Tag Archives: GYN Cancer

TREAT YO’ SELF: Being your own advocate

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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…

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!

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elyse

(Photo Credits: Dan Shapiro)

Guts (but not the Aggro Crag kind)

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To start off, if you grew up in the early 90’s you may enjoy the beautiful ‘Guts’ reference in the above title. If you do not fall into that category, the ‘Aggro Crag’ was the coveted trophy awarded to the 1st place winner of the Nickelodeon show ‘Guts’. BEHOLD:

If you think this post is about that beautiful, green, glowing piece of greatness, it’s not. It’s about actual guts, my guts. Sorry…

I’ll understand if you decide to stop reading here.

For those of you that don’t care about 90’s pop culture references, let’s carry on shall we?

Today I visited my gastroenterologist, Dr. Fayek. Since before the bowel obstruction there has been talk of me having a colonoscopy due to thickening of the colon seen on January’s CT scan. My doctors are unsure as to what this means but the Boston doctors would like me to have the colonoscopy as a precaution as it has been seen that the study drug can cause colitis (inflammation of the colon).

It has been a few weeks since I was discharged from the hospital for the bowel obstruction so the consult was for Dr. Fayek to examine me and see if I was in good shape to follow through with the colonoscopy. After feeling my abdomen she said that she still felt some distention and was very concerned about performing a colonoscopy.

In the event that my guts are still jacked up and she were to perform a colonoscopy it could be dangerous. The result could be possibly triggering another bowel obstruction or perforation (which is super scary and could lead to surgery/infection/extreme unpleasantness). In order to perform a colonoscopy your doctor pumps air into your colon in order for the camera to get a comprehensive view (fun right? you suckers should have stopped reading when I told you to).

The colonoscopy is scheduled for Friday, March 13th at Women and Infants but we will have another consult before that to determine if it is safe or not. Dr. Fayek consulted with Dr. Robison and they both tend to agree that it may not be the best time for this kind of procedure.

I am appreciative that Dr. Fayek is erring on the side of caution and being very conservative when weighing the cost/benefit of this procedure. Ever since the FIRST surgery in December 2012, my intestines have never been quite right. Who would have thought that cutting them in half and sewing them back together would make them angry? Is there such a thing as colon-karma? Hmm…

As details unfold about the fate of this procedure, I shall let you know.

In other news…

1.) I’ve been back on the trial for a couple weeks now. It still makes me feel crummy and I still hate it. I am due for a CT scan in April and will weigh out my options at that time. For now I’m working on incorporating some more holistic/healthy practices into my life, abstaining from alcohol (wahhh wine, I still love you), eating VERY well thanks to the generosity of many, and sweating it out in hot yoga/beasting it weight training with Matt. All of this helps, I just need to keep the momentum going to maintain healthy behaviors.

2.) I’ve been receiving a boat-load of extra help lately. Thank you for everyone that has signed up/cooked a meal for me through the CaringBridge page or sent a donation through Young & Brave or otherwise 🙂 Between my cousins alone, I think I have enough individually portioned, healthy, tasty freezer meals to last me another month! (Sara and Teri, you seriously need to quit your jobs and go into business!).

Additionally, I have received many thoughtful gifts, cards, and treats that melt my heart. These acts of kindness resonate with me deeply.

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THANK-YOU!

Love & gratitude 🙂

Why hello there 2015

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Happy New Year!

This time of year has been challenging for me in the past two years as it has been met with troubling news followed by invasive surgery. Not this year! Aside from the general unpleasantness that comes along with the treatments I receive, my December and holiday season has been pretty normal.

Last night I rang in the New Year in some dive in Johnston (for anyone familiar with RI, I know right!?). I threw on my sequined skirt and glittered, tiny, top hat and had the best time. It was arguably one of the best New Years Eve’s that I have had in a long time. No cover charge, no crowds, no hype. Just a dive bar, a couple of friends, my handsome gentleman, decent music, and dancing. (I also apologize to anyone that tried to contact me last night, I left my phone home accidentally before I hopped in the cab.)

I can’t put my finger on exactly why it was so perfect. I think mostly chance. Going to this place was a super last minute decision (as in decided 30 minutes before we went out) so we really didn’t have time to set expectations. No, wait, I lied. I’m a liar. We actually were very skeptical of this being fun and went with it on a hope and a prayer that it wasn’t a suckfest. Luckily we were in good company and thoroughly enjoyed ourselves. It was simple and simple is all that I needed.

An enjoyable New Years Eve is perhaps a good omen for 2015.

Since I was without a phone and subsequently a camera, here are the only pics I snagged:

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Whether you curled up in your sweat pants, froze to death in Times Square, or raged in a VIP lounge over $1000 bottles of champagne, I hope you had a memorable night with loved ones (or if you don’t remember, have friends that are kind enough to TELL you about the night before instead of post evidence on Instagram).

To come:

  • I’ll be turning 27 years of age in a few short days. There will be festivities and there will be pictures. Stay tuned.
  • Cory and I will be hopping a plane in exactly one week to Florida to get away from this goddamn bitter cold. Dave, Chris, Mason & Alex- get ready!
  • I have a CT scan scheduled for next week. Per usual, fingers crossed for continued positive outcomes.
  • Big check up on January 13th in Boston, again, fingers crossed that all is going well.

Lastly, in the spirit of a new year I gave the blog a little makeover. Nothing crazy, some different colors and links at the bottom. Aesthetically pleasing? Yes? Do we like this?

Now go nurse your lingering hangovers. I told you not to drink Andre.

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.