How will Santa know where to find me?

My one medical update is that I FINALLY was granted the procedure to have a g-tube placed. This is a tube that goes through my stomach that attaches to a small pouch. If I feel as if I am obstructed instead of having to go to the ER and spend months in the hospital on bowel rest, all I need to do is excuse myself and empty my pouch. I will not have to rely so much on uncooperative intestines.

I’m in a lot of pain but have a small pain button that administers IV meds continuously at a very low dose. Every ten minutes it can push a larger dose by patient request (by pressing button). It is also controlled in such a way that patients cannot overdose. No worries, friends! No accidental OD’s here.

So as much as I didn’t want a g-tube this summer, I know that this is necessary and dare I say it-

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I think I’m glad I got one…

 

 

So I thought good and hard about what I wanted to share with you.There are the miserable weeks upon weeks of pain, uncertainty, fear, blood, procedures, guilt, what feels unfair.  I could tell you about how part of me is ready to escape these walls and seek the comfort of Cory and my little house in our little town on our little street.

 

So instead I’m going to share with you how spending EVERY holiday in the hospital didn’t totally suck. I’m not saying that there aren’t better ways to spend your holidays but it’s not all doom and gloom when you’re surrounded by the right people.

 

Christmas

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The nurses decorated my room, hung a stocking, and left two unopened gifts. It turned out to be a fuzzy robe and slippers paying it forward from a previous patient. So nice! The last perfect touch was Maggy’s poinsiettta.

I was truly disappointed not to have “our firsts” together in the new house like our first christmas tree or our first cookie decorating(eating til’ we puke) night. More than anything I was looking forward to watching Christmas Vacation together per our tradition. That said, it will make next year’s Christmas list.

 

New Years 2017

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I expecting a low key night with my handsome fella and Stacey  but I was double surprised when  my other wolf pup sista, Michelle, walked through the door! It was the best surprise. I am sad that I don’t have a pic of all of us and that I felt so crummy around 10:30 forcing myself to bed early. Then again 2016 kinda sucked so I suppose it was fine to bow out of the old year early. Cory, Michelle and Stacey could have been anywhere else with anyone else having a much more exciting night (or at least experienced better people watching. Thanks love buckets 🙂

The next day I experienced some more home town lovin’ from my girl Jaclyn in the afternoon. She hauled her law school hehind down from Boston to check in. Thanks to school her life these days is very often not her own so I was appreciative that homegirl could come.

 

Last but not least,

My 29th Birthday

Before I go into any detail about my actual birthday I must remind those that have infrequent encounters with nurses. These are not just the people that take blood pressure and take your temperature. Nurses are the special breed of super-human, caffeine-driven, part-scientist, part-mathematician, part-mind reader, part-social worker, part -cheerleader, part ass-kicker, will not take no for an answer cherry on top of your day advocate. If anything they are just like you and me but profoundly better in every way.

So it should be no surprise that with my luck, my birthday fell on a day that I’m STILL living in the hospital. I mean, that’s bad enough but I’m also still NPO which means I cannot eat or drink anything besides an occasional ice chip (edit: as of this evening I can have liquids). Emily found a solution for that 😉

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This is how it went down from the real beginning:

12:01am: Entire 3rd shift nursing staff enters my room to sing the Happy Birthday Song (I’m already full of happy tears)

Throughout the next day there seemed to be a never ending supply of gifts and flowers and love! My day nurse luckily only had me at the time and treated me to a gorgeous manicure.

 

 

Even the residents doing their oncology rotation remembered and put together a little hand made card.

 

My parents were here! Just when I though this day couldn’t get any better…

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Oh an Alicia jumped out of a “cake” clothed for the sake of  HR and all that fun stuff haha…

 

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I think this final picture of the gift from the 4th fool holds strongest meaning to me. If you sent me something beautiful that did not make it onto the blog this time please know that I am truly appreciative of your love and know that you are with me in spirit.

 

That’s all I have for you for now.

-NG tube is OUT WOO!

-G tube is IN

-I can now drink  clear and full liquids 🙂

Thanks again for keeping my chin and spirits up over the past weeks. I have never felt alone.

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The Bucket List: Sans Morgan Freeman & Jack Nicholson

I don’t think there is a way to say this without sounding a cheesy.

I made a bucket list…

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A cancer patient made a bucket list, how original.

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So why now? What prompted this cliche?

A single article: 91 year old’s bucket list journey

I read the initial article as it circulated social media a few months ago. It’s about a woman diagnosed with Uterine Cancer at age 90. She decided to skip chemo and go travel to do all of things she has always imagined doing in her lifetime. As you may see, she did a whole heck of a lot in the span of a year, probably more than most do in their lifetimes.

No one wants to live out their days hooked up to IV poison. At 90 years old I would have said “eff it” too and just let everything else take its course.

Admittedly I was jealous of Norma. If it was evident that I would meet my maker soon, I would want to do the same. The reality is that I’m in my 20’s, there is a lot of life to be had, and no indication that I’ll be kicking the bucket anytime soon (that’s a good thing). I still need to work full time and plan for the future.

Norma’s adventure got me thinking about purpose and fulfillment. Am I doing everything I want to live a purposeful life? What do I want to do that I haven’t done yet? What can I do that will push my own boundaries? As I spun through the “I really want to ______” rolodex of my mind I became overwhelmed. Can I do what I need to do? Will I have the resources? Will I feel well enough?

Is there enough time?

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And there I went again, staring my mortality in the face.

It happens every now and again. The thought of my own mortality isn’t persistent. Sure it’s intrusive, but not a daily thing. For me, it doesn’t act as these ongoing big, dramatic, moments. When I go to bed at night I don’t think to myself “hope I wake up tomorrow!” I think “my phone just indicated that I need to wake up for work in four hours and twenty-one minutes, yikes.”

The reality is that intrusive thoughts will visit you periodically and you have to sit with the discomfort and find productive ways to transform it.

The grim realities of disease can either drag you down or they can motivate you (although truthfully it’s a little of column A and a little of column B.) In this case, I sat with these strong feelings and allowed it to challenge my pattern of thinking.

I had the great privilege of speaking with Zach Mercurio, writer and educator recently. Zach writes and speaks openly about awakening one’s purpose. He has published some great articles in the Huffington Post as well as on his blog, Purpose Speaks. His message is mainly “why does this matter?”, more specifically “why does what I’m doing matter right now?”

Coming down from the energy of the Izzy Gala, combined with speaking to Zach on this topic, and being super peanut-butter-and-jealous of Norma, my bucket list was born. It was a way to reconcile the nagging thought that time could be* running out.

*I purposely said “could be” instead of “is” because no one knows when their story eneds. For all I know, I can live with cancer for 10’s of years or a freak sinkhole could form around my bed and I could fall in and die without warning (for real THIS HAPPENED in Florida in 2013). I’m not Nostradamus therefore I have no business agonizing over how much time I ultimately have on this earth. It doesn’t really matter. What matters is what I’m doing right now.

So back to the bucket list. Or perhaps a more appropriate name would just be: Joyful Opportunities. A collection of low stress, high intrinsic reward ideas to pepper into my daily life as I see fit.

You may be wondering: “Jess, what’s are these “joyful opportunities” you speak of?!”

I’ve opted to keep my list to myself for a few reasons, although I will share a few examples to demonstrate my pattern of thinking. First, it’s highly personal and although my list is pretty vanilla, I’m not inviting others to weigh in on what I find meaningful to me. Secondly, this should be a low-pressure endeavor. By putting such goals in a public forum I may feel more stress to have to achieve them. These joyful opportunities are to serve as rainbow sprinkles on an already fulfilling life, not check boxes on a to-do list. I’d rather keep the full list between me and the pages of my journal.

(P.S. Steph Frazitta, if you’re reading this, my list lives in the fresh pages of the new journal you gifted to me. I couldn’t think of a better home for it.)

I will say that I found my goals falling into three overarching themes: 1.) Travel, 2.) Things I want to create, 3.) Things I want to do for others. (and as a byproduct of all themes, 4.) Things I want to eat, nom nom nom.)

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I acknowledge that I won’t do everything that I wrote in my journal but I was fairly realistic and simple with the experiences I hope to have, so much of it is doable. One example that I am willing to share is something I hope to do this weekend:

  •  Bake a lattice top apple pie from scratch.

I chose this experience because it’s one of those things that “matters now”. Baking to me is calming, low-stress, productive, and requires you to be in the moment. It allows me to share with others and quietly create something beautiful (hopefully) and delicious (hopefully).

Sure I have more adventurous experiences on my list and pie might sound boring but again it is an intentional endeavor and matters to me in this moment.

I’ll end on a spoiler alert: sky diving, bungee jumping, and freebasing did not make the list. Anyone who knows me should not be shocked by this.

Enjoy the long weekend everyone! Be sure to fit in moments for yourself where the joy to stress ratio isn’t too skewed in the stress direction.

The gift of momentary inner peace

Yesterday after chemo, I officially had no use for the PICC line and it was pulled from my arm. It didn’t hurt, actually, it felt like a long piece of wet spaghetti slide out from under my skin. Within seconds I was free. Free from the tubes, the daily saline and heparin flushes, the sickening smell of alcohol wipes. My arm could just be my arm and a shower no longer had to involve a sandwich bag and medical tape.

After work today I was fortunate to have one of those crystal moments of clarity where nothing serious mattered. There was no fear, no countdowns until something unpleasant ends, and thankfully no overwhelming nausea or exhaustion. I mean, all of those things exist steadily in my life, sure, but they were out of my head at least momentarily because yesterday’s PICC pull was symbolic. It was freedom.

With my new found “freedom”, I stopped home briefly, threw on a bathing suit and charged to the beach. The 80 plus degree weather at 6pm was certainly a gift as I was determined to get in the water. The waves were huge and crashed around me. The water was chilly but not biting, typical Atlantic in August. I eventually just sat down where the waves calmed and met the sand and let the water wash over me. I soaked in the smell of the ocean, let drifting seaweed cover my lap, and watched the searats sea gulls scavenge.

To put it not-so eloquently- I was happier than a pig in shit.

(This also resulted in about 3 lbs of sand in my bathing suit bottom when I got home soooo, souvenier?)

Now you may be asking yourselves, Jessica- why are you going to such great lengths to describe an incredibly average evening at the beach? Well friends, because I was denied a true summer. The powers that be filled this summer with hospitals and limitations. In short, more days than not were a total suckfest. I say this not necessarily to dwell on the nightmare that was but to highlight a single evening that brought pure, natural joy.

Tomorrow or the next day I’ll worry again. I’ll drag my feet to the hospital on Monday to add to the collection of scars for another port placement. I’ll begrudgingly sit through another chemo infusion on Thursday. I’ll take things for granted. I’ll continue to yell expletives through closed windows on the highway at oblivious fellow motorists… We’re only human right?

But for tonight tonight, I was cut a break. Nothing in the world stopped me digging my swollen ass feet into the sand, cracking the binding of a new book, and drowning out the world as the waves collided.

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Thank you universe for this taste of summer and utter peace.

 


I dig my toes into the sand. The ocean looks like a thousand diamonds strewn across a blue blanket. I lean against the wind, pretend that I am weightless and in this moment I am happy
-Incubus

Cautiously Optimistic

Chemocation, oh sweet chemocation. You sure have been good to me.

Since holding the Taxol my hands have returned to their original size. My appetite is much improved and the consistent nausea is all but gone.

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I am grateful for this break to rebuild my body as it has been taken a slow beating over time.

Well folks, let the good times roll because we have decided to continue to hold Taxol and only pursue Avastin for the foreseeable future. I believe I touched on this a few weeks back when I mentioned that we would do a CT scan and “re-evaluate” come summertime.

Ultimately it seemed silly to go back on Taxol for one cycle knowing we may hold it again shortly after. So here is the new plan-

  • Avastin (the antibody) infusion once every three weeks
  • Check up with the oncologist every six weeks
  • CT Scan on May 13th

If the scan shows improvement or at least no new disease, we can stick with this plan. Otherwise, I have the option to go back on Taxol. In any case, there is really no harm in just seeing if Avastin could be enough to keep me well.

One might be asking, “if Taxol has been working, why would you voluntarily drop it?”

My answer lies in faith and trust. I have faith that Avastin (alongside nourishing food/exercise/holistic practices) could be enough to give me the quality of life we have been striving for and slowly achieving after all of this time. I have trust that should this plan reach a point where is must change, we have safety nets in place. As Mom so perfectly stated today, it is perfectly okay to be cautiously optimistic.

So with that, let’s get excited for what is to come. Hopefully improved health, a new home, and a fresh chapter.

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Twenty-Eight

As of yesterday I am officially 28 years of age and it feels…pretty good, actually.

Some people hate their birthdays. Understandably comparing carefree youth with bills and perpetual acid reflux would sour anyone on getting older. Being that I am only 28, I am not a wise old owl in the position to tell anyone how to feel about birthdays but I am happy to share with you how I have come to regard my own.

From the age of 24 my body has been forced to share space with cancer- an asshole roommate that doesn’t pay rent and ignores eviction notices. I’m not one for focusing on survival rates and cancer stats because they’re not conducive to a positive frame of mind. Let’s just say, the stats are not typically in the favor of women with late stage ovarian cancer. That said, every birthday after 24 is more important than the last. Each passing January 4th is a trophy. It is a symbol that cancer isn’t winning.

Hey cancer- go kick rocks, I’m racking up birthdays here.

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On Sunday my parents passed through Providence for birthday lunch at Red Stripe. Anyone that knows Providence well can appreciate that a chilly-day calls for Red Stripe tomato soup and grilled cheese (with pesto, pear, and prosciutto…nom nom nom). They also kindly treated me with gorgeous flowers and a fruit tart. It was a really nice time to catch up with one another. Who better to kick off your birthday with than the folks that were there since the beginning- you know, that day when the stork dropped me off at their doorstep.

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Celebrations will resume this weekend but my actual birthday was just a quiet day at work followed by a quiet evening. Call me boring but after all of the fun and travel surrounding December’s holidays I’m happy to stay put and have some downtime. The festivities will resume this weekend with friends.

I was so touched by all of the phone calls, text messages, emails and facebook well-wishes yesterday! I am a very lucky girl to know so many thoughtful people.

Reading all of the kind birthday messages left me feeling like Ron Swanson on Snake Juice. THANK YOUUUUU!!!

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Centering mind & body with family & pie

I hope that everyone enjoyed their Thanksgiving holiday! Hopefully you did not have to rush off to work just yet (sorry Jacque! Retail is a buzz kill).

Thanksgiving this year was different than usual. Because I was scheduled to receive chemo the day after Thanksgiving, it would just be too much for me to drive back to Torrington and home again in 24 hours. Despite the gracious offer to join my cousins, my parents and I had a modified low-key Thanksgiving together on the Cape. We had a phenomenal four course traditional meal at the Daniel Webster Inn. Afterward, my mom and I whipped up a delicious apple pie and a loaf of banana bread using the secret family recipe. I have yet to eat banana bread that rivals my mother’s so it was nice to share this piece of our family history with her.

We ended the night with a marathon of Rummikub. To keep things interesting, I forced my parents to adopt silly rules and claimed them to be “new house rules”. This involved making by parents flap their arms like birds and yell “caw-caw, caw-caw!” whenever they had two tiles remaining.

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I adore my family and do not get to see them often as we are a bit spread out in a few states. As much as I would have liked to share this holiday with my extended family I think it was in my best interest to have a quiet break from life for a couple days in Mashpee. I was able to decompress and recenter myself. I can honestly say I feel much better than when I last wrote.

As I mentioned, today began yet another new cycle of chemo. I received both Taxol and Avastin. I am thrilled that W&I was able to fit me for an early afternoon infusion so that I did not have to rush back from the Cape early in the morning.

**Bonus** There was a therapy dog today! So many kisses and snuggles were had by all!

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Today I receive the updated CA-125. The numbers came back as just over 600, meaning it has doubled since the last reading. Considering the infection that I’ve been fending off, stress, and feeling rundown I am not at all surprised that my numbers shot up. That said, I’m not upset either (and no, this isn’t one of those times where I’m putting on a brave face but secretly sad on the inside. I’m very legitimately okay with this). I chalk this one up to a ‘not-great reading’ and hope that my body is in better condition for the next one.

In the interest of remaining focused on a more positive frame of mind, I want to share a gift from one of my students:

(I appreciate Kim providing me written consent to share her name as well as this gift with you.)

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Relay for Life 2015- Nelly (left), Kim (center), Me (right)

The context surrounding this gift is that before Kim became my advisee, we had crossed paths through Relay for Life and the Izzy Foundation. We bonded over our common experience of being young with cancer and that evolved into her joining my caseload in Advising. She is a stellar student and has a big heart for those around her. I can happily say that she is now cancer-free.

Through Kim, I met another wonderful girl named Nelly. Nelly was a patient at Hasbro with Kim and they became the best of friends under horrible circumstances. Nelly had been fighting Ewing Sarcoma but her suffering came to an end last weekend when she earned her angel wings.

Kim was the first to share the news with me and all weekend I worried about her. When someone close to you passes it is quite obviously devastating. When someone close to you passes of a disease you can relate to there are complex levels of emotion- fear, anger, mourning, survivor’s guilt, etc. It can be hard for some to process.

On Monday afternoon I returned from lunch to find a purple gift bag on my office chair. It contained a card and the framed picture above. Kim had written on every square inch of this card. It then dawned on me that while I was worried all weekend about her, she was also concerned for me.

Below is an excerpt from her card. It helped me to find perspective and I think it can speak to all of us on some level:

“I made this frame myself. There are many flaws and even some scratches, but they represent scars. When I first made this frame, it gave me issues, so I re-did part of it. I didn’t start new because I felt as though the scars (scratches) tell a story, just as all of our do. I kept it like this to show how perfection isn’t everything. Our lives are far from perfect, but we still manage to survive and get through every day.”

I think we can agree that my student is wise beyond her years. There are no accidents in life and this card arrived at a moment when I needed an influx of reminders that it’s okay not feel strong all the time. Beauty still exists within our imperfect worlds.

I consider myself so lucky to work with students with such heart. When people say to me: “I don’t know how you work through all of this!” I wish I could let them be flies on the wall for these kinds of moments packed with such genuine human connectedness.

So in short (HA! Right…) I feel that I am slowly returning to a more centered frame of mind. I am not currently feeling the stress and sadness that lingered over the past few days and I am getting excited for the weeks to come both in and out of work.

Cheers friends, have a happy and safe weekend!

ENJOY ALL OF THOSE LEFTOVER TREATS!

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Dear former self…

Three years. If you can believe it, I have now been treated for cancer for nearly three years. In 20 days another canceriversary will come and go. I am still living with disease, yes. But I am still very much alive and thriving.

The weeks leading up to the anniversary of the cancer diagnosis have me feeling reflective. It brings about strong feelings but not the types of feelings that one may expect. I probably should be more angry that this happened, but as I’ve said before I’m just not. Sure, cancer isn’t fair, it isn’t right, it isn’t deserved- it just is. So instead- look at the mountains we have moved. Look how far we (yes, not just me) have come together since that horrible day in November.

I wish the terrified 24 year old girl in the hospital bed at Charlotte Hungerford could have looked into a crystal ball and saw herself now. At that time I thought nothing could ever be the same. I thought that I’d be let go from my dream job, unable to maintain a romantic relationship, unable to see the world, stripped of all independence. Although there have been many points in the last few years when I’ve been forced to hit pause or slow down, I’ve never been fully stopped.

After nearly three years with cancer I think it’s important to reflect less on what was lost and more on what is:

  • This girl with cancer can work full time, even through weekly chemo.
  • This girl with cancer can find a boyfriend and build a relationship surrounded by unconditional love
  • This girl with cancer can educate students on their academic paths and help them follow their passions.
  • This girl with cancer can give presentations and tell multiple corny jokes in the process.
  • This girl with cancer can articulate her thoughts through writing
  • This girl with cancer can sign up for a 3 hour DDP yoga workshop on a whim (No, seriously. Fellow 1990’s WWF fans, this is not a joke)
  • This girl with cancer can cook for herself…when she feels like it.
  • This girl with cancer can clean her apartment…again, when she feels like it.
  • This girl with cancer can co-advise Colleges Against Cancer to support students touched by illness
  • This girl with cancer can travel out of the country on a (desperately needed) tropical vacation with said boyfriend (who also desperately deserves a vacation)
  • This girl with cancer can crush dead lifts and squats (with lots of encouragement from Weese Fitness)
  • This girl with cancer can travel to Chicago to attend the National Collegiate Honors Council conference
  • This girl with cancer can band together with friends and family and raise a crap-ton of money for the National Ovarian Cancer Coalition
  • This girl with cancer can poke fun at her buzz cut and dress up as 2007 meltdown Britney Spears for Halloween (and dance the night away!)
  • This girl with cancer can volunteer at a children’s hospital to support other families facing illness
  • This girl with cancer can suck down a cocktail (occasionally) with her favorite nurse
  • This girl with cancer can speak honestly about her experience in a public forum
  • This girl with cancer can binge watch seven seasons of Parks and Rec without shame or regret
  • This girl with cancer can find her voice
  • This girl with cancer can accept that it is okay to ask for and accept help from loved ones (even if it kills her)
  • This girl with cancer can accept that she is not superwoman and cannot do it all, and that’s okay (even if it kills her x2)

My understanding of cancer is not black and white. It has been a continuum of ups and downs, struggles and successes. I accept that I cannot be everything to everyone. I accept that I have limitations. I accept that I may drop the ball or have a bad day, or week, or month. But every new day on this green earth brings another set of accomplishments.

Even if the list above was more like:

  • This girl with cancer can binge watch seven seasons of Parks and Rec because it makes her smile (yep using the same example. It’s that special to me.)
  • This girl with cancer successfully had a bm after surgery, finally (I’m not sorry, this is a real struggle SO real for many)
  • This girl with cancer had an appetite today and ate half a bagel and some peaches!

…it would still be a list of accomplishments from each and every day that something improved in the slightest.

So allow me to please hop in the Delorean and travel back in time to my former, newly diagnosed, self-

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Dear 24 year old Jess Sultaire,

It’s going to be okay. Not because I know the outcome of this disease but because I know that the life you will live over the next three years will be full of far more successes than failures. The life you will live beyond the next three years will challenge you immensely and be one that brings you joy and pride. Hang in there kid.

Love always,

Jess Sultaire of the past and future

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