Maximizing Chemocation

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!

 

 

 

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Make Plans and Cancel Them (Maybe)

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

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.

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!

 

SO many updates (and lots of pictures!)

Wow, so much to recap. I haven’t been in a writing mood as of late, which is uncharacteristic of me. As of late I have been incredibly fatigued so any free chance to just zone out and rest is usually spent in front of Netflix or a book.

California Trip:

This is VERY late but I first want to talk about the trip that I took to California a couple weeks ago to visit my brother and his “west coast family”. I was in San Jose for 5 days and I would say that it was the most relaxed and zen I have been in months. My brother, his beautiful girlfriend Lacey, and his friends went out of their way to make sure that I had the best experience possible. I felt like an absolute princess.

Adam’s house, first of all, is gorgeous. I am so proud of this milestone in his life. Also- check out this guest room! (deco credit actually goes to his girlfriend since Adam may or may not have had a minor Bed, Bath and Beyond meltdown)

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We really packed in the activities! Adam was sure to take Lacey and I to one of my favorite restaurants in Capitola, Shadowbrook Restaurant. As seen below (in a picture borrowed from the Shadowbrook website) the restaurant is situated on a steep hill and there is a cable car that can take you down to the restaurant. The food is amazing and we feasted on lobster, scallops, steak, and wine. We were also laughing so hard the entire night (mostly due to my brother’s corny temperature jokes) that we were incapable of taking a normal picture.

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In addition to an extravagant dinner I was also treated to club seats at the Giants v. Cardinals game the next day in San Francisco (thanks to Lacey’s company). The weather was beautiful and we had a blast together. I cannot imagine a more beautiful stadium. Baseball to your left, sailboats to your right, hot dog down the gullet.

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The next day was pretty laid back. Adam’s adopted family Tina and Sumi hosted a seafood boil at their house. So the vast majority of the day was spent lounging in the pool and eating our weight in crab, shrimp, corn, potatoes, and other delights.

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My last full day was sadly spent without my brother since he was busy being a star athlete/drunk person babysitter at a charity golf tournament. His girlfriend was kind enough to take the day off from work to keep me company. I’m pretty sure our terrific lady day surpassed Adam’s golf tourney. We had lunch, got massages, and had a glass of vino in an open air wine bar in Santana Row. Lacey made sure that my last day was entertaining and memorable. I don’t think I stopped laughing the entire day.

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All activities aside some of my favorite parts of the trip were simply spending silly moments with my brother whether it be driving in the car or watching garbage tv in our jammies. We live over 3000 miles apart but our relationship as siblings is always loving and steady. The majority of our time was spent joking, laughing, and watching old WWF Royal Rumbles from the 1990’s (no joke- amazing). I will admit I had one small vulnerable moment when I was reflecting on my health challenges and Adam stopped, gave me a bear hug, and reassured me that I was doing better than I feel I am in the moment. I couldn’t ask for a better sibling, friend, and personal comedian.

I want to thank EVERYONE on the west coast that came out to visit, took time out from their busy schedules for outings, and made sure I was happy and comfortable.

Coming home was challenging. Internally I left Adam’s car and entered the San Jose airport kicking and screaming.

Favata-Farrell Wedding:

The weekend following vacation was another busy one. Sam Favata (my longtime friend, Cory’s Sigma Nu brother, and the person responsible for introducing me to Cory) married his college sweetheart, Alicia. The wedding was a blast! Alicia and Sam couldn’t possibly look happier. The music was amazing and as a result my feet were super swollen the next day from endless dancing.

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Congratulations Favata fam! I hope you are having a blast in St. Lucia!

Health Update:

So enough about recent activities. As you may remember from my previous entry my last blood test results were disappointing. Honestly, it upset me and I felt pretty down. It resulted in a frank conversation with my oncologist about expectations. The long and short of it is that I will be in some sort of treatment for the long haul. It doesn’t look like there will be an end to chemo anytime soon.

I had another blood test when I returned form Calfornia and not surprisingly (to me) it increased again. My last recorded CA-125 was 777.

777slider  Why can’t I get that lucky at Foxwoods?!

So the CA-125 was again not the most favorable but still didn’t go up enough to sound off any major alarms. We will stay the course with this treatment and only scan if it increases enough to cause concern for a third month in a row.

As my brother has reminded me- I cannot be a slave to the numbers and there are roughly a million reasons why it could have increased including the week off from chemo that I had for vacation (which I think was MUCH better for my soul and quite necessary). Again, disappointing news but it wasn’t my undoing this week. Let’s just hope for some sign, ANY sign, that we are moving in the right direction next month.

Other than test results I can report feeling extremely tired all the time. Much can be attributed to a combination of chemo, a high-volume time at work, travel, and what not. Every day this week (except for last night) I passed out on the couch for at least an hour after work before I could even make dinner. Last night I had steroids in me (a Taxol pre-drug) so I have unfortunately been awake for 26 hours and counting…

Everyone cringes when I talk about my fingernails but they are still incredibly sore. It can be best described as similar to the feeling of “the aftermath” of shutting your fingers in a drawer. What has helped tremendously is nightly soaking my nails in warm salt water, keeping them painted to hide the disgusting discoloration, keeping them short so they don’t catch on anything, and wearing rubber dish gloves while I wash dishes or clean my apartment. So far I have all 20 nails in tact. Fingers crossed, they stay where they belong.

2015 NOCC Walk:

We are 15 days away from the 2015 National Ovarian Cancer Coalition walk in Roger Williams park, Providence, RI. So far, thanks to your love and generosity, I have raised $1070 dollars!!!! This is amazing.

I also have an amazing team for the day of the walk. Thank you to those that have signed up so far: Stack Goldman, Michelle Fabs, Sarah Breen, Emily Nason, Kelly Blessing, and Brian Eastman! It is not too late to join this rag-tag group of misfits! If you would like to walk with us on Sunday, September 27th at 9:30am there is still plenty of time to sign up online through my donation page.

To those of you that have donated or shared my donation page, my heart is VERY full. Thank you SO much for your kindness. You have no idea how your donations will help to improve the lives and care of women like myself.

NOCC Walk- Jessica’s Personal Donation Page

I hope everyone has a great week 🙂