Pushing Through Like I Said I Would

A throwback photo.

Sometimes I am embarrassed by how I reacted to my initial diagnosis, shocked at how immature and naive I was – invincible! cancer! fighter! At other times, I’m so jealous of who that 26-year-old was. I feel that about other aspects of my life, too, not just dealing with my disease. As time passes and as I age, more difficult things happen, which can leave me guarded, jaded and tired at times.

I feel like things used to be so much simpler, though they probably weren’t, they were just different. But what I can guarantee is that I did not know as much and now that helps or hurts me depending on the situation.

I’ve never been one to say: “ignorance is bliss.” I’m curious, an information gatherer and problem solver almost to a fault. I want to figure everything out and know about not just everything that is happening in my world, but in the greater world around me. I think that’s why I love books and good news coverage and documentaries so much, because these are things that are really happening even if we as people pretend they aren’t.

But right now, in this moment, I know too much. I know that the tremendous pain I’ve been in over the past four days means lymphoma is growing. It is very intense and very concentrated right in my hips and pelvis and sacrum, exactly where it always flares up. It’s at times like this when maybe ignorance would be bliss, and I could just pretend that it’s a fluke – too much squatting when planting our little herb garden.

My doctors and I don’t even need to directly speak it: they know I know and I know they know what’s going on. No one has said: “It’s cancer in your bones that is causing you this pain” just like no one says the ground is wet because it is raining. Why state the obvious, especially when we’re all getting a little tired of acknowledging it?

I’ve been prescribed a new cocktail of pain meds that got me out of the blinding, seething pain that was Sunday and Monday and into the uncomfortable, woozy, nauseating – though pain-free – high that has been last night and today. Tomorrow we will stick with the plan of a higher dose of Gemzar and the addition of the chemotherapy drug, Navelbine. We’ve got to stop the growth as the pain is intolerable.

When I was first diagnosed, I went at this so simplistically. It was a challenge that I would conquer. I knew it wouldn’t be easy, but I never thought it would be impossible. Now, I’m looking back at 26-year-old Karin for some of that old positivity and confidence.

In my post from May 8, 2009, entitled “Diagnosis,” I wrote:

"So it's confirmed. I have been diagnosed with Hodgkin's Lymphoma, a cancer of the immune system.  

I know I'll always remember where I was when the twin towers were hit. In my dorm room at UNH in between classes as our floor mates all started piling into our room to watch the news coverage huddled together. 

 Now I'll always remember where I was when I got this news: with three cocker spaniels, a hot dog dog, a giant poodle, a black and a chocolate lab, two great danes, a furry, white mutt and Sammy at the Granby dog park. With a slobbery baseball in my hand and Sammy wagging her tail at my feet for me to throw it, I got the call from the oncologist. An odd place to receive a life-changing phone call, but the whole thing has been so surreal that it was almost fitting.  I'm feeling better having a diagnosis and am ready to take on this challenge. I'm looking forward to getting better no matter what it takes. My oncologist is "very optimistic" and assures me that the chemotherapy is very effective and that I'm young and strong and will do fine.  A couple more tests scheduled next week then Wednesday is the big "plan of attack" talk with the doc, me and Craig and the first chemo treatment by the end of the week. Feeling overwhelmed by the outpouring of support from so many people, relieved to know what's going on in my body and that there's a treatment, and anxious to zap these cancer cells out of my system.  I will beat this. It's just a matter of pushing through the tough times."

That last statement was at the time so simple and is now so profound to me. I had absolutely no idea what I was in for. My wildest imagination couldn’t have fathomed what “tough times” would mean. But whatever was to come at me, I knew that I just had to push through it, like how we all have to put our pants on one leg at a time. Simple as that.

I guess none of us ever know what we’re in for and because of that, there’s not much we can do but promise ourselves that we’ll work through the tough times because those are part of this good life, too. 

Cutting Our Losses

MLN4924 chemical structure

At some point I'll write more eloquently about the adventures of the marathon day that was Wednesday, but these are the bare bones facts that I'm dealing with right now. 

My ESR is 118, indicating huge amounts of inflammation. The lymphoma in my pelvis is growing. At one time it was a couple spots on each side, now those spots have connected and filled in. This area showed up as very hot on my PET Scan Wednesday, then was confirmed further with an MRI late that evening to determine if the hot spot was showing inflammation from cell death or soft tissue growth from expanding lymphoma. Very unfortunately, it's the latter. We know for very certain.

There are no new areas of involvement and the hip/pelvic area and a precarious spot on my femur bone is all we are contending with at this point, but they are spots that can't be ignored. If the lymphoma continues to grow it will break apart my bones and then I'm in trouble and a hell of a lot of pain. I've been given restrictions: no contact sports, no skiing, no running, no kickboxing - nothing that would put me at risk of fracturing that femur or shattering my pelvis. However, I'm encouraged to start lifting light weights, continue my walking and yoga, as these pieces will be vital to keeping my muscles, bones and heart strong. I met with my naturopath today to discuss more diet and supplement answers as well. I hit the machines at the gym. 

Intentions 2013

(c) lifestyleoftheunemployed.tumblr.com

I wish that it were different, but I ended 2012 on a downbeat. The legitimate physical constipation that I feel has permeated into the rest of my life. I’ve been emotionally and creatively constipated too. I’ve been extremely tired and distracted, unable to focus or to fully invest myself in anything. I really let myself go over the past month with bad eating and drinking habits. I stopped practicing yoga. I started sleeping a lot. I stopped juicing. I started eating dairy and sugar again and oh, guess what? I feel like crappola. I’d venture to guess that I’m not the only one that hates themselves after the holidays.

I’ve been crying a lot, feeling lost and confused about what direction my life is taking and about where I fit in the greater scheme of things. I feel like I’m so different from everyone around me who seem to be so much more interesting and at ease – and also so different from whom I used to be. I’m now more removed, quieter, and self-conscious. I get easily frustrated at my feelings as I know it’s just my own crazy manifestations. I’m in serious need of a boost.

I looked back at last year’s blogs around this time and I was going through a similar emotional “nadir.” Maybe the end of the year is just tough for me for whatever reason. All of that hype and togetherness and connectedness fading out to just me, again alone each day trying to figure out how to make the most of it and what in the world that means.

Poetic Therapy

This isn't the first time I've posted this poem by the poet we met in Old San Juan, Puerto Rico, but its sentiment is again very appropriate. It's what I strive for – to let go of the expectations and let things go unanswered.

When I was very sick in the hospital recovering from my transplant, I'd have whoever was with me the latest read me a poem to put me to sleep. I had several books of poetry in the room with me and I'd let them choose which to read from. It was soothing and calming and digestible at a time when weighty prose was too much. Poetry helped me to envision beautiful places or just get transported by the words and rhythm. With my mind quite overwhelmed right now, little by little sounds just about right.

Little by Little

I'm letting go little by little, but I am
It sometimes hurts. I sometimes cry.
I sometimes erase it all
And sometimes I try and I can't.
But I'm letting go. I am.
That's just the way I am.
I can't help it anymore.

My mind races.
Unlike the hare
Who had patience to compete.
I'm racing to defeat myself.
It's torture in a shell
My heart has been to hell
I'm letting go.
Little by little, but I am.
I learned that now I can.

Sometimes it's good.
Sometimes it's ssweet.
There are times too
That I never meet a standard.
Where questions flow unanswered
And it's okay in itself.
I'm taking down the shelf of expectations
Crowded by imitations
I learned that now I can.

I'm letting to. Little by little.
But I am.

-Lady Lee Andrews

Settle Down, Girl

Monday is another PET Scan day. I’ve been on a schedule of one every three months. That means that once every 90 days I have a particularly rough week of worry, worry, worry leading up to the test. I’ve written about this many times before, but scanxiety is crushing and warrants some attention.

I try to get better at handling it, I really do, but the worry surrounding the unknown has a way of taking over. Remember getting nervous about a big math test in elementary school or a presentation you had to make to your classmates about Mesopotamia in eighth grade social studies? Well, take those stomach butterflies and instead imagine a sanctuary of them flitting around in your belly not because you’re worried about your grades, or if you’ll pee yourself in front of the class, but instead worry over whether the killer inside of you is on the loose – again.

I just want to know the results so we can have that data to make the most informed decision about next steps. I hate not knowing. I hate that the PET Scan results are so finicky. I hate the crazy thoughts that creep into my head: “It’s spread to your brain … it’s pressing on your lungs … it morphed into a deadly new strain we’ve never seen before … your left ear lobe will fall off.” They’re silly and unfounded, but happen nonetheless. They come mostly in the form of nightmares, though sometimes derail my thoughts during the day pushing me to tears or to a ball on the couch not wanting to talk to anyone or do anything. Luckily, I’ve been busy living life, so I haven’t conceded to the beckoning couch (unless it’s happily snuggled with Craig and Sammy watching Honey Boo Boo Child shake her belly fat).

As they say, patience is a virtue, but does the virtuosity have a cap? Having to be patient in life-or-death situations like this for more than three years now is getting a little old. F patience. The real virtue is that I have the opportunity to get this test done. I am still here to be able to lie once again in that whirring tube. To have my patience tried in the meantime just comes with the territory. I need to remind myself how grateful I am to be here and to have the technology at my fingertips to most accurately assess the state of my disease. Not everyone is so fortunate.

I’m trying to stop hypothesizing because it does me no good. I’m a very forward thinker, I’m an idealist, but also logical, and I like to string things together to solve a problem or make a prediction. Most of the time this serves me well in figuring out complex scenarios (especially medical ones), but sometimes my tendency to do this is what drives me to insanity. I need to just let it go and let it be. Whatever, man (said in stoner voice). I work on that one all day, every day.

I feel better than I ever remember feeling going into a PET Scan. [My therapist tells me that I’m supposed to stop there, to be content with that and not trouble myself with what that may mean]. But, remember, I like to connect things. I’m a figure-it-outer. So I create scenarios:

• I’m feeling pretty normal and pain-free so maybe that means all the cancer is gone, that I’ll have a completely clear scan and totally shock the medical world. I’m feeling this well even without the high-dose steroids I had been on, which reduce inflammation, hold back Hodgkin’s growth and give a false energy boost. That must mean something good. 

• However, I’ve been told by some docs that I’ll always have scarring on my bones from all the damage which will prevent me from ever having a squeaky clean scan. What if they keep treating me and it’s really not cancer at all, but just residual clean-up showing up as inflammation on the scan results?

• But, then again, maybe I just want to think I’ve been feeling well when in actuality I’ve been incredibly fatigued and my mid-back has been a little sore, so maybe the cancer is trying to creep around on my spine again.

• But, I did just join the Y and have taken a couple Zumba classes that may be tiring me out.

• The anxiety exhausts me as well – I’m probably just wearing the mental and emotional fatigue physically. 

You see? All of that hypothesizing is exhausting. I can’t figure it out. Nobody knows the answers. I just have to wait until Monday in Manhattan when my team and I can look at these pictures for some clues and direction.

Here’s what we’re looking at:

• Has the inflammation in my lungs reduced after this long steroid course? Does this answer the puzzle of whether the inflammation is exacerbated by the SGN-35 infusions? I’m down to 5mg of Prednisone now. Occasionally I have a cough, but I believe it’s more related to the nasty cold I had over the past two weeks, which I’ve finally kicked. Does this mean my lungs will be okay?

• Are the minimal sites of disease stable? Reduced? Growing?

• Any new areas of disease involvement?

• Am I cancer-free enough to be able to move forward with a Donor Lymphocyte Infusion (DLI), which would give me a booster of my sister’s Natural Killer Cells? Do I want to do this and risk the possibility of Graft vs. Host Disease manifestations?

• Do I continue with more doses of Brentuximab Vedotin (SGN-35)?  If so, I’ll get one on Monday after we make a decision based on the scan results. 

Maybe you can understand why awaiting these results makes me mildly bat-shit crazy if I let it get to me. Fortunately, I have another wedding tonight for one of my very special longtime friends, Thea, where I’ll get to eat and dance the night away in celebration of her, in the company of some of my very favorite people in the world.

I’ve had Philip Phillips singing on repeat in my head this week and was reminded that my sister-in-law, Rachel Diamond (I have to use last names as now I have two sisters-in-law named Rachel!), told me she thought of me when this song first came out. It's become a little mantra now:

“Settle down.

It’ll all be clear.

Don’t pay no mind to the demons,

they fill you with fear.”

Okay, Phil. Let’s do this. Take me home. 

A Shared Beat

Photo by Allison Hopkins Photography

“If you place two living heart cells from two different people in a Petri dish, they will in time find and maintain a third and common beat.” – Molly Vass

That ability for a heart to beat and swell with love at the feeling of another’s was so prominent recently as I watched my baby brother profess his love to his chosen partner on their wedding day. Translation: I was a blubbery mess as I watched Michael and Rachel exchange the vows they had written for each other in the perennial garden of Topsmead State Forest in Litchfield – a place that holds many treasured memories for my family. And then it happened again as I listened to Rachel’s sister and my sister give toasts and then choked through one of my own.

As tears started streaming down Rachel’s face as she recited her vows and as I saw my father’s eyes well, I too, could no longer contain my emotions and like many in the small crowd, reached for my tissues and tried to hold back the choking sobs. They were tears of sheer happiness for the true love that they found and at the honesty and openness by which they expressed it to each other.

The heart cell’s ability to find the beat of another’s is a scientific fact, but as Mark Nepo writes, that inborn ability to find and enliven a common beat is the miracle of love. It really is a miracle. How fortunate that as humans, we can actually feel what others around us are feeling, most especially those that we love. That depth of connection and empathy is an incredible asset unique to human nature.

We can rejoice fully in other’s triumphs and also feel each other’s pain. Knowing we’re all together on this crazy ride makes it that much more exhilarating. Being there to share the beauty and the challenges with each other helps to lift the burden of the bad and amplify the joy of the good times. Just a year ago, Michael was there caring for, cooking and spending the night with me at Hope Lodge. In 2012, we shared space on the dance floor while I admired his three-piece suit (complete with historic pocket watch).

I’ll Throw You Off the Tappan Zee Bridge!

A while back while I was being injected with the radioactive dye that would reveal any cancerous cells within my body, a little boy was in the cubby next to me doing the same thing. He was maybe six years old. He did not want to be at the clinic that day either. None of us did, but he was able to articulate what all of us patients in the PET Scan pre-testing room were thinking with his cries and shrills that we all wanted to yell.

In between sobs he yelled at the nurse coming at him with the IV access needle:

“Get that thing away from me or I’ll throw you off the Tappan Zee Bridge!” He screamed the threat over and over as his mom tried to calm him down and the nurse continually tried to enter his vein.

“I’ll throw you off the Tappan Zee Bridge!”

“I’ll throw you off the Tappan Zee Bridge!”

I hear ya, little brother, I thought, feeling his pain.

It gets damn tiring getting poked and prodded and having to stand up to another round of treatment. I awoke yesterday knowing that I had to go in for a sixth infusion of Adcetris (SGN-35) and I was moaning to myself: “Don’t make me go. Don’t make me go.” But I had to also tell myself that having a treatment session to go to was so much better than the alternative. 

Love.

Two of my favorites: Mer and John.
Photo by the incredibly talented Alison Lassiter, alisonlassiter.com

There was much love this weekend in a very tangible display of what happens when a lot of people come together around that love to make something beautiful. It was so wonderful to be a part of the wedding of one of my best friends who I've known since middle school to a solid, funny, deserving man who I now consider to be another one of my best friends (I'm fortunate to have many).

To celebrate with her family, who I have known since I was so young, and all of our girlfriends that have grown up together was an experience that I'll forever cherish. Every single person there was full of joy for them, there to have a good time and to celebrate and honor this amazing couple. We had so much fun with this extended group of fantastic people, instantly clicking with the friends they've gathered from all of their life paths. It's not at all surprising that these two have attracted a beautiful community around them.

It got me thinking a lot about love and the power of it. There was so much to go around: a regular love fest of happy tears and hearty laughs and hugs all weekend long from rehearsal dinner speeches to a post-wedding day school bus ride to the beach. It was real and beautiful and it made my soul so happy to stand there beside her to see her through this most important day in her life.

I truly believe that love can give us the strength to get through anything. Whether it's self love, love of a life partner, love toward a friend, a child, a pet, it's what carries us through the difficult times and what magnifies the good times. Everything is just that more beautiful when you can share it with someone you love.

Riding the Waves

Some days it takes a very concerted effort not to completely unfold. It can be just plain exhausting working to tame the beast that is my emotions being toyed with by hormone injection and depletion by steroids. My brain becomes disconnected with reality and the highs get very high and the lows very low.

I am a live wire and I don’t know myself when I will lash out or who or what will take the brunt. The man clothes piled on top of, rather than in, the hamper? The RNC? The husband’s crusted cereal bowl that never made it the extra foot into the dishwasher? The sound of too many electronics going at once? The nail polish that smudges with fingerprints because of my lack of patience for drying?

It takes a tremendous amount of focused effort to keep myself stable as I ease off these steroids, handle the chemo drugs, and continue to process the trauma I’ve been through and the realties of the unknown ahead.

Most days I feel balanced and whole with only forward momentum. But some mornings bring with them a heavy weight, an incessant ringing in my ears of frustrations and questions, worries about the big things (my sister is driving across the country and my brother is getting married in two weeks, oh, and that cancer thing), worries about the stupid things (what necklace will I wear, organizing the pantry, fruit flies, which vitamin brand to take).

On the tough days, a blanket of angst shrouds and suffocates me so much that it can literally be hard to see through my eyes, which are so blearily exhausted from taking it all in.

Sometimes I just can’t shut it off and it makes me want to writhe and scream.

Instead, I do my best to breathe, let go, ride the wave and hope to hell that once I can push myself back out to the break point, the next wave will be a gentler ride in. 

August Status Update

With my amazing group of high school girlfriends 

at Lisa's wedding in late July, now nearly all of us 30 and 

growing even closer together with each passing year. Mer

gets married this weekend and Thea in one month!

Peripheral neuropathy has started to set in. This is an expected side effect of the SGN-35. The hope is that it doesn’t progress, as I know patients who have been on it that had to come off due to debilitating neuropathy pain. For me currently, I don’t have any pain, only numbness. I’ve had no feeling in the pads of all 10 fingertips for the past week. So far it hasn’t affected any of my abilities; it is just a strange sensation like when your fingers get cold in the winter and you can’t warm them up only it’s just a small section on each finger pad that has completely lost feeling no matter how much I rub them.

I also occasionally lose feeling or get painful tingling in my feet, especially after walking for some distance. The pressure on the pavement seems to get it going. The numbness will creep up my legs some, but so far it always resolves itself after a short period of time.

I do not want this to be the reason that I have to come off this drug, which so far has been successful for me. Tomorrow I am seeing an acupuncturist to start treatments to combat this and my doctor also recommended starting up on Vitiman B-Complex. I’ll do anything to keep the feeling in my limbs.

The Prednisone steroid taper continues. On each dose reduction day I most certainly feel the lurch even though I’m only dropping by 5mg every 5 days. I am now at 20mg (down from my original 60mg started on July 12 to treat my lung inflammation). Once I hit 10mg I have to drop even slower – by 2.5mg at a time – as there is a big risk of dependency and withdrawal symptoms if the body comes off the meds too quickly.

So, that means the bloated feelings, insatiable appetite and the ridiculously swollen moon face continue. Others “say” they don’t notice, but I don’t recognize my own face in the mirror as it’s completely changed shape with the steroid swelling. I want to eat all the time. Period. I’m doing my best to make big healthy meals so there is always something good to snack on. I’ve eaten orchards worth of fruit. I could eat anyone under the table in a contest, I promise. This pit is bot.tom.less.

As I come off the steroid I’ve been feeling some achiness in my hips and joints, but it is tough to know what is causing that. My pulmonologist tells me patients tapering off of Prednisone very commonly experience that achiness. However, it’s very hard not to get paranoid that the lymphoma is again flaring in my hips. I’m also more fatigued, but overall I really can’t complain at all.

I’ve been busy with lots of non-cancer related things like freelance writing and e-communications work, gearing up to be in one of my best friend’s weddings this weekend, spending time with Craig before he’s back full-time in the classroom tomorrow (or rather nursing him after he had an epic Superman over-the-handlebars mountain biking accident last weekend), enjoying this late summer weather celebrating, relaxing and adventuring with great friends, reading, walking, yogaing and playing with Sammy.

I will get my sixth infusion of SGN-35 on Sept. 10, just less than two weeks from now, so will be enjoying what is hopefully continued recovery from my most recent infusion until then. The good part is that Hartford Hospital is now administering the drug as it has been FDA approved, so I’ll be able to receive the infusion just 30 minutes away, rather than 3 hours away. Wonderful!

Then, I have a PET Scan scheduled for Oct. 1, marking seven months on SGN-35. Pending what the results show that day at Sloan-Kettering, I’ll either receive my seventh infusion right afterward or look at a new plan. If things are looking real good and the environment seems right, we may take the steps to move toward a DLI with some more of my sister’s natural killer cells. But let’s not get ahead of things … .

Right now I’m content, nurtured and happy and looking forward to what will surely be a beautiful weekend watching one of my favorite couples start their married life together beside the beauty of the Long Island Sound. Just hope that bridesmaid dress zips up for me.

Truckin'

Five infusions of SGN-35 down. All went fine. I feel pretty damn good for one day post-chemo. I don't know how long this will last and that is a difficult reality to wrap my brain around. Dealing with this continued treatment is a constant balance between hope and despair when looking at my "future" and whatever that means. There are no guarantees except that nothing is certain and nothing is forever – the good or the bad. 

Tonight, I'll let the Grateful Dead speak it for me. This song has been coming up an awful lot in my playlist and I like it. A long, strange trip it's been for sure, but what can I do but keep on truckin'? I know no other way. 

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

This is Summer.

We saw the sun rise over the Atlantic from the 1,500-foot summit of Cadillac Mountain. It was one of the most peaceful and serene things I have ever witnessed.

I surgically opened a full lobster requiring a slew of wet naps and specialized tools used to extract then savor its sweet meat.

We spent hours reading on a blanket by the harbor watching sail boats, whale watches, and sea kayakers roll in.

We’ve been weaving in and out of cute little shops and artist stands with fun things to look at, touch and awe at. Even Sammy did some shopping with Craig in Patagonia and Bark Harbor.

I nearly took a nap in my fluffy stack of wild Maine blueberry pancakes I was so deliriously indulged.

We toured and tasted the creations of two local microbreweries getting just a little tipsy on True Blue blueberry beer and an IPA that tasted like biting directly into a hop-soaked grapefruit. We followed that up with some magnificently moist BBQ from the smoking pit on site.

We’ve hiked through just a taste of Acadia National Park’s beauty so far, Sam sniffing wildly at each evergreen, jumping in and out of lake, pond and ocean water, tongue hanging heavy in happiness from her canine smile, accepting pets from every kid that wants to say hello to her (and there are many).

I ate a waffle cone full of so much coconut and Irish mudslide ice cream that my belt literally busted open as my belly grew to happy Buddha size. Still tapering off those steroids ... Prednisone makes me a swollen fatty. 

I’m writing this from a couch in an open-air café in downtown Bar Harbor – iced Oregon Chai latté in hand. Songs from Rent and Les Mis have come over the speakers in the “Opera House Listening Room” and the sun is peeking in just enough from the cascading awnings above me.

Tonight we go out with a lobster fisherman to learn about the trade and maybe see some seals honking at each other.

And, it’s only day 4.

We’re sun kissed, sore muscled and schedule-free. This is summer vacation.  

7 States.13 Days. Back Home in One Happy Piece.

Taking it all in at Rainbow Vista, Valley of Fire, Nevada

This is one of those get-everyone-up-to-speed blogs to update my health and life status, as I know so many of you care and are wondering what is happening. Then, I will backfill chronologically with the huge backlog of blogging I have to do. So – like it or not – you’ll be reading a lot from me from now on. I have much to share and many stories ready to burst – about my cancer treatment and life otherwise.

I’m back home in Connecticut after slews of wonderful traveling. The trip out to see my sister in her Las Vegas, Nevada element finally happened after her living out there for a year and a half. That my parents and brother could be there too was an incredible bonus to be able to have that time as the Dubreuil family. The fact that it all tied in with a childhood friend’s wedding in Malibu and that Craig and I got to spend a weekend in Los Angeles with each other and several more of our Connecticut friends and Craig’s adopted second family since childhood? This was an even bigger stroke of serendipity. All worked out so well.

It was an incredible trip full of beauty of all kinds. Did I feel like a million bucks the whole time? No, of course not. But I live on a different wellness scale, and I was thrilled and proud and astonished and how well my body did with all the activity. The reason I went back and had a PET Scan on the Friday before I left on vacation was because I had three nights of soaking night sweats and was having a lot of chest discomfort. This prompted an emergency visit and scan though I had just returned home from New York City after completing radiation on that Wednesday. Because I was planning on going away the following week, we needed to assess what was going on. As I wrote in my last update, the PET Scan looked overall pretty good; the clean areas on my sacrum and spine no less than astonishing. It wasn’t consistent with how I was feeling.

Those feelings may have just been effects from the radiation and coming off a med. The radiation gave me extreme esophageal irritation to the point where even a glass of water hurt to swallow. I had never felt that before and my hope is that I misinterpreted that chest discomfort to be lymphoma creeping in at a rapid rate, because it’s not.

Vinblastine Treatment 4

I'm feeling decent, though the Vinblastine single-agent chemotherapy that I'm on is pretty tough. The primary side effects have been fatigue, deep tissue aches, jaw pain and tightness, and neutropenia (very low white blood cell count/immunity). The drug is given through a short syringe my nurse injects into my port by push after my anti-nausea and steroid premeds are run. It’s incredible what affect such an innocent looking amount of medicine can do. I can’t let the dosage fool me; it packs a punch!

Scaling the wall 

The Vinblastine has done a number on my white blood cell count. The plan was to get weekly infusions, but my bone marrow has said otherwise. To give it some credit, I have been very heavily treated and my marrow is quite compromised. I’m proud to see that it has still been able to produce blood cells at all – for this I am grateful. I’ve never been unable to rise back to normal blood count levels with time or drug assistace.

To remain safe, my WBC count has to be at least 1,000 in order to receive treatment. It hasn't been able to stabilize quickly enough to endure the original, aggressive weekly plan, so I've been more on an biweekly treatment basis. My counts were too low to get treated last Wednesday (ANC 0.6), which is why I felt pretty good last week and this past weekend without the chemo effects. In fact, I felt good enough for a day of indoor rock climbing with Craig. It was our first time and something we both loved. I especially loved the sweet reward of getting to the top and the mental challenge it took to figure out how to get there. I had no problems beyond any normal climbing fatigue and a few battle bruises endured from banging my knees into the wall. It was an exhilarating, rewarding and gratifying experience. There will be more of these types of adventures to come for me in 2012.