Chin Up, Spirits High

The “busy season” in advising is both exciting and draining leaving me pretty pooped by the end of the week. Today at chemo I will typically fall asleep through most of it once the Benadryl hits my veins. This time I totally passed out BEFORE the pharmacy even approved my blood work. Legitimately I arrived, got situated, Rosa accessed my port and hooked me up to saline while we waited for the green light from pharmacy to let us proceed with pre-drugs/chemo and I was totally out.

It’s just as well since the cable at he hospital has switched up their programming from Law and Order SVU to Law and Order Criminal Intent on not one, but TWO channels. I might need to write an angry letter. Scratch that, write a kind letter and play the cancer card. If there is a time to use the c-card, this is it!

It’s okay detective Tutuola, I’ll forgive.

Anyway, the infusion went fine and I just slept and slept. I actually slept so much I forgot to ask Rosa what my new CA-125 results were!

When I got home I crawled into bed and texted the ever reliable Sheila: “I was such a sleepy head today I didn’t even ask Rosa about my blood work. What’s the verdict dude?” I dropped my phone onto the bed next to me, buried my head in pillows and blankets and proceeded to pass out for another hour.

I awoke to about 14 missed texts, mainly from an excitable Sheila Enderby.

It turns out that my CA-125 has DECREASED from 742 to 455!!!

I haven’t had a CA-125 this low in well over a year and half or more. In fact I never had a CA-125 below 995 through the duration of the MEK inhibitor clinical trial at Mass General.

Here is a nice little recap, thank you Roger Williams for the 8 am required “Intro to Excel” course that made this half-assed graph possible:

ca125largergraph

I have had so many days where I have had doubts and concerns. Perhaps in the future I will pursue a revolutionary new treatment that could obliterate the existing cancer but for now I am so pleased to see some REAL progress. Numbers that may reflect moving in a more positive direction.

I am so grateful to start off this next cycle with a bang. If you work at Women and Infants hospital and reading this- be forewarned that you’re going to be getting mega hugs (Heather- I already told Sheila that you get TWO, just ’cause).

Also- this is kind of an after thought but for my friends undergoing Taxol treatment PLEASE listen to your nutritionist and take L-Glutamine 3x per day. I started to feel some neuropathy come on (loss of feeling in hands/feet/fingers/toes) and since starting Glutamine I can already feel the impact! If this is a healthy choice for your body and approved by your doctor/nutritionist please go for it.

Anyway, that is all I have got for today.

Have a great weekend everyone!

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Boots

Sarah and I have just arrived to the ornate Providence Performing Arts Center settled in the heart of downtown Providence. We are about an hour early to the 7:30 show: An Evening with David Sedaris. In front of us is a vendor selling his works. To the left I spot an unassuming table with a sign that reads: “Please no photos”. I’ve never seen David Sedaris in person aside from a promotional headshot or two but I’m willing to make an educated guess that the man at that table is not the representative for RI NPR. In a fit of nerd-ity I gasp and whisper to Sarah: “that’s him!”

Our early arrival afforded us the opportunity to step in line behind just four or five other people to have him sign my copy of Let’s Explore Diabetes with Owls. As I consider what I would like to say to him I observe his interactions with other fans. He has a kind face, he’s making eye contact, he’s engaging the fans, really listening to what they have to say. Full conversations are happening beyond the anticipated: “who do I make this out to? Pam? P-A-M? Oh, two M’s. Okay thanks for coming out PAMM.” Sedaris takes his time with each person.

My turn presents itself sooner than anticipated and I look back at Sarah wide-eyed. She shoo’s me along like a supportive mother sending her baby off on the school bus for the first time. I approach the table and before I can think of how to introduce myself he says: “If we were friends I’d call you Boots! So Boots, what’s your real first name?” I giggled and told him that my name is Jessica but he can call me Boots, you know, since we’re friends and all.

This little icebreaker made me feel more at ease but certainly was not enough to control the level of grade A awkward that was coming out of my mouth. To this point, there have been three occasions in which I have been able to express to other writers how their work has contributed to developing my own voice as an aspiring writer. Once through a well-crafted email to Will Schwalbe (where he was all too gracious to return my email with mind-blowing kindness), another smaller book signing with a local author, and now this event with David Sedaris. It’s always weird and voyeuristic. You, a total stranger, gushing over the author’s work and their personal lives (in the case of creative non-fiction).

In what felt like a mess of painfully awkward word-vomit, I somehow articulated to David Sedaris my appreciation of his work, how it has impacted me as a budding writer, and how writing has played into living with cancer. I must almost mention that when I drop the ‘C’ bomb on anyone unsuspecting, I tend to totally overcompensate for how serious it is by acting far too casual. In this case I explained my situation in short that I was diagnosed with advanced stage Ovarian Cancer in 2012 and “have just been riding the cancer wave since.” This was accompanied by a wave motion with my hand (oddly reminiscent of Clueless circa 1995).

Now, I expected a “thank-you” followed by a polite head nod but instead he asked me if I was writing a book. I explained that it is my ultimate goal to do so and that I have pieces written that are in progress. He then asked me what the name of my book was to which I do not yet have an answer (it may need to be Jess in Boots after this encounter). It was at this point that I mentioned maintaining this blog and the man picked up his sharpie and WROTE DOWN THE BLOG URL.

It doesn’t matter if he never visits the blog. I don’t expect him to. The fact that he cares enough to inquire about things that are important to his fans speaks volumes. It only served to reinforce why he is one of my favorite authors.

He handed me back my book:

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I could write another 700 words on the reading itself but I’ll keep it brief. It was hysterical, exceeded expectations, and included a story of how a stranger removed a fatty tumor from his body that he froze and he later fed it to a sea turtle. Need I say more?

Tired & Wired

It’s possible that I’m still recovering from the excitement of the Izzy Gala and NOCC walk and that was almost two weeks ago. I don’t think my body has quite caught up. I have had another round of chemo since and feel perpetually tired and amped up all at the same time.

Sleeping well has been challenging for a combination of reasons. I lay in bed thinking about what I need to do that next day at work, what chores sit undone, what I’m going to eat, treatment schedules, how the new season of Empire will unfold, my hopes, my dreams, my goals… Over and over and over I have these rapid fire thoughts until I finally fall asleep. My weird dreams take over from this point. It’s as if there is a dreamland director saying: “Okay folks, I’ll take it from here. Okay Sam and Diane from Cheers, are you here? GOOD. I need you to make an unexplained appearance in the chemo unit while Jess panics to review a degree audit for a student before the Hamburglar enters the room to stuff Pad Thai in her socks.”

Okay, that’s totally made up but if you’ve ever had a stress dream you get the gist of how you feel when you wake up- totally and utterly unrested.I t’s not that I am even “stressed” in a negative sense, just rapidly thinking. On top of the endless thoughts, eternal acid reflux wakes me up roughly 3-4 times per night.

The reflux should subside soon because Dr. Robison agreed to switch me back to Omeprazole. If anyone reading this suffers from chronic heart burn listen up. YOU NEED THIS IN YOUR LIFE. Omeprazole is a medication that has been sent down from the heavens on a silver platter by actual angels. Your life will change and soon mine will too. If I’m going to have insane stress dreams, without reflux I’ll at least be more likely to ride out the madness until morning.

It is clear that I have quite a bit going on and need to work on quieting my mind before bed. I know what works for me: Hot shower/bath + chamomile tea + no electronics at least 30 minutes before bed + a  Sleep Sonic CD to drift off to = Slam dunk. The key is doing this every night. I’ve had my tea so far tonight so it’s a start.

Aside from regulating sleep and managing fatigue, things are actually pretty good right now. Actually, being the medical anomaly that I am, some odd things are happening to my benefit…

Despite lingering soreness, I am pretty sure that my fingernails have stopped lifting. There was a point over the summer where I couldn’t even scratch my head for fear of losing a nail. Despite the discoloration (they’ve turned blue/black/green/gross) they feel stronger. Why? No effing clue. Not questioning it. Additionally, my hair is growing back! All of it! Even the chunks that totally fell out earlier in the summer. I’m looking forward to growing out my locks again. Hopefully in a few weeks I’ll feel comfortable enough go sans hat to work!

Over dinner last night I told Sheila about these strange occurrences and half-jokingly asked her if they are swapping out Taxol with a placebo. That was answered with an emphatic “NO”. So again, I’ll just be happy that my hair and nails are pulling through and not ask questions.

Final report of the evening is my personal favorite!

At work I have the great fortune of interacting with college students every single day. Every one of them unique, passionate, and engaged in their own way. It is my greatest joy to see students develop as each semester passes. It’s nearly impossible not to feel connected to many of these young adults as their undergraduate advisor.

As of this week, I get to experience that connectedness in a different capacity (don’t worry I’m not changing jobs!). Bryant’s Colleges Against Cancer has approached me to co-advise their club with the magnificent Amanda McGrath. I couldn’t be more excited to use this crummy experience and channel that energy into a campus community that has served me so well through this difficult time.

I’ll chalk that up to another cancer silver lining 🙂

I hope everyone is having a wonderful week. I’m off to fend off some more stress dreams. G’night and continued gratitude.