Remember when Christmas wasn’t ruined? HECK YEAH!

So how is everyone holding up post-Christmas/Hanukkah/Holiday madness? We good?

I hope everyone enjoyed some time off, spent quality time with their families, and had a chance to recharge their batteries (or in the case of the Blythe family, got new batteries from Tom Tom).

After my epic, amazing, Hanukkah with family in Connecticut I had to head back to the littlest of Rhodey’s for work on Christmas Eve. Believe it or not I had not one but two student appointments. I was shocked but it certainly helped to move the morning along. Around 11:30am, President Machtley got on the horn and announced that Bryant would be closing at noon (surprise!) and if our supervisors said it was okay, we could leave right then. I’m pretty sure we had the lights off and door locked by 11:32.

Later that evening I was taken in by my second family and spent Christmas Eve with Katie Carlson’s family. Now that I’ve spent Christmas with them, and am basically a cousin, I think it is overdue that I legally change my name to Jessica Gail Sultaire-Blythe-Carlson-Cunha-Hart-O’Hara-Shmase. It has a distinctive ring to it and will secure my place in future secret santa’s. But on a more serious note I am so thrilled to have been included in both the Cunha and Blythe Christmas parties. As always I was made to feel at home like part of the family. I appreciate the warmth and unnecessary gifts (that I love so much!).

Thank you Bear Family!

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The best gift of all was snugs with my love, Major. How hard do you think it is to steal a big, dumb, dog roughly the size of a lion? Hypothetically of course…

I would like to thank everyone else that kindly extended invitations to spend Christmas with them! It was incredibly thoughtful to think of this lil’ jewbie on Christmas.

On Christmas day I turned down the gracious invitations because I had something else in mind. The past two Christmas’ were soured by illness and surgery. I know what it feels like to be in the hospital on Christmas (see last year’s Christmas Entry: Bah Hum Bug). Jewish or not, it sucks. It’s depressing and isolating. So this Christmas I was determined to go back to the hospital so I decided to sled off of my roof…KIDDING!!!!!!! I asked to be a volunteer.

I was hoping to volunteer in women’s oncology but there really was nothing established that I could do. In the future I might try to develop something. This is something I need to remember to tell the oncology advisory council (oh yeah I do that too now. It’s pretty awesome. More on that later). So instead I turned to Dr. Robison and The Izzy Foundation.

The Izzy Foundation built a gorgeous family room on the 5th floor of Hasbro Children’s Hospital that they staff with volunteers regularly for maintenance and periodic activities. My experience there was great but certainly different than I had imagined. There were less children than I anticipated, I only came across 3 in the 4 hours I spent there. It was mostly parents and family that were tired, rundown, and in search of respite (and coffee). I made friends with a 9 year old name Kyle after making him a hot chocolate. He was in and out of the room throughout the day and I was always happy to see him return. He didn’t tell my why he was in the hospital, nor did I ask but it was refreshing to see a smiling face despite his circumstances. Kids are awesome in that way. No matter how sick they are, when push comes to shove they are just kids who laugh and smile and want to play.

Many parents reminded me of my own. Each one was eager to tell their story. They needed to be heard so I listened. Between the burst appendices, mystery diagnoses, flu’s and pneumonia’s, each person had a unique story to share. Each person was stoic and brave for their children but clearly internally exhausted and fearful. I didn’t do anything special that day. I just made sure the room was clean and that patients and families were comfortable but I felt that my time couldn’t possibly be better utilized on that day.

For privacy I did not take photos of the families but I did take some of the room when it wasn’t being used:

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I definitely enjoyed my interactions with the families at Hasbro and certainly intend on volunteering in the Izzy Room for the Izzy Foundation again soon.

On that note I’m off to Connecticut to see a certain, handsome, bearded fellow. Spoiler Alert: It’s Cory. Sorry to everyone that was hoping that I’m secretly dating Gandalf.

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Happy Challah-days!

Season’s Greetings my friends! I hope everyone in enjoying Hanukkah, about to enjoy Christmas, and having a general period of relaxation (or frantic last minute shopping…slackers).

I am pleased to say that despite the holiday season hustle and bustle, December has carried a slower pace. The semester has finished therefore my advisees have taken their finals and left school until the end of January. Grades are starting to trickle in so I cannot quite do all of my reports just yet. That being said work has momentarily slowed down…for now.

Between the trial and trying to keep up with life’s demands, responsibilities, and general fun I’m feeling pretty run down again. There is very little respite from the chemo and what goes along with it.

In an average week:

  • I will wake up 5-6 nights with acid reflux (many of those nights waking up because I’m choking on it)
  • I will have “stomach unpleasantness” (catch my drift?) 2-3 days per week with multiple episodes
  • 7 days per week my feet and ankles are so swollen that only certain shoes will fit. Forget about slippers with socks! One or the other. Fat feet will not allow it.
  • 7 days per week, fatigue. But who isn’t exhausted? You don’t need to be on chemo to feel that one.
  • 4-5 days per week, nausea.
  • 2-3 days per week, vomiting as a result of nausea.

Taking that into consideration, wanting to choke down these pills twice per day is to say the least a chore. Comparison: You went to a restaurant and got food poisoning then ate the leftovers the next day knowing full well that you would still have food poisoning. Not fun. Don’t like it. Don’t want it.

On the flip side, the treatment is working as far as we know from November’s scan. I know that I have previously stated that I am coming to terms with the fact that this is a slow process and I need to roll with it on the road to healing blah blah blah… but when I’m in a chemo slump I get cranky.

I would love a break for a few days. I am not entirely convinced that my side effects are severe enough (believe it or not) to warrant another chemo-cation but it is worth inquiring. My next CT scan is in 2 weeks and the next check up in Boston is in 3 weeks. If I see some more progress perhaps that will give me a little boost even if I can’t get a chemo-cation.

Universe, give me strength (mostly not to throw that goddamn palm pilot against the wall the next time its alarm sounds for my next dose).

Despite feeling run ragged, I can always count on my family to lift my spirits. Luckily, this past week was Hanukkah and I was able to take two days off of work to spend some quality time with my family back home in CT. Even better was that my brother Adam was able to fly in from California to join us this year. There are few people on this earth that can make me laugh harder than Adam so I knew the trip would be good for the soul.

Great food was had (Thanks everyone who brought something delicious to the Hanukkah party!), dreidel was played (I won me some laundry money!), and many laughs were shared.

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Cory received a “man crate” from Adam and Mom is here ^ clearly nailing this selfie.

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I started making candy dreidels for Hanukkah when I was 5…nearly 22 years later there is no end in sight.

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Cory, Adam, Uncle Mark, Phyllis, Tammy, and Aunt Sheila just shooting the shit. Fun fact, minutes later we started spinning dreidels and in an attempt to wow us with his amazing spin, Adam’s somehow bounced into the candle splashing wax everywhere and basically ruined Hanukkah for everyone, forever. (Kidding, love you brother)

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The kids table will forever be the kids table, even when we someday have kids.

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Cory survived the meeting of the big brother (and family) and I would say he passed the family approval test with flying colors. In fact, Adam and Cory got along a little too well. As a fun little way to bring us together I bought a few nerf guns thinking Adam, Cory and I could do some target practice in the basement. Within minutes of opening the box I quickly realized that an alliance was formed and I was the target. I suppose I had that coming. Anyone that knows Adam also knows that he wouldn’t resist the opportunity to shoot a sticky dart at my glasses. Sooo…that was fun. But on a serious note it was great to see everyone come together so naturally.

Even though this entry was full of complaints, it is clear that it is also full of a hell of a lot of joy. I am so thankful and grateful for my generous, loving, crazy family.

I hope everyone enjoys their holiday season and has a safe, happy, wonderful time with loved ones!

Mourning Alicia

I met Alicia in April in Las Vegas. We were sitting in a Cancer as Chronic session at the OMG 2014 conference for young people with cancer. When the facilitators asked if there are any questions I had stood up and asked them to address their experiences with clinical trials. Unfortunately, they never got around to addressing my concerns about clinical trials but Alicia did.

As I was getting up to leave when the session ended Alicia approached me and introduced herself. Alicia was close in age to me and from Toronto, Canada. She told me that she had advanced stage Ovarian Cancer and has done a number of different clinical trials between Canada and the US. She shared the ups and downs of many of the experimental treatments that she had undergone over the past months. This was around the time I had to make the decision to pursue the Pimasertib/SAR trial (the one that I am currently on). When I told her the decision I was faced with and what I knew she assured me that she had great results but unfortunately had to go off of the trial due to unrelated complications.

By the end of our conversation I felt comfortable with the decision to pursue this trial. It was as if she was divinely placed there to give me a sign that this was the right decision. It was reassurance, and warmth that gave me the courage to ultimately say yes to this opportunity that I so feared. I was leaning toward doing the trial on my way to Vegas but when I left there I was confident that I was making the right choice for my health.

In the months following the conference Alicia and I corresponded through Facebook. I could tell that her health was declining. She was in and out of the hospital with bowel obstructions amongst other issues. At the beginning of October she had kidney failure and her doctor gave her six months to live. Last month she moved into hospice care. I remember saying to my mom bluntly “I think Alicia is ready to die”. It was such a grim thought, but more grim was her reality. Her quality of life had deteriorated. Constant pain, not eating, being unable to take care of yourself? That is not how anyone should have to exist. That is sure as hell not how Alicia wanted to live from what I had gathered over the few months I corresponded with her.

Yesterday I hopped onto Facebook to see if her family had posted any updates on her progress, as I do periodicallyalicia. My heart sank as I read that she had passed away. She passed peacefully in her sleep surrounded by family, which is all one could ask for in that situation.

There are no winners and losers in chronic illness. You do everything you can physically, mentally and spiritually and that is all. Alicia was a remarkable woman and though our friendship was brief, the impact she had on me and my recovery was significant. It was jarring to learn of her passing, but I am relieved that she has found peace beyond the physical world.

Alicia Merchant- your influence, poise, and kindness will not be forgotten.

I am Thankful for a NORMAL Thanksgiving

I hope that everyone had a lovely thanksgiving! I was fortunate to be home in Torrington to spend the holiday with my family. By the time I arrived in Torrington, the city already looked like Frosty the Snowman had a big sneeze. We even had two massive tree branches fall from the weight of the snow.

The first snow is always to beautiful and picturesque. By the end of January I may need to go out of my way to witness a crime so that the Witness Protection Program could relocate me to a warmer climate. Extreme? We shall see…

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I thought that this Thanksgiving would be more emotionally charged but really it felt like any other holiday. It wasn’t this grim reminder of finding out that I had cancer. It was just Thanksgiving. Good old turkey-eating, pie-gorging, Scrabble playing Thanksgiving. This time last year I was preparing myself for yet another surgery so I was still in the midst of all consuming cancer world. I remember feeling this intense need for camaraderie with other cancer crushers. I do still need that in my life but not with the same immediacy as this time last year. It was quite honestly a relief to not experience this holiday with a black cloud looming over it.

The time I had off was perfect. My parents and I had mini-Thankgiving the night before actual Thanksgiving. Hence my mom’s delighted face as she rubbed seasoned butter underneath the bird’s skin. 2014-11-26 21.05.12(1)

We spent my first day home relaxing, cooking, baking, and playing games. It was nice to have leisure time with my parents and no where to go. Truth be told I spent about 85% of my 5 days at home unapologetically in my jammies.

On actual Thanksgiving we headed to my cousin Sara’s house for an incredible spread. She is just amazing from the food down to the decor of her home and table. I’m pretty sure that if you cut Sara open you’d find Pinterest boards instead of vital organs. It was perfect and I was so thrilled to share her and her fiance’s first Thanksgiving in their home.

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The only snag that day was on our up to Sara’s I was pretty nauseated. It only took a few bumps in the road before I was vomitting into the shopping bags that my dad luckily packed. When the snow melts in Litchfield someone is going to find a big ol’ bag of puke in the street. Sorry…

After the vomitting had subsided I had a nice empty stomach to fill up again on Thanksgiving food. In fear of another episode I didn’t over do it. (Unfortunately I DID overdo it the next day at lunch so again, puking commenced). How can a person have so much puke?! HOW?!

Well I would rather puke and feel relief than not and be nauseated. Damn you chemo.

On a less gross note, I got to reunite with my girl Jamie Anulewicz at where other than Twinco for breakfast. It felt wrong being there in the daylight, sober, amongst respectable people. The Thanksgiving football game we intended to go to was cancelled. We were hoping to see our old band director, mentor, friend, and resident bald guy- Mr. S. Wayne, if you’re reading this we missed you!!

I also hit the mean streets of Torrington with my wolfie pup Michelle. We felt that Dos Amigos was probably the most age appropriate place we could find short of crashing the Class of 2004 reunion. We had a margarita (sorry liver) and caught up. We have come a long way from binge drinking the night before Thanksgiving and eating the pancakes her mom would make us at 2am (shout out to Elaine for those pancakes!).

My lunch break is nearing its end so I must head back to my office. I hope that everyone had an amazing Thanksgiving!

Gobble.