You bleed it, you bought it

(PREFACE: Earlier I accidentally published a draft of this entry and quickly deleted it. For subscribers- please ignore the first email you received and read this new, improved, polished version. Thanks! -The Management)

Over course of the past year I spent some time on the Women and Infant’s Hospital Family and Patient Advocacy Council (it’s a mouthful…thank goodness we didn’t get business cards). In that time I had the great pleasure of meeting a few other patients as well as connecting with staff and administrators of the hospital. There was one ovarian cancer patient that stood out to me, Rhonda. This woman is kind, honest, and upfront with her ideas and experiences.

There was one day several months ago when I was at the point in my clinical trial treatment where I just had enough. I hadn’t vocalized it to my medical team yet and it was causing me a great deal of anxiety. After the PFAC meeting I happened to pass Rhonda in the hallway on the way to the bathroom. Now keep in mind that outside of this group, I really didn’t know her at all. She asked how I was doing and often times those words are just enough to drive an overly emotional person like myself into a tear fueled tizzy.

I divulged to her the inner conflict that I was having about my treatment options and the fear that I was making the wrong choice in light of how high the stakes are. She listened intently, not breaking eye contact. You can really see it in someone’s eyes when they understand your fear and struggle. She knew well. Despite having high stakes challenges of her own, Rhonda was reassuring and purely optimistic without being dismissive. I felt so understood by someone that didn’t have to understand me. I felt so cared for by someone that didn’t have to care- but she did. That interaction stayed with me.

As time went on and transitioned into new treatment I felt that it was best to take some time away from the council. That being said I haven’t seen Rhonda but through a very sweet oncology nurse, more recently we were able to keep up with one another.

I received news that Rhonda left the physical world yesterday morning. I am heartbroken but glad to know that she was at home, surrounded by her loved ones.

Despite our limited interactions, this woman had such a profound impact on me. When I learned of her passing it felt like a punch in the gut. Part sadness for the suffering she and her family endured, especially in her final weeks. Part fear over the grim reality of this disease and how quickly things can change. I am fully aware that we have different bodies, different circumstances, but regardless it hit close to home.

My sincerest condolences go out to anyone that had the pleasure of knowing, treating, or loving this woman. I know she was a fan favorite at WIH.

The last two days since finding out about Rhonda has left me feeling a bit out of sorts. After work today I was sitting in my apartment trying to distract myself with Netflix but I was just too antsy. After running an errand I ended up at my Mecca, the book store. I am the child of two voracious readers so it is only appropriate that in times of inner turmoil, I turn to the bookstore for distraction and clarity.There is a little book shop in Wayland Square called Books on the Square that I absolutely love.

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(Don’t worry this is where the story takes an entertaining turn)

So I’m browsing the latest selections and pick up a book off of the Biography shelf purely for its eye catching title (and NYT Best Seller Status)

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I like to open to a random page and read a paragraph out of context to get a feel for a book when I’m browsing. I crack the book open (honestly thinking that I’ll just read a few lines, say ehhh, and return it to its standard, upright position). Before I can read a single word- DRIP. DROP. Captain we have a nosebleed.

I BLED into this book. Seriously…

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It also seeped into the page before and after it. Whoops.

I did have that momentary: “I could probably just put this back…” thought but in good conscience I couldn’t possibly re-shelve a book that I just BLED into.

The bookstore clerk was kind enough to provide me with some tissues as I continued to gush blood into my hand. I politely tried not to leave my DNA all over the store and quickly excused myself to the bathroom to clean myself up. When the pipelines dried up, I returned to the counter and sheepishly shrugged: “ummm so I guess I’m buying this now?” The clerk must have felt bad for me because she gave me a 30% discount ( I mean after all, there was blood in my book. No need to point fingers as to how it got there…).

Well my friends, there are no accidents. I think I was destined to read this book that I was going to carelessly return to the shelf (pre-Bloodkstock ’15). It turns out that The End of Your Life Book Club recounts a man’s experience of his mother’s pancreatic cancer treatment and the bond that they shared over trading and discussing literature. From what I have read so far, it brings to light how powerful the written word can be as a common thread between individuals facing great upheaval.

I am only 45 pages in but perhaps there is something to be learned from this book. If there is, I will be sure to report back! One of the book’s themes deals with issues of mortality. If anything it will force me to really process Rhonda’s passing and not internalize it from a place of fear but more from a place of acceptance and understanding.

Well friends, read on (but don’t bleed all over the merchandise, it’s frowned upon)

Rhonda- keep shining 🙂

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A zebra amongst horses

You know your life is jacked up when you are delivering the following as “good news”.

Good news everyone! I went to Mass General in Boston yesterday, escorted by the lovely Sheila Enderby (my chemo nurse). We had a consult with Dr. Dizon, a former W&I colleague of my oncologist. I entered with the intention of learning about a trial chemo that I qualified for at the recommendation of my gyn. oncologist.

I sat in the little examination room with Sheila before the Doctor came to see me. Anxiety through the roof. A sweet, 24 year-old medical student came in and took an extensive history. As much as I liked her, my nerves were getting the best of me, and I wanted to rip her head off if she asked me ONE more time the age of my first menstrual cycle. I think she was nervous and trying to be thorough. Seriously though, how many times do I need to answer the same questions? After the medical history interrogation, the doctor finally came in an hour and 3 minutes later (but who was counting?).

When Dr. Dizon walked in, I instantly loved him. He is a small, stylish, Filipino man. He wore a purple velour sport coat and matching purple socks. His outfit was completed with a bow tie. He put the CT scans on his computer and we looked at the images together. He showed me exactly what I was looking at and pointed out where the tumor is. You could tell that he was surprised and relieved to see that it was small and only in one location.

He confidently told me that it was his professional opinion that treatment beyond surgery is unnecessary at this time. I think we all let out a collective sigh of relief as there were talks of chemo initially. Cue twisted thinking: Thank goodness it’s only a little bit of cancer! Thank goodness I only need another major abdominal surgery!

He said “On this earth there are horses and there are zebras. You my dear, are definitely a zebra.” This is a really polite way of saying that it is effing bizarre that I have the disease that I do. He also said something that helped me to reframe my thinking surrounding this illness. He is a straight shooter and flat out told me that this may not be the end. This could be the beginning of many more recurrences. He basically said to consider it to be like my own version of diabetes. It’s not ideal, it’s not good, but as it comes we will treat it to the best of our ability. If it comes back we cut it out. Grow tumor, find tumor, zap tumor, lather, rinse, repeat.

So many times over the past week my friends and family have heard an emotionally-taxed me say “is this really my life?” Dr. Dizon essentially said yes, this is your life, but we will do everything we can to manage it. Before the goal was to never do this again. I was sure that my cancer was one and done. His honesty forced me to embrace the fact that, yup, this is my reality. Who knows, maybe I’ll never have a recurrence again, or maybe I will. Either way right now, it’s not a death sentence.

This has not stopped me from thinking about mortality. I know you’re thinking, “oh stop you’re going to live until you’re 96 like the rest of us poor souls. Stop being dramatic.” I am sure that I am scaring my mother right now by writing about death (Sorry Mom, but don’t worry. I still plan to outlive you). I had a long existential life talk with Sheila yesterday and I realized that I am less afraid to die and more afraid to live an unfulfilled life.

It may sound extreme to think about but sometimes you have to go to that dark land of “what if” sit with the irrational fears, grieve, make peace, and come back up for air. So that is what I am doing. Problems only arise when you get lost in the land of “what if”. Do not fret my friends, I do not intend to stay there. It’s healthy to visit but not to move in.

My biggest fear surrounding living with the prospect of continued disease is having it prevent me from reaching my goals. I’ll be damned if cancer-recurrence prevents me from traveling, publishing written works, celebrating the accomplishments of friends and family, growing professionally, watching my students graduate, adopting children, and/or marrying my future best friend (TBA). If living with disease means needles, blood work, surgery, recovery, hospital beds, CT scans, and medication, so be it. After last year, short of getting shot in the face with an AK-47, I can handle any physical challenge that comes my way. I just don’t want to miss out or continually feel like my life is on hold. Although looking back at my photo review of the past year I guess I did a better job of “getting busy living” than I thought. Perhaps this is all within my control more than I think.

End rant.

Anyway, I will be channeling my inner Esther Garbus as I approach surgery #5 with feisty energy. Perhaps I’ll also channel the “I don’t deserve this crap” anger into scaring the piss out of my tumor so it never grows back.

On a lighter note I had the most lovely day in Boston post-oncology consult with Sheila. My chemo nurse, on her day off mind you, took the time to come to my appointment with me cross state lines and proceeded to take me out for celebratory cocktails after at the Liberty Hotel:

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This is the selfie we texted to Dr. Robison, my primary oncologist, after receiving news of no chemo:

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I am so lucky to have this medical team. They are family. I don’t know many other medical professionals that care more about their patients than these people. I love that I can go to an oncology consult and follow it up with lunch and cocktails with my nurse. We can talk about life and death and laugh about it. It’s remarkable.

I’ll end by saying thank-you again for the continued support! I will be updating the chronicles as details unfold regarding surgery and recovery timeline.

With love and gratitude,

Jess