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!

 

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New Treatment Plan Confirmed

Recovery after this past surgery has been interesting. I can do a lot more for myself than last year but my activity has still been significantly limited. I want nothing more than to throw on  my sneakers and run down Blackstone Blvd. Right now I’m lucky that I can walk and sit up straight. Even walking on the treadmill is a no-no for at least another week and a half.

This past Monday my staples were removed. Let me tell you, it felt like nineteen piercings were ripped from my flesh. The girl removing my staples was very sweet but perhaps less than experienced at doing so. I have pretty amazing pain tolerance after the past year of being poked, prodded, and cut open but holy hell this hurt. She barely had ONE staple out of me and I was hysterically crying. I am no wimp but I had zero control over the waterworks. Finally she brought in a fellow, Dr. Hill, who gently extracted the remaining staples (hey Wisconsin friends! Dr. Hill is a fellow UW med grad. Go badgers!). Now that I am staple-less I can move more easily, sit up straighter, and drive a car.

Yesterday my parents joined me for my post-op appointment with my darling oncologist, Dr. Robison. Per usual it was a giant love fest. I have never had a doctor that has cared about me so genuinely. She came with great news. After reading everything ever published on low-grade tumors and consulting with Dr. Dizon at Mass General, she has recommended the least invasive post-op treatment. She said that there are a few options on the table, mainly chemotherapies, but according to the literature they may not be AS effective as something as simple as switching from Letrozole to Tamoxifen.

Tamoxifen and Letrozole are similar drugs but there is one primary difference. Letrozole targets an enzyme that produces estrogen. Tamoxifen in a sense goes a step further and blocks the action of estrogen. Side effects are similar, body aches, hot flashes, blah blah blah. Dr. Robison’s concern is that I am already at risk for blood clots and Tamoxifen increases the chances of a blood clot. She recommends I continue to inject myself with Lovenox for an additional month. I hate it more than anything but it’s better than a blood clot.

Overall I am physically feeling a lot better over the past week. I have been able to do a little paperwork from home which makes me feel more engaged with and connected to my job. Sometimes I feel like I could go back to work but the main problem is that I get fatigued very easily and I am not sleeping well at all. I need a combination of medications to put me to sleep at night. I do not feel at this juncture that I could make it through a full work day without slumping over my desk and sleeping part way through. I am sure that as soon as my sleep pattern normalizes, I will be good to go for my scheduled return date of February 3rd.

In the meantime I am going to focus on a few things that give me purpose: the small amount of work that I can do from home, organizing and promoting the RI NOCC fundraiser and participating in the services my hospital so generously offers. There is a great expressive arts class on Wednesdays that I can never go to because it starts before I leave work.  I will try to make the most of the next few weeks at home.

Thanks again to everyone for being so supportive! I appreciate it more than you know.

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!

 

Drinking water out of a wine glass still makes me feel fancy

Happy New Year friends! I hope that you had a chance to kick back last night and bring in the new year with your loved ones. I was very fortunate to spend it with some incredibly wonderful friends. Sarah was kind enough to host which was convenient because she lives upstairs from me. I might have also worn a teeny-tiny top hat that clipped into my hair because, why not? If you have the chance to wear a comically small top hat with feathers and glitter you grab that opportunity by its tiny little brim! Sarah and Maddy also pimped out my cane and decorated it with glow sticks. After a few weeks of pajamas and bad hair days it was nice to have an excuse to get dolled up even if it meant sipping on sparkling cider instead of champagne.

As soon as the ball dropped I was wiped and certainly ready for bed. Before I crawled under my mountain of blankets Stacey and Zack had an early birthday surprise for me. CUPCAKES! Stacey specially ordered them from Georgetown Cupcakes. I haven’t heard of them before but apparently this cupcake shop is a huge deal. I quickly understood when I shoved a salted caramel cupcake in my face. I was thrilled enough to spend NYE with Stack and Zack but the cupcakes were a giant added bonus. Thanks guys!

Since returning from the hospital I have gotten a little better each day. Due to the six inch long Frankenstein scar on my abdomen I’m a little hunched over. To take some of the strain off my back I walk with a cane much of the time but I can walk fine otherwise (a huge win in comparison to last year’s surgical disaster). I still have some abdominal pain but I am weening myself off of narcotics. Don’t get me wrong, Percocet makes my insides feel like warm mac and cheese (stay with me) but it also clogs your pipes. I am NOT about to have another intestinal obstruction.

What other meds am I dabbling in? I am still giving myself the Lovenox shots because I am at a higher risk for blood clots. I’m full of tiny bruises because there is a huge learning curve for giving yourself injections. It beats the hell out of “deep vein thrombosis”, “pulmonary embolism”, and all of the terrible sounding complications spelled out in the Lovenox pamphlet. Today I did a really good job of injecting myself and hopefully the remaining 21 injections go just as well. (Other fun side effects include LONG TERM PARALYSIS if combined with spinal anesthesia or epidural. Well Mom, that explains why Yale didn’t make me do this. I need to stop reading this pamphlet.)

Emotionally, it is been difficult to kick the post-surgical blues but I’m getting there with a lot of help. Last time I attributed those strong feelings to isolation in CT, removal from my normal routine, and the inability to walk. This time I realize that it’s just the nature of surgery. Your body has gone through a trauma whether you are aware or not. Now it’s time to cope. Luckily I have had family and friends swoop in and do everything in their power to lift me up when I wasn’t able to myself (especially my parents). In the past few days alone I have witnessed remarkable selflessness from my family and friends. It’s like they just know when things aren’t right without me having to say a word. I consider myself very fortunate that the people for whom I care about tremendously are in my corner . It looks like my new years resolution is going to be writing more thank you notes.

So what now? Well, I have a doctor’s appointment with Dr. Robison in Providence on January 10th. Hopefully the staples will be removed and I will look less Franketsteiny (Frankensteinesque?). At that point we will find out about any further treatment planning (swapping medication, non-chemo infusions, etc.). I will remain out of work until the beginning of February. I guess I’ll need a hobby…ugh.

Even though I’m recovering I am still thinking ahead to the great things I have planned:

  • February 5th I am STILL hosting a fundraiser to benefit the Rhode Island chapter of the National Ovarian Cancer Coalition at Alex and Ani in Wayland Square. Alex and Ani is graciously providing refreshments and 15% of every purchase will go to my cause! More details to come next week. (Hey significant others! It’s conveniently right before Valentines day! grab a beautiful bracelet for your loved one and promote Ovarian Cancer awareness!)
  • Tony Lanza, fellow cancer crusher and author of http://www.effleukemia.com, and I are heading to Vegas baby! At the end of April we will be ending the OMG 2014 Cancer Summit hosted by Stupid Cancer. Stupid Cancer is my favorite organization for people in their 20’s and 30’s. There will be sessions about everything from fertility to survivors guilt to practical nutrition. Plus there will be social activities like a pool party at the Palms Resort to network with other young  cancer crushers. I will not let a second brush will cancer ruin this trip. Press that suit Tony! You have 3 months until game time! Tony and I were given a bum deal but this trip will mark another opportunity to “get busy living”.

While I wait for all of these wonderful events to happen you can find me in my jammies watching ungodly amounts of Parks and Rec.