When distractions aren’t enough

Yikes, I have gone an entire month without tickling the ol’…plastics? Hm. I guess there isn’t a cutesy name for typing on a Macbook like there is playing a piano.

Whatever, I’m back. In my head I hadn’t updated because I thought that I was just coasting through the monotony of treatment with no real news. Pretty much every week consists of a blood draw to make sure my CBC (total blood count), followed by an infusion the next day, and 2-3 days of steadily increasing instances of nausea, vomiting, fatigue, and a poor appetite. I was; however, lucky that Valentine’s day weekend fell on a week off treatment between cycles so I was able to nom nom nom on every morsel of food I could get my hands on.

I have hired a professional actor to reenact how I’m pretty sure I looked during Cory and my romantic Valentine’s feast:

giphy

Much to my disappointment, a ravenous approach to all things delicious has been the exception more than the rule lately. With every treatment it is a little harder to curb the nausea and general unpleasantness.

Tomorrow I am armed with two full scripts of Zofran and Phenergan to hopefully ensure a vomit-free weekend.

That’s really all I have for a general health “update”. Until I have another CT scan this summer (maybe June-ish?) I won’t know much more about how I am doing than I do right now. My CA-125 has been a pretty unreliable indicator of progress as of late. It’s still hanging out in the 800’s. I used to track it but I lost count. As long as the scan shows no new disease, we are happy. No new disease also opens the door to discuss tapering back treatment to only Avastin to see if I can maintain without the Taxol portion. It’s too early to really know so we’ll table that discussion for a few months from now.

Until then I’ll just keep my head down and do what I need to do.

Nope. I take that back. That’s what got me in trouble over the last month. Keeping my head down and trying to suck up frustration over physical ailments just lead to a month of feeling emotionally and physically depleted more often than usual.

So often I’m kneeling on the bathroom floor, grateful for the gentle fibers of the bathmat under my knees, retching over the toilet. I think to myself “WHY CAN’T I JUST EAT A GODDAMN MEAL WITHOUT DOING THIS?!” The next thought, just seconds later is not kind- “You have had it so much worse. Remember the hysterectomy? Remember IP chemo? I know you remember the clinical trial. This is nothing. You’re fine.”

Imagine if instead of that being my inner monologue, a friend said that to me. They would be a total asshole right? Why do we insist on being so cruel to ourselves in our most vulnerable moments?

As a result of this ongoing and dismissive mental-chatter, I was not recognizing the extent to which I grappling with the continued hurdles. What I was doing was throwing all of my energy into the students and projects at work, coming home, and binging on hours of mindless tv/movies. Numbing the discomfort with distractions.

Distractions can only get you so far. You can let your mind wander but it doesn’t forget that you have a case of the yucks (<– clearly a real medical term used often in clinical settings).

Earlier this week my Mom asked me how I was doing in just the right way for me to respond in a cracked voice and tears instead of the usual: “I’m alright”. Totally involuntary. I thought I was okay? Clearly my brain had some feelings to unload and my Mom is the best person to coach me through the yucks. An hour of crying and producive discussion about healthy emotional outlets later, I felt renewed.

After that phone call I dedicated the rest of the night to self-care. I headed straight to my sanctuary- Barnes and Noble and treated myself to two new books. Stories that could serve as healthier alternatives to hours of binge watching garbage tv. I can get lost in a book, but not for five straight hours. At some point I’ll have to put the book down and face nagging thoughts or feelings. I also bought a new, colorful, ornate looking notebook to pour those nagging thoughts and feelings into.

Later, I wandered into Panera, ordered a comforting bowl of soup, and freely wrote for about an hour. I opened the floodgates and painted a portrait of words to reflect every nagging “yuck” over the last month, or months…or years.  If my future grandchildren are to ever come across this journal they will quickly find out that sweet old Nana has a fondness for a certain “F” word not often found in this blog.

It is no coincidence that I slept more soundly on Monday evening than I have in months.

Chronic illness is a marathon. Until science catches up, there is no quick fix for ovarian cancer and the existing treatments though tolerable are not easy- especially over the span of few years without much reprieve. Self-care and kindness is essential to adapting to the ever evolving new-normals of living with disease.

I’m happy to have had Monday’s mini-breakdown turn into a breakthrough. It has energized me through the week and I am working hard to keep up the momentum. So that said I will keep my head up and be less dismissive of my own needs and emotions.

On a final note- this entry is timely as today marks the three year anniversary of The Cancer Chronicles!

Soooo if my blog was a child it would be able to speak sentences of 5-6 words, correctly names some colors, and dress itself. Way to go blog!

 

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17 thoughts on “When distractions aren’t enough

  1. Absolutely everything right about saying it as it is! Rally on dear Jessica ~ you know how much you are loved by all of us who see the strength of your spirit move through these three crazy life years! You continue to amaze us with your enduring journey. Love and light your friend Frannie! xoxoxo

  2. Jess,
    YOU are an AMAZING young lady!!! YOU are an INSPIRATION to all ~ a breath of fresh air!!!
    I PRAY (& look forward to) the day when your “blog” says “YEA, CANCER FREE!!!”
    🙏🏻🙏🏻🙏🏻🙏🏻🙏🏻💕💕💕💕💕🙅🙅🙅🙅🙅
    Sending Prayers, Love, & Hugs to You & to Your Wonderful Mom!!!
    Love You Both!!!
    Karen

  3. Jess, your ability to make us all understand this particular “hell” is amazing. I pray that your body gets stronger, and that you continue to fight this battle! You are a winner, and time goes by, but you stay with us! Keep fighting, Jess! Love you
    ❤️
    Beth Bradley

  4. Keep running 😀😀😀

    https://youtu.be/xUFxRDI64cs On Mar 4, 2016 15:00, “The Cancer Chronicles” wrote:

    > jsultaire posted: “Yikes, I have gone an entire month without tickling the > ol’…plastics? Hm. I guess there isn’t a cutesy name for typing on a > Macbook like there is playing a piano. Whatever, I’m back. In my head I > hadn’t updated because I thought that I was just coastin” >

  5. Your entry resonated with me somethin’ fierce. “Why do we insist on being so cruel to ourselves in our most vulnerable moments?” I’ll always, always remember those words. I love you tons and constantly feel inspired by your strength.

    • This feedback is so validating. Thanks Nate! Sometimes it’s hard to articulate the less positive inner workings of our thoughts and emotions but it’s certainly something everyone can relate to on some level. We’re by nature our worst critics.

      Hope you’re well darlin’!

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