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 .
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.
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!
It is juggling act to be able to keep on truckin’ as you say. The nutritionist sounds like a real help. I used to order the Magic Mouthwash a lot for my rehab patients with thrush or sores. They seemed to get relief with it. I’m so happy that you took a vacation. To have the time away from work without it being related to your treatments must have felt wonderful. You go girl!
Love you Jess! Your’e doing great. “Don’t Stop thinking about Tomorrow.”..as the song says.
Hmm..I’ll send you a message when I get home. I have some stuff that Cornell sent me home with. My initial chemo I had some killer mouth sores, but somehow, I got through the entirety of my transplant without dealing with any, so I kinda forget what I used.
Magic mouth wash was part of it, but I generally used it immediately before eating. The other one I used every couple of hours, and it was less for pain relief, and more for the healing….
Cherish your, “zen den” and I wish you all the best with your daily living!
So much LOOOOOOOOVVVVEEEEEEE. I might try those Ice cubes they are genius.
LOOOOOOVE you too Nate! Those ice cubes really are clutch.
So happy a feel RD was able to help you! LOVE your comment that food is medicine:) So impressed with your strength, continuing to think of you.