I’ve been neglectful of my little blog since throwing together the Alex and Ani fundraiser to benefit the National Ovarian Cancer Coalition but I am here to report that it was a major success! Not without a few hiccups. The event was originally scheduled for Wed. Feb 5th but of course the mighty snow gods were not in cooperation with my plans. Work was cancelled that day but the Alex and Ani store was open so they gave me the option to still have it or postpone it.

For whatever reason it was a stressful decision but I wasn’t about to make anyone come out after a snowstorm. The roads were too dangerous and most people would be a bottle of wine deep and in jammies by 4 that day. As my parents could attest to, I called them crying wondering if I was making the right decision. This is an example of me sweating the small stuff. Immediately after I thought to myself “you had cancer, THIS ISN’T A BIG DEAL IDIOT.” Turns out it wasn’t a big deal. We pushed it back one day. I thought that the short notice would prevent me from having a good turnout. I was very wrong.

I would like to first say for the record that the staff at Alex and Ani Providence were rockstars. From the minute the event began at 7 to when they locked their doors at 9:30 the store was PACKED. The phones were ringing off the hook. I didn’t picture this great of a turnout on the original date let alone postponing it on short notice. Shout out to: Hilary, Jessica, Vanessa, Alexa, & Allison for their incredible service and professionalism. I don’t think they anticipated it being as crazy as it was. Regardless, I didn’t hear a single complaint about service.

With having to push the event back I was concerned because I had entertainment lined up. Providence’s own The Sugar Honey Iced Tea was scheduled to perform. Luckily Kate (see below, top- left) was a sweetheart and rounded up most of the members of the band to perform the next day. They played beautifully! I also must mention that they played a Destiny’s Child cover of “Survivor” and it made my life complete.

The whole evening really breezed by so quickly. There were so many familiar faces that I would start a conversation then turn around into another one. It was like seeing snapshots of my entire life. There were friends from childhood, college, grad school, colleagues from Bryant, hospital staff, friends from previous jobs, and other wonderful people that have come into my life in the most unexpected of ways.

…and of course Mama and Dad came to cheer me on!

Overall I would say that the event was a massive success. We will not know the final totals for another week or so but I am eagerly awaiting the final count! It was a pleasure to partner with NOCC RI and Alex and Ani.

**PHOTO CREDIT: The beautiful Beth Hart (and Adam Hart for editing some of them!)

THANK YOU to everyone that came out or called in orders from coast to coast! Every bit makes a difference. 

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.

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.

Merry Christmas everyone! Per usual I spent another major holiday in hospital. It wouldn’t be a true Jess style crisis if I did not align it with a holiday. In the future you should be MORE concerned if I have a health concern on a normal day.

It is hard to believe that I was there since Friday. The days have kind of ran together thanks to a whole lot of IV pain medication. Here is the rundown:

Friday: Day of surgery
The procedure went well. It ended up taking longer than expected. I believe that overall I was on the operating table for 4 hours. I had a wonderful surprise! Dr. Greenberg (you may have read about her last February when I had the bowel obstruction) jumped in on the surgery! It was comforting to know she was there alongside Dr. Robison.

My oncologist removed the mass on my liver and zapped off a few other spots that we did not see on the CT scan. The other spots were on my intestine and bowel but luckily there was no need for another bowel resection. Apparently there was some excessive bleeding during the surgery because of the way the liver had to be positioned while the surgeons removed the tumor. They kept me in the ICU overnight as a precaution. I woke up in the recovery room in a lot of pain. It was well managed once I got into the ICU. So well in fact that I have little memory of anything but clutching my gut in pain as it spasmed at the slightest touch.

Saturday

I don’t believe that I left my bed at all on Saturday. I recall being in a lot of pain. Apparently I had to be so highly medicated that I would be talking to my parents and all of the sudden I would just fall asleep mid conversation then wake up and carry on as if nothing happened. I did the same to my brother when we FaceTimed that night. It was nothing short of entertaining I’m sure.

Unfortunately I got really nauseous Saturday into Sunday and threw up the small amount of liquid that was in my stomach. I went from NPO (no food/drink by mouth) to a clear liquid diet but I could only tolerate water. My big mistake was taking three sips of cranberry juice. BLEH. How dare I? I woke up the next morning with a wicked headache, horrible abdominal pain, and nausea. Luckily they found the right combination of medication to make me feel a little better on Sunday.

Sunday/Monday
I hit small milestones. I was able to get out of bed and take small walks down the hall. The catheter came out and after lots of “tricks of the trade” like blowing bubbles through a straw in water and pouring peppermint oil into the toilet, my bladder remembered how to function. The bright side is that I no longer had a catheter, the downside was having to make the grueling 5 foot walk to the bathroom. It’s surprisingly taxing. I can now walk to and from the bathroom without calling a nurse to spot me.

Christmas Eve
Early morning was rough. At 3am my nurse was supposed to bring me pain medication but after checking my vitals and seeing that my oxygen wasn’t great she ordered a chest X-ray instead. 4 am I was woke out of a dead sleep. A woman wheeled a big machine into the room. She placed a big cold metal sheet behind my back and a heavy lead apron on top of my belly (ouch). She snapped a quick x-ray and left. I laid in my bed in pain until my doctors came around to do rounds. Though I am appreciative of my nurse being cautious, it was a bit much. Even the doctors were like “wait, really?” I spent the better part of the morning playing pain management catch up. And you know what? It blows.

As of that night I was cleared to eat solid foods, I switched to oral painmeds, and I was allowed to take walks around the 4th floor by myself.

I watched A Christmas Story and went to bed (and for those of you hospital vets you know that means sleep one hour, wake up for vitals, sleep one hour, wake up for pills, sleep one hour, wake up, call nurse to remove circulation boots, pee, sleep one hour, vitals and blood draw, sleep, rounds, repeat.)

Honestly it was a very lonely night. When I say lonely I don’t mean that I necessarily needed to be with people 24/7. I would have been just as lonely if my parents had stayed all night. Being in the hospital after a recurrence when you are perceiving everyone else in the world to be happy/laughing/dancing/eating/drinking/exchanging presents is isolating.

Social media is a double edged sword. In many respects it made me feel uplifted to receive so many kind messages of support. In other ways it felt like I was on the outside looking in on so many warm and happy moments. Moments that I couldn’t manufacture no matter what, simply because of my own circumstances. I want nothing more than my friends and family to have the BEST experiences possible. I’m not saying if I can’t be happy, no one can. It made me feel guilty for feeling jealous and down on myself.

Christmas

In the wee hours of the morning I knew I was ready to come home. I didn’t sleep well and I listened to the woman in the room next to me cry uncontrollably all night. My heart broke for her. Over the past few days I gathered that she has a newborn and considering that she was in the oncology unit it goes without saying what she is going through. I don’t know who she is but please pray for her.

I had another visit from Dr. Greenberg before the doctors did rounds. She wished me a Merry Christmas and we made plans to hang out as soon as I’m well. I’m holding her to that. She shared the other day that she is considering going into Gyn Onc. I hope she does. She was born to do this.

Shortly after Dr. Greenberg left the doctors rounded and said that I was being released. THANK GOODNESS! Get me the hell out of there. Before I left a lovely nurse, Anne, taught me how to inject myself with Lovenex, an anticoagulant. Despite facing many countless needles in the last year, it was terrifying to inject myself. I did it and feel confident that I can do it for the next month.

I settled home at my apartment in Providence in late morning. I promptly passed out in my own bed for about 3 hours. Mom and Dad have taken great care of me despite me being a terrible patient and wanting to do everything myself. They are staying nearby through the weekend to help me transition. I am in a lot of pain but can manage by myself with a lot of things. I will still definitely need help. When I figureout what that is, I will let you know.

Thank you for everyone that visited, called and texted over the last few days. It kept my spirits up. The flowers and gifts were so kind and generous. Thank you, thank you, thank you.

I hope everyone had a lovely holiday with their loved ones.

So here we are friends. The evening before major abdominal surgery. Many of you have been asking how I am. Inquiring about my mental state leading up to yet another surgery. I have to say, overall, I’m  doing decently considering the circumstances. I’m mostly just cranky because I haven’t eaten in 26 hours for surgical prep. Only 11  more to go. Rawr. Surgery is at 12:30 wish me luck (although I might die of starvation before I even get to the operating table)

Anyway this is how I imagine things will basically go down tomorrow:

Cancer: 

Me: 

Cancer: 

Me: 

Cancer: 

Me: 

Cancer: 

Me:   

Cancer:

Thanks for the well wishes and I will see everyone on the other side of the operation 🙂