Author Archives: jsultaire

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 

 

Drop it Low

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I’m going to be perfectly honest.  I have hit a wall today where I am beyond exhausted. I’ve spend the majority of the day sleeping during and after chemo. SO I’m going to keep this short and sweet:

CA-125 decreased from 455 to 337 !!!!!!

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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Chin Up, Spirits High

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The “busy season” in advising is both exciting and draining leaving me pretty pooped by the end of the week. Today at chemo I will typically fall asleep through most of it once the Benadryl hits my veins. This time I totally passed out BEFORE the pharmacy even approved my blood work. Legitimately I arrived, got situated, Rosa accessed my port and hooked me up to saline while we waited for the green light from pharmacy to let us proceed with pre-drugs/chemo and I was totally out.

It’s just as well since the cable at he hospital has switched up their programming from Law and Order SVU to Law and Order Criminal Intent on not one, but TWO channels. I might need to write an angry letter. Scratch that, write a kind letter and play the cancer card. If there is a time to use the c-card, this is it!

It’s okay detective Tutuola, I’ll forgive.

Anyway, the infusion went fine and I just slept and slept. I actually slept so much I forgot to ask Rosa what my new CA-125 results were!

When I got home I crawled into bed and texted the ever reliable Sheila: “I was such a sleepy head today I didn’t even ask Rosa about my blood work. What’s the verdict dude?” I dropped my phone onto the bed next to me, buried my head in pillows and blankets and proceeded to pass out for another hour.

I awoke to about 14 missed texts, mainly from an excitable Sheila Enderby.

It turns out that my CA-125 has DECREASED from 742 to 455!!!

I haven’t had a CA-125 this low in well over a year and half or more. In fact I never had a CA-125 below 995 through the duration of the MEK inhibitor clinical trial at Mass General.

Here is a nice little recap, thank you Roger Williams for the 8 am required “Intro to Excel” course that made this half-assed graph possible:

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I have had so many days where I have had doubts and concerns. Perhaps in the future I will pursue a revolutionary new treatment that could obliterate the existing cancer but for now I am so pleased to see some REAL progress. Numbers that may reflect moving in a more positive direction.

I am so grateful to start off this next cycle with a bang. If you work at Women and Infants hospital and reading this- be forewarned that you’re going to be getting mega hugs (Heather- I already told Sheila that you get TWO, just ’cause).

Also- this is kind of an after thought but for my friends undergoing Taxol treatment PLEASE listen to your nutritionist and take L-Glutamine 3x per day. I started to feel some neuropathy come on (loss of feeling in hands/feet/fingers/toes) and since starting Glutamine I can already feel the impact! If this is a healthy choice for your body and approved by your doctor/nutritionist please go for it.

Anyway, that is all I have got for today.

Have a great weekend everyone!

Boots

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Sarah and I have just arrived to the ornate Providence Performing Arts Center settled in the heart of downtown Providence. We are about an hour early to the 7:30 show: An Evening with David Sedaris. In front of us is a vendor selling his works. To the left I spot an unassuming table with a sign that reads: “Please no photos”. I’ve never seen David Sedaris in person aside from a promotional headshot or two but I’m willing to make an educated guess that the man at that table is not the representative for RI NPR. In a fit of nerd-ity I gasp and whisper to Sarah: “that’s him!”

Our early arrival afforded us the opportunity to step in line behind just four or five other people to have him sign my copy of Let’s Explore Diabetes with Owls. As I consider what I would like to say to him I observe his interactions with other fans. He has a kind face, he’s making eye contact, he’s engaging the fans, really listening to what they have to say. Full conversations are happening beyond the anticipated: “who do I make this out to? Pam? P-A-M? Oh, two M’s. Okay thanks for coming out PAMM.” Sedaris takes his time with each person.

My turn presents itself sooner than anticipated and I look back at Sarah wide-eyed. She shoo’s me along like a supportive mother sending her baby off on the school bus for the first time. I approach the table and before I can think of how to introduce myself he says: “If we were friends I’d call you Boots! So Boots, what’s your real first name?” I giggled and told him that my name is Jessica but he can call me Boots, you know, since we’re friends and all.

This little icebreaker made me feel more at ease but certainly was not enough to control the level of grade A awkward that was coming out of my mouth. To this point, there have been three occasions in which I have been able to express to other writers how their work has contributed to developing my own voice as an aspiring writer. Once through a well-crafted email to Will Schwalbe (where he was all too gracious to return my email with mind-blowing kindness), another smaller book signing with a local author, and now this event with David Sedaris. It’s always weird and voyeuristic. You, a total stranger, gushing over the author’s work and their personal lives (in the case of creative non-fiction).

In what felt like a mess of painfully awkward word-vomit, I somehow articulated to David Sedaris my appreciation of his work, how it has impacted me as a budding writer, and how writing has played into living with cancer. I must almost mention that when I drop the ‘C’ bomb on anyone unsuspecting, I tend to totally overcompensate for how serious it is by acting far too casual. In this case I explained my situation in short that I was diagnosed with advanced stage Ovarian Cancer in 2012 and “have just been riding the cancer wave since.” This was accompanied by a wave motion with my hand (oddly reminiscent of Clueless circa 1995).

Now, I expected a “thank-you” followed by a polite head nod but instead he asked me if I was writing a book. I explained that it is my ultimate goal to do so and that I have pieces written that are in progress. He then asked me what the name of my book was to which I do not yet have an answer (it may need to be Jess in Boots after this encounter). It was at this point that I mentioned maintaining this blog and the man picked up his sharpie and WROTE DOWN THE BLOG URL.

It doesn’t matter if he never visits the blog. I don’t expect him to. The fact that he cares enough to inquire about things that are important to his fans speaks volumes. It only served to reinforce why he is one of my favorite authors.

He handed me back my book:

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I could write another 700 words on the reading itself but I’ll keep it brief. It was hysterical, exceeded expectations, and included a story of how a stranger removed a fatty tumor from his body that he froze and he later fed it to a sea turtle. Need I say more?

Tired & Wired

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It’s possible that I’m still recovering from the excitement of the Izzy Gala and NOCC walk and that was almost two weeks ago. I don’t think my body has quite caught up. I have had another round of chemo since and feel perpetually tired and amped up all at the same time.

Sleeping well has been challenging for a combination of reasons. I lay in bed thinking about what I need to do that next day at work, what chores sit undone, what I’m going to eat, treatment schedules, how the new season of Empire will unfold, my hopes, my dreams, my goals… Over and over and over I have these rapid fire thoughts until I finally fall asleep. My weird dreams take over from this point. It’s as if there is a dreamland director saying: “Okay folks, I’ll take it from here. Okay Sam and Diane from Cheers, are you here? GOOD. I need you to make an unexplained appearance in the chemo unit while Jess panics to review a degree audit for a student before the Hamburglar enters the room to stuff Pad Thai in her socks.”

Okay, that’s totally made up but if you’ve ever had a stress dream you get the gist of how you feel when you wake up- totally and utterly unrested.I t’s not that I am even “stressed” in a negative sense, just rapidly thinking. On top of the endless thoughts, eternal acid reflux wakes me up roughly 3-4 times per night.

The reflux should subside soon because Dr. Robison agreed to switch me back to Omeprazole. If anyone reading this suffers from chronic heart burn listen up. YOU NEED THIS IN YOUR LIFE. Omeprazole is a medication that has been sent down from the heavens on a silver platter by actual angels. Your life will change and soon mine will too. If I’m going to have insane stress dreams, without reflux I’ll at least be more likely to ride out the madness until morning.

It is clear that I have quite a bit going on and need to work on quieting my mind before bed. I know what works for me: Hot shower/bath + chamomile tea + no electronics at least 30 minutes before bed + a  Sleep Sonic CD to drift off to = Slam dunk. The key is doing this every night. I’ve had my tea so far tonight so it’s a start.

Aside from regulating sleep and managing fatigue, things are actually pretty good right now. Actually, being the medical anomaly that I am, some odd things are happening to my benefit…

Despite lingering soreness, I am pretty sure that my fingernails have stopped lifting. There was a point over the summer where I couldn’t even scratch my head for fear of losing a nail. Despite the discoloration (they’ve turned blue/black/green/gross) they feel stronger. Why? No effing clue. Not questioning it. Additionally, my hair is growing back! All of it! Even the chunks that totally fell out earlier in the summer. I’m looking forward to growing out my locks again. Hopefully in a few weeks I’ll feel comfortable enough go sans hat to work!

Over dinner last night I told Sheila about these strange occurrences and half-jokingly asked her if they are swapping out Taxol with a placebo. That was answered with an emphatic “NO”. So again, I’ll just be happy that my hair and nails are pulling through and not ask questions.

Final report of the evening is my personal favorite!

At work I have the great fortune of interacting with college students every single day. Every one of them unique, passionate, and engaged in their own way. It is my greatest joy to see students develop as each semester passes. It’s nearly impossible not to feel connected to many of these young adults as their undergraduate advisor.

As of this week, I get to experience that connectedness in a different capacity (don’t worry I’m not changing jobs!). Bryant’s Colleges Against Cancer has approached me to co-advise their club with the magnificent Amanda McGrath. I couldn’t be more excited to use this crummy experience and channel that energy into a campus community that has served me so well through this difficult time.

I’ll chalk that up to another cancer silver lining 🙂

I hope everyone is having a wonderful week. I’m off to fend off some more stress dreams. G’night and continued gratitude.

THANK-YOU

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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.

A Glimmer of Progress

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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

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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!)

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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 🙂