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. 

We are cutting our losses with the Revlimid and moving on. The drug did give me three wonderful months relatively pain-free and overall "normal" feeling. For this I am grateful. My doctor and I only hoped that it would hold for much longer. But it didn't, and this is where we are. This is my post-allo world. I need to continue to swing from clinical trial to clinical trial, novel drug to new drug combination to get the most time I can out of each one. I am buying quality and quantity of life here and hoping that science keeps pace. 

Next in line is a Phase I clinical trial being hosted by Dr. O at Columbia using a drug too new for a name, but still only known by call letters: MLN4924, a novel inhibitor of Nedd8-Activating Enzyme (NAE). It works in a completely different way than anything else out there. It's a first in its class type of drug targeting a specific enzyme that may be involved with cancer growth. 

After talking thoroughly with Dr. O and his team and consulting with Dr. M at Sloan, talking it through with Craig and my mom, it seems that this is the best shot right now. What's a p in the a is that it will require me to be in New York City for an extended period of time. If space is available I'll likely be staying at the American Cancer Society's Hope Lodge again, probably for about three weeks. The subsequent cycles of the drug will require less testing and bloodwork, so hopefully I'll be able to commute back and forth for treatment though it will be every few days. 

We also have the issue of our San Francisco trip and the San Francisco Writer's Conference. I'm not sure how and if we're going to be able to make this work around the start of my treatment. I have also been cast in a local production of The Vagina Monologues which starts up rehearsals next week with a performance the first week in February. Not sure if I'll be able to take part in that any longer either. There are lots of questions and logistics management that remain. Frustrating and saddening. It sucks. 

Timing is everything in these cases and rules on clinical trials can be strict. It's also unsafe to wait too long to get onto this treatment. Right now I'm dangling here on no treatment with known cancer on the move - not a comfortable place to be. 

Sure, I'm a little angry; I'm very disappointed; and I'm just thoroughly exhausted with the prospect of so quickly having to pick myself back up yet again and gear up for another new treatment and all that that will bring. But I don't have time to delve too much into these feelings as I'm in action and complementary health mode. So much to figure out. 

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.

Physically, I also feel pretty crummy. The wonder drug I’m on seems to have started taking its toll – or, the lymphoma is flaring. Either one sucks. I’ve been on the Revlimid pills for a solid three months now, currently taking 10mg nightly and 20mg every fourth day. I don’t know that I’ll be able to handle that regimen much longer. I have a PET Scan scheduled for next Wednesday, Jan. 9, my first since being on this drug. We’ll see how it’s working, if I need more or less of the drug, if I’ll stay on it, or what the next steps might be. I’m trying not to hypothesize and trying rather just to be patient and wait for what is to come – whatever is to come.

A new year brings with it a tremendous amount of potential but for me it also brings a tinge of fear as I’m so accustomed to each year bringing some crazy new medical challenge. I hope that this year is different, however, and it brings positive challenges surrounding my writing career and building a family. With each year that I make it, I find a tremendous amount of pressure because I realize that I’m being spared for a reason. Someone wants me to keep going and I need to figure out why. With every Jan. 1 that rolls around I’m given this incredible gift of entering another year of life. For that I am so incredibly grateful. I want to do the absolute most with it, which can be so exhausting. I put an awful lot of pressure on myself and I need to stop doing that and begin better placing my energies.

I need to get out of my own way and get my writing out to literary agents in hopes of actually landing a book deal for my memoir. It needs to get out of my laptop/head and into the hands of people that can do something with it. I did a lot more writing in this past year, but not enough of getting it out there. I need to knock off the shyness and get a better plan of action. I’ve been rejecting myself before even trying. I have gone through all 425 pages of my manuscript, which I’ve edited and am now whittling down to something much more manageable. Simultaneously I’ve been putting together a book proposal, which is currently a fragmented mess. I need some help and direction.

Kismet seems to have stepped in to bring me the opportunity I need. I found out today that I was awarded a full scholarship to the San Francisco Writer’s Conference, including entrance to the Speed Dating with Agents event. I am beyond floored and humbled that I was the winner. I was chosen based on a piece I wrote about writing as healing. The conference just happens to be three days before our planned vacation to San Francisco this February anyway, which is why I went out on a limb and applied.  I’ll have the opportunity to put my work and my face in front of dozens of agents, editors, publishers, and famed writers. I will certainly have my work cut out for me between now and February to get this memoir into a tight proposal package. This is just the pressure that I needed.

We are also exploring surrogacy options looking for someone to carry the three embryos Craig and I cryopreserved after an IVF procedure in 2010 before my first transplant. I have abandoned the hope that I’ll ever be able to carry those embryos to term myself. It wasn’t even a difficult decision, as I know that my body would not be healthy enough to handle a pregnancy, nor do I believe that it would be safe for a baby to grow within it with all the toxins that are lurking in there. However, we still have three vials of potential life – our own DNA that we are ready to attempt to bring into the world. Now that we’ve realized we’re not waiting for the pregnancy go-ahead for me any longer, we just need to find someone who may be willing to help us fulfill the dream we have of becoming parents. Bueller ... ? This will no doubt be an incredible new chapter in many ways. We talk often about what it will look like.

For the past two years I’ve listed the highlights of the previous year and my intentions for the next. So, for tradition’s sake, I’ll do it again. Last year, my intention was to “let go of the life I have planned so as to have the life that is waiting for me.” I believe that I worked very hard at that this year. 2012 was a year of rebuilding and growth. Without such a regimented treatment schedule, I had more freedom to explore what life has to offer and what I have to give it. However, I’m not there yet. I still get caught up on where my life would have been without this disease and need to continue to pull myself back and focus on all that I have, not what I don’t.

For 2013, my intentions are:

• Stop questioning so much
• Eat, sleep and exercise better even when I’m feeling well, especially when I’m feeling well
• Give myself some breaks and be more understanding with myself when I am having a bad day or a tired day or an angry day. I need to allow myself that. I’ve been through a lot of shit.
• Write. Write. Write.
• Land a book deal. Period.
• Get my sparkle back (Shine bright like a Diamond as Rihanna would say)
• Be more connected to people and causes, not so afraid of opening up fully
• Take a leap of faith at becoming parents, while understanding that the odds are slim, but that the possibility is true
• Volunteer consistently so that I can finally give back all the good juju I’ve received – many ideas on this front
• Create a better routine for myself that allows for some sense of normalcy
• Continue to challenge myself with new work projects and expand my little consulting business
• Spend more quality moments with the people that are special in my life
• Love myself even when times get hard
• Continue to build a strong body/get back into shape  
• Become part of a community – working alone can be very lonely
• Be more outspoken
• Make a difference
• Pay it forward
• Push myself out of my comfort zone more: no more hiding behind the cancer traumas. The past is the past. The future is unknown. All I have is today.

The quote I intend to frame my 2013 around is: 

                                      

And in the same vein:

"We must continually be jumping off cliffs and developing our wings on the way down." - Kurt Vonnegut 

There is nothing to be afraid of anymore. There is no need to hold back and worry about the “what ifs” because there are no answers to those questions; the only answer is what’s happening in the now. All I can do is try, to push, to experience, to explore. I’m sure I’ll fall at times, but I know from experience that the figurative net will catch me and I’ll get back up and try again. 2013 will be a series of leaps for me.

Standouts from 2012:

• In general, one of the best years in recent memory. It is the most stable my life has been in a very long time. The treatments I was on allowed me to live my life relatively unaffected. Except for a couple small blips, things were smooth and life was glorious.
• Had a piece of my writing staged by professional Broadway actors and performed in front of an audience of hundreds. Bonus: I just received word that a piece I submitted this year was chosen for to be staged for the 2013 production!
• Had my first op-ed piece published in the Hartford Courant
• Took a non-fiction writing class and attended a few writing festivals which helped me to gain confidence, skills and a better understanding of the industry.
• Except for very few exceptions, I stuck to my blogging twice a week goal – though like today, Tuesdays sometimes spilled into Wednesdays and Friday posts became Saturday morning posts, but that’s not the point
• Traveled back to LA to see a friend get married and do some further exploring of Venice and Santa Monica, which have now become some of our favorite places
• Traveled with my family to explore the natural treasures of Nevada and Utah (Valley of Fire, Zion National Park, and Vegas included)
• Attended First Descents Surf Camp where I met some incredible fellow young adult cancer survivors and learned how to surf
• Spent a lot of time stand-up paddle boarding along the river with my husband with the board he got me for my birthday
• Wrote some interesting pieces for Hartford Hospital’s magazine
• Had what I consider to be one of the best summers of my life filled with adventures, friends, warmth and exploration
• We got a Jeep Wrangler - our dream car - and loved every minute of riding with the top off, off-roading and now ramming through the snow
• Spent time on Cape Cod with an incredibly dear friend
• Marked my 30 year milestone with a big outdoor bash at our home to celebrate both Craig and my birthdays and my one-year post allo-transplant, complete with taco truck, live band and bouncy house
• Gained back the 30 pounds I had lost during transplant
• Lived in NYC for two weeks while receiving targeted radiation enjoying every minute in the city (except for those on the radiation table)
• Spent a wonderful week in Bar Harbor, Maine with Craig and Sammy Dog: the absolute perfect vacation exploring the beauty of Acadia National Park and the quaintness of Bar Harbor from our little dog-friendly apartment above the vet clinic.
• Lost a very dear friend, a loss that I feel every day, but a spirit that I can look to for strength and guidance
• Was there to dance and celebrate as six sets of friends got married throughout the year
• Welcomed in a new sister-in-law and experienced all the excitement of my brother getting married this fall

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).

                                                    Photo by Allison Hopkins Photography

How fortunate that I’ve found my own soul mate and then been able to rejoice in that all over again watching so many friends find theirs, and now, my handsome brother starting his married life? The same dear family friend who conducted our ceremony married them, before my Dad’s 1930 Model A Ford whisked the newlyweds away as it did Craig and me five years ago. As I said in my toast to Michael, I was a very proud sister that day, and am every day. And, now I have another sister in Rachel and could not be more thrilled. I've got some incredible heart beats surrounding me that I'm honored to sync with. 

I look forward to making many more memories together and to more milestones to accomplish and stand witness to. I relish these moments deeply. The morning of Mike’s wedding day I woke up and whispered to the world how grateful I was to not only be there to take part in it, but to feel well, fulfilled and present for it.  Sometimes I have to pinch myself to confirm that, ‘Yes, I’m really here’.  I was really there dancing with family and friends, chowing down on catered barbecue under white tents on Rachel’s parents beautiful Westbrook property, playing corn hole against my sister and her boyfriend, clanking wine glasses in the newlywed’s honor, recounting the night over breakfast with the new extended family.

The day was real and beautiful, authentic and comfortable – the perfect reflection of my brother and his new wife.

Siblings.

My groom and me.

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. 

I've seen this poster at every cancer center I've been to -
a good example of cancer clinic
motivational paraphernalia.  

It’s no longer just the looming after-effects that get me down, but rather the idea of being back in the cancer center surrounded by everything that screams cancer: the bald-headed patients, their heartbreaking expressions, their unbreaking optimism, the smell of alcohol swabs and latex, the familiar framed posters on the walls about how “cancer can’t take away your spirit …” or “ways to love yourself” (take a hot bath, light a candle, hug a cat, sniff a tulip, or some bullshit). I don’t want to be any part of it: been there, done it all.  

I was back where I started at Hartford Hospital’s Helen & Harry Gray Cancer Center in Hartford for my sixth infusion of my drug du jour. Now that SGN-35 (brand name Adcetris) is FDA approved, Hartford Hospital has started administering it there, though I’m one of very few receiving it ­– the first one my nurse had given it to. I think that made her a little nervous, especially when I told her that at times I’ve gone into bronchial spasm. She told me that she brought home the teaching sheets and read up on the drug’s effects the night before – very reassuring. I kept it cool though and didn’t cause any fires. Smooth treatment except for a little port wrestling until it ultimately gave a good blood return.

It’s both comforting and unnerving seeing the nurses that I’ve been seeing for three and a half years as it brings up so many repressed feelings and memories. My mom was with me at yesterday’s treatment and we both felt a little uneasy and uncomfortable remembering all the times we sat in those cramped little rooms and took in difficult news about diagnosis, relapses or the need for heavier treatment. I sat in the exam room where I once had a bone marrow biopsy right on the exam table – no anesthesia.

Everything changes, but nothing changes. The walls still had framed pictures of the doctors’ and nurses’ kids, pictures of the 1999 UConn women’s basketball team, Red Sox and Yankees paraphernalia, dusty plastic plants, a framed poster of the Brooklyn Bridge and a desk lamp with fringe. Odd décor choices, but to me it’s kind of home, though the perspective through which I see that home has certainly changed over the years.

Dr. Dailey’s secretary ran out into the waiting room to give me a big hug and many of the lab techs and nurses swung into my room while I was receiving treatment to say hi and tell me that they think of me. This does mean a lot. My chemo nurse snagged a private room for me as soon as my bloodwork was done and we squatted there with Dr. Dailey so I could receive treatment in privacy. I do get a little preferential treatment being such a longstanding customer and all.

Seeing Dr. Dailey is always very assuring as he is incredibly thoughtful and thorough and has watched my case from the very beginning. I’m always impressed with how up to speed he is on me even when I haven’t visited in a while. Just being in his presence puts me at ease as he has a very soft spoken and positive delivery. I like how he thinks about my case. We talked about some future options and about some new drugs that he’s heard about and thoughts to bring up with my Sloan team.  

My mom escorted my drunken Benadryled self home, fed me lunch and cleaned our dishes for us until I passed out on the couch and she snuck out. The best part about chemo days is that my mom usually cleans our kitchen.

I felt awful all evening and did nothing more than sleep and watch TV on the couch. Then slept and watched TV from our bed. Craig cooked me dinner and heated up my heating pad to spread across my achy hips. I’m still very tired and achy and think I may be coming down with a cold or those pesky seasonal allergies as I woke up today with a scratchy sore throat and a bit of a cough. This is unacceptable as my brother is getting married this weekend and I want to be in top shape. That means as much rest as I can fit into this busy week and as much tea and lemon water I can drown myself in until the big day Saturday! 

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.



As may be obvious from how often I post song lyrics and videos, music is a big love of mine and Dave Matthews Band is a longtime favorite that always finds a way to provide a soundtrack to my life.

Recently they released the first single, "Mercy,"off their soon-to-be-released album. I love everything about it and everything that the lyrics convey. What I love most is the music video they created through a call to their fans for video clip participation. An incredible 14,334 people contributed from all over the world to create this video, making a big statement for the power of coming together to accomplish something of beauty.

Dave said in an interview with Billboard Magazine that he hopes the release of this song "inspires people to find the things that they love, inspires them to feel good, to feel love, or ambition, or feel powerful. Whatever they need."

I love that. Go find what you love. It'll bring you what you need.

Mercy
Don't give up

I know you can see

All the world and the mess that were making

Can't give up

And hope God will intercede

Come on back

Imagine that we could get it together

Stand up for what we need to be

Cause crime won't save our feet or hungry child

Can't lay down and hope no miracles change things

So lift up your eyes

Lift up your heart

Singing mercy will we overcome this

Oh one by one could we turn it around

Maybe carry on just a little bit longer

And I try to give you what you need

Me and you and you and you

Just want to be free yeah

But you see all the world is just as we've made it

And until we got a new world

Got to say that love is not a whisper or a weakness

No love is strong

So we got to get together yeah

Gotta get gotta get gotta get

Til there is no reason

To fight

Mercy will we overcome this

Oh one by one could we turn it around

Maybe carry on just a little bit longer

And I try to give you what you need

Yeah...

Ah...

Oh...

Yeah...

Mercy will we overcome this

Oh we come to far to turn it around

Oh and asked too much to be a little bit stronger

But I want to give you what you need

Mercy what will become of us

Oh one by one could we turn it around

Maybe carry on just a little bit longer

And I try to give you what you need

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. 

Truckin got my chips cashed in. Keep truckin, like the do-dah man
Together, more or less in line, just keep truckin on.

Arrows of neon and flashing marquees out on Main Street.
Chicago, New York, Detroit and it's all on the same street.
Your typical city involved in a typical daydream
Hang it up and see what tomorrow brings.

Dallas, got a soft machine; Houston, too close to New Orleans;
New York's got the ways and means; but just wont let you be, oh no.

Most of the cast that you meet on the streets speak of true love,
Most of the time they're sittin and cryin' at home.
One of these days they know they better get goin'
Out of the door and down on the streets all alone.

Truckin', like the do-dah man. Once told me you've got to play your hand
Sometimes your cards a'int worth a dime, if you dont lay 'em down,

Sometimes the lights all shinin' on me;
Other times I can barely see.
Lately it occurs to me what a long, strange trip it's been.

What in the world ever became of sweet jane? 
She lost her sparkle, you know she isn't the same
Livin' on reds, vitamin c, and cocaine,
All a friend can say is ain't it a shame? 

Truckin, up to Buffalo. Been thinkin, you got to mellow slow
Takes time, you pick a place to go, and just keep truckin' on.

Sittin' and starin' out of the hotel window.
Got a tip they're gonna kick the door in again
I'd like to get some sleep before I travel,
But if you got a warrant, I guess you're gonna come in.

Busted, down on Bourbon street, set up, like a bowlin' pin.
Knocked down, it gets to wearin' thin. They just wont let you be, oh no.

You're sick of hangin' around and you'd like to travel;
Get tired of travelin' and you want to settle down.
I guess they can't revoke your soul for tryin',
Get out of the door and light out and look all around.

Sometimes the lights all shinin' on me;
Other times I can barely see.
Lately it occurs to me what a long, strange trip it's been.

Truckin', I'm a goin home. Whoa whoa baby, back where I belong,
Back home, sit down and patch my bones, and get back truckin on.
Hey now get back truckin home.

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