THANK-YOU

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

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

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

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

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

The 4th Annual Izzy Gala:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Now onto my DREAM team: Teal All Your Friends…

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

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

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

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

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

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

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

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SO many updates (and lots of pictures!)

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 🙂

Vacations & Expectations

*Blows dust off of keyboard*

I have been slacking on the entries this month. Not for lack of interest or not having any thoughts to share but every time I sat down to articulate them I just couldn’t. But here I am- on a plane with several hours to go. I might as well use this time to collect my thoughts.

Right now I am en route to beautiful San Jose, California for a real, much needed, vacation. I will be visiting my brother and hoping so see some of the friendly faces that make up his adopted “west coast family”. I already told Adam that since my appetite is in working order that an In N’ Out Burger (animal style of course) was a necessity.

I opted for the cheapest flight through Southwest and was blown away by the affordability. To no one’s surprise that means flying from Providence to Baltimore to San Diego THEN San Jose. Despite a long day of flying I have been fortunate to be seated next to some lovely people (and avoid the Detroit airport for once).

As I lined up to board my first flight, distracted by matching up ‘B17’ with the appropriate place in line, I hear a familar voice in front of me say “oh hi!”. It was Erin, a resident at Women and Infants.

If anyone is new to the blog or needs a refresher, Erin was the doctor that was responsible for inserting an NG tube into me during the first intestinal obstruction. It was traumatizing for all parties involved. She felt so badly about it that she visited me in the hospital after her shift every single day. In fact, she always seems to find me when I am inpatient which brings a smile to my (often delirious) face. In short, a surprise catch-up with Erin on our way to Baltimore was beyond exciting.

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With the exception of a surprise plane ride alongside Erin, I am free of the hospital for this week. My oncologist kindly granted me a week off to travel. Actually, Dr. Robison mandated that since I am in California I must eat a burrito, like a good one. Welp, doctor’s orders.

A week off from treatment couldn’t have come at a better time. The time I would have spent this morning getting blood drawn and rushing to work was spent entirely in bed easing into the day. Bliss.

Over the past few weeks I have gone through periods of feeling a little deflated. I recently had a discussion with my oncologist about expectations. Dr. Robison can see that I am disappointed that there is no established “end date” for when the taxol (chemo part) might end. We had a healthy discussion about, based on what we know, what this means for my immediate and long-term future.

From a clinical perspective, the goal is treat to prevent new tumors. From a patient perspective, my perfect-world scenario would be to treat to prevent new tumors and get rid of the ones I already have lurking around my abdominal cavity. I constantly toggle between feeling wildly optimistic that I can achieve a cancer free life (someday) and settling with the fact that the cancer may never entirely leave me but with treatment/maintenance I could still live with a pretty good quality of life.

After I left treatment last week I was frustrated, I didn’t want to be made to reconsider my expectations. After a week of sulking, crying, writing and rewriting I think the only conclusion that I can draw is that it is important that I recognize that this process is going to continue to be long term. It is important that I dig deep and accept that if these tumors are going to be freeloaders and live inside of me for the long haul but aren’t growing, I am still winning. Most critically, it is essential that in accepting these realities I still allow myself to believe in a world where I no longer have cancer.

No one knows the outcome of this story. Establishing realistic expectations and dreaming do not necessarily negate one another. So I choose to accept and believe simultaneously to the best of my ability.

I know it sounds like I have this all figured out in a nutshell but I assure you that I will continue to grapple with it until the cows come home. Friends and family are ever important in maintaining the balance. Strangers too…

I am currently sitting next to a woman on the second leg of this journey (Baltimore –> San Diego). It feels like a chance encounter where we just happened to be in the right place at the right time. This woman noticed that I was drafting a blog entry and asked: “are you a blogger?” from there we discussed blogging, writing, etc. Naturally it came out that I write about living with cancer to which she responded: “I am a cancer survivor too, breast.” Her name is Billie and she is a minister. She is returning from a trip visiting her grandchildren in Virginia. She has overcome many devastating tragedies in her life, yet maintains such honest and positive perspective.

We spoke a lot about our common thread, cancer. Treatments, surgeries, being bald, confronting changes in the body, menopause, relationships evolving and dissipating. We also chatted about books, goals, and bucket lists. Billie is the type of person that has a lot to say, but no words are wasteful. She opened herself up to me in a way that was not imposing and I found her to be most insightful. She is a walking, talking, breathing reminder to keep living and finding comfort and joy in the simple pleasures.

Thank you Southwest, you’ve nailed this trip thus far.

Speaking of thank-you’s I would like to thank everyone that has donated to the 2015 National Ovarian Cancer Coalition Walk to Break the Silence. On Sunday, September 27th I will be joining the Rhode Island chapter of the NOCC for their annual walk. I created my fundraising page just two or three days ago and already donations are pouring in! I am in awe of your generosity and support.

I would also like to thank Miss Stacey Applesauce Goldman and Emily Nason for registering as team members. In speaking with other friends, it sounds like we are going to have a solid posse on the day of! If you would like to join this team, Teal All Your Friends, you can do so through my donation page in the top right corner.

Seriously though…

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

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

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

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

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

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

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

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

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

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

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

January Unfolds

A few people have mentioned that they were concerned that I haven’t been writing. Not to worry! I am alive and well. The past couple weeks of recovery have been great and I more or less feel back to normal. The only issue I have is still sleep related. I need to figure my sleep issue out quick because I go back to work in ten days and I must be bright eyed and bushy tailed for 8:30 am (thank goodness for free tea & coffee in the Gulski dining room). ZzzQuil has been my most trusted sleep aid but it also makes me sleep for 10-11 hours at a stretch so that is no good. I am sure that when I am working full days again I will tucker myself out enough to be on a more regulated sleep schedule.

So what have I been up to over the past few weeks? I have been taking advantage of programming at the hospital. For example last week I did a meditation/art group. It was SO relaxing. There was about 20-25 minutes of guided meditation and deep breathing. After that the instructor put out paper and paint and said: GO! We were free to create whatever came to us. Mine ended up being some sort of fierce fire goddess? I don’t know where she has been hiding but I definitely unleashed her on canvas.

 

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I loved how therapeutic the expressive arts session was and have done a little bit of painting at home as well. I’m no artist but I think I would have made my Grandma Esther and Uncle Eddie proud. I come from a long line of musicians and arts and I am mediocre at best in either category.

When I am at home I try my best to answer emails from my students. I am getting antsy and cannot wait to return to the office. I have tried to sneakily work my way back in but my director is looking out for my best interest and has told me to stay home until the return date established by my oncologist. I’m only a little more than a week away! Only a few short days until I can return to bantering with Krystal through my office wall and demanding that we have a window installed between our offices. Even though this time of the semester can be a bit crazy I certainly miss the face to face interaction with students. 

Otherwise I have focused my attention to my fundraiser which is fast approaching! I am so humbled by the number of people that have RSVP’d and expressed interest in contributing! I sat down with Donna, the president of the RI chapter of the National Ovarian Cancer Coalition and we hit it off. I am very interested in the work that this organization does and look forward to participating in their OC walk in September. She told me that at the walk they used to have a moment of silence for our departed OC fighters. They have since replaced the silence with a new tradition. Making as much noise as possible!!! OC is nicknamed “the silent killer” so I admire Donna and her team for wanting to take the silence out of the equation.

What struck me the most about my conversation with Donna was hearing her niece’s story. Her niece, Jessie, was diagnosed with Ovarian Cancer at age 18 and lived vibrantly until the very end. Her story left me a bit more than misty eyed. I want to use this opportunity to fundraise for a cause that has significantly altered my life. Now it has a second purpose, to honor the life of a young woman that meant so much to this community. I wish I had the chance to meet her on earth but I know that she is with us, breathing life into what we are doing. 

If you are thinking of joining us the details of the fundraiser can be seen below! Wayland Square is a great little neighborhood. If you’re looking to make a night of it perhaps you can grab a drink or dinner at Farmstead or Redstripe then make your way over! 

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There will be light refreshments served and free LIVE music courtesy of the ever talented ladies of The Sugar Honey Iced Tea. Music will begin after 7:30!

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Again, if you cannot make it you may still make an order over the phone:

1.) Browse a beautiful selection of jewelry at: www.alexandani.com and make your selection 
(*Please note: the NOCC will NOT receive 15% proceeds on any discounted items or items from the Charity by Design collection)

2.) Call: 401-919-5467, the location of our fundraiser between 7-9pm EST and an Alex And Ani representative will take your order. Please tell the store representative that you are calling in support of 
The National Ovarian Cancer Coalition fundraiser! Your order will be mailed to you!

I am excited for this event! I cannot wait to see everyone there!

 

Shop for Ovarian Cancer Awareness!

TEAL ALL YOUR FRIENDS! Support the Rhode Island Chapter of the National Ovarian Cancer Coalition (NOCC) by participating in a fundraiser I am hosting on February 5th from 7-9pm EST at Alex and Ani! Conveniently right before Valentines day 😉 Pick up a little something for your loved ones and support women’s health! 

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I would love to see every one of your smiling faces at this event but if you cannot make it, you can still help us!:

1.) Browse a beautiful selection of jewelry at: www.alexandani.com and make your selection

(Please note: the NOCC will NOT receive 15% proceeds on any discounted items or items from the Charity by Design collection)

 

2.) Call: 401-919-5467, the location of our fundraiser between 7-9pm EST and an Alex And Ani representative will take your order. Please tell the store representative that you are calling in support of

The National Ovarian Cancer Coalition fundraiser! Your order will be mailed to you!

I look forward to seeing you there!