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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THANK-YOU

After working on this blog for the vast majority of the time I have had cancer I have documented dismal, hopeful, and the mundane days alike. If nothing else, this particular post is meant to express the pure joy and gratitude I have in reflection of this past weekend’s activities: The Izzy Gala and the 2015 NOCC Walk to Break the Silence on Ovarian Cancer.

The entire weekend was tied to cancer in some way, shape or form, yet none of it was dark or dismal. It screamed community and comfort.

I had been looking forward to this weekend for weeks now and it delivered in every way. In light of finding out that my CA-125 had decreased a smidgen from 777 to 742 I was already elated going into the weekend. I just needed one little decrease to reinvigorate me and damnnit I got it!

Here is a reenactment of what I felt  just in case the 600 gif’s from the last post weren’t enough to express myself:

Even with a Taxol and Avastin infusion on Friday, nothing was going to kill my vibe.

The 4th Annual Izzy Gala:

Many of you know that an organization that is very special to me is The Izzy Foundation. It is special for a number of reasons but mainly because it operates in memory of Dr. Tina Robison’s daughter Isabelle, who “earned her angel wings” at 3 years old after battling Stage 4 Rhabdomyosarcoma. In spite of Izzy leaving the physical world far too soon, the Izzy Foundation has grown to support other children facing debilitating illness and their families.

One of the highlights of the gala is when they award scholarships to children with illness, child survivors and their siblings! This year $21,000 in scholarships were awarded to amazing young people from coast to coast. Many of them were able to attend the gala and be honored in person.

The night consisted of a live and silent auction, dinner, and dancing. It certainly is not a stuffy event. It is “purple tie” which means black tie “with an Izzy twist” so everyone is draped in purple, her favorite color.

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(oh and yes, ever the gentleman, my handsome date brought me purple flowers to highlight the occasion)

When I walked into the ballroom that night the first person I spotted was Dr. Robison and her husband Kyle. She looked stunning per usual. I swear she must have made some sort of deal with Ursula the sea witch to look THAT good all the time AND be an amazing gyn oncologist AND run a baller non-profit.

Dr. Robison caught my eye and ran right over to Cory and I greeting us with giant hugs. She was genuinely happy to see us and as always, I was just as happy to see her. She mentioned her excitement over the lowered CA-125 then said: “You will always be my guest at the Izzy Gala and there will be many, many, more Izzy Gala’s in your future.” It was sweet and reassuring as if to suggest: “We’re in this together and I’ve got your back”.

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(^I wish this came out a tad more clearly. I snuck this shot right before Tina and Kyle went on stage to make their speeches. Just a sweet little moment between husband and wife)

Overall it was a beautiful night. It’s always great to have an excuse to throw on a gown and get dolled up.

Shout out to Danielle at Ky Michaels Salon for doing such a faboosh job on my make up! She really nailed my only instructions: “glammed up but not drag queen”.

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Giant thank-you to Cory for getting dressed up with me and making sure that it was the most beautiful evening. I couldn’t ask for a better boyfriend.

Oh you thought the weekend ended there? OH no. Sunday was just as great.

The 2015 NOCC Walk to Break the Silence on Ovarian Cancer:

After I had recurred at the end of 2013, I was feeling a whole mess of emotions. Partially I was desperately seeking out community from others that could relate to my challenges. The other part was a desire to “pay it forward” for all of the care and support I had received to that point. That is really when I discovered the RI chapter of the National Ovarian Cancer Coalition.

Since stumbling across this organization I’ve raised money for them on three separate occasions. I find comfort in knowing that this money is going toward research efforts, education, and support for women and families facing OC. Beyond the actual function of the RI NOCC, I found a group of people with such heart. President of the RI chapter, Donna Ricci, as well as the Morris and O’Donnell families have not only made me feel part of something greater than myself, but also truly loved and encouraged as I have gone through treatment. Whenever I see any one of them, I am made to feel like part of their family.

As a result of participating in the NOCC walk two years consecutively, I have also had the pleasure of meeting other OC cancer crushers. This year one of my favorite new faces was Dorinda, one of Sheila’s favorites. She was stunning and sweet. It was no surprise to me why Sheila adores her.

Last year as the survivors lined up to be recognized on stage I had the great fortune of meeting Judy, a woman TWELVE years cancer free and her daughter Marybeth. They were probably the nicest people I’ve ever met so naturally when we saw each other this year it was a giant love fest. (Judy- Next year I am mandating that you wear a tutu. Don’t make me pull the cancer card on this one!).

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Aside from other survivors it was nice to see my girl Sheila amongst other friendly faces from the infusion center. They are always a ray of sunshine. Plus what screams dedication to the job more than using your day off to STILL support your patients?

Now onto my DREAM team: Teal All Your Friends…

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(^ Missing Monica, Kerri, and Diane here 😦 )

Collectively my team raised $4215! We actually ranked third for team donations behind #1 Dorinda’s Diva’s (wooo!) and #2 BankRI. Not too shabby! We couldn’t have done it without your love and genorosity. If you donated, shared the donation page or simply sent me a few words of encouragement, THANK-YOU! Perhaps your donations will lead to a revolutionary treatment or an early detection tool. The possibilities are endless but exist because you cared.

Shout outs to this year’s team: Cory Tysoe, Stacey Goldman, Michelle Fabiaschi, Sarah Breen, Emily Nason, Matt Weese, Monica Houde, Kerri Forbes, Diane Ruotolo, Johanna Fleisher, Kelly Blessing, Mrs. Blessing,  Eileen “Killer” McKinney, Charles “The King” Ransom, Anne “Rockin” Ransom, & our furry mascots Austen and Brick (oh and Brian Eastman even though he ditched us to oogle Tom Brady at Gillette).

To the team- your energy, enthusiasm, and endless supply of humor made this walk beyond special and memorable.

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‘Twas a great day to celebrate with great people and honor equally great people that have left us after their fight with OC.

In reflection of a weekend full of light and positivity, it’s hard to believe that the reason everyone had come together for each event was because of cancer. Cancer so frequently brings about distress and heartache, fear, turmoil- but for one weekend we could laugh in the face of disease and lift each other up in the name of community.

Cheers to everyone near and far that played a role in making this weekend one for the books.

“She is BALD, Jerry”

I will preface this entry by saying that I am fresh off of chemo this morning and still feeling the Benadryl haze. I typically try not write the same day I receive chemo. My fear is perceiving that I am … Continue reading

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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“Happiness is a by-product of a meaningful life”

I don’t care that the Autumnal Equinox does not occur until September 23rd. Today felt like Fall so I am going to declare it officially fall. I wore a scarf and sweater to work today AND had my first pumpkin flavored coffee; therefore, it is practically official on those grounds alone (BOOM, lawyered).

I love everything about autumn in New England: pumpkins, decorative gourds, apples, crunchy leaves, and foliage- my god the foliage. Not to mention that everyone’s office candy quality improves significantly leading up to Halloween. You can’t walk ten feet without immediate access to a fun-sized Twix (thank you Academic Records). There is a certain charm about autumn that cannot be replicated in any other season. Part of that charm is the sense of renewal that I feel. Working in higher education means that it is still acceptable for me to measure my life in semesters. This equates to September being the beginning of a fresh, new start. I crave and enjoy the renewed energy that the students bring into my office despite the madness of the add/drop period.

Aside from the start of the academic year, it is also the Jewish new year- Rosh Hashanah. Now I must admit that I am not the best Jew in the traditional sense. I am the equivalent of a Catholic person that only shows up to church for Easter and Christmas. But today I read an interesting article called ‘Jews Don’t Say Happy New Year’ by Rabbi Benajmin Blech. What I loved about this article is that Rabbi Blech dissects a common hebrew salutation and supports his explanation by referencing sources within modern positive psychology.

During Rosh Hashanah, it is traditional to say “Shanah Tovah” to one another. I always thought that the phrase translated to “Happy New Year” but it is actually meant to express “the hope for a good year”. The article goes on to explain that wishing for a good year versus a happy year alters the intention of the statement. A good year involves hope for meaningful experience despite personal loss or hardship while a happy year is more focused on the “joy of the moment” (as Rabbi Blech puts it). The “good year” is interpreted to involve more acts of giving and finding purpose while the “happy year” is centered around self-fulfillment. The two are both important and the article notes that “happiness is a by-product of a meaningful life”. So with that, I wish everyone an early (Jewish and otherwise) l’shanah tovah.

With that being said,I am looking forward to two events this month that I am honored to participate in. Both are incredibly meaningful experiences that subsequently bring me joy in the moment (starting out the year right Rabbi Blech!)

1.) September 27th is the 3rd annual Izzy Gala. Who doesn’t love an excuse to dress up in a beautiful gown and enjoy a fancy evening on the top of the Biltmore? This isn’t just about ball gowns and cocktails. Ticket sales and auction items benefit the Izzy Foundation.

The Izzy Foundation was created in loving memory of my oncologist’s daughter. Izzy earned her angel wings after battling Stage 4 rhabdomyosarcoma as an infant/toddler.
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The Izzy Foundation works tirelessly to support families and children with serious illness. The impact this organization has made in the past few years is incredible. Please check out their organization and read more about my “Izperation” at: http://theizzyfoundation.org/

2.) The following day I will be walking in the National Ovarian Cancer Coalition (RI Chapter) Walk to Break the Silence. I am so amazed that only a few days ago I posted the link to my donation page on Facebook and I am already halfway to my goal of raising $1000! My original goal was actually $100 dollars and within 24 hours you incredible people helped me blow past it! I want to thank everyone that has donated thus far. It means so much to me that we can shed light on a disease that is often overlooked. I cannot stress enough that there is no reliable screening tool for Ovarian Cancer which is why over 60% of cases are diagnosed in stage 3 or 4. The more we know, the more intentional we can be in treating this disease and catching it before it gets out of hand.

By no means should you feel obligated but if you would like to make a small monetary donation to my team all proceeds directly benefit the NOCC. You can donate here (no pressure!): http://nocc.kintera.org/faf/donorReg/donorPledge.asp?ievent=1102597&supId=412190653

I wish you all a wonderful week and will update with any significant news. I am actually feeling pretty energized and normal today (RARE!) so I am cooking Cory a full spread (even more RARE!). I better have a frozen pizza on reserve just in case…

Izspiration

When I speak to others about my experience I can’t help but always discuss the silver linings. As I have discussed at length in this forum, one of these silver linings was finding the perfect medical team. 

I was fully prepared to take an Ativan every time I walked in the door at Women & Infants Hospital. As it turns out, these people have become like family to me and some are legitimately close friends. My chemo nurse Sheila and I hang out at least once a week. It is clear to me that the right people come into your life at the appropriate time.

Last night I got dressed up to go to Feb Fest, a casino night to benefit “The Izzy Foundation”. This non-profit was started to help my oncologist and her husband fund medical expenses for their daughter who was diagnosed with Stage 4 rhabdomyosarcoma two weeks after her first birthday. Izzy passed on two years following her diagnosis. From the stories I was told she was happy, vibrant, loving, and generous.

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She “Izspired” people all around the world. Now, in her memory, The Izzy Foundation lives on to help families and children with debilitating diseases. 

Last night’s event brought in a great crowd! Not only did we get to contribute to an amazing cause, but I also got to spend quality time with my medical team. I mean, how often does a patient get to do wine tasting and play blackjack alongside her doctors and nurses? 

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Here are some highlights:

1.) Our fabulous black jack dealer! It as no secret that we were inexperienced so he would offer tips like: “are you SURE you want to hit?” or “MAYBE you should double your bet”. 

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2.) Sheila & Sarah just killing it at the black jack table

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3.) Dr. Robison and her husband announcing the raffle winners. Unfortunately I did NOT win the tropical timeshare I was hoping for. Oh well. My money still went to kids with illness so that is a win regardless.

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4.) This is one of the most remarkable women I have ever met. We have been through a lot together in the past year and I am standing here today because of her brilliance. My beautiful oncologist, Dr. Robison!

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5.) Of course, the trifecta: Chemo nurse, Gyn. Oncologist, & Patient. They crush cancer for a living and I crush cancer to live 🙂

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What a great start to a big week!

To come:

Today: Superbowl/eating until I feel sick

Monday- I am back to work full time! 

Wednesday- My fundraiser for the National Ovarian Cancer Coalition!

 

Updates to follow 🙂