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!
(Photo Credits: Dan Shapiro)
Hi Jess! Just caught your email before going to bed. I was thinking about you on Friday and wondering about the colonoscopy; really glad you did not have to have it!
I am SO sorry that you are still struggling with such bad side effects – and I am sure you are doing the right thing with a dose reduction. You are so courageous, I just wish life was not putting you in the position to have to be. As we both know, you just do the best you can and everyone thinks you are a hero! But actually you are so graceful and honest that it is humbling to read your posts.
Chip is going away skiing from Thursday – Sunday next week. Would you like to come to the house for supper with me? If not I can come to you. Let me know. In the meantime all love to you Jen
Sent from my iPad
jess – thank you always for sharing your thoughts – ease, humor, unease, vulnerability. you inspire me.
so glad you have those caring responsive doctors. and thanks for the Kimmie Schmidt video…i had seen something about her..but generally clueless.
deep peace, deborah
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