Tag Archives: Mass General Hospital

Questioning Quality of Life

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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)

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Twas the Night Before Chemo: Take 2

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After much anticipation and a few trips back and forth to Boston tomorrow is the ACTUAL day that I will start my chemo trial. The format of the day, as explained to me, should be pretty painless (if you don’t count the needle accessing my chest port).

Arrive at 10am –> vitals & blood draw –> meet Dr. Birrer at 11am –> Take first dose of the study drug –> wait an hour –> EKG –> Home.  Hopefully it will not be much more complicated than that. I can handle that.

It is interesting to think about where I was on December 30, 2012. The night before I started chemo for the first time. I was a ball of nerves, sleepless, emotional, and hopped up on steroids. I imagined that my hair would fall out immediately and that the drugs would tear my flesh apart like an acid burn as it coursed through my veins. I had many expectations and fears that did not come to be. On the flip side I encountered side effects that I did not necessarily expect. Chemotherapy is such a mixed bag.

This time around I am going into the trial with an open mind. I am turning down the volume on the apprehension and anxiety that initially hit me when posed with this opportunity.  I am deliberately using the word opportunity because I have come to accept that this is a gift. I am  being offered the chance to try something completely new that has the potential to revolutionize how women with Ovarian Cancer are treated.

Today, I am okay and quite thankful for it.