The gift of momentary inner peace

Yesterday after chemo, I officially had no use for the PICC line and it was pulled from my arm. It didn’t hurt, actually, it felt like a long piece of wet spaghetti slide out from under my skin. Within seconds I was free. Free from the tubes, the daily saline and heparin flushes, the sickening smell of alcohol wipes. My arm could just be my arm and a shower no longer had to involve a sandwich bag and medical tape.

After work today I was fortunate to have one of those crystal moments of clarity where nothing serious mattered. There was no fear, no countdowns until something unpleasant ends, and thankfully no overwhelming nausea or exhaustion. I mean, all of those things exist steadily in my life, sure, but they were out of my head at least momentarily because yesterday’s PICC pull was symbolic. It was freedom.

With my new found “freedom”, I stopped home briefly, threw on a bathing suit and charged to the beach. The 80 plus degree weather at 6pm was certainly a gift as I was determined to get in the water. The waves were huge and crashed around me. The water was chilly but not biting, typical Atlantic in August. I eventually just sat down where the waves calmed and met the sand and let the water wash over me. I soaked in the smell of the ocean, let drifting seaweed cover my lap, and watched the searats sea gulls scavenge.

To put it not-so eloquently- I was happier than a pig in shit.

(This also resulted in about 3 lbs of sand in my bathing suit bottom when I got home soooo, souvenier?)

Now you may be asking yourselves, Jessica- why are you going to such great lengths to describe an incredibly average evening at the beach? Well friends, because I was denied a true summer. The powers that be filled this summer with hospitals and limitations. In short, more days than not were a total suckfest. I say this not necessarily to dwell on the nightmare that was but to highlight a single evening that brought pure, natural joy.

Tomorrow or the next day I’ll worry again. I’ll drag my feet to the hospital on Monday to add to the collection of scars for another port placement. I’ll begrudgingly sit through another chemo infusion on Thursday. I’ll take things for granted. I’ll continue to yell expletives through closed windows on the highway at oblivious fellow motorists… We’re only human right?

But for tonight tonight, I was cut a break. Nothing in the world stopped me digging my swollen ass feet into the sand, cracking the binding of a new book, and drowning out the world as the waves collided.

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Thank you universe for this taste of summer and utter peace.

 


I dig my toes into the sand. The ocean looks like a thousand diamonds strewn across a blue blanket. I lean against the wind, pretend that I am weightless and in this moment I am happy
-Incubus
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Top 5 Tuesday: What’s in your bag?

For anyone that has seen and come to love the movie High Fidelity with John Cusack you would know that he would be proud of this addition to the blog since his character makes Top 5 lists throughout the film. Luckily I won’t be listing top 5 saddest break up songs or anything like that. This is a little more practical and cancer-esque.

Now I tend to shy away from dishing out “how to’s” because there is no instruction manual for cancer and everyone’s experience is uniquely theirs. But I can offer some nuggets that have come to help me personally over the years. If you find any of it useful, perfect! If not, find comfort that I still have a day job.

When you’re in chemo you have a lot of time on your hands and comfort isn’t always optimal. Here are my Top 5 must-haves packed for a chemo infusion.

1.) A designated chemo bag

This seems like a silly one but let’s face it, chemo brain is very real and without some level of consistency I will likely forget to bring something to treatment. I generally use one of those reusable cloth grocery bags. I’m glad they’re getting used somehow because I am the worst offender of owning them and forgetting to bring them with me to the grocery store. Sorry environment. I’m trying, really.

A reusable grocery bag or tote will be enough to fit a few necessities. Keep it in your car if you drive yourself to treatment or pre-packed in the same spot in your home.

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I think we can agree that I should upgrade from stop and shop bag to this gem. GASP. NEED.

2.) A soft/fuzzy blanket

As a blanket enthusiast I have many throws around my apartment but I have one specifically that I keep in my car so that I never forget to bring it with me to chemo. Why BYOB (Bring Your Own Blanket)?

  • Hospital blankets are generally glorified burlap tarps. They don’t provide much warmth beyond the first few minutes out of the blanket warmer and the material doesn’t make for a cozy experience.
  • Emotionally it’s nice to have one blanket specifically for chemo so I am not making that association when I am trying to relax at home. That blanket serves one purpose, my other blankets are my home blankets.
  • Sometimes one of the pre-drugs for chemo (depending on your treatment) is Benadryl. If you are anything like me you’re cross eyed within a few minutes and ready for a solid chemo nap. When I’m napping I am seeking optimal comfort, especially if I’m being infused for a few hours at a stretch.
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This is what I’m 99% sure I look like post-Benadryl

3.) Entertainment

Boy is this necessary. My first stab at chemo had me there for 8-9 hour infusions. Now it’s more like 2-4 hours. You have a lot of time on your hands here. In the chemo units I have experienced there are usually televisions and maybe a few magazines hanging around. I would suggest packing one or more of these items for variety.

  • A good book. I prefer something that is going to make me chuckle. If you haven’t read anything by fellow blogger Jenny Lawson do it. You will undoubtedly be THAT person belly laughing in the chemo unit.
  • Cell phone with good battery life
  • Tablet or iPad if you have one. Good for movie watching/Netflix binging if the cable options aren’t great or answering work email if you’re still working and a true overachiever (just don’t answer email post-Benadryl…trust me. It makes for some weird outcomes)
  • Favorite magazines or crossword puzzles. Nice touch for your chemo bag for the sake of anyone volunteering to come with you for support. If you’re a chemo napper like me, your friend/loved one is going to need entertainment as much as you.

*Ok, ok so I know I cheated with #3 and listed 4 different things in a Top 5 list. You can write angry letters to the editor if need be. Spoiler Alert: I am also the editor.*

4.) Phone charger/Ipad or tablet Charger

I mean, if you’re there for a few hours killing time with non-stop Facebook and Insta-creeping you’re going to need to charge up.

5.) Sweater/Sweatshirt

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Maybe have a little bit of chill and don’t pack this one…

I’ve found that comfort and layers are key. The particular chemo drugs that I get make me immediately freezing then I wake up sweating bullets shortly after. Having an extra sweater to keep in your bag can help to manage that. Also if you’re low on magnesium and they add that to your IV, it tends to make people run a little warm

 

So there you have it, my top chemo staples for maximum enjoyment  okay-ness?

I purposely did not include water/snacks/meals because in my experience the infusion center has graciously provided that in all three hospitals that I have been in. If yours does not it never hurts to have a bottle of water to stay hydrated and a granola bar or fruit to keep your tum tum happy.

 

Cancer friends- what are your top chemo necessities? I’d love to hear from you! Feel free to leave your favorites in the comments.

 

 

 

Jello: A small & jiggly victory

It’s Tuesday and I’m still in the hospital but I’ve certainly turned a corner. Last night I graduated from IV fluids to clear liquid diet. For dinner and breakfast this morning I was able to have chicken broth, juice, jello and herbal tea. During morning rounds, an examination of my belly showed some positive bowel sounds and a softer abdomen. I then graduated to solid food for lunch. What’s that?! You heard right. SOLID food.

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I had a little turkey and tomato rice soup; so far it’s sitting pretty well. No nausea, no vomiting, no feeling like a monster has punched a hole in my gut and grabbed onto my intestines for dear life. One meal down. Let’s hope dinner stays on course.

There is no official word but I think that I could get discharged tomorrow if all goes well tonight. As much as I do secretly enjoy the adjustable hospital bed, I’ll be happy to return home to my own surroundings. I also adore my nurses and CNA’s but I definitely won’t miss 3am wake ups for vital signs and 5am blood draws.

I still do need to have chemo on Friday so as far as I have been told. The infusion schedule hasn’t changed so things will be business as usual soon enough.

One more tid-bit of positive news that I wasn’t expecting. In the midst of all of this mayhem, the CA-125 results came back from last week’s blood draw and it was 479!

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It dropped like 400 points(?)* since a month ago when it was still hanging out in the 800’s! Perhaps that steroid really did help to fight the inflammation in my body last week. I could use a small victory so I’ll surely take it.

*Hey medical professionals- riddle me this: in what unit is the CA-125 measured? “Points” doesn’t sound very official. Help. Love always, some one that should know the answer to this.

Home Sweet Hospital

I hate to even say this considering how high morale was following my last post but-

I’m back in the hospital. In fact, I’ve been here since Saturday. I felt absolutely fine on Friday, I was able to eat normally. Everything was just dandy and then boom, out of nowhere, uncooperative intestines.

Around 8:30am on Saturday as I drove home from my haircut I began to feel some abdominal discomfort. I figured I was just a little backed up and planned to put together the “let’s get movin'” cocktail of Miralax and Colace. My plan backfired as every attempt to drink fluids was met with violent vomiting shortly thereafter. My abdomen was rock hard and distended. Something was definitely not right.

My sweet Cory came to help me as I struggled to find comfort in my own skin. Finally, about twelve hours after the initial abdominal pain I called Sheila for advice and she confirmed my instinct to go to the emergency room.

The ER staff took me in quickly and made me more comfortable with an IV of fluids as well as Zofran and Dilaudid. After a physical examination of my protruding belly the ER doctor turned to me a most serious expression and said “This examination is very concerning. We’re going to send you for a CT scan”

What I didn’t know at the time is that everyone except for Cory and I suspected that I had a bowel perforation which would have been really bad and resulted in emergency surgery. Dr. Robison was on call and came right over ready to slice me open if need be. Of course, Sheila wasn’t working but left a party to join us in the ER because she’s just a good person.

We sent this picture to my Mom when breaking the news that I was in the hospital to ease her concerns. I look like death warmed over  but I’ll put aside vanity for the sake of how adorable Dr. Robison and Sheila are right here.

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Clearly this is post-pain medication. There wasn’t too much smiling going on before that.

The CT scan results returned and we all breathed a collective sigh of relief when it turned out to just be a bowel obstruction and not perforation. My relief was short lived when we discussed next steps: the dreaded NG tube.

I’ve written about having an NG tube before. For those not familiar with its function- the NG tube is inserted into your nose and shoved downward until it reaches your stomach. While it is being inserted they have you drink water out of a straw to help naturally guide the tube in place. Ultimately it feels like you are drowning and it’s the worst. The tube’s purpose is to allow the bowel to rest by sucking out fluid/gastric juice.

The ER doctor knows first hand what pure torture it is to both place and receive an NG tube so she was kind enough to give me what I now fondly refer to as “the holy trinity”: Phenergan (for nausea), Dilaudid (for pain), and Ativan( for anxiety). I remember all of the tube being inserted but nothing after it. I slept until the next morning with no memory of the multiple x-rays they did or moving to the 4th floor as an admitted patient.

I woke up the next morning, throat raw and irritated, and noticed that the end of the tube was clamped and not attached to anything? Confused I asked Cory what had happened. Double confused I asked him again because I forgot that I asked him the first time (thank you holy trinity). What a patient man…

It turns out that the tube was inserted properly but due to my hiatal hernia, it coiled up and did not stay in the stomach. Here is a visual to demonstrate how the hernia complicates things:

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The doctors later told me that I had fluid all the way up to my esophagus so it was still good that we inserted the NG tube because they were initially able to drain a lot out. Ultimately the NG tube was removed yesterday morning and we made a deal- if I didn’t throw up without the tube it could stay out. Luckily, I was able to do that and confirmed this morning during rounds that there will not be another NG tube going in.

Today marks day three in the hospital and we are slowly making progress. I am still NPO (no food or drink by mouth) but have graduated to a small amount of ice chips. They were considering clear liquids today but after listening to my belly, the bowel sounds were still too sluggish. Fingers crossed that tomorrow, maybe just maybe, I can have a few sips of apple juice.

It’s so strange how these things can happen out of the blue. One day I’m feeling 100% the next I’m in a hospital bed. So bizarre.

I want to thank my parents for driving three hours and staying overnight to make sure I was okay. They are currently cleaning my apartment because they are thoughtful and extraordinary human beings. Looking forward their visit later in the day.

I also want to thank another extraordinary human being, Cory. He jumped in his car and drove two hours to be with me without question. He was calm and reassuring even though it was probably scary for him too. The poor guy never left my side and slept in a chair at my bedside all night that first night. How did I get so lucky?

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Thinking positive thoughts for a speedy recovery so I can nom nom nom happily once again and get back to work!

Maximizing Chemocation

As I sip on a delicious Rhody from Vanuatu Coffee Roasters I soak in the last 40 minutes of normalcy before heading into a new chemo cycle. Today is the big one- Taxol and Avastin. I expect to be pretty beat this weekend but as always I am hoping for the best.

To quickly recap last week’s chemocation I REALLY packed it in. I joined Aaron, the Director of Advising, for the 2016 NACADA Region 1 Conference in Portland, Maine. It is always refreshing to see what other schools are up to, absorb new best practices, discuss issues in higher education, and to also see what we’re doing well. As my Instagram account reflected, Aaron and I were pretty damn gluttonous in Portland. You just can’t not be. Our highlight was certainly tasting the tomato fennel soup, poutine, and salted caramel milkshake from Duck Fat.

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Needless to say, my return home has resulted in compensating with a lot  of fruits and vegetables.

Just when I returned home I pretty much unpacked just to pack again. My handsome, intelligent, mancrush everyday- Cory Tysoe had a birthday! He has now reached the ripe age of 28 which means that I am officially no longer a cougar (until January when I turn 29). To celebrate we utilized a holiday present from my parents and headed to Vermont to Mt. Snow. Unfortunately the weather wasn’t totally cooperative so Cory didn’t get much time on the mountain before getting pelted by hail.

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We spent a good majority of our time testing our relationship through Farkle and Risk. Anyone who knows me knows that I am generally not at all competitive. Like for real I bowled a forty the other day. FORTY. And that was better than expected. That said, there are a few things for which I am fiercely competitive- Scrabble, Risk, and Farkle.

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I was happy to cozy up by the fireplace and toss some dice around while ruthlessly talking shit to each other although next year I may join the toddlers on the bunny hill and give skiing a shot. We’ll see…

So that brings us to St. Patrick’s day, yesterday. Sarah, my former coworker Krystal, and I threw a St. Patty’s party in the Izzy Room at Hasbro Children’s Hospital. We decked out the room in festive green, Bob and Timmy’s donated SIX pizzas, and we offered crafts and cookie decorating. Although the party only yielded three physical attendees I would still call it a success. There were several children that were too sick or not allowed to leave their rooms. What we ended up doing was essentially creating a “party on the go”. We delivered pizza and some craft supplies to a mother of an 11 month old in the PIC unit. We also packed up pizza, cookies, st. patty’s swag, and crafts for parents and nurses to bring back to the rooms of families that wanted to be at the party but couldn’t. In any case the Izzy Foundation was able to bring a little cheer to people going through tough time.

The three of us had a blast 🙂

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^ Mine is the one with the fuzzy eyebrows 

Last but not least, I met with Dr. Robison yesterday for the usual chemo exam. She was pleased with the outcome of using the steroid and gave me the green light to keep taking it in line with the chemo cycles if it is helping.

We won’t have an updated CA125 until later today or Monday so I’m not sure where that stands right now but she said that if it made a significant jump upward she would be inclined to scan me. If it is a small increase or lower/unchanged the plan is to scan this summer as we previously discussed.

Soooooo that’s all folks.

I hope everyone has a safe and happy weekend!

 

 

 

ROID RAGE! (or responsible use…either one)

Holy 180! Since I last wrote I feel like a totally different person. Mainly because I’m ‘roiding out right now.

Let’s be perfectly clear-

Not this kind of ‘roiding:

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More like starting a low-dose, short-term steroid treatment to curb concerns regarding fatigue/poor appetite/nausea/vomiting. Thanks to the brilliant Donna MacDonald, a case manager at WIH, we put into action a 10 day dose of Decadron (Dexamethasone). Decadron also helps to treat inflammation in the body which, if the CA-125 is any indication, I have a boat load of.

Sidenote: Doesn’t Decadron sound like the name of a fictional planet from some sort of Sci-Fi novel? It does to me. Oh well, I digress…

I am to take two pills in the morning for the first five days then will taper back to one pill in the morning for the remaining five days. So far the magic is working!

  • I haven’t thrown up once this weekend
  • My energy levels are unparalleled. I am usually clinging to life on Mondays, today I feel as if I slept 10 hours and drank a cup of coffee in comparison to the norm.
  • I’m hungry! The thought of food is enticing instead of stressful/nauseating. For lunch today I craved a balsamic-pesto-grilled chicken wrap and housed over half of it (which is substantial for my eating patterns of late).

It’s amazing what one simple change can make. It is really just a testament to the support at Women and Infant’s Hospital. Between Sheila (nurse navigator), Rosa (chemo infusion nurse), and Donna (case manager) they had three different reasonable recommendations to assist me in the nausea/vomiting/appetite issue. All three contacted my oncologist right away and have put plans into action. They’re the best. Seriously, people who are genuinely concerned and get shit done. Period.

I’m especially grateful for this help because yesterday was one of my best friend’s. Katie Carlson’s, baby shower. It meant the world to me to feel well enough to enjoy her special day. As you can imagine, it’s hard to stay present and soak in the special moments when you’re nauseated/throwing up/exhausted. I felt pretty optimal for most of yesterday and seeing this face (and belly) was perfect.

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Go team!

When distractions aren’t enough

Yikes, I have gone an entire month without tickling the ol’…plastics? Hm. I guess there isn’t a cutesy name for typing on a Macbook like there is playing a piano.

Whatever, I’m back. In my head I hadn’t updated because I thought that I was just coasting through the monotony of treatment with no real news. Pretty much every week consists of a blood draw to make sure my CBC (total blood count), followed by an infusion the next day, and 2-3 days of steadily increasing instances of nausea, vomiting, fatigue, and a poor appetite. I was; however, lucky that Valentine’s day weekend fell on a week off treatment between cycles so I was able to nom nom nom on every morsel of food I could get my hands on.

I have hired a professional actor to reenact how I’m pretty sure I looked during Cory and my romantic Valentine’s feast:

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Much to my disappointment, a ravenous approach to all things delicious has been the exception more than the rule lately. With every treatment it is a little harder to curb the nausea and general unpleasantness.

Tomorrow I am armed with two full scripts of Zofran and Phenergan to hopefully ensure a vomit-free weekend.

That’s really all I have for a general health “update”. Until I have another CT scan this summer (maybe June-ish?) I won’t know much more about how I am doing than I do right now. My CA-125 has been a pretty unreliable indicator of progress as of late. It’s still hanging out in the 800’s. I used to track it but I lost count. As long as the scan shows no new disease, we are happy. No new disease also opens the door to discuss tapering back treatment to only Avastin to see if I can maintain without the Taxol portion. It’s too early to really know so we’ll table that discussion for a few months from now.

Until then I’ll just keep my head down and do what I need to do.

Nope. I take that back. That’s what got me in trouble over the last month. Keeping my head down and trying to suck up frustration over physical ailments just lead to a month of feeling emotionally and physically depleted more often than usual.

So often I’m kneeling on the bathroom floor, grateful for the gentle fibers of the bathmat under my knees, retching over the toilet. I think to myself “WHY CAN’T I JUST EAT A GODDAMN MEAL WITHOUT DOING THIS?!” The next thought, just seconds later is not kind- “You have had it so much worse. Remember the hysterectomy? Remember IP chemo? I know you remember the clinical trial. This is nothing. You’re fine.”

Imagine if instead of that being my inner monologue, a friend said that to me. They would be a total asshole right? Why do we insist on being so cruel to ourselves in our most vulnerable moments?

As a result of this ongoing and dismissive mental-chatter, I was not recognizing the extent to which I grappling with the continued hurdles. What I was doing was throwing all of my energy into the students and projects at work, coming home, and binging on hours of mindless tv/movies. Numbing the discomfort with distractions.

Distractions can only get you so far. You can let your mind wander but it doesn’t forget that you have a case of the yucks (<– clearly a real medical term used often in clinical settings).

Earlier this week my Mom asked me how I was doing in just the right way for me to respond in a cracked voice and tears instead of the usual: “I’m alright”. Totally involuntary. I thought I was okay? Clearly my brain had some feelings to unload and my Mom is the best person to coach me through the yucks. An hour of crying and producive discussion about healthy emotional outlets later, I felt renewed.

After that phone call I dedicated the rest of the night to self-care. I headed straight to my sanctuary- Barnes and Noble and treated myself to two new books. Stories that could serve as healthier alternatives to hours of binge watching garbage tv. I can get lost in a book, but not for five straight hours. At some point I’ll have to put the book down and face nagging thoughts or feelings. I also bought a new, colorful, ornate looking notebook to pour those nagging thoughts and feelings into.

Later, I wandered into Panera, ordered a comforting bowl of soup, and freely wrote for about an hour. I opened the floodgates and painted a portrait of words to reflect every nagging “yuck” over the last month, or months…or years.  If my future grandchildren are to ever come across this journal they will quickly find out that sweet old Nana has a fondness for a certain “F” word not often found in this blog.

It is no coincidence that I slept more soundly on Monday evening than I have in months.

Chronic illness is a marathon. Until science catches up, there is no quick fix for ovarian cancer and the existing treatments though tolerable are not easy- especially over the span of few years without much reprieve. Self-care and kindness is essential to adapting to the ever evolving new-normals of living with disease.

I’m happy to have had Monday’s mini-breakdown turn into a breakthrough. It has energized me through the week and I am working hard to keep up the momentum. So that said I will keep my head up and be less dismissive of my own needs and emotions.

On a final note- this entry is timely as today marks the three year anniversary of The Cancer Chronicles!

Soooo if my blog was a child it would be able to speak sentences of 5-6 words, correctly names some colors, and dress itself. Way to go blog!

 

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!

 

Feeling breezy

I’ll keep this short and sweet since it is 5am, I’m at the airport, and I’m drafting this on my phone rather than writing, editing, deleting, searching for JUST the right fit and finally posting 2 hours later.

First I want to start by saying that do date 2016 has been phenomenal. Sure it has only been 13 days but I’ll take all the good I can get here.

So far I had an incredible birthday with my loved ones, and did a 3 hour yoga workshop with DDP himself. Yup for all my fellow 90’s wrestling fans, I got to meet Diamond Dallas Page.

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And now I’m at the airport waiting to board a plane that will take Cory and I to the Dominican Republic.
It still doesn’t feel real. I’m half expecting the plane to land outside of Bryant to drop me off at work.

What better timing than this week to go on a tropical vacation because we got some good news on Friday that must be celebrated!

My CT scan results served to support that my increasing CA125 levels were due to infection and inflammation in the body.

The scan showed NO new disease 👍
NO growth of existing tumors 👍
In fact, one of the tumors in my pelvis is decreased in size! 👍👍👍

I couldn’t be happier. Many a piña colada will be had.

¡Adios amigos!