Tag Archives: cancer

There’s no place like home (even if you’ve only seen it once before)

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We are approaching one week since I have been discharged from the hospital. This is (sadly) shattering my record from the past month of yo-yo hospitalizations.

Initially, I thought it would be uncomfortable leaving the hospital and moving into the new place. I didn’t even say goodbye to my old apartment. Like magic, with the help of a lot of friend/elves, I was just moved. Luckily the new house is a great place to recover and slowly but surely Cory and I are making it into a home.

What a stress-free environment. It is this little house with a perfect back yard and a garden. There are constant sightings of vibrant cardinals, bees, and hummingbirds. This morning I took my yoga mat into the grass and did some makeshift gentle yoga/stretching to get my body moving (after a month of being nearly sedentary). A bright red cardinal was perched on the tree above me the entire time. I couldn’t possibly be more “one with nature” in this moment unless I transformed into Bear Grylls and was dumped out of a plane into the Amazon.

Overall, my experience home has been the right prescription emotionally. I love our little town, the house we’re renting is comfortable and coming together, and my roommate is pretty easy on the eyes ;).

Since I didn’t actually write about getting discharged, I’ll keep it brief and stick to the important bits. They took incredibly good care of me there and kept the NG tube in up until about 30 mins before I left to be as precautionary as possible. But at some point your guts are going to do what they’re going to do and Dr. Robison felt it was best to get one more round of chemo in the hospital then go home and be normal*.

*”Normal”- not to be confused with ACTUAL normal living, but operating in a way that makes you feel somewhat free and human. Let’s call it normal light.

Going home was the best gift and the correct decision at that point. Dr. Robison also knows me all too well and probably anticipated that I would try to go back to work too soon. Just like a surgery, the body needs time to heal and repair itself especially after the added trauma of septic shock. That said, until I’m medically cleared I will be home for a little while and fondly thinking of my friends at Bryant from afar.

Unlike other discharges from bowel obstructions I’ve had, this time I was sent home having not even advanced to clear liquids. The only thing by mouth that I had in the hospital were Dum Dum lollipops (thanks to Sheila and Shakay for supplying). No, this time we were going to to sllllooooowwwwwwwwww as molasses to prevent ending right back up in the ER yet again. For now I’m still on Total Parenteral Nutrition (TPN) where I receive all of the calories and nutrients I need for the day over a 12 hour period right into the blood stream through my port. I’ve been supplementing this with tiny amounts (2-4 oz.) of watermelon Italian ice to reintroduce something into my system by mouth but that’s it.

Starting tomorrow, with the blessings of Sheila/my case manager/dietician, I am going to try small amounts of blended soups (like butternut squash) and pureed foods. Stocking up on baby food basically. I was advised to listen to my body and slowly reintroduce foods into my diet working up to solids (low in insoluble fiber). I miss real food but we are getting there slowly.

You can imagine how brutal it is when Cory (a very talented cook) is making dinner for himself. I awkwardly ask him to let me smell it and pretty regularly shove my nose in the direction of his food to at least pretend like I know what it tastes like.

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But Cory isn’t the only wizard in the kitchen. Watch the TPN master prep tonight’s dinner (with the help of some “muscle” to spike the bag). I made this video to take some of the mystery out of what is actually sustaining me and how I manage it (and cranked up the speed 15x as to not kill you with boredom).

What you’re watching:

  • Sterilizing pretty much everything with alcohol wipes
  • Injecting the TPN bag with additional vitamins and Zantac
  • Having Cory spike the bag because it’s not easy. You really need to jam it in there.
  • Hooking up the tubing to the bag and pump and priming the tubing to push out any air in the line.
  • Sterilizing the end of my already accessed port (the little tube hanging from my chest) and flushing it with saline.
  • Connecting the primed line to the port tubing and starting the pump. It’s all pre-programed so all I need to do is sit back and let dinner run through my bloodstream for the next 12 hours.

What you don’t see: 

  • The big white bag stays refrigerated but needs to be left out for about 2 hours prior to use.
  • I washed my hands thoroughly before starting the process, promise.

 

So what’s next?

Chemotherapy continues on Thursday bright and early in Providence. This is a Taxol only week so it shouldn’t be too bad. Oh by the way we are back on the weekly chemo regimen- every Thursday now. No breaks, no week off, no chemocation. We can’t afford to not be aggressive after all of this hospital business.

Put on your game faces folks.

As always I will keep you posted with a progress report. Thanks for continuing to send warm thoughts and wishes for improved health 🙂

I hope everyone is enjoying this gorgeous June weather and since I cannot- please eat double at barbecues and have some sort of boozy frozen drink on my behalf. (nom nom nom, in spirit).

❤

 

Chemocationing & Making MOVES

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There are three major things that I want to talk about: one piece of news is “eh”, the other is good, and the last is fantastical. Let’s dive in in that order and get pumped up.

 

1.) CA-125

My CA-125 was tested this week and made about a 300 unit jump to the mid 700’s. Not surprising considering the inflammation that likely exists in my body post bowel obstruction. Also my hands have been pretty swollen recently so that never helps the numbers either.

 

Overall I’m not concerned right now. I’m going to start taking the steroid Decadron regularly and see if that helps.

 

2.) Chemocation!

Since I have become “Mr. Balloon hands” we decided that a little break from chemo could be beneficial. I did receive Avastin as scheduled today but I didn’t have to get Taxol. I’ll also have the next two weeks off from it as well. Woo hoo!!!

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and the best for last…

3.) Roommate

I am the most thrilled to share that as of June 1st Cory and I are going to be roommates! (He hates it when I call him that)

Let me rephrase- we are going to be venturing into a new and exciting chapter of our relationship as we just deposited on a house for rent in Pawcatuck, CT. I couldn’t be happier. The house is everything we wanted and more, it’s just 2 minutes down the road from downtown Westerly, 15 minutes from Misquamicut beach, and our landlord is incredibly kind and down to earth. The house is also a commutable distance to both of our jobs so aside from a longer drive, no job sacrifices had to be made.

Finding this house this week was especially timely because it is also our two year anniversary. I am grateful every single day for Sam Favata introducing us at that beer fest. I had no idea on that day I would find one of the greatest support systems on the planet. Remember- I was already very much cancer-fied when Cory met me and he still signed up for this wild journey in spite of it. We have faced a lot as a couple in dealing with this illness and the relationship hasn’t wavered.

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I look forward to building a home life together which includes but is not limited to: Back yard BBQ’s, Cory cooking amazing food, eating said amazing food,  aggressively competitive board game nights and a lot more Nerf wars (I think we’re actually children).

 

That’s all for now! I’m always happy when I can share some positive updates. I hope everyone has a delightful weekend 🙂

 

 

Maximizing Chemocation

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As I sip on a delicious Rhody from Vanuatu Coffee Roasters I soak in the last 40 minutes of normalcy before heading into a new chemo cycle. Today is the big one- Taxol and Avastin. I expect to be pretty beat this weekend but as always I am hoping for the best.

To quickly recap last week’s chemocation I REALLY packed it in. I joined Aaron, the Director of Advising, for the 2016 NACADA Region 1 Conference in Portland, Maine. It is always refreshing to see what other schools are up to, absorb new best practices, discuss issues in higher education, and to also see what we’re doing well. As my Instagram account reflected, Aaron and I were pretty damn gluttonous in Portland. You just can’t not be. Our highlight was certainly tasting the tomato fennel soup, poutine, and salted caramel milkshake from Duck Fat.

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Needless to say, my return home has resulted in compensating with a lot  of fruits and vegetables.

Just when I returned home I pretty much unpacked just to pack again. My handsome, intelligent, mancrush everyday- Cory Tysoe had a birthday! He has now reached the ripe age of 28 which means that I am officially no longer a cougar (until January when I turn 29). To celebrate we utilized a holiday present from my parents and headed to Vermont to Mt. Snow. Unfortunately the weather wasn’t totally cooperative so Cory didn’t get much time on the mountain before getting pelted by hail.

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We spent a good majority of our time testing our relationship through Farkle and Risk. Anyone who knows me knows that I am generally not at all competitive. Like for real I bowled a forty the other day. FORTY. And that was better than expected. That said, there are a few things for which I am fiercely competitive- Scrabble, Risk, and Farkle.

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I was happy to cozy up by the fireplace and toss some dice around while ruthlessly talking shit to each other although next year I may join the toddlers on the bunny hill and give skiing a shot. We’ll see…

So that brings us to St. Patrick’s day, yesterday. Sarah, my former coworker Krystal, and I threw a St. Patty’s party in the Izzy Room at Hasbro Children’s Hospital. We decked out the room in festive green, Bob and Timmy’s donated SIX pizzas, and we offered crafts and cookie decorating. Although the party only yielded three physical attendees I would still call it a success. There were several children that were too sick or not allowed to leave their rooms. What we ended up doing was essentially creating a “party on the go”. We delivered pizza and some craft supplies to a mother of an 11 month old in the PIC unit. We also packed up pizza, cookies, st. patty’s swag, and crafts for parents and nurses to bring back to the rooms of families that wanted to be at the party but couldn’t. In any case the Izzy Foundation was able to bring a little cheer to people going through tough time.

The three of us had a blast 🙂

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^ Mine is the one with the fuzzy eyebrows 

Last but not least, I met with Dr. Robison yesterday for the usual chemo exam. She was pleased with the outcome of using the steroid and gave me the green light to keep taking it in line with the chemo cycles if it is helping.

We won’t have an updated CA125 until later today or Monday so I’m not sure where that stands right now but she said that if it made a significant jump upward she would be inclined to scan me. If it is a small increase or lower/unchanged the plan is to scan this summer as we previously discussed.

Soooooo that’s all folks.

I hope everyone has a safe and happy weekend!

 

 

 

ROID RAGE! (or responsible use…either one)

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Holy 180! Since I last wrote I feel like a totally different person. Mainly because I’m ‘roiding out right now.

Let’s be perfectly clear-

Not this kind of ‘roiding:

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More like starting a low-dose, short-term steroid treatment to curb concerns regarding fatigue/poor appetite/nausea/vomiting. Thanks to the brilliant Donna MacDonald, a case manager at WIH, we put into action a 10 day dose of Decadron (Dexamethasone). Decadron also helps to treat inflammation in the body which, if the CA-125 is any indication, I have a boat load of.

Sidenote: Doesn’t Decadron sound like the name of a fictional planet from some sort of Sci-Fi novel? It does to me. Oh well, I digress…

I am to take two pills in the morning for the first five days then will taper back to one pill in the morning for the remaining five days. So far the magic is working!

  • I haven’t thrown up once this weekend
  • My energy levels are unparalleled. I am usually clinging to life on Mondays, today I feel as if I slept 10 hours and drank a cup of coffee in comparison to the norm.
  • I’m hungry! The thought of food is enticing instead of stressful/nauseating. For lunch today I craved a balsamic-pesto-grilled chicken wrap and housed over half of it (which is substantial for my eating patterns of late).

It’s amazing what one simple change can make. It is really just a testament to the support at Women and Infant’s Hospital. Between Sheila (nurse navigator), Rosa (chemo infusion nurse), and Donna (case manager) they had three different reasonable recommendations to assist me in the nausea/vomiting/appetite issue. All three contacted my oncologist right away and have put plans into action. They’re the best. Seriously, people who are genuinely concerned and get shit done. Period.

I’m especially grateful for this help because yesterday was one of my best friend’s. Katie Carlson’s, baby shower. It meant the world to me to feel well enough to enjoy her special day. As you can imagine, it’s hard to stay present and soak in the special moments when you’re nauseated/throwing up/exhausted. I felt pretty optimal for most of yesterday and seeing this face (and belly) was perfect.

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Go team!

Make Plans and Cancel Them (Maybe)

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We measure wellness constantly. In my world this is mainly accomplished by making me hold my breath while being shoved through an oversized donut (CT scan) or sucking blood out of my veins by a professional vampire (phlebotomist). Just last week my primary care measured wellness using a battery of blood tests that lead me to believe that she thinks I’m malnourished. BUT in the encouraging words of my PCP: (*clears throat for best thick Russian accent) “Just LEEETLE beeet more protein. You be okay.”

Not a week has gone by in recent years where I didn’t have some kind of medical test keeping tabs on me. Are my CA-125 levels up? How are my blood counts? How big are those tumors?

It wasn’t until just today that I realized there is another test of wellness, albeit a very simple and unscientific test…

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My willingness and ability to make BIG plans and keep them.

Now I don’t mean dinner and drinks on a Tuesday night after work (although keeping real pants on after 5pm is a drag). I mean looking six months down the road and saying, “Well, heck yeah! I’m absolutely down to fly to Iceland and explore aimlessly.”

Not that Iceland is set in stone but I use it as an example, a benchmark really, for my confidence in my body’s ability to behave for more than 10 goddamn seconds at a time. There was a time, not long ago, that the thought of leaving the country with this illness terrified me. What if I have an intestinal obstruction? What if I’m too sick to stick to our plans? Straying far from Women and Infants, my medical security blanket, seemed impossible.

Just a year ago there were days where I wouldn’t even commit to going to a restaurant in anticipation of throwing up endlessly and/or having my stomach explode.

Now, I’m in a place where I feel well-enough, more often. Not great all the time, far from it. But well-enough to take greater control of my desires in life and the confidence to carry out those plans. So when Cory pitched the idea of researching Iceland, my first thought wasn’t “holy crap what will I do if I’m too sick?”, it was “holy crap I totally need to save every spare penny to make this happen.”

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One of the best pieces of advice that I have continually soaked in from other cancer crushers is “make plans and cancel them”. Look to the future, always, but give yourself permission to back-out without guilt if you get there and your body isn’t cooperating.

So aside from the tumor markers and scans, my newest (and possibly most important) measurement of wellness is the frequency and manner in which I look to the future and make big plans. To plan beyond the everyday is certainly indicative of a slow and steady increase in wellness, quality of life, and most of all- PROGRESS.

See you under the northern lights.

La Vida es Buena

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I have a lot to report on so you should probably grab a snack and a cocktail and get comfy.

So far 2016 has brought some great energy and experiences. I could probably ramble on for a few thousand words but you have lives to get back to so I’ll try to condense as much as possible.

 

Quick Thanks to Choose Hope Inc. for seeing Emily Nason sport their headband at the NOCC walk and reaching out to her. As a result of that they sent me a TON of merch and a beautiful handwritten card for encouragement. They are fantastic champions for cancer research and support so please check them out.

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Health Update:

Prior to departing for La República Dominicana, I received the BEST news that my CT scan was stable and one of the pelvic tumors had even reduced in size. It was like getting an elementary school report card with comments like “Your tumors have been very well behaved and much improved! Plays well with others.”

When I returned from vacation I had a routine check up with Dr. Robison. Much to my surprise she wanted to talk to me about next steps and potential treatment modification for the near future. So here is one possibility to consider:

-May-ish would mark the one year point of being on this treatment plan. She is going to scan me again around that time. If the scan is still stable (unchanged) or tumors are shrinking she is willing to let me make the decision to opt out of Taxol (the chemo part) and just do Avastin (the antibody) once every 3 weeks. That is an AMAZING prospect!

She is leaving this in my hands. We know Taxol works so if it would make me feel more secure to stay on it, that’s fine. From a quality of life perspective I’d be interested in testing the waters with just Avastin. If I become symptomatic again we can just throw me back on Taxol, no problem. She assured me that it would not impact Taxol’s ability to still work if I go off and on again if we needed to. Sounds pretty good to me! The next few months will be critical.

After this past scan I wasn’t even going to bother to ask about my CA-125 because I figured it would still be high. Sheila texted me today to let me know it went down from 785 to 723. What a pleasant surprise 🙂3478638

Vacation:

¡Ay dios mío! We had a REAL vacation! Cory and I spent the last week in Puerto Plata, Dominican Republic and it was 1000x better than I even imagined.

We initially hit a few snags. We had a flight from Providence to Newark that was delayed by several hours due to a mechanical issue. For that reason, we missed our connection in Newark to Puerto Plata and could not leave until the next day. After a lot of fighting with United Airlines (that had the most atrocious customer service) they begrudgingly sent us to Newark that day and put us up in the airport Ramada for the night with a couple food vouchers.

Thank GOODNESS I was with Cory who totally kept his cool because I was so frustrated with United I flew into a blind rage and had to walk away. To be clear, I have the true inability to “pop off” on others, especially people in service positions so “blind rage” translates to me hysterically crying and trying to pull it together crouched behind an ATM.

It wasn’t so much the disappointment about losing a day, it was truly the rude way in which we were spoken to and lack of problem solving on the part of United that drove me over the edge. The first woman we spoke to had an attiude that translated to “Well, not our fault. Go home.” Additionally, when I’m at the airport talking to United I should not have to CALL A CUSTOMER SERVICE NUMBER to resolve a problem only to be told that we shouldn’t be calling and need to talk to the ticket counter.

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On the flip side, Expedia’s customer service was unparalleled. I called while Cool-Calm-Collected-Cory dealt with United.

Expedia was totally apologetic and didn’t put the burden back on us. They not only called the resort for us but they also refunded us for the night we missed. They were unable to re-schedule our shuttle from the Puerto Plata airport to the resort so instead they gave us a $50 credit which was more then the value of the shuttle. After this experience I would 100% use Expedia again. Here’s to you Expedia-

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In a nutshell once we got there, the vacation was great. Our resort was small and had a nice community feel. We even made friends with a few of the other couples there. So I should thank Gabby, Alan, Nicole, Paul, Brian, Jen, Rob and Rachel for enhancing an already great experience (and being the best cheer section- explanation to come).

Highlights:

  • The fact that we asked of a king sized bed but were instead given two queens pushed together to form a MEGA BED! Sprawling commence! Cory hated it, I loved it.

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  • They also stocked the rooms with a gallon of water every day so people wouldn’t get sick from the tap water. Restaurants and bars also always had water from a jug, never from the tap.
  • Parasailing for the first time. How unreal! Incredible views of crystal clear ocean, mountains, and reefs. We were the only ones that went at that time so we had an extra long ride. I’d say we were in the air for at least 30 mins. I must do this again stat. I highly recommend the Seapro company for anyone visiting Playa Dorada in the near future.
  • Getting a $10 massage on the beach while I sipped on a piña colada and stared at the ocean.
  • Full day catamaran trip to two reefs in Sosúa for snorkling
    • Side note: It is the beginning of the whale migration! We not only spotted the first whale of the season but it came right up to our boat. It was like standing next to a school bus. Simply breathtaking.
    • Below are Cory and I soaking in the sun on the front netting of the catamaran on our return trip back to Playa Dorada:

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  • Sea kayaking (total redemption from my last attempt in Australia when Matty K and I capsized and nearly drowned)
  • Winning 2nd place and a bottle of rum in the Blue Bay Villas Doradas Ideal Couple Contest with Cory. Basically we were dragged on stage and had to do four “double dare” like challenges. It was a close race but we lost ever so slightly to a Slovenian couple. I thought we crushed it. I was also so happy to look into the audience and realize our new friends were all there cheering us on. Totally unlike Cory and I to do something like this but it was ridiculous and memorable for sure.

Yes, photos exist. Will I be posting them? Jury is still out on that one.

  • Our general routine of wake up, read a little and sip on a coffee by the spa pool, breakfast buffet (with our favorite waiter Rafael), beach time until 2 or 3ish, open air lunch, pool time/swim up bar/contests/activities around the pool until about 5:30, nap, dinner, show, bed. (So remind me again why we came home? Do advising positions exist in Puerto Plata? Surely they need a lighting salesman with all of those resorts. Hmm- Cory- let’s bone up on our Español and rethink our living arrangements…)

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  • The service as a whole- The Animación Crew (entertainment crew) was amazing. They constantly were hosting games, contests, dancing, and engaging all of the guests. Huge shout out to our boy Alfredo (the most enthusiastic dancer I’ve ever seen), Coca Cola, James Bond, Veronica, and Barbie. It felt nice that everyone from the entertainment crew to the servers to the bartenders got to know you personally.
Our boy Rafael
…and our not so secret handshake

Cory has at least 700 pictures/videos to sort through so unfortunately I don’t have many more to post right now but hopefully this will give you a little taste of the paradise we were so fortunate to experience over the past week.

I’m oozing with gratitude to be in a position to have this experience. I feel that my batteries are totally recharged, I am relaxed, and I am ready to take on the next few months.

¡Adios amigos y amigas!

 

Twenty-Eight

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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

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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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Three Years

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About 20 days ago I posted a letter to myself in the form of ‘Dear Former Self’. It was an emotionally charged tribute to success in light of illness caught at a moment when I actually felt like I had my shit together. I meant every word of it and I am glad that ’20 days ago’ Jessica wrote it because ‘today Jessica’ really needed a reminder.

Today marks exactly three years since the diagnosis that re-charted my future. I can and do frame this anniversary as a celebration of life and thriving in spite of adversity. Honestly though, ‘today Jessica’ and ‘yesterday Jessica’, and ‘day before that Jessica’ are feeling pretty run down. Exacerbated by another week of chemo and an antibiotic in my system, I feel weak and worn out. My body aches, I’m exhausted, and my stomach is torn to shreds. Moreover, strong emotions float to the surface of my mind.

I left work a little early, curled up with my favorite blankets and watched a mind-numbing amount of Netflix. It turns out this was the best decision I could have made to honor myself today.

 

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(My friend Kerri emailed this to me at work today and it couldn’t have been more well timed)

If I try to pull myself up by my bootstraps any harder I’m going to put my entire foot through the sole. So today, I take the advice of my parents, Cory, my friends, co-workers (and all of the other highly perceptive people that have nudged me to be kinder to myself).

On this third anniversary I do three things:

1.) Re-read ‘Dear former self’ and pat myself on the back for making it this far in spite of crummy circumstances.

2.) Allow myself to be sad (for now). This disease has a thousand silver linings but actually replaying delivery of diagnosis in my mind is incredibly painful and can be difficult to ignore. If only I could use ‘chemo brain’ to selectively forget that moment.

3.) I rest. I shut off my work email, silence my phone, and just allow my body to be still and comfortable. It is working on overdrive to fight the disease and super-overdrive to keep up with the unfair demands I put on it constantly.

 

On a final note, I cannot thank everyone enough that has stood by me over a long three year period of highs and lows. Through the fear, successes, disappointment, and hopeful moments I have never once felt truly alone. I thank you for every pep talk, prayer, or kind “how are you holding up?” check in.

From the bottom of my heart,

Thank-you 

 

Dear former self…

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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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