Black Ties & Tutus

Over the past week I was on a high of being on chemocation, fundraising, and generally feeling good.

I had a doctor’s appointment on Friday in Boston. They put me back on my medication at a reduced dosage. Now I take 15 mg less of the MEK inhibitor, Pimasertib (or “Pim” as they call it). I’ve still experienced some of the side effects such as sensitive stomach and nausea/vomiting but overall I feel better than I did at the higher dosage. It has only been a few days so it is difficult to say with certainty.I have more energy and a better appetite so I’m pleased with that.

This weekend was especially eventful. On Saturday night I got all dolled up and attended the Izzy Gala in the Providence Biltmore hotel ballroom with my handsome date. Cory, ever the gentleman, arrived with beautiful flowers.
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We stopped by Waterfire first as it was being sponsored by Bryant that night. I was able to snap a picture of the Biltmore from Waterfire and you could spot the soft glow of the purple lights from the gala.IMG_20140927_190915
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When we arrived at the Biltmore it was a sea of gorgeous purple gowns and decor. Purple was Izzy’s favorite color and the official color of the Izzy Foundation. My oncologist, Dr. Robison and her team did an amazing job!

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When we first arrived we ran into Erin, the resident at W&I that went above and beyond to provide me the best care when I was hospitalized in February of 2013. (Since I know she will eventually read this entry I will shamelessly put it in writing that she was born to be a gyn. oncologist and she damn well better do it.) It was great to catch up with her and her husband but in the midst of our conversation I started to see stars and my hearing became echo-ey. Since I’m a pro at fainting in public I knew I wasn’t okay and alerted Erin. She led me into a corner and we sat on the floor together with Cory and her husband until I started to feel better. Yet again, Erin keeps me company while I’m feeling crummy.

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Luckily I did not pass out although it was a close call. The Biltmore staff was incredibly attentive and helpful. They almost called an ambulance but Erin and I assured them I was okay. I mean, let’s face it, I was in a room with 30+ medical professionals. What better place to pass out? (Actually, it’s the 2nd best place to pass out. Passing out in the Cheesecake Factory won us free dinner last year.)

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The rest of the evening went smoothly. We ate, danced, and Cory won me a beautiful necklace in the silent auction.

After months and months of not looking and feeling like myself in combination with some self-doubt, having the opportunity to dress up with a great dude by my side felt pretty damn amazing. Supporting The Izzy Foundation was my #1 priority but selfishly, the opportunity to get fancy meant a lot to me.

The very next morning I traded in my elegant gown for a ridiculous tutu. I came together with my parents and friends to celebrate life with my fellow ovarian cancer crushers at the National Ovarian Cancer Coalition Walk to Break the Silence. The RI NOCC raised over $126,000 overall and I was able to raise over $3200! Thank you to everyone that donated, walked, and/or sent their love.

We had a blast!

Check out this awesome team in the pictures below! (My Mom, Dad, Cory, Sheila, Katie, Bobby, Sarah, Johanna, Matt, Aileen, Killer Kinney, the Ransom family, Ashley, Erin, Andy, and the furbabies: KyKy, Gracie and Brick)

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Who would have thought that this is what cancer could look like?

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CRUSHING it

There is a lot to celebrate and look forward to this week.

1.)I got to finally hang out with the wonderful Alita P-G. We have been friends since kindergarten and she continues to amaze me with her attitude and perspective. Despite being “dealt a bum hand” herself this past year, she continues to see the best in everyone and fearlessly brings meaning to the spirit of adventure.
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2.) My handsome gentleman and I are getting dressed up for a “purple tie” event at the top of the Biltmore to benefit . Proceeds of this benefit help children and families facing serious illness. Most recently The Izzy Foundation built a beautiful family room at Hasbro Children’s Hospital in Providence to make long hospital stays just a little brighter for children and their parents/siblings.

Stay tuned for pictures of Cory and I looking dapper.

3.) With your help I have raised $2520 for the National Ovarian Cancer Coalition. Just think, the clinical trial I am in exists because SOMEONE like you cared even a little bit about this disease. Every dollar counts. The NOCC is an organization that provides education and resources for women facing OC and that matters more than you know.

If you would like to still donate, I accept your generous contributions with open arms. You can donate online: http://nocc.kintera.org/faf/donorReg/donorPledge.asp?ievent=1102597&supid=412190653

FINALLY,

4.) I received my test results yesterday from last week’s blood work and CT scan.

-My CA-125 jumped from 956.5 to 1153. It appears that there is some fluid building around my lungs but it is not of great concern right now, just something they will continue to monitor. This is likely why the increase is a larger jump.

-More importantly, my CT scan showed that since the beginning of June (start of the clinical chemo trial) my tumors have shrunk by 18%!!!! As a point of reference my last CT scan showed that the tumors have shrunk by 5%. CRUSH-ING IT.

For every day that I have been sick, run down, discouraged, miserable, upset, or scared…this is a reminder that it is worth it. I have a long way to go. This is not a short-term treatment but it is in the small victories that make tomorrow a little brighter.

Surprise Chemocation & Wedding Weekend!

On the heels of a difficult summer, fall has started with a bang. I am always happy to share the more uplifting events (we’ll get there, promise) though there is a lot to be said for the more difficult moments. I find that I hesitate to openly write about the daily struggles in this blog. I prefer not to shout complaints from the rooftops especially when I am physically so much more capable than I was almost two years ago. The struggles are not pleasant and manifest physically and emotionally though they are not always noticeable to others. The struggle is often compartmentalized and dealt with quietly and internally in order to continue operating. Appearing well is sometimes harder than looking sick for this reason (I do not mean in regard to how others view you). It is easier to forgive yourself for being bedridden than sluggish no matter how many times you vomit that day. Frustration arises when I say to myself “I SHOULD be capable of more right now”. One of my mother’s greatest pieces of advice is to “stop saying ‘should’ or you’ll be ‘shoulding’ all over yourself.”

I am run ragged most days due to my body generally revolting between the hours of 3am and 5am (much to my dismay cancer’s wrath does not abide by standard business hours).I spent the better part of Thursday between the couch and the porcelain throne. In an effort to not “should all over myself”, I stayed home from work. No one needs a pukey/nauseated/grumpy advisor. By 5pm I regressed into a child needing their mommy and called my parents just to hear their voices. I don’t do this as often as my Mom and Dad would probably prefer but on this day I am glad I did. Dad did some excellent damage control and Mom swooped in for the assist. They truly are emotional magicians!

(speaking of magicians, my buddy’s friend Mat Franco won America’s Got Talent and is the first magician to do so! Look him up.)

In short, Thursday sucked. That being said, I am satisfied with my decision to practice a bit of self care. It does well for the mind, body and spirit.

Now onto the good stuff. Today’s “good stuff” agenda:
1.) Friday’s doctor’s appointment in Boston
2.) Jeff Goldman’s Wedding
3.) 501c non-profit funsies

Friday’s Doctor’s Visis
Overall this was a very productive and positive visit. Granted, I had a million and one tests performed so I was at MGH for 10 hours (not including travel time). One benefit of the 5am commuter rail is that it generally weeds out most of the weirdos encountered during rush hour.

I first had an eye exam and confirmed that there are still no retinal issues. This is the only side effect that I have not gotten, thank goodness. I then had an echocardiogram which I must say is almost as relaxing as going to the spa. The lights are dimmed, I’m wrapped in a warm blanket, and it is quiet aside from the sound of my own heart beat. Naturally I am lulled to sleep (thank you echo technician for kindly not waking me until it was time to roll over). Can I schedule this weekly? Please? If anyone here needs a break from life for 30 minutes, fake some heart problems to get in for an echo. You’ll thank me later.

That was followed by the standard pre-dose/post-dose bloodwork and EKG’s that consist of more waiting around for lab results than anything. This is the point in the day that took a bit of a turn. The medical team called down to MGH pharmacy to dispense my chemo and I was to be off on my merry way. I was under the impression that I was finally getting dose reduced since we had discussed it last month but I was not correct. This forced me to be very direct and clear about my needs. Practicing self-advocacy is extremely difficult, especially when you are talking to medical professionals. As a group we were able to make a legitimate argument that supported my need to dose reduce within the structure of the drug company’s very strict protocol. This has resulted in a surprise second chemocation! I am off the MEK inhibitor until next Friday, WOOOOOOOO!!! This coming Friday I am required to come back to Boston. The protocol does not allow patients to be dispensed drugs that they are not allowed to take yet (UGH dumb). I will have another set of labs drawn then resume chemo on a slightly lower dose.

I am setting realistic expectations here. I do not expect the side effects to go away completely; however, I am optimistic that they will be less frequent/intense/obnoxious.

Jeff Goldman gets married!
Yesterday Cory and I attended a beautiful wedding in Mashpee, MA to celebrate the wedding of one of my best friend’s older brother Jeff. I sadly did not snap a clear shot of the bride and groom but I can assure you they both looked great! I did get a few of my dapper boyfriend and wolfpack sisters (sister of the groom in the middle of Michelle and I):
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I must commend Cory for being such a good sport and amazing wedding date considering that other than me he only knew Stacey (a person he met once). Despite not loving to dance he joined me on the dance floor for a bit and encouraged me to tear it up with my friends even if it meant leaving him at the table alone. He told me that he just enjoyed seeing me this well and happy. How did I get so lucky to find this gem? (Thanks Sam Favata!)

Overall the wedding was excellent and I cannot be more thrilled for the Goldman and Pozadas families. I wish them many more years of marital bliss.

(Bonus: the MGH medical superstar team told me I could safely indulge in some wine at the wedding. For the sake of being kind to my overworked/underpaid liver drinking alcohol will not be a regular occurrence but I will say that after several months of sobriety- IT. WAS. THE. BEST.)

SO MUCH FUNDRAISING
I am gearing up for the RI National Ovarian Cancer Coalition’s Walk to Break the Silence on Ovarian Cancer. I started fundraising on September 5th and exactly 16 days later the donations have poured in! Thanks to the incredible generosity of so many, I have been able to raise $2225!

To those walking with me next week, THANK-YOU! To those that donated, THANK-YOU! To those that are unable to donate at this time but cheer my efforts on anyway, THANK-YOU! I appreciate everyone’s support and enthusiasm.

So I just word vomited all over your computer screen (better than real vomit though!) but I am happy that I could share some great news.

I hope everyone has the greatest week!

Love and gratitude.

“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…

Back on the Sauce

Happy Ovarian Cancer Awareness month! Let’s give it up for the lovely ladies that have lived with/live with OC and honor the cancer crushers that are no longer with us in the physical world.

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60% of women with Ovarian Cancer are diagnosed at stage 3. Listen to your bodies ladies!

Chemocation ended a week ago. It was glorious! After only two days, the sores in my mouth disappeared entirely. My skin cleared up and has returned to it’s normal, sun deprived, pale-ish glow. I had more energy than usual and, as noted in my last entry, got a respectable amount of deep cleaning done in my apartment.

The best part of chemocation was the food. After a few days I essentially ate anything that I wanted without consequence. The key word there is that there were days that I wanted to eat. Cory, being the thoughtful gentleman that has is, drove up from CT last Wednesday to take me out for a dinner. He made sure that the last night of my chemocation was special and said that we could go anywhere I wanted. We went to a new spot in Providence called Providence G and we dined on the rooftop. The weather couldn’t have been more perfect and the food was amazing. We gorged on a lobster BLT appetizer, pork belly appetizer, and a brick oven margherita pizza (yeah, yeah, I know it’s not the portrait of health but I apologize for nothing). It was the first time in a long while that I truly enjoyed the experience of dining. Sharing this meal with my partner in crime was a huge bonus.

I’ll shut up about eating in a second but I must acknowledge the myriad of ice cream flavor suggestions that I received at the beginning of chemocation. I appreciate the all of them and wish I had the time, money, energy, and stomach capacity for every suggestion. I went real classic with this one and ended up getting a small strawberry milkshake. That did the trick.

I have been back “on drug” (to quote hospital jargon) since last Thursday. I made a quick trip up to Boston and have continued the initial dose a week ago. It kind of hit me like a ton of bricks. I felt fine until the next evening after work when I came home and napped for about 4 hours, took a bath, then slept until the next day. On Saturday after my good night’s sleep (borderline coma) I felt pretty good. I had to work for a few hours in the morning then drive to CT to see Cory. In CT I had stretches of time where I felt totally fine and other moments where my stomach revolted and vomiting/unpleasantness ensued (did I mention that my boyfriend is incredibly tolerant?). To sum it up, the past week has been a mixed bag of feeling okay and less than okay.

My next doctor’s appointment and CT scan will be on September 19th and 20th. We will discuss dose reducing with my medical team at that time. I am curious to see if there has been more tumor shrinkage. One can only hope considering the toll these drugs are taking on my body (fingers crossed).

I must invest all of my faith into this for now and believe that it will pay big dividends.

To end on a happy note- my CA 125 has gone down to triple digits. 956.5 (gone are the days of splitting hairs over 34 vs. 37) I’m just happy to see it come down from over 1200. My “safe” number according to MGH is below 35 and according to WIH my “safe” number is under 21.

Ultimately the only test that matters is a CT scan that says “No evidence of disease”. Let’s aim for that, okay? GO TEAM.