THANK-YOU

Posted on September 29, 2015 by jsultaire

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.

(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”.

(^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”.

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!).

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…

(^ 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.

‘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.

A Glimmer of Progress

Posted on September 24, 2015 by jsultaire

I walked into my blood draw this morning, told Leah (the phlebotomist) to cross her fingers for improvement, went to work, and carried on with my day. On the heels of a steadily rising CA-125, I wasn’t expecting miracles. I had mentally prepared myself for the possibility that the CA-125 could increase again, warrant a CT scan, and we would just have to go from there.

As I mentioned in my last post, I was feeling at peace knowing that we have multiple contingency plans in place should the number continue to climb. I can say that since then, I’ve had a truly great week. Although nothing was certain, I had a stronger feeling of security moving forward. I cannot quite articulate why this week was different but I just felt like I was in a better place. I was able to have a fun filled weekend with friends and Cory. I generally felt focused and on point at work. Despite the never ending fatigue I felt a renewed energy that was certainly more mental than physical. I grocery shopped and prepared healthy meals full of fruits and veggies for the week. I did laundry and really cleaned the apartment (dish mountain was conquered…finally). I was even able to get a couple small work outs in.

It’s not perfect, I was at peace with what is.

Going into the blood test I had high hopes but was not totally fixated on the outcome.

Well guess what?

MY CA-125 DECREASED BY 35!!!!!!! It’s a small improvement but it’s something. I would have been amped for a 5 point decrease at this rate. I haven’t seen a decrease in weeks. Maybe it’s a fluke but for today and the next three weeks, it feels like progress.

So with that I leave you with all the feels…

Contingency Plans

Posted on September 18, 2015 by jsultaire

Little by little I am starting to get a sense of where this treatment plan is going. Baby steps.

I saw my oncologist, Dr. Robison, early this morning before chemo. I had approached this check-up with no expectations. Quite frankly I just assumed it would be a quickie visit: Listen to lungs, feel my belly, take notes on the extent of the side effects, girl talk for a bit, then send me on my way. I was partly right but we did have a productive conversation about future treatment.

In more recent previous posts I had talked a little bit about the frustration I was feeling over not feeling like I was progressing. There is no finish line, no end date, no goal to strive for other than keeping my chin up and staying the course. After my visit with Dr. Robison I left feeling relieved and at ease with what may come even though it is still very uncertain.

I am generally a planner. I like to have an idea of what is to come. With that in mind, I am also fairly adaptable and as long as some sort of plan is in place I can roll with that plan being altered. Bottom line, I do not want to feel stuck or stagnant.

We spoke openly about what tricks she may have up her sleeve for me in the event that the Taxol/Avastin combination is no longer best the course of treatment. In a nutshell this is a tentative plan of attack:

Scenario #1: We take a CA-125 bloodtest next week and the results show a decrease

Stay the course with Taxol/Avastin.

Scenario #2: We take a CA-125 blood test next week and the results are unchanged/slightly increase (ex: by 20 or so)

Still stable, stay the course with Taxol/Avastin.

Scenario #3: We take a CA-125 blood test next week and the results increase by about 50 or more –> Conduct a CT scan to get a visual on what is actually happening. Is the disease unchanged or progressive?

If we do a CT scan and the imaging shows that the tumors are unchanged and there is no new progressive disease we would be inclined to still stay the course with Taxol/Avastin as stable (no new growth = good)
If we do a CT scan and the imaging shows progressive disease (new tumors/growth) we may move to a different type of chemotherapy called Doxil.

So what is Doxil you ask?

Doxil is a platinum based chemotherapy called an anthracycline used commonly in recurring low grade ovarian cancer. The American Cancer Society was kind enough to explain this online in plain English for me. This just means that the drug targets enzymes involved in the replication of DNA. Its job is to destroy the cancer cells formed by the botched DNA. Like Taxol, it is not exactly a targeted therapy so it can also destroy normal tissue. One of the benefits of this drug is that it stays in your system a little longer because it is designed to go almost undetected by the immune system. This allows the drug more time to do its job. Or so I read…I am no means an expert on this drug aside from a basic google search.

Based on what I have been told by Dr. Robison and Rosa, my nurse, Doxil is also pretty tolerable. The most common side effects are skin rash (tinging/burning/flaking of the skin on palms of hands and bottoms of feet) and mouth sores. These side effects worry me because I have had variations of both in the past and it is not pleasant. BUT there are always risks with any medication.

IF we decided that a switch to Doxil would be the next step, and it may not need to be, the infusions would only last about an hour once per month. The only other downside is that I would need to be the most patient patient. I was told that they do not typically see any immediate impact on the tumor marker for the first few cycles. It would be another exercise in trust.

The other option that I inquired about is immunotherapy since it is being discussed at length in health media as of late. There is an immunotherapy trial going on at WIH currently but Dr. Robison did not feel that this particular trial is my best next step just yet. She is not ruling it out for the future if it is appropriate for my circumstances down the line.

A lot of information to take in, right? Remember, the plan may not even change! I am just relieved to know what my options are and how I can mentally/physically prepare for what is to come. I really appreciate that my doctor is always one step ahead of me, keeps me informed, doesn’t dismiss my concerns, and is honest with me. That is so important in a doctor/patient relationship.

After the appointment I headed over to the infusion center to see my girl Rosa for Taxol. One of my cancer crushing buddies was kind enough to come by with a HALF DOZEN Allie’s Donuts. If you are from the Rhode Island area- you know what I’m talking about. It’s sugar crack amazing heaven in a box.

Thank you for the visit and treats Jocelyne!

All in all I am feeling ready to move forward no matter what is to come. I find comfort in knowing I have options. Stay tuned for my create your own cancer adventure as we will know more next week.

SO many updates (and lots of pictures!)

Posted on September 12, 2015 by jsultaire

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)

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.

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.

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.

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.

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.

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.

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 🙂

The Cancer Chronicles

My account of the bold, bald, battle

Monthly Archives: September 2015

THANK-YOU

A Glimmer of Progress

Contingency Plans

SO many updates (and lots of pictures!)

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