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…


6 thoughts on “TREAT YO’ SELF: Being your own advocate

  1. Great post! My treatment was at MGH as well and they really made me feel like I was the only patient in the world….my doctor even sent me for a second opinion I didn’t ask for, at another hospital, just to be doubly sure I felt informed and comfortable. I’m glad to hear they are supportive and receptive, though not surprised!

    • I’m so glad to hear that you had a similar experience! I am happy to go back to my hospital in Providence as I am most comfortable there but MGH was fantastic.

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