the crap out of your entire mouth. I honestly am unclear on how or if it is helping to heal the sores but at the very least it gives me a few pain free minutes each morning and evening.

3.) Fatigue: I really struggle to keep up with my preferred pace. I’m completely wiped out after work and find myself only making it to the gym about once per week. In an effort to maintain “normalcy” I foolishly push my physical limits when my stomach is feeling well. For example, on the Cape last weekend it was a beautiful day and I wanted to go for a bike ride. Cory and I rode 13.8 miles which felt great at the a time. Needless to say I was posted up on the couch after work and in bed early every day for the next three days. I should stick to yoga.

I need to do a better job of not only listening to my body, but respecting that it has its limits and not feel down for needing more rest. I mean, I slowly poison myself a little bit every day in an effort to keep on truckin’. I guess I can cut myself some slack.

4.) Diet: Eating has become daunting for a few reasons. First, my mouth sores are irritated by almost anything that touches them. Therefore, anything remotely acidic or spicy is a big huge no-no. Additionally as I discussed in the “tummy troubles” section, my stomach is very sensitive at the moment so the cancer fighting foods that I would typically try to incorporate into my diet (ex: leafy greens, cruciferous veggies, berries, etc.) digest about as well as Shaq’s acting career.

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After a lot of frustration I finally went to see Lauren at WIH. Lauren is a registered dietitian specializing in oncology nutrition. We discussed what I was eating (and not eating) and discussed realistic meal options that took into account: balanced nutrition (food as medicine), a sensitive stomach, my favorites and convenience. Lauren totally understood that I don’t have the endurance or energy to work 8 hours and then come home to prepare a feast. I was really pleased with her recommendations and so far my meals prepared at home have been a lot easier on my stomach but satisfying.

What becomes stressful is eating out. When I am preparing food for myself I can be more intentional about what I am putting into my body to ensure that it doesn’t irritate my mouth and stomach. At a restaurant, you’re at the mercy of what they have. If it’s a good restaurant, they sure as hell don’t specialize in light and bland fare. What is even more distressing is that I LOVE food. I thoroughly enjoy the experience of a meal out. With dietary restrictions, the fun is sucked out of it. This experience becomes especially stressful when you are dining with acquaintances that don’t know you well. You don’t want to be the person that eats a piece of bread and orders a side of rice as an entree.

So that’s where I’m at.

I have my next doctor’s appointment in Boston this coming Friday. Aside from blood work and an EKG I’m not sure what they have planned for me. I’m mentally preparing for a long day just in case.

That is all for now. I hope everyone is enjoying the final weeks of summer!