Top 5 Tuesday: What’s in your bag?

For anyone that has seen and come to love the movie High Fidelity with John Cusack you would know that he would be proud of this addition to the blog since his character makes Top 5 lists throughout the film. Luckily I won’t be listing top 5 saddest break up songs or anything like that. This is a little more practical and cancer-esque.

Now I tend to shy away from dishing out “how to’s” because there is no instruction manual for cancer and everyone’s experience is uniquely theirs. But I can offer some nuggets that have come to help me personally over the years. If you find any of it useful, perfect! If not, find comfort that I still have a day job.

When you’re in chemo you have a lot of time on your hands and comfort isn’t always optimal. Here are my Top 5 must-haves packed for a chemo infusion.

1.) A designated chemo bag

This seems like a silly one but let’s face it, chemo brain is very real and without some level of consistency I will likely forget to bring something to treatment. I generally use one of those reusable cloth grocery bags. I’m glad they’re getting used somehow because I am the worst offender of owning them and forgetting to bring them with me to the grocery store. Sorry environment. I’m trying, really.

A reusable grocery bag or tote will be enough to fit a few necessities. Keep it in your car if you drive yourself to treatment or pre-packed in the same spot in your home.

tb,220x200,flat-pad,220x200,ffffff.2u7

I think we can agree that I should upgrade from stop and shop bag to this gem. GASP. NEED.

2.) A soft/fuzzy blanket

As a blanket enthusiast I have many throws around my apartment but I have one specifically that I keep in my car so that I never forget to bring it with me to chemo. Why BYOB (Bring Your Own Blanket)?

  • Hospital blankets are generally glorified burlap tarps. They don’t provide much warmth beyond the first few minutes out of the blanket warmer and the material doesn’t make for a cozy experience.
  • Emotionally it’s nice to have one blanket specifically for chemo so I am not making that association when I am trying to relax at home. That blanket serves one purpose, my other blankets are my home blankets.
  • Sometimes one of the pre-drugs for chemo (depending on your treatment) is Benadryl. If you are anything like me you’re cross eyed within a few minutes and ready for a solid chemo nap. When I’m napping I am seeking optimal comfort, especially if I’m being infused for a few hours at a stretch.
toast1-640x525c

This is what I’m 99% sure I look like post-Benadryl

3.) Entertainment

Boy is this necessary. My first stab at chemo had me there for 8-9 hour infusions. Now it’s more like 2-4 hours. You have a lot of time on your hands here. In the chemo units I have experienced there are usually televisions and maybe a few magazines hanging around. I would suggest packing one or more of these items for variety.

  • A good book. I prefer something that is going to make me chuckle. If you haven’t read anything by fellow blogger Jenny Lawson do it. You will undoubtedly be THAT person belly laughing in the chemo unit.
  • Cell phone with good battery life
  • Tablet or iPad if you have one. Good for movie watching/Netflix binging if the cable options aren’t great or answering work email if you’re still working and a true overachiever (just don’t answer email post-Benadryl…trust me. It makes for some weird outcomes)
  • Favorite magazines or crossword puzzles. Nice touch for your chemo bag for the sake of anyone volunteering to come with you for support. If you’re a chemo napper like me, your friend/loved one is going to need entertainment as much as you.

*Ok, ok so I know I cheated with #3 and listed 4 different things in a Top 5 list. You can write angry letters to the editor if need be. Spoiler Alert: I am also the editor.*

4.) Phone charger/Ipad or tablet Charger

I mean, if you’re there for a few hours killing time with non-stop Facebook and Insta-creeping you’re going to need to charge up.

5.) Sweater/Sweatshirt

Funny-Ugly-Sweater-25

Maybe have a little bit of chill and don’t pack this one…

I’ve found that comfort and layers are key. The particular chemo drugs that I get make me immediately freezing then I wake up sweating bullets shortly after. Having an extra sweater to keep in your bag can help to manage that. Also if you’re low on magnesium and they add that to your IV, it tends to make people run a little warm

 

So there you have it, my top chemo staples for maximum enjoyment  okay-ness?

I purposely did not include water/snacks/meals because in my experience the infusion center has graciously provided that in all three hospitals that I have been in. If yours does not it never hurts to have a bottle of water to stay hydrated and a granola bar or fruit to keep your tum tum happy.

 

Cancer friends- what are your top chemo necessities? I’d love to hear from you! Feel free to leave your favorites in the comments.

 

 

 

Advertisements

Recovering as George

First, I must thank you for the outpouring of support over the past week while I spent four nights in the hospital resolving the obstruction in my small intestine. The words of encouragement mean more than you know especially when you feel like much is out of your realm of control.

I was discharged on Wednesday and have been trying, successfully I might add, to proceed with a high level of self-care. I pretty much needed to fight all of my natural instincts. So basically I’m operating on the “Constanza Principle”…

 

  • Instinct #1: I haven’t been at work in many days and I have to go back on Thursday or the world will explode
    • Opposite action: I was strongly encouraged and well supported by my supervisors and colleagues to return on Monday when I was feeling better. I was admittedly starting to feel anxious as my inbox piled up with questions that I couldn’t necessarily answer from home so I made a compromise with myself. I slept in on Thursday and at my leisure went to my office for an hour MAX, closed my office door, knocked out enough to feel less anxious, and went home.
  • Instinct #2: I am discharged which should mean that things are improving. There is nothing to talk about.
    • Opposite action: The night I was discharged one of the first things I did was email Dana, my social worker, at the hospital and ask for an appointment this week to “debrief”.
      • I will write more about this next week but one thing I have learned time and time again and not properly addressed is that when you are hospitalized you have experienced a trauma (anyone who truly understands what it’s like to have an NG tube placed while you’re awake can give me a chorus of “amen sister!”). Trauma’s are not all blood and gore- you are in a vulnerable position, you are not in control of what is happening to you, it is a trauma, period.
      • I went into my appointment not fully knowing what I wanted to talk about. Truly, I walked in there feeling pretty stable. As I anticipated there are issues that bubbled up that started with the hospitalization and weaved into other concerns both medical and non-medical. This appointment was the best gift that I gave myself this week. To express certain concerns out loud, to validate feelings, to have a good cry in a safe space where I don’t feel inclined to edit my thoughts- it was truly healing. I’m glad I nipped this in the bud.
  • Instict #3: Resting = Sitting in pajamas and binge watching TV
    • Opposite action: 
      • Ok fine I totally binge watched The Wire and old episodes of Veep on HBO. BUT I honored myself in other ways too!
      • I invested in my body by booking a massage at the Alayne White Spa. I didn’t truly know how many knots existed in my back until I got on that table. At one point I was face down and was so relaxed that I dosed off. I woke up to my mouth gaped open like an idiot and I was totally drooling on the floor through that little face hole. I’m 99.9% sure I didn’t drool on the massage therapist’s sneakers. Fingers crossed.
        • Funny aside: As I was on my way out post-massage I ran into Heather (infusion center nurse manager) and Nancy (4th floor oncology nurse). They were there for facials that they won at a silent auction. One would think that any reminder of the hospital the day after a hospitalization would conjure up negative feelings. I was just so happy to see these lovely faces outside of a medical setting I had to fight back happy-tears.
      • In addition to the massage I also treated myself to some time in one of the more peaceful venues in Providence, The Duck and Bunny. I enjoyed a quiet snack of crusty break drizzled with olive oil with Narragansett  Creamery ricotta and a pot of chamomile tea. It was calming and so good for the soul.
  • Instinct #4: I’m out of the hospital which means I’m capable of doing things for myself
    • Opposite action: Sucking it up and letting people offer their help because it just makes life easier
      • Mom and Dad cleaned up and did my laundry so I could come home to minimal work (seriously, gems). Also after arriving home after 15 minutes of me trying to convince them that I’d “figure out” something for lunch, I gave in and let them indulge me in a sandwich from Olga’s. I would have probably made a PBJ so they called my bluff.
      • Katie “Mamamamamabear” Carlson gave me a ride to Beth and Brendan’s house to dye easter eggs with her family. Sure, I could drive myself but it was very nice to have a ride. (p.s. I’m not very good at dying easter eggs #jewishkidproblems)

 

So there we go, trying desperately to practice self-care that I speak so highly of but don’t often practice.

Off to spend the weekend with my parents and back to work on Monday, hello sh-normalcy!

 

 

 

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.

10298403_10100441938284281_1166545173131595766_o

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.

12828399_10100768964471059_7595079692224969871_o

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.

nerdrage

10580848_10100443602284611_3131251172218674973_o

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 🙂

img_20160317_204557.jpg

^ 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!

 

 

 

Centering mind & body with family & pie

I hope that everyone enjoyed their Thanksgiving holiday! Hopefully you did not have to rush off to work just yet (sorry Jacque! Retail is a buzz kill).

Thanksgiving this year was different than usual. Because I was scheduled to receive chemo the day after Thanksgiving, it would just be too much for me to drive back to Torrington and home again in 24 hours. Despite the gracious offer to join my cousins, my parents and I had a modified low-key Thanksgiving together on the Cape. We had a phenomenal four course traditional meal at the Daniel Webster Inn. Afterward, my mom and I whipped up a delicious apple pie and a loaf of banana bread using the secret family recipe. I have yet to eat banana bread that rivals my mother’s so it was nice to share this piece of our family history with her.

We ended the night with a marathon of Rummikub. To keep things interesting, I forced my parents to adopt silly rules and claimed them to be “new house rules”. This involved making by parents flap their arms like birds and yell “caw-caw, caw-caw!” whenever they had two tiles remaining.

rummikub

I adore my family and do not get to see them often as we are a bit spread out in a few states. As much as I would have liked to share this holiday with my extended family I think it was in my best interest to have a quiet break from life for a couple days in Mashpee. I was able to decompress and recenter myself. I can honestly say I feel much better than when I last wrote.

As I mentioned, today began yet another new cycle of chemo. I received both Taxol and Avastin. I am thrilled that W&I was able to fit me for an early afternoon infusion so that I did not have to rush back from the Cape early in the morning.

**Bonus** There was a therapy dog today! So many kisses and snuggles were had by all!

auggie

Today I receive the updated CA-125. The numbers came back as just over 600, meaning it has doubled since the last reading. Considering the infection that I’ve been fending off, stress, and feeling rundown I am not at all surprised that my numbers shot up. That said, I’m not upset either (and no, this isn’t one of those times where I’m putting on a brave face but secretly sad on the inside. I’m very legitimately okay with this). I chalk this one up to a ‘not-great reading’ and hope that my body is in better condition for the next one.

In the interest of remaining focused on a more positive frame of mind, I want to share a gift from one of my students:

(I appreciate Kim providing me written consent to share her name as well as this gift with you.)

kimgift

Relay for Life 2015- Nelly (left), Kim (center), Me (right)

The context surrounding this gift is that before Kim became my advisee, we had crossed paths through Relay for Life and the Izzy Foundation. We bonded over our common experience of being young with cancer and that evolved into her joining my caseload in Advising. She is a stellar student and has a big heart for those around her. I can happily say that she is now cancer-free.

Through Kim, I met another wonderful girl named Nelly. Nelly was a patient at Hasbro with Kim and they became the best of friends under horrible circumstances. Nelly had been fighting Ewing Sarcoma but her suffering came to an end last weekend when she earned her angel wings.

Kim was the first to share the news with me and all weekend I worried about her. When someone close to you passes it is quite obviously devastating. When someone close to you passes of a disease you can relate to there are complex levels of emotion- fear, anger, mourning, survivor’s guilt, etc. It can be hard for some to process.

On Monday afternoon I returned from lunch to find a purple gift bag on my office chair. It contained a card and the framed picture above. Kim had written on every square inch of this card. It then dawned on me that while I was worried all weekend about her, she was also concerned for me.

Below is an excerpt from her card. It helped me to find perspective and I think it can speak to all of us on some level:

“I made this frame myself. There are many flaws and even some scratches, but they represent scars. When I first made this frame, it gave me issues, so I re-did part of it. I didn’t start new because I felt as though the scars (scratches) tell a story, just as all of our do. I kept it like this to show how perfection isn’t everything. Our lives are far from perfect, but we still manage to survive and get through every day.”

I think we can agree that my student is wise beyond her years. There are no accidents in life and this card arrived at a moment when I needed an influx of reminders that it’s okay not feel strong all the time. Beauty still exists within our imperfect worlds.

I consider myself so lucky to work with students with such heart. When people say to me: “I don’t know how you work through all of this!” I wish I could let them be flies on the wall for these kinds of moments packed with such genuine human connectedness.

So in short (HA! Right…) I feel that I am slowly returning to a more centered frame of mind. I am not currently feeling the stress and sadness that lingered over the past few days and I am getting excited for the weeks to come both in and out of work.

Cheers friends, have a happy and safe weekend!

ENJOY ALL OF THOSE LEFTOVER TREATS!

grid-cell-16235-1416256688-5

Three Years

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.

 

you'reonlyhuman

(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

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…

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-

598633_854438940701_500409342_n-1

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

12039699_10100380244938241_5937039090183886300_n

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:

ca125largergraph

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!

Tired & Wired

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

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.

wpid-fb_img_1443387366212.jpg  wpid-20150926_175521.jpg 20150926_203313

(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”.

wpid-20150926_201204.jpg

(^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”.

wpid-20150926_174817.jpg wpid-20150926_175847.jpg

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!).

12063357_10100380245342431_4224842922359954365_n

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…

12074602_10100380245581951_6740736300787343495_n

(^ 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.

wpid-20150927_111645.jpg wpid-20150927_111544.jpg wpid-20150927_111325.jpg wpid-noccwalkhandholding.jpg wpid-20150927_111513.jpg wpid-20150927_1041020.jpg wpid-20150927_140145.jpg wpid-20150927_101758.jpg wpid-20150927_103016.jpg wpid-20150927_101534.jpg 12038287_10100380244913291_1612688936922563258_n 12039699_10100380244938241_5937039090183886300_n 12027141_959816068956_1159462729866029270_o wpid-20150927_101748.jpg 12072674_10100380245242631_6594270118965915148_n 12036433_10100380246500111_1740135035661414839_n

‘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.