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…

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)

Snow & Chemo

To all of my friends in the New England- I hope that you are surviving the insane amount of snow that has come our way. On behalf of us all, I have taken it upon myself to send Punxsutawney Phil a strongly worded letter in regard to this “6 more weeks of winter” bullshit.

I am sitting at home on our 4th snow day in two weeks. I’m a bit torn as I really could use the extra rest and down time but at the same time it is hard to get back into a routine when I haven’t yet had a full week of work since before my last hospitalization. I guess I’ll just stick with not complaining since my landlord takes care of snow removal and I am left to binge watch Crimes of the Century and drink tea all day under my heated blanket. (To anyone working in Academic Affairs just accept that the add/drop period will never end. Ever, ever.)

Despite last week’s snowfall, I miraculously made it to Boston. I had every intention of writing my update last Tuesday after my appointment but in light of the MBTA basically imploding upon itself, my blog post would have been less about my health and more of a giant rant about public transit riddled with a generous amount of profanity and “f-bombs”. Seriously, anyone that tried to take a commuter rail, T, bus, or cab in the city of Boston last Tuesday must share my pain. How they managed to pull off a PARADE the next day when they couldn’t even get commuters to their jobs/lives the day before is beyond my comprehension. By the time I got to my appointments I’m almost certain my blood pressure was roughly one million over a thousand. (END MINI-RANT)

Per usual I was in Boston from morning until late afternoon playing the waiting game. In that time period I had two appointments: 1.) Ophthalmologist 2.) Medical Oncology. Stacey Applesauce Goldman was kind enough to join me in the waiting game and even sit in a dark exam room while I napped on the exam table.

Eye Doc: Good news! The last time I was there, three weeks ago, I was told that there was a trace amount of fluid starting to collect behind my retinas. This is of concern if ignored but can easily correct itself if one goes off drug. Apparently the three weeks spent on a chemocation did the trick and no fluid was detected. (I still want that seeing eye dog. Maybe I can make an argument for a therapy dog instead?)

Yes this one will do quite nicely, right Blythe family?

946834_903119629211_1217295974_n

  •  Oncology: This appointment was mostly just to get me back on chemo and to bring the doctors up to speed with the partial bowel obstruction experience.
    • Obstruction Recap– They determined that the bowel obstruction was unrelated to the study drug and left it at that. I tend to agree as I do have a history of sad guts prior to this trial. I mean, my intestines were cut in half and sewn back together only two years ago, that doesn’t just go back to normal overnight. My guts are cranky. So moving forward the plan for these cranky guts is to meet with the gastroenterologist again and plan for a full colonoscopy in a few weeks when she feels it is safe to push air through the intestines. We should have a little more information about what the thickening of the colon means after the colonoscopy.
    • Chemo- After much deliberation amongst the group, it was determined that I would be put back on the chemo regimen at a reduced dose of the SAR drug. I’m not sure how effective this will be in curbing my side effects as this drug could possibly be a placebo BUT it’s one less pill I need to take per day. Psychologically, it’s oddly helpful. So far this week I’ve experienced one day of visual blurring (common for first day back), fatigue (par for the course), nausea, leg swelling and stomach discomfort (details spared). So I suppose everything is back to normal then. It’s not great but it has been much worse.

I must be honest, I have thought a lot about quitting the trial over the last few months. It has been incredibly difficult and when my last CT scan came back at a plateau, it was tough to swallow. Through the last few weeks of being off of the drug I have had to physically, mentally, and emotionally rally. I think I am in a place now where I can at the very least commit to a few more months of this and see what comes of it.

As I have said before, part of the challenge is having no defined end date. It’s just this endless cyclical shitstorm. I’m going to try and reframe this in a more incremental way. My next CT scan should be in April. If I can just make it to April I’ll be okay. It doesn’t mean it’s over then, but it’s a small leg of the journey that I can compartmentalize.

So that’s all I have to say about the visit. A long day and not a lot of news.

Lastly, but most importantly I must express my gratitude…

Holy moly the response to my request for help has been unreal!!!! This past weekend alone, Cory insisted that I relax in the bathtub while he clean my apartment himself (boyfriend of the year, right?). From coast to coast and beyond the US people have been graciously helping in any way that they can. I have received delicious, healthy, home cooked meals made with love. I have received thoughtful gifts, offers to accompany me to the doctor, offers to help with laundry/cleaning/errands, generous monetary contributions to help with medical bills, and beautiful encouraging cards/texts/messages.

All of these acts of kindness add up and make my life a little bit easier, but more than anything they lift my spirits. It’s a major reminder that as fiercely independent as I would like to be, I cannot do it all myself. Your kindness is fuel to keep going and keep trying even in the midst of a difficult day.

THANK YOU for every little act of kindness!

loveislouder

Twas the Night Before Chemo: Take 2

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.

Cancer as chronic

Recently I feel as if I have been on an upswing. Perhaps I can attribute this to being back at work, going back to the gym (slowly), and socializing per usual. I have really enjoyed the way I have felt, both emotionally and physically.

Last year I wrote about a mental state that I fondly refer to as “cancer purgatory”. Cancer purgatory is when you’ve been treated but you’re not totally sure if you have no evidence of disease. Cancer purgatory haunted me last year. I hated the uncertainty of it. I despised the “living between the lines” as my mother so perfectly phrased it. I was not in the wrong for feeling that way. In fact, I am likely in the majority of cancer crushers that just want to do what they need to do and put it all behind them. It’s easier to compartmentalize in your head if it is black and white, cancer or no cancer.

Since having a recurrence my perspective about what this all means for my life is a lot different. Both Dr. Robison and Dr. Dizon have made me feel secure in the fact that medical science is in my favor. Just yesterday I went in to W&I for a check up and Dr. Robison told me that there is a MEK inhibitor trial starting next month that the most current literature finds to be quite promising. That didn’t exist a year ago. Basically I know that if this disease continues to “be a nuisance” (as Dr. Dizon put it) we will have more and more tools to fight it as the months and years go on should we need them (for the record, I do not need this trial at this time). I am in a place emotionally where I think about cancer on a regular basis but how I regard it is different. I feel that I am able to stay more present and can buy into the notion that this is a chronic and manageable disease instead of the Loch Ness Monster of medical conditions.

Right now I don’t know if there is evidence of disease or not. Regardless of the answer, it will not change how I continue to operate. Cancer has a funny way of scaring you and empowering you at the same time. As of this moment, it is fueling a lot of positive opportunities. I’ll take it.

funny-cancer-meme