Rhode Island Escape and CEP Start

No energy to write a long blog, though I’ve got many story nuggets collected. Consider this an executive summary of what’s been going on with me.

We spent two weeks in Narragansett, Rhode Island. It is beautiful, especially the beaches. We rented a cottage the first week with Craig’s brother and his wife and our niece and nephew; the second week with my parents and sister. We had visitors on top of that and it was relaxed and easy – for the most part.

Highlights:

-Getting to play with our niece and nephew in the sand and water and be with them for their morning and evening routines. They are adorable.

-Spending time together with our brother and sister-in-law who we rarely get to see.

-The sun and ocean and sand: warm, sparkling and soft.

-Bringing our beach chairs right down into the water and reading a book while the waves rode over our feet.

-Being with my parents and sister on the beach all day bringing back so many childhood memories.

-Steamers.

-Lobster rolls.

-Del’s frozen lemonade.

-Sunset cruise in Newport Harbor.

-Staying for a night at a special friend’s fabulous Newport ocean-side beach house – even though Craig lost the key and the debacle that followed.

-Escaping for a favorite couple’s wedding and reconnecting with many college friends from UConn.

-Watching Jaws on the beach with thousands of others on beach chairs under blankets with the ocean and a full moon behind us.

-Visits from friends and their kids and even an overnight with my parents’ longtime best friends and their son.

-Fantastic outdoor showers.

-A visit from my brother and his wife on the last night.

Lowlights:

-Adjusting to the side effects of the difficult CEP oral chemotherapy I am currently on – incredible fatigue, lightheadedness, thrush and mouth coating, no appetite. I started it on vacation so every day brought a little surprise. 

-Difficult mornings/early energy then big crash that didn’t jive well with other’s schedules.

-Major frustration surrounding how weak I am and not being to help out much with the kids or beach packing or anything, having to be so focused on not throwing up, and on garnering the strength to get my bum from the house to the beach.

-Breakdown moments missing my old days of swimming and boogie boarding and biking and paddle boarding – all of which I couldn’t do. Tried to push resentment away but it was difficult.

-Breakdown moments surrounding people having to help me and again, not having the energy I wanted. I had to keep shifting expectations and knowing that everyone else was there for a slow, relaxing time too and all did their own thing in our own time. It was very hard to let go.

-After one week on the CEP, I had to get my blood counts checked at the local hospital. Got a call that night from Dr. O that it was unsafe for me to go through the night without a transfusion. My platelets dropped to 6,000 and my hematocrit was under 23%. I spent the night in the ER/hospital with Craig receiving both blood and platelets. My port leaked and I woke up covered in a bloody mess. Otherwise, the nurses were very kind and the facility beautiful.

Because my counts dropped too low, I have been pulled off the CEP regimen until they rise. This was not unexpected as we knew it’ll be a fluid process as we watch how my body reacts to it; that’s the only reason I signed onto the idea knowing that there were no hard and fast rules but that we would listen to my body. I have not been on treatment for about 9 days now, only remaining on the Prednisone which is the “P”. I’ve been on Prednisone for almost two years now regardless, but it still makes me crazy. I’m very emotional and still dealing with breakthrough pain, pain management and functioning on narcotics trying to find some kind of balance.

I was in the hospital again for the day yesterday needing more blood. It is obvious that we will need to reduce the dose of this regimen or move on from it. I’m worried about playing catch-up again. The longer I am off of treatment because of low counts, the more chance there is of the cancer growing. Again, seeking that magic drug that won’t knock me down and will just keep things at bay.

We’re now talking about adding in Rituxan, which has just started being used off-label for CD-20 positive Hodgkin Lymphoma. It is a targeted antibody that has proven effective in NHL and CLL. Supposedly no side effects since it is even more targeted than SGN-35, however, big risk of scary infusion reactions.  I think that it is worth a shot though.

I took a complete break from all correspondence, social media, writing, blogging, etc. so it’s been a bit of a crash landing getting back into reality. Having everything scattered and unopened does not help my anxiety level. I can’t run and hide from reality forever. I just want to be comfortable physically and emotionally again and am working day by day to get there: some days are easier than others. Ones spent on the beach with the people I love were certainly the easier ones. Now it’s back to being alone every day and trying to figure all this shit out. What do I do with this time? How do I make these decisions? What if I’m just plain tired and don’t want to deal with any of it? Why can't I just keep burying my head in the Rhode Island sand?

Wild child, Anna. 

Big boy, Jake. 

Our Bonnet Shores rental - perfect.

The ladies in the back of the Jeep. 

Fellow sailors.

Newport sunset cruise. 

Beautiful Buddha in the sand. 

Flowers bigger than my face at the Umbrella Factory - and I have a big Prednisone-swollen face. 

Perfect set-up. 

The whole gang on the last night. 

Shift in Plan

I am here and okay. There have been some changes but I feel strongly that they are the right ones. I am no longer pursuing inpatient IVAC. It did not hold the disease for more than a couple of weeks and for the massive side effects it caused and all the required transfusions and hospital time it required, it seemed against all logic to keep going with more cycles. I’m having unmistakable lymphoma pain.

We’ve regrouped – long conversations with Dr. D, Dr. O, my therapist, family, special friends and most importantly, myself, over the past couple of weeks. I have decided not to pursue a third transplant at this point. I am trusting my gut and my instinct on this one, which are speaking to me very strongly. I am not on board mentally, physically or emotionally and I’m most concerned about quality of life right now. I would need to be in close-to-perfect remission

With that said, tomorrow we head for a beach vacation in Rhode Island where we’ll spend time with my brother- and sister-in-law and niece and nephew and then my parents, sister and maybe brother and wife with friends dropping in and out as well. Sam Dog is coming, too. I know that the sea and the sand will do wonders. We secured the house rental months back, and I'm so excited that the timing actually worked out for us to make it. 

I’m starting up an oral low-dose chemotherapy regimen today, which I’ll be able to bring with me. I’m getting hooked up with at-home Neupogen shots in case I need them. I’m able to get bloodwork checked at a lab down there. I’m in the hospital right now getting two units of red blood cells to boost my energy as my counts were very low and I’ve been very symptomatic (hematocrit of 7.4). Dr. O and his team are doing everything to accommodate this vacation realizing, as always, the importance of being able to manage this disease while still living my life.

I hope to have some quality writing time with my laptop over these two weeks away as well. I’ll write in more detail about what this all means but that’s the gist. I’m looking forward to sunsets over the ocean, lobster rolls, outdoor showers, and plopping my toes in the water, ass in the sand.

This is Summer. Part 2.

Captain Jack reeling in the catch on the Lulu.

From the vantage point of the Lulu lobster boat, we saw both gray and harbor seals basking on a rocky island and their little baby pups with whiskered noses splashing in the ocean waves, three bald eagles perched above, and slews of indigenous sea birds. We asked dozens of questions of Captain Jack as he educated about the Maine lobstering industry, reeled in a trap of these fascinating crustaceans and taught us about their anatomy, mating habits, incredible regeneration abilities, and Maine’s conservation efforts.

We walked with Sam Dog to Bar Island, accessible by a sweeping sandbar that is only revealed at low tide. Miss the tide change, you don’t make it back. 

Taking a biking break on the Carriage Trails.

After very active mornings of outdoor adventures, huge mid-day naps were taken sprawled across the couch or bed of the adorable downtown Bar Harbor apartment we stayed in.

We found a great dive bar with “awesome hour” where we relaxed and played Finger Ringer and Rummy 500 while snacking on shoestring French fries served in a metal dog bowl.

Our bikes took us along the miles of carriage roads that wind through Acadia, making a big loop through the mystical scenery of Witch Hole.

Our Jordan Pond table view.

We discovered Acadia hiking trails that took us along boardwalks above marshes, through knotty pines, and along cobblestone seashores, finding perfect nooks for picnic spots to eat our home-packed lunches along the way.

After one bike ride we snuggled onto an outdoor table bench at the Jordan Pond House where we indulged in their famed hot popovers with homemade strawberry jam, decadent sandwiches, and fresh squeezed lemonade and blueberry herbal iced tea while taking in the beauty of the pond, Bubble mountains and surrounding forests.

The crisp, fresh water of Echo Lake reflecting the astounding green covered mountains that hug it turned a tootsie dip to test the water into a swim in my clothes I just couldn’t resist. I dried by the wind and the sun of the topless Jeep while we explored surrounding harbor villages.

An unplanned, irresistible dip in Echo Lake.

I abandoned all my anti-inflammatory, no sugar, no dairy diet restrictions for the week and indulged in wild Maine blueberry pie and more ice cream. The second ice cream night was shared scoops of the flavor “I Haven’t Decided Yet …” from CJ’s Scoop Shop made with Reese’s peanut butter cups, Oreos, cookie dough, chocolate chips, chocolate swirl, ya know, everything but the kitchen sink. I went all in.

One solid rainy day met a patio breakfast of berry muffins and crab and cheese omelet with our feet in a flood puddle but our heads dry from the rain. With full bellies the rest of the day was spent reading, writing, and napping inside to the soundtrack of the raindrops and thunder. We capped the night with pizza and a showing of the new Ferrell/Galifianakas flick The Campaign in the historic, though musty, Criterion Theatre.

Boardwalk trail near Sieur de Monts Springs.

I tried to catch another sunrise, leaving Sammy and Craig to sleep as I ventured out to Cadillac Mountain at 4:30 a.m. However, the dense fog made it impossible to see much of anything at all. The higher I drove, the denser it got, so instead I took a walk around the summit through misty clouds and whipping wind with the hundreds of others who had come out in hopes of seeing the sun rise from ocean to sky. Though there was no spectacular sun display, on the drive I did spy a family of deer – a buck with a full set of antlers and his posse peering at me through the forest.

Our bags are packed and early tomorrow we will be on our way home to Connecticut. First will be a stop at Sammy’s now favorite Maine spot: Little Long Pond where she can run free, off-leash bounding through this little piece of doggy heaven where there’s forest and water and mud and lots of other dog butts to sniff hello at.

Happy explorers.

To break up the 8-hour trip, we’ll stop half-way to reminisce around the old stomping grounds of my (and Craig’s honorary) alma mater: the University of New Hampshire in Durham. Kittery, ME and neighboring Porstmouth, NH are on the itinerary.

This summer getaway has been no less than perfect, a far cry from where we were last summer. What’s even more wonderful is that we’re eager to return home to a place that we love just as much and to the people that we miss. What a fortunate situation to be in. We’ve been humbled by the beauty, relaxed by the ocean air, and sated by all the exploration.

Monday brings us back to New York City for another SGN-35 infusion. I’m not exactly looking forward to that, but if it’s that drug that is allowing me to be this active and making me feel this amazing then it’s worth the few days of crumminess it will cause.

To balance the treatment trip, Craig and I are both looking forward to delivering the heaping amounts of donated goods we collected from our generous community of loved ones into the hands of those who need them at American Cancer Society’s Hope Lodge NYC – last year’s summer vacation spot. 

Our "Downtown Dog Friendly" apartment on the second floor of the Acadia Veterinary Hospital.  Random, but ideal!             

Looking back from Bar Island to downtown Bar Harbor across the sandbar. 

“Live in the sunshine. Swim the sea. Drink the wild air.” 

– Ralph Waldo Emerson