TREAT YO’ SELF: Being your own advocate

I feel compelled to follow up on my last entry Questioning Quality of Life because today I received a phone call that put me at ease. Actually, being put at ease sounds too calm, I was elated.

As I had discussed in my previous entry I sent an email to my medical team in Boston and in so many far more polite and eloquent words said: I’m sick ALWAYS, this sucks, dose reduction or bust (mic drop).

The MGH team was quickly responsive and not only did they listen, they made it clear that they empathized with me. Tina, one of my biggest cheerleaders on the team, told me that it made no sense to push me through three more weeks of feeling atrocious everyday until the next appointment. They kindly granted me a three- week chemocation. You heard me. THREE WEEKS. 

The plan is to reconvene in Boston on April 7th, a week after my CT scan, and strategize moving forward. Either way, I’m being granted a dose reduction on one or both drugs.

This phone conversation was incredibly important for another reason. I, for the first time, revealed to her that I will be consulting with my oncologist in Providence to discuss alternative treatment plans as I am strongly considering leaving this trial and switching gears. It’s kind of like when you know you’re going to break up with someone and have talked to all of your friends about it but haven’t pulled the trigger because he’s SO nice. It’s nerve-wracking because you don’t want to ruffle feathers but you ultimately need to do what is best for you. (Cory this is NOT a subtle hint that we’re breaking up. You’re stuck with me.)

Again it was a big deal because this is the first time I have had the confidence to say this to the MGH folks. Don’t get me wrong, they are incredibly kind and supportive. They have my best interests at heart and no part of me thought that they bully me into staying with this treatment plan. That being said I half expected them to respond with some persuasive evidence to stick it out. Instead Tina’s response is what every patient wants and needs to hear from their healthcare provider: “your health and happiness is what is most important to us”. She expressed that it was a good idea to explore all possibilities. I left that conversation not just thinking but wholeheartedly knowing that my quality of life is just as important to them as it is to me. It’s not about the drug company, it’s not about money, it’s about patient well-being. Period.

Sometimes it is intimidating to question your doctors. I mean, they’re doctors right? I sure as hell didn’t go to medical school. But your intuition is powerful and important and should not be ignored. You can only “suck it up” so many times before your energy and spirit is depleted and you are left feeling utterly drained. If something is no longer right for you, it is perfectly acceptable to say: “Can we discuss alternatives?”. Frankly, the three week chemocation was just a bonus. What made me feel the best today was advocating for myself openly and honestly, and receiving feedback that validated my experience as a patient  person.

So what now? I am scheming all of the ways I can possibly maximize this three week chemocation. First priority, I am going to eat (and not throw up) SO many amazing foods.

Ultimately, the next three weeks will be very Parks and Rec inspired…

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Questioning Quality of Life

I haven’t written since the end of February…yikes.

Where we left off was with my unhappy guts. I had another consult with the gastroenterologist and she decided that although the x-ray showed no sign of lingering obstruction, it was not safe to perform a colonoscopy. The team at Mass General seemed satisfied with her professional opinion and it was agreed that we would forget about it for now.

Coming down the pike is a CT scan on April 1st. On April 7th my parents and I will be heading to Boston to find out my scan results and talk about my treatment moving forward. Regardless of what the scan results are, good, bad, or unchanged, I am requesting my final dose reduction. I am allowed one more and I’m running with it.

Since the last dose reduction nothing has changed. The side effects are nagging and constant. I have bottles upon bottles of medications to combat the side effects of this treatment and I am just left swimming in pills.By the standards of the drug company the side effects are “tolerable” but we all have our limits. This is not how I want to care for myself. Each day has been a struggle and I’m worn out.

I actually just sent an email to the medical team at MGH expressing my concerns and requested a dose reduction for consideration. The principal investigator of the study emailed me back 12 minutes later (on a Sunday night no less, that’s commitment!) and he was understanding of my concerns. He said that there is no sense pushing through this dosage with a crummy quality of life and that he would speak to the team and get back to me.

I am also setting up a consult with my homegirl Dr. Robison in Providence to discuss alternative options should the time come that I choose this study is no longer right for me. She also emailed me back right away (again, on a weekend!) and kindly agreed to meet with me after my CT scan to discuss other kinds of treatments that might be a little easier on me.

Quality of life is far too important to ignore. I do not know what my future holds with this treatment but I am determined to reignite the fire I had within me when this all started in 2012.

To start, I’ve decided to adopt The Unbreakable Kimmy Schmidt’s quirky theme song as my own:

Thank you Netflix binge and my hero, Tina Fey, for this delicious find.

Lastly, please send some positive and healing vibes to a friend of mine facing a recent cancer recurrence. Her name is Elyse, she’s a ball of excitement, and she is a cancer fighting BEAST. I had the pleasure of meeting her last April at the Stupid Cancer Conference in Vegas (and 24 hours later held her hand as she fearlessly got her first tattoo at the Hard Rock). She is all about pumping up those around her so it’s time for her to receive the same positive energy. #WorkItOut Elyse!

tattoo
elyse

(Photo Credits: Dan Shapiro)