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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Summertime Treatment & Sad Farewells

I hope that everyone had a safe and lively 4th of July weekend. From what I have gathered from social media, sun was soaked in, food was consumed, fireworks were constant, and everyone’s dogs lost their shit. I have spent the past few days on the Cape with my parents, other people’s parents, and in some cases other’s grandparents. Needless to say it has been pretty quiet and relaxing which is just what I need right now after a trying few weeks.

I am disappointed to share that I made the tough decision to rehome Josie. Although I anticipated the challenges of dog parenthood, there are several factors that contributed to it being an overwhelming experience (none of which had to do with her personality, she was great). This is a decision that I did not take lightly, especially because we really bonded. Perhaps under different circumstances I would have been able to manage better but I have to be authentic here and be honest that this was too much. I need to both take care of myself and do right by Josie. She was with a wonderful foster family over the weekend and they were kind enough to send me pictures of her happily romping around with their other dogs the very next day. I have also heard from her new adoptive parents and they are lovely. Josie took to them right away when she met them. Bottom line, I am happy that Josie is loved and safe even if it was not in my home.

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I’ll be a puppy mama again someday but not just yet…

After leaving Josie it was good timing for a small vacation to stay with my parents on the Cape. We had a great time relaxing, reading, coloring (yup, adult coloring books), live jazz/blues and catching up with family friends. We enjoyed panoramic views of fireworks on the beach in Sandwich on the 4th. We also gorged ourselves with delicious BBQ and seafood. We celebrated part one of mama’s birthday last night with great dinner and our favorite, Pirate’s Cove (never too old). All in all I feel much more refreshed and ready to return to work tomorrow.

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How cute are they?! ^

Treatment:

Due to the holiday, the infusion center was closed on Friday so chemo was pushed up one day. I was expecting it to be insanely busy to compensate for the closure but luckily I was still able to get in on time AND somehow get a room with a bed. I was honestly expecting a folding chair in the lobby. I think someone must be bribing the infusion center staff to ensure these accommodations for me because I cannot fathom how lucky I have gotten to have a private room with a bed for every infusion except for one. Nothing is better than being able to shut off the light, snuggle up, and pass out while you pump your veins fulla’ poison.

Side effects:

Fatigue is at an all time high for this treatment. It is really catching up with me as my energy levels aren’t quite bouncing back as quickly as weeks prior. The treatment of Avastin and Taxol really packs more of a punch when it comes to draining energy and I found it tough to get out of bed post infusion last week. I think I came home and slept for at least 3 more hours. I can still function but I’m increasingly sluggish at the moment.

Hand rash has pretty much turned the back of my hands into dinosaur skin. I hope it doesn’t look and feel like this permanently because it’s not pretty. I’ve been using a lot of Aveno, Lubriderm, and prescription hydrocortisone cream to soothe the itch and inflammation and to keep the skin moisturized. This rash is highly sensitive to the sun so no daytime beach trips on the Cape for this girl (don’t worry I’ve subbed that for sunset visits on the beach instead).

Sore fingertips are still a thing, a real complaint. I trimmed my nails down yesterday which has taken some of the pressure off but it is becoming increasingly challenging to perform certain functions such as fastening buttons and clasps or opening containers. My nails are becoming more brittle and I have noticed that the nailbeds are changing in color to a dark red/purple. Some are worse than others. I relieve the inflammation by running my finger tips under cold water. I’m not sure what else I can do besides that and keeping them clean (to avoid bacteria and infection). My mom encouraged me to look into homeopathic remedies but I haven’t hammered down anything yet. Luckily my nails haven’t lifted yet so fingers crossed they don’t and at worst stay sore.

Hair loss– Yep, still balding. Holding on tight. Headbands and wraps are helping to hide the top a bit for now. I honestly don’t know what I want to do yet. Shave and be done with it or ride it out and see what happens? A significant amount of hair has fallen out of the top but at a much slower rate than before making this decision interesting. The jury is still out.

The news you have been waiting for:

My CA-125 results are in, actually I’ve had them for quite a few days, I’ve just been on radio silence on the blog front.

The CA-125 blood test showed a drop from 1184 to 812! We’re in triple digits! As I always say there is still a long way to go but at least we are seeing progress. This is very encouraging for me indeed.

On that note, I hope that everyone is enjoying their summer thus far. Stay tuned for more test results and summer adventures (does binge watching Seinfeld on Hulu count?)