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 !!!!!!
Tag Archives: GYN Cancer
Dear former self…
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-
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
Chin Up, Spirits High
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:
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!
“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
“Your stars will realign and things will get a little bit better”
I read this article in Cosmopolitan a few days ago (thanks Mom!): I Have Cancer…And It Sucks by 25-year old Deanna Pai, Cosmo Beauty Editor. Go ahead, it’s a quick read. I’ll wait… Crib notes for lazy bones: Deanna is young, has … Continue reading
Chemo & a Canine
My life has taken an interesting turn in the past week. Last week, I wrote about adopting little (big) four-legged furball named Josie. The past week together has been exciting, heart warming, and challenging all at the same time. Josie is a very special pup and I can see why the foster coordinator at Big Fluffy Dog Rescue and her foster mom were so enamoured with her. 
She looks deeply into your eyes (and possibly into your soul) with such love and purity it is hard not to melt looking at that face. She had such a tough life leading up to being brought into Big Fluffy, I am shocked that this sweet girl can still love and trust so deeply.
Truth be told there have been a few times over the past week where I felt a little overwhelmed/stressed but generally her transition has been good.
Funny story about a particularly challenging evening:
Cory was concerned that she would drag me down the street on walks due to her size in comparison to my size (she weighs about 45 lbs. and I am clocking in at about 100 these days. THAT’S right! I finally tipped the scale!) I can handle a 45 lb. dog but when she is pulling and lunging at small dogs, cats, bikes, and squirrels, it takes some manpower to keep her in check. So on a night where she was particularly overstimulated, I figured I would try and burn off some energy by jogging with her on our last outing of the night. Imagine us in the streets of Providence off of Broadway. We’re running at a pretty decent pace, and I think to myself, “I’m totally going to tucker this girl out, I’m a geni-HOLY SHIT!” Suddenly, I hear a large German Shepherd bark behind a chain link fence to our left and Josie comes to an immediate dead stop. In that moment I run full force into my goddamn dog, trip over her, and land flat on the pavement, hard. It turns out that my demise ended up being my stationary dog acting like a speed bump.
On the bright side, Cory was wrong about this particular concern…
Yes, yes I am. Sorry your honor.
Anyway, this mishap aside, Josie has been pretty great even when I’m at work for the day. I mean, if you left me with a cozy bed and AC all day I’d be pretty psyched too.
There are dog mama perks aside from all of the awesome puppy snuggles and kisses I get everyday. In taking care of Josie it has forced me to be more purposeful with my time and provide better care for both of us. Now I’m not saying every cancer patient should run out and get a dog. Trust me, just a few months ago I was NOT in a place where I was up to this. I will say though, she has nudged me to make some positive changes in my daily routine. Not only do I take lots of walks, but I soak in my neighborhood and the people in it. I wake up earlier, plan mealtime better, and thoroughly clean everyday (she sheds like a fur monster. Thank goodness she doesn’t go on the bed and couch).
This routine has oddly given me energy even though I’m putting in more “work”. I think that these factors can only aid my recovery. Plus that unconditional love and care is just plain good for morale.
Now onto the chemo nitty-gritty.
I am going into my fourth cycle of Taxol/Avastin. Friday of this week will be the longer day where I get both drugs. It has been generally tolerable but I am seeing some annoying side effects start to creep in more and more:
- Hair loss- No surprise here. I would have thought that I would have shaved by now but the back of my head is still full, it’s just the front that is mega thin. With some strategic combing and headband placement I have been able to dodge the razor for the time being.
- Dulled taste buds- I am not experiencing the metallic taste that some other patients describe but food last lost it’s luster. I can taste food but everything is much more bland. I find myself gravitating toward stronger flavors and spices than before so I can really enjoy what I’m eating. My appetite is great though!
- Hand rash- I have a rash on my hands that itches like crazy constantly. Any other cancer crushers out there experiencing this from Taxol? Use, Hydrocortisone cream and cool compresses. It helps although nothing but tapering off the Taxol will make it go away.
- Sore fingernails- I’m not even kidding. This is actually a thing. My nail beds feel constantly inflamed. After all this time you’d think I would stop googling my medical concerns. All I found were horror stories about people’s nails falling off during/after cancer treatment. So help me I will STAPLE my nails to my fingers if I have to. (Not to worry, my nails are intact). I’ll just deal with it.
This list of complaints in comparison to my list of complaints from previous treatments is nothing. This is living the good life! I’ll take sore finger nails and bland food any day over a daily ride on the puke train.
I can safely say that I’m pretty happy right now. Things will only keep getting better, I’m sure of it.
We are keeping the positive energy going as I get my weekly blood work done tomorrow. It’s a CA-125 week so I’ll be getting an update on my tumor marker Friday.
Everyone Loves a Good Comeback Story
Week 4-5 of treatment has brought about some excitement. I’m riding the wave of what I would call an upswing.
If you just want a quick “how is chemo going?” you can scroll down to item #4 the bottom. I have a feeling that this one might be a novel but too many great moments went down:
1.) Bryant University’s Class of 2015 Commencement:
The week leading up to commencement is interesting, calm and mildly nerve wracking all at the same time. We clear our calendars and take no appointments (except emergencies). Our front desk staff diligently works with Academic Records as grades pour in to print degree audits for every single senior. Us, the advisors, pick our favorite Pandora stations and hunker down in our offices reviewing every degree audit line by line to ensure all degree components are met. Every ‘T’ crossed and every ‘I’ dotted. Normally I keep my Pandora pretty vanilla for office purposes, Indie-Singer Songwriter perhaps, but not this time. Oh no- to get through this week I needed coffee and some serious hip hop jams. Childish Gambino and Atmosphere amongst others put me in the zone, seniors got certified, no mistakes (that I know of) were found, and I could go home relieved.
The real excitement took place on commencement day. I knew it would be a proud day to see these students that have evolved personally and academically. What I didn’t anticipate was crying about seven goddamn times! One of my advisees, Emily, was the first to open the floodgates by handing me a gift before she lined up for the procession:
There is a backstory to this but in a nutshell Emily has been telling me for two straight years that on her graduation day she would give me me a bouquet of flowers made of her statistics homework because the course gave her (and subsequently me) so much grief. She delivered on that promise and I LOST IT. Emily is just one of many students that day for whom I was sad to see go.
To put it in perspective for the purposes of this blog, I’ve known this particular class of students for as long as I have been sick. Through surgeries, hospitalizations, and physically/mentally taxing treatment plans I have balanced holding it together to serve this student population to the best of my ability. One must question occasionally, am I still able to do this job well in the midst of ongoing life challenges? (My director is probably banging his head against his desk reading this because he assures me, almost daily, that I am doing good work.) But for the students who may or may not know what is going on in regard to my health, it is beyond reassuring to have moments like this where you know that against all odds you made a meaningful impact in the job that you do, sick or otherwise. This gesture held many dimensions of meaning for me personally and professionally.
2.) Sara’s Bachelorette Party:
After a box of Kleenex and a beautiful commencement ceremony I headed over to Foxwoods Casino for my cousin’s bachelorette party! One of the highlights of my weekend. We had a super hilarious group of girls and despite not feeling my best around 11pm I was still able to hang for a good portion of the night before heading back to the hotel early.
Here she is, the beautiful bride to be:
As you may know I have a VERY small family so Sara is one of my few cousins and she means the world to me. It seems like yesterday that we were chasing eachother around my grandparent’s basement at Hanukkah parties as my brother taunted her for her admirable aspirations of someday operating a school bus (spoiler alert: she became a teacher sooo…close enough). Now as an adult, Sara is still the same amazing person with a gigantic heart of gold. It is truly an honor to share these moments and to celebrate one of the most supportive and loving people in my life.
Any and all other details of the bachelorette party remain at Foxwoods, sorry folks.
3.) Prevention Magazine:
Recently, a childhood friend approached me about writing a story about what it is like to be on a clinical trial that she would pitch to Prevention. The talented Kristen Domonell did a wonderful job! She certainly maintained the integrity of my personal story and provided a balanced viewpoint. It is an “as told to” style so it was written by Kristen but told from my perspective. You can check it out here: http://www.prevention.com/health/cancer-clinical-trial
Having this published made me pretty giddy. Storytelling creates community and understanding! I hope by putting this story out there at least one other reader could relate.
4.) Chemo Update:
I just finished my first full cycle and started a 2nd last Friday. Just as I have been reporting, I am tolerating this treatment well. I’m still gorging myself with food and sleeping well. The only minor side effects that I’m noticing are occasional nosebleeds (result of Avastin) and I’m finding more hair in my brush and sink than before. The hair loss isn’t remotely noticeable to anyone else just yet but it’s definitely starting.
This past infusion I was accompanied by the lovely, witty, Stacey Goldman! We were fortunate (again) to get a private room with a bed AND a recliner. As a result, Stack and I spent our time there watching bad daytime tv and taking nappies.
We did tack on an extra hour to treatment because my port was for lack of a scientific term, “gunked up”. The heparin flush went through but my nurse couldn’t get a blood return so they had to give me tPA (Tissue Plasminogen Activator). Think of my port as a clogged sink and tPA as the ‘Drano’ equivalent and there you have it. Once the tPA did its job we were able to get a blood return and get back to business.
While we were there we received a positive update from the infamous Sheila, nurse navigator. I have weekly blood tests and she was excited to share with me the results of the CA-125 tumor marker. So excited in fact, she texted my results followed by: “I told Rosa to tell you what your tumor marker was but I’m just so excited about it I’m texting you now…She’s going to tell you so act surprised!”
My CA-125 is currently 2190. Which if you recall from other entries about the CA-125 is not actually good at all. A safe or preferred CA-125 is generally under 21 (or 35 depending on the hospital). Obviously, mine is a skosh higher than 21. What makes this news exciting is that when I started this treatment 3 weeks prior to the blood test, it was over 4000. This means in a single cycle my tumor marker has reduced by about 50%. HOLY SHIT. Something is working. I hope I don’t eat my words later but honestly, I just have strong positive feelings about this.
Naturally, to celebrate Stack and I indulged in the first Eskimo King visit of the year. Lavender soft serve in a waffle cone with rainbow sprinkles. I’m pretty sure in the midst of getting it all over my face and clothes like a child, it also seeped into my soul and made it smile.
Cheers to continued improved health, happiness, and well-being!
Cycle #1- Donezo
Oh hey there friends! As of this past Friday I have completed my first full cycle of the new treatment. Each full cycle is three weeks of treatment: Week #1: Avastin & Taxol (3-4 hour infusion) Week #2: Taxol Only (2 … Continue reading
So far, so good
Hello there friends, so we are 2/3 of the way through my first cycle of chemo. This week was even easier than last week’s infusion since it was roughly 2 hours shorter. Gone are the days of 9 hour infusions, THANK YOU LAWD.
This week I was infused with Taxol only. Taxol is the drug that I am receiving weekly. Taxol is the weekly chemo part of this dynamic duo while the other is an antibody received on the first day of every three week cycle. Last week I only felt crummy on Sunday and had some mild stomach “yuck” but aside from that I was generally okay. I do anticipate a cumulative effect where I may grow a bit more fatigued or worn out over time but so far, so good.
Yesterday’s infusion consisted of about 45 minutes of IV a pre-drugs: Zantac, Steroids, and my personal favorite- Benadryl. The steroids would explain why I feel like a million bucks the day after treatment. I wished the lasted a little longer, I could probably climb Kilimanjaro with the energy it gives me. Mom and Dad stayed with me until the Benadryl started to take me into nappy dreamland. They kindly used the next hour to go to my apartment and clean for me! What gems. I mean, how did I get so lucky? There is nothing like coming home to sparking floors and countertops especially when performed with such love. Thanks Mom and Dad! After an hour of Taxol we were all done. In and out in no time.
Today I woke up feeling pretty good. So far I’ve treated myself to breakfast at the Wayland Diner and stuffed my face with eggs, fruit, toast and turkey bacon. On that note I have been absolutely RAVENOUS in the past week or so. My appetite found its way home! The thought of food for the better part of the last year made me physically ill and eating it also made me physically ill…hence my current double digit weight. I’m still within my BMI but really cutting it close on the lower end. That being said I’m bulking for bikini season. No one needs to see skeletor at the beach. I’m sure that my nutritionist will be quite pleased to hear that I’m happily shoving all sorts of foods down my pie hole.
When my doctor was researching treatment options for me she was very fixated on creating a much better quality of life than what I’ve had in the past. I honestly get a little choked up as I reflect on this because even though it’s only been a week I already see a vast difference in how I feel both physically and emotionally. This past year was plagued by constant illness and depression and this spring has opened a much more optimistic chapter. I finally feel like I have the ability to be well. For a while I became pretty jaded and lost the hope that I was capable of going into remission. I can’t fully explain why but I’ve restored my faith in this process. Even though it’s still a shitty thing to have to experience, it’s somehow better. I have high hopes that in a few months when we look at my next scan that we will see some progress.
I’m going to wrap this up with a couple shout outs:
Happy 30th birthday to the beautiful, talented, sassy, amazing, best nurse-navigator that ever lived- Sheila Enderby! I hope you enjoyed your party and amazing Prince cake.
Happy birthday also goes out to a beautiful nugget that I have yet to meet- Karly Jae born yesterday to proud parents Joanna and Kyle. You are going to be amazing parents to this little girl! (If you need a break Uncle Cory, Uncle Sam, Auntie Alicia, Uncle Hudson and I will totally babysit and spoil the crap out of her)
Enjoy your weekends everyone!
Infused with love…and antibodies…and chemo (but mostly love)
Holy moly I am feeling the love! Usually I end my entries with the appreciation I have for those cheering me on. I still receive daily messages from family, friends and supporters from all over the globe. It is that encouragement that helps me to continue this fight. Thank you for your unconditional kindness.
The love fest continued yesterday at the Women and Infants infusion center. It was like coming home.
I was lucky to be joined by the ever handsome and supportive Cory Tysoe. He came up to Rhodey the night before and we enjoyed taco Thursday (doesn’t sound as good as Taco Tuesday) followed up by a documentary inspired by this YouTube sensation: Winnebago Man (aka “The Angriest Man on Earth”)
The documentary was essentially a result of Netflix Roulette. A little offbeat but worth a watch if you want to see the impact of becoming a viral internet sensation.
As you can see the evening before new chemo wasn’t tense or worrisome. We just went about out night, a rare midweek dinner date at home, and I adored it.
The next morning while I pulled myself together (put on sweatpants) Cory made breakfast because he’s a stud. After breakfast we packed up my infusion supplies (phone chargers, a cozy blanket, books, etc.) and made the 1.9 mile journey to W&I. ONE POINT NINE MILES. Beats the hell out of the 2 hour commute to and from Boston.
My former chemo nurse Sheila is now my nurse navigator and straight hooked me up at the infusion center. She got me a room with a BED! I only had that once in my previous IV infusion experience. It is a rare treat, especially when you’re receiving Benadryl pre-drugs (right Jen?).
My new chemo nurse was at a conference so Sheila set me up with “boss lady” Heather (Sheila’s words, not mine). “Boss lady” has been in women’s oncology for over 17 years and she was amazing! When she accessed my port I barely felt it and her bedside manner was unparalleled. She had a sunny disposition and made sure that Cory and I were comfortable. I am a major fan of her. I’m also a fan of the fact that her and Sheila are working on assigning Rosa as my regular chemo nurse. Rosa treated me previously as well as my friend Jen. I adore her and I’m happy to be seeing her again.
I’ve talked about this a lot in my blog before but I have to stress what a strong sense of community WIH has. Everyone remembers you from the front desk to the phlebotomist to the nutritionist to nurses you didn’t even have! All of the aforementioned people popped in my room to say hello. They weren’t pleased that I had to come back but I did feel the warm welcome. I think that it gave Cory some peace of mind to see me surrounded by such loving and positive people.
I’m painting a rosey picture here but the reality is that no one looks forward to chemo infusions. What I can speak honestly about is that I look forward to the warmth felt in this particular infusion center. It turns a crappy situation into an experience not quite as bad.
Even though Sheila works in the main building now, she stopped by in the afternoon to say hello. I was deep into my Benadryl nap and I felt someone jump on top of me. In true Sheila fashion she climbed into bed to give me a big hug and say hello. This would only be weird if it wasn’t her.
Overall the infusion went well. We were only there for about 4 hours (in comparison to my previous 8-10 hour stints). I was also told that I will be there for even less time in future infusions, maybe 2 hours max? Honestly, once the Benadryl hit my veins it was all over. I fell fast asleep and only woke up periodically when the IV pump beeped to switch over to the next drug. Poor Cory sat in the dark room for hours answering work emails while I passed out.
When it was all over I was famished and had an undeniable craving for Harry’s Burger bar. So Harry’s it was! I housed two sliders and some fries then immediately went home and took another 4 hour nap. I woke up around 8pm to my darling washing dishes and tidying up the kitchen. Seriously where did I find this man?! (Thank you for being born Sam Favata, without last year’s birthday celebration I would be Cory-less). Cory made me a cup of tea and we cozied up on the couch and watched hours of Top Gear. Another perfect evening at home.
Aside from feeling tired I generally felt well after the infusion. It wasn’t until almost midnight when I went to lay down and was overcome with nausea. Unfortunately I threw up. I don’t believe it was a result of the chemo though, it was probably gorging myself with burgers and fries then topping that off with some Ensure plus. Too much for my little tum tum.
Today I feel perfectly normal so I’ll say that new chemo thus far is a success! Let’s hope that it’s killing tumors so I can really call it a success in a few months.
Next week I will be joined by my lovely parents so they can see first hand how well I’m being cared for 🙂 In the meantime I return to normal life. Today I’m popping by the Izzy Room at Hasbro Children’s Hospital to see my dear friend Sarah pull off the greatest disney party of all time for the little patients and their families. Tomorrow I have the honor and pleasure of attending my cousin’s bridal shower and visiting with family in Connecticut. Monday- back to work.
I want to thank everyone again from the bottom of my heart for the love and support. Every drop of it is internalized and greatly needed.
Fight on.
The Cancer Chronicles 