Make Plans and Cancel Them (Maybe)

We measure wellness constantly. In my world this is mainly accomplished by making me hold my breath while being shoved through an oversized donut (CT scan) or sucking blood out of my veins by a professional vampire (phlebotomist). Just last week my primary care measured wellness using a battery of blood tests that lead me to believe that she thinks I’m malnourished. BUT in the encouraging words of my PCP: (*clears throat for best thick Russian accent) “Just LEEETLE beeet more protein. You be okay.”

Not a week has gone by in recent years where I didn’t have some kind of medical test keeping tabs on me. Are my CA-125 levels up? How are my blood counts? How big are those tumors?

It wasn’t until just today that I realized there is another test of wellness, albeit a very simple and unscientific test…

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My willingness and ability to make BIG plans and keep them.

Now I don’t mean dinner and drinks on a Tuesday night after work (although keeping real pants on after 5pm is a drag). I mean looking six months down the road and saying, “Well, heck yeah! I’m absolutely down to fly to Iceland and explore aimlessly.”

Not that Iceland is set in stone but I use it as an example, a benchmark really, for my confidence in my body’s ability to behave for more than 10 goddamn seconds at a time. There was a time, not long ago, that the thought of leaving the country with this illness terrified me. What if I have an intestinal obstruction? What if I’m too sick to stick to our plans? Straying far from Women and Infants, my medical security blanket, seemed impossible.

Just a year ago there were days where I wouldn’t even commit to going to a restaurant in anticipation of throwing up endlessly and/or having my stomach explode.

Now, I’m in a place where I feel well-enough, more often. Not great all the time, far from it. But well-enough to take greater control of my desires in life and the confidence to carry out those plans. So when Cory pitched the idea of researching Iceland, my first thought wasn’t “holy crap what will I do if I’m too sick?”, it was “holy crap I totally need to save every spare penny to make this happen.”

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One of the best pieces of advice that I have continually soaked in from other cancer crushers is “make plans and cancel them”. Look to the future, always, but give yourself permission to back-out without guilt if you get there and your body isn’t cooperating.

So aside from the tumor markers and scans, my newest (and possibly most important) measurement of wellness is the frequency and manner in which I look to the future and make big plans. To plan beyond the everyday is certainly indicative of a slow and steady increase in wellness, quality of life, and most of all- PROGRESS.

See you under the northern lights.

La Vida es Buena

I have a lot to report on so you should probably grab a snack and a cocktail and get comfy.

So far 2016 has brought some great energy and experiences. I could probably ramble on for a few thousand words but you have lives to get back to so I’ll try to condense as much as possible.


 

Quick Thanks to Choose Hope Inc. for seeing Emily Nason sport their headband at the NOCC walk and reaching out to her. As a result of that they sent me a TON of merch and a beautiful handwritten card for encouragement. They are fantastic champions for cancer research and support so please check them out.

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Health Update:

Prior to departing for La República Dominicana, I received the BEST news that my CT scan was stable and one of the pelvic tumors had even reduced in size. It was like getting an elementary school report card with comments like “Your tumors have been very well behaved and much improved! Plays well with others.”

When I returned from vacation I had a routine check up with Dr. Robison. Much to my surprise she wanted to talk to me about next steps and potential treatment modification for the near future. So here is one possibility to consider:

-May-ish would mark the one year point of being on this treatment plan. She is going to scan me again around that time. If the scan is still stable (unchanged) or tumors are shrinking she is willing to let me make the decision to opt out of Taxol (the chemo part) and just do Avastin (the antibody) once every 3 weeks. That is an AMAZING prospect!

She is leaving this in my hands. We know Taxol works so if it would make me feel more secure to stay on it, that’s fine. From a quality of life perspective I’d be interested in testing the waters with just Avastin. If I become symptomatic again we can just throw me back on Taxol, no problem. She assured me that it would not impact Taxol’s ability to still work if I go off and on again if we needed to. Sounds pretty good to me! The next few months will be critical.

After this past scan I wasn’t even going to bother to ask about my CA-125 because I figured it would still be high. Sheila texted me today to let me know it went down from 785 to 723. What a pleasant surprise 🙂3478638


Vacation:

¡Ay dios mío! We had a REAL vacation! Cory and I spent the last week in Puerto Plata, Dominican Republic and it was 1000x better than I even imagined.

We initially hit a few snags. We had a flight from Providence to Newark that was delayed by several hours due to a mechanical issue. For that reason, we missed our connection in Newark to Puerto Plata and could not leave until the next day. After a lot of fighting with United Airlines (that had the most atrocious customer service) they begrudgingly sent us to Newark that day and put us up in the airport Ramada for the night with a couple food vouchers.

Thank GOODNESS I was with Cory who totally kept his cool because I was so frustrated with United I flew into a blind rage and had to walk away. To be clear, I have the true inability to “pop off” on others, especially people in service positions so “blind rage” translates to me hysterically crying and trying to pull it together crouched behind an ATM.

It wasn’t so much the disappointment about losing a day, it was truly the rude way in which we were spoken to and lack of problem solving on the part of United that drove me over the edge. The first woman we spoke to had an attiude that translated to “Well, not our fault. Go home.” Additionally, when I’m at the airport talking to United I should not have to CALL A CUSTOMER SERVICE NUMBER to resolve a problem only to be told that we shouldn’t be calling and need to talk to the ticket counter.

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On the flip side, Expedia’s customer service was unparalleled. I called while Cool-Calm-Collected-Cory dealt with United.

Expedia was totally apologetic and didn’t put the burden back on us. They not only called the resort for us but they also refunded us for the night we missed. They were unable to re-schedule our shuttle from the Puerto Plata airport to the resort so instead they gave us a $50 credit which was more then the value of the shuttle. After this experience I would 100% use Expedia again. Here’s to you Expedia-

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In a nutshell once we got there, the vacation was great. Our resort was small and had a nice community feel. We even made friends with a few of the other couples there. So I should thank Gabby, Alan, Nicole, Paul, Brian, Jen, Rob and Rachel for enhancing an already great experience (and being the best cheer section- explanation to come).

Highlights:

  • The fact that we asked of a king sized bed but were instead given two queens pushed together to form a MEGA BED! Sprawling commence! Cory hated it, I loved it.

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  • They also stocked the rooms with a gallon of water every day so people wouldn’t get sick from the tap water. Restaurants and bars also always had water from a jug, never from the tap.
  • Parasailing for the first time. How unreal! Incredible views of crystal clear ocean, mountains, and reefs. We were the only ones that went at that time so we had an extra long ride. I’d say we were in the air for at least 30 mins. I must do this again stat. I highly recommend the Seapro company for anyone visiting Playa Dorada in the near future.
  • Getting a $10 massage on the beach while I sipped on a piña colada and stared at the ocean.
  • Full day catamaran trip to two reefs in Sosúa for snorkling
    • Side note: It is the beginning of the whale migration! We not only spotted the first whale of the season but it came right up to our boat. It was like standing next to a school bus. Simply breathtaking.
    • Below are Cory and I soaking in the sun on the front netting of the catamaran on our return trip back to Playa Dorada:

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  • Sea kayaking (total redemption from my last attempt in Australia when Matty K and I capsized and nearly drowned)
  • Winning 2nd place and a bottle of rum in the Blue Bay Villas Doradas Ideal Couple Contest with Cory. Basically we were dragged on stage and had to do four “double dare” like challenges. It was a close race but we lost ever so slightly to a Slovenian couple. I thought we crushed it. I was also so happy to look into the audience and realize our new friends were all there cheering us on. Totally unlike Cory and I to do something like this but it was ridiculous and memorable for sure.

Yes, photos exist. Will I be posting them? Jury is still out on that one.

  • Our general routine of wake up, read a little and sip on a coffee by the spa pool, breakfast buffet (with our favorite waiter Rafael), beach time until 2 or 3ish, open air lunch, pool time/swim up bar/contests/activities around the pool until about 5:30, nap, dinner, show, bed. (So remind me again why we came home? Do advising positions exist in Puerto Plata? Surely they need a lighting salesman with all of those resorts. Hmm- Cory- let’s bone up on our Español and rethink our living arrangements…)

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  • The service as a whole- The Animación Crew (entertainment crew) was amazing. They constantly were hosting games, contests, dancing, and engaging all of the guests. Huge shout out to our boy Alfredo (the most enthusiastic dancer I’ve ever seen), Coca Cola, James Bond, Veronica, and Barbie. It felt nice that everyone from the entertainment crew to the servers to the bartenders got to know you personally.

Cory has at least 700 pictures/videos to sort through so unfortunately I don’t have many more to post right now but hopefully this will give you a little taste of the paradise we were so fortunate to experience over the past week.

I’m oozing with gratitude to be in a position to have this experience. I feel that my batteries are totally recharged, I am relaxed, and I am ready to take on the next few months.

¡Adios amigos y amigas!

 

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…