Holiday Wrap-Up 2012

By the light of the tree

Ah, Christmas. It was a beautiful whirlwind of food, loud family gatherings, quiet moments lit only by the tiny white lights of our tree, giving, receiving and downtime. The time span is the same each year, but I can never believe how fast the season goes by. The parties will spill into January with New Year’s Eve celebrations and post-holiday gatherings, but all the hype and sparkles of the season have begun to fade.

We did get a white Christmas here in Connecticut and the snow has continued. Today the sun is shining on a beautiful blanket of white, so it finally feels like legitimate wintertime. Sammy Dog has already managed to slice her foot open on some ice – an annual sacrifice to the season’s new terrain.

This year felt somewhat surreal to me – just a little off. Maybe it was the milder than usual weather leading up to Christmas. Maybe it was the tragedies of the Newtown Elementary School shootings and the tangible sadness felt for those beautiful families. Maybe it was because we rekindled some old traditions and tried to start some new ones, which can bring on a slew of emotions. Maybe it was because I was suffering painful and nauseating constipation from my treatment or that my back and hip pain is again severe. Maybe it was because I continually find myself dumbfounded to have been here for it: my fourth Christmas with cancer. Not sure what that means. I took it all in in a very quiet way, sitting back and observing and appreciating.

Holiday Wishes

Sending you all warm wishes of love, peace and laughs this holiday season. I hope that your days have been filled with family, friends, cookies and naps. That's what's been keeping me busy lately. I'll be back to a regular blogging schedule starting Friday.

Have a very Merry Christmas! Or, if it's another holiday you celebrate, I hope it's fantastically joyous as well.

Lots of love.

Reflections on Tragedy

Photo credit: newsnet5.com

Every parent and every educator, everyone who works with children in any capacity, is no doubt projecting the unfathomable tragedy of Newtown’s Sandy Hook Elementary School shootings into their own lives, deeply aching for those reeling from their losses or the devastation they witnessed.

But the reverberation of sympathy doesn’t stop there. There are also those – like me – who are not yet a parent or don’t work with kids on a daily basis, but are still marred by this tragedy, our hearts saddened for the suffering of others. Though we don’t share the same circumstance, we are all still human. We can relate and feel each other’s pain. It is a natural reaction to want to dissipate it, to spread the hurt among us hoping that maybe it’ll make it just a little easier for those central to this horror.

Connecticut is my state. My husband is a teacher. Many of our friends are teachers, one a second grade teacher at Sandy Hook Elementary who survived the shootings and is suffering the loss of her colleagues and so many students. My sister-in-law was good friends with the heroic Vicki Soto who died protecting her students. Another friend studied with and was very close with the special education teacher who was killed. There are many connections to this tragedy that hits very close to home.

Desperately Seeking Relevance: A Story

A story to share that has nothing at all to do with me or the c-word. It's a piece I wrote for a writing class I am taking that asked us to observe a stranger and surmise about their life. Hope you enjoy:

(c) colourbox

His air of importance contrasts sharply with his obvious lack of clout. This man’s influence departed some years ago. It shows in his hair, snow-white and styled in a forgotten fashion that can only be accomplished with that old-man staple: the miniature plastic comb. The unruly strands that spike at his scalp prove the comb was dunked in water, not hair gel. Product is for girly men.

The thread of his heather grey pants that once held a perfect cuff has surrendered over time, leaving his pant bottoms hanging with the weight of the years.

His morning scent of Listerine and Barbasol is a stark contrast to the spicy, sexy fragrances from the young men surrounding us, fingers scrolling down their iPad screens or flurrying across their Blackberry keyboards. Their slim-cut pea coats make his boxy trench look that much more dated.

Balanced on one knee is his first generation laptop. From my vantage point across the train aisle, I can see that his smudged screen holds a game of solitaire, in which he was struggling to find the Aces.

Generation WHY

For all young adult cancer survivors out there – and those that love us. 

The Huffington Post has put together a HuffPost Healthy Living series called "Generation WHY." It is putting the spotlight on young adult cancer patients and survivors between the ages of 15 and 39. 

There are tips, resources, patient stories and perspectives gathered in one place to help bring the young adult cancer movement to a mainstream audience. 

Check it out here: http://www.huffingtonpost.com/news/generation-why/

Pain, Puppy, and Phlegmy Tissues

Annual Christmas tree hunt on the farm. 

The pain got to be very severe, setting in seethingly Thanksgiving Day night and increasing through that weekend. I talked with my Columbia team, and it was decided to put me on a little pop dose of 50mg Prednisone for a couple of days. If the pain responded to the steroid, it was safe to assume that it was being caused by a tumor flare (a good sign). If the pain did not respond to the increased steroid, it may be lymphoma growth (a bad sign).

With one dose, the seething pain in my back and left side completely dissipated. I’ve  been off the 50mg for a week now and the pain has remained gone. It was likely my body once again getting used to the Revlimid ramping things up after being off of it for a week while my rash cleared.

The perfect tree.

I am pain-free and nearly ache-free as well. However, I have the glassy-eyed, manly voice, and piles of full tissues that are tell-tale signs of a full-blown winter cold. I blame my husband who was sick the week prior for passing it along to me – we share everything, cute, huh? It started with a raging sore throat Sunday morning, moved to head fullness and pressure to crazy sneeze attacks and constant nasal dripping and nose blowing. This morning a rumbly chest cough has joined the scene. ‘Tis the season.

Between a Food Processor and a Popover Pan

Thursday marked one year since Craig’s mom, Linda’s, passing. On that day, the sky literally opened up. I was in New York City by myself – without an umbrella – when an unexpected rainstorm started pouring sheets. Nothing I was wearing was waterproof.

By the time I walked the blocks to my emergency MRI, the rain had soaked through my clothes to my skin, leaving me pruned and chilled. That’s when I got the call from Craig that his mom had passed, that he and his brother were with her when it happened. The skies were crying their own goodbyes.

This year, on that same day, the sky was a vivid, crystal blue and the sun was shining strongly, matching up to the strength of the winter-cold air. Everything smelt fresh, anew, a tangible sense of healing.

We spent many days clearing out Craig’s childhood home and setting it up for sale. On one of many trips between Harwinton and our home, we filled the car with items to keep. This time, we had both his parents in the back seat: his father in the mantle clock he had rested in for the past seven years, his mother packed within a thin cardboard box, nestled inside a nondescript gray paper-handled bag.

Together they rested, wedged between a steel popover pan and a food processor, its bag of attachments spilling onto the seat when we hit the first bump. Watching them teetering at each turn, supported by such mundane objects, I wondered, how can life be so wildly complicated and so achingly simple all at once?

Trapping Fears

Home Alone booby trap success.

(c) forallthosesleeping.buzznet.com

When I was a junior at the University of New Hampshire, there was a campus creepster on the loose. Not only did he peep like a Tom, he sought out girls leaving parties, followed them home then once they went to bed, broke into their apartments, scissors in hand.

His signature move was snipping the straps of women’s tops or cutting their clothes off altogether so that they’d awaken naked, confused and terrified of what happened to them in the night. The media quickly dubbed him “Jack the Snipper” grabbing headlines in the sleepy New Hampshire town with this juicy story – something destined for Dateline. Meanwhile, the more his name popped up, the more it terrified us.

In the span of a month, seven women reported having their downtown Durham apartments broken into. Some recalled waking up to a strange man standing over them, others reported waking up surrounded by their own tattered clothes. The 27-year-old non-student was spotted staring into windows and lurking in shadows.

T Cells On the Offense

Among the many things I am grateful for this Thanksgiving weekend is something I no longer have: my rash. I was able to enjoy the three Thanksgiving celebrations with three familial sets and cheer on Craig in a turkey day road race sans the itchy red spots that had been haunting me.

As of Wednesday, the red brail faded into a vague purpleness, no longer raised and angry. With this good report, I got the go-ahead to start back on the Revlimid treatment pills back at the original 10mg. This is half the dosage I was on when the rash set in.

I was eager to get back on the treatment, worried that I would lose any momentum I had gained against the disease. However, getting back on hasn’t been easy. It seems my body easily forgot the semblance of balance it had found once it got used to the drug. It’s again been a shock to the system.

Tumor flare seems to be again well, flaring. Ouch. My mid-back hurts tremendously. It hurts for a couple of days before I went back on the treatment pill and now that I’m taking it again, the pain has increased. I take the medication before bed so I don’t have to deal with its ramifications during the day. For these first few days back on the Revlimid wagon, this has meant waking up throughout the night with pretty tremendous pain in my hips and back, the areas where lymphoma lies/laid.

I’m not surprised, and I guess this is good. Pain means that the Revlimid is jacking up my immune system and flooding those diseased areas with natural killer cells. The process causes a lot of internal inflammation in my bones where there’s not a lot of room for extra cells. It feels at times as if my hipbones will just give out. I’ll check in with my Columbia team on Monday, but I’m pretty confident that they’ll say: yup, this is likely tumor flare; it’s the drug doing its job.

I ride it out with Aleve, breathing, microwaveable heating pad and stretching. The nighttime pain keeps sleep elusive and the first hours of the morning extra creaky. It’s manageable most of the time through the day, though I’m certainly hoping things calm down a little. In this case, pain is proof positive. With that in mind, I can endure it.

Getting to play with my niece and nephew and now frolicking in full-swing Christmas season and everything that brings is a beautiful distraction. Best painkillers out there. 

This is an incredible microscopic look at what we hope is happening in my body. The Revlimid is working to ramp up those receptors on the natural killer cells (the red dots) so that they will latch onto the cancer cells and eat them for dinner just like this video demonstrates: 

Words Frozen in Time

At the beginning. I love you and am proud of you, sweet girl. 

I’ve actually been taking tangible steps toward recreating this blog into a book for a wider audience.  A huge part of getting a manuscript and proposal ready to pitch to literary agents and publishers has been going back through it all, rereading, editing, organizing, trimming. That’s been a journey in and of itself and I realize why it’s taken me so long to find the strength to be able to do it. It’s eerie and it's tough to relive it all and to hear my own voice and perspective change as I read about everything I’ve been through. 

However, I’m confident that I’m finally in a place where I can handle it and see past my own insecurities to the greater good that sharing this story can bring. Someone told me in the very beginning that I should write a book but I thought that my cancer story wasn't unique enough; I had an "easy" cancer that'd be cured with simple therapy. Well, now I've certainly got a lot more fodder to work with. My story most definitely isn't mainstream.

It’s strange because I read it and just feel awful for this young woman. I know what’s going to happen, obviously, but even so am disappointed with every relapse and devastated at the side effects and choices that had to be made. I read it as if it’s not me, but someone else, a coping mechanism I’m familiar with relying on. The blog has helped me to remove myself from this whole situation and now creating it in another medium is like setting another layer of padding. I truly don’t recognize myself in some entries. In others, I remember myself in those moments far too intimately and it can be very painful to relive. It’s been a taxing and revealing creative process so far.

Revlimid Rash Out

Baldwin Hills Scenic Overlook, Culver City

This week will be a one-blog-entry week due to a variety of reasons, not the least of which are jet lag and a raging red rash.

Steve’s memorial was beautiful, respectful, and inspiring. The positive, loving energy among the nearly 300 people that filled the LA studio where it took place was palpable. So many good people that he had attracted in his life and it’s no surprise that they were all there to pay tribute to such an incredible person that had impacted their lives as he has mine. The day was full of laughter, shared stories, touching moments and positivity among Steve’s favorite breakfast foods and drinks.

It was an honor to get to meet his family and to be able to tell them how much their son meant to me. In and of itself, it was worth the cross-country flight to be able to hug his wife, Jen, in person and to hear her speak so eloquently about the loss of her soul mate.

Sunset in Santa Monica

Though I wish he was still here, I left having learned more about his life and the way that he lived it giving me such a dose of positive inspiration and an acceptance of the natural rhythms of life and death that I needed at this time. The lessons that he taught through his witty and thoughtful ways did not die with him; they will always live on inside all of us who were fortunate enough to have had him in our lives.

Saying Goodbye

Tomorrow we fly to Los Angeles, California, to say goodbye to my friend, Steve. Comprehending and accepting his death has been extremely difficult for me. I feel that being there with others who loved him celebrating his life will be the best way to find some peace and allow myself to better let go of the anger and the pain knowing that I was able to honor him and thank him for the friendship he gave me.

Craig is coming with me in strong support, and we both want to be there for Steve’s wife, Jen, who has always been there for us from across the miles in the most difficult of times. This time is undoubtedly beyond painful for her. I am eager to learn more about Steve’s life pre-cancer and to meet the friends and family that also loved him.

Part of his day of honor will include his favorite drinks and watching the Eagle’s football game, so I'm expecting laughs and good memories amid the sad parts. They’re calling it a celebration of his life; I look forward to being able to do just that. My life was changed for the better because of him, and I want to honor his life and the path we walked together living with this disease.

I know it will be hard; I can’t help but project my own fate, but I know that it will also be cleansing and inspiring. I just have to be there. I am following my heart on this one. 

Hope Endures

image copyright washingtonpost.com

"I have always believed that hope is that stubborn thing inside us that insists, despite all the evidence to the contrary, that something better awaits us so long as we have the courage to keep reaching, to keep working, to keep fighting." - Barack Obama 

I was thrilled to tears to wake up in the early hours of the morning to hear that President Barack Obama had earned another term in office. I look forward to four more years under his steadfast leadership. His intelligence, diplomacy, compassion, and determination are inspiring to me. I love listening to him speak. I love his respect for the diversity of our country's people and our varied needs. I love that he looks at the big picture – to our nation's future – and pragmatically makes decisions that support and encourage success for everyone, building an environment that cultivates the understanding that we're all in this together. 

I am honored to have taken part in this historic election and to have been able to witness footage of the droves of others casting their votes as well, despite long lines, power outages, home destruction and makeshift poling places. It makes me proud to count myself among so many Americans passionate about our country and the issues that build its culture and its place in the world. 

I have hopes for continued forward momentum and now after a grueling election season, a government that is less partisan and divisive and rather one that can find common ground on the issues that the American people have spoken so clearly and passionately about during this election year. 

Visible Ink 2012 Staged Reading Video

After several months of editing, the 2012 Visible Ink Staged Reading was posted to Sloan-Kettering's website. Below is the performance of my piece, "Kitchen Charades." Please visit the program's website and check out the other fantastic pieces of writing staged that April evening – one of the most humbling of my life.  

Visible Ink is a one-on-one writing program for patients at Memorial Sloan-Kettering Cancer Center that offers opportunities for self-expression, stress reduction, personal growth, and individual success at a time when many participants face the considerable challenge of a serious illness.

I am forever grateful to the program's founder and my mentor, author Judith Kelman, and the opportunities for creative outlet and confidence building that this program has brought me. I was so honored and in awe to hear my words being performed by Broadway actors that night. Even watching the video and hearing the audience's reaction is still surreal to me. 

Judith and I continue to work together on my writing. I send her monthly stories that we hone and polish together. I'm wrapping up two pieces to submit for publishing and staging consideration for the 2013 anthology and performance. The program gives me focus, purpose and a place of inspiration and comfort. 

My piece ends at 4:30. As it was the last piece to be performed, the closing song is wrapped into my segment as well (also worth a listen).

 

Revlimid 3-Week Update

I have been taking the Revlimid immunotherapy treatment pills for just about three weeks. I think it’s safe to say that overall I have been feeling well and that the side effects are not much at all. The initial few days on the medication were tough, but that is always the case when shocking my body with a new set of chemicals. Everything seems to have synced up nicely. I no longer have the pain I was having in my bones when I first started (remember, this was a good thing indicating that my natural killer cells were zeroing in on the cancer cells and causing a flare, we hope). The fatigue is still pretty intense, but my head is clear and I’m able to live like a non-cancer patient, so for that I am grateful.

However, I can’t say that things have gone so smoothly during my continued adventures with Prednisone steroids. As I mentioned in my latest medical blog update, I had tapered down to zero after three months of use and my body went haywire with immense body aches, fatigue and high fevers. The Columbia team put me back on 10mg along with the start of the Revlimid 10mg to get things stabilized again.

After a week, I was having muscle vibrations and loss of strength in my quads – a common side effect of prolonged steroid use. To combat this, the team agreed to wean me off again as I was no longer having fevers. I started to taper off of the 10mg by 2.5mg at a time, dropping every five days. Apparently that wasn’t slow enough.

Bogus

This is a piece that I wrote and shared at Syllable: The Reading Series, held monthly in Hartford at La Paloma Sabanera Coffeehouse. This month's theme was "Bogus." Inspired by the masked world that social media can sometimes be, I chose to write a satirical piece on the bogusness that can lurk in Facebook status updates. 

Hopefully it's clear that there's a lot of biting sarcasm in here and that I'm certainly not passing judgement (I am a social media fiend and guilty of many of these scenarios), but instead, making a social observation on the TMI world that we live in. Again, it's satire. 

Hope you enjoy!

Proud Member of the Chevonnetourage

Craig and me with Chevonne putting our paws up before 

her performance at the Lady Gaga concert in Houston.

I get really jacked up when I see someone find their passion, work hard to follow it, and find success. When I know that someone personally I get just that much more excited.

This is the case with Craig's cousin, Chevonne, who I believe I can stake a claim to as my cousin also, since I'm married in, and because I have only one recently acquired (finally!) cousin of my own. As Craig and I have been together for 12 years, I've gotten to watch her grow up, was there celebrating Bat Mitzvahs and at her family's home for many a Chanukah gathering.

She has a ridiculously incredible voice and has been honing her talent for years, studying music in college and coming out of school with a bang. I remember Craig and I going to see her play at a dive bar in Danbury, Conn. years ago. She told us how she had to drive all over the boroughs of New York City to pick up the members of her band and get them together for the gig. Band members were pulling out on her all the time and she was constantly having to adapt and regroup. She was lugging all of her own equipment, making her own staple fashions to wear, but all the while lighting up the stage like she owned it – because she did. She belted out her original songs and accompanied herself on her keyboard. I was so impressed then, leaning on a bar stool watching her performance beside her parents and Craig.

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

The Buts

I want to sleep in late, but Sammy dog has to go out and get fed and so do I, so I get up.

I want to be productive and wildly incredible every single day, but then I get tired and those plans unravel quickly.

I want to roll back over under the covers, but the morning sun shines brightly in my window coaxing me awake, and I can’t deny that.

I want to ignore the dishes and the laundry, but Craig and I have to eat and we have to wear clothes, so eventually I stop ignoring them, and I wash them.

I want to wallow in my pain, but then I remember that everything is still in tact – I have 10 fingers and 10 toes, I can walk, I can talk, and I’m still breathing, so I get up and utilize them.

I want to hop a flight to Paris – or maybe Fiji – and never look back, but I stay because I have a husband and a dog and a home that I love more than anything.

I get angry, but then I smell the crunched-leaf scent of fall, see the tree colors getting impossibly more vibrant, have a calming visit with a friend, hit my stride on a writing project, or see a video of my nephew singing in his underwear, and I can't be angry anymore. 

I want to pretend the toppling stack of medical and household bills isn’t there and just count it as part of our kitchen décor, but I stop pretending, and I go through them because homelessness and collection agencies don’t sound like any fun.

I sometimes complain that I got dealt a bad deck, but then I realize how damn good I’ve got it.

I’m unsure of my body’s capabilities, but then I test them and I’m always surprised that it can still take me where I want to go.

Sammy at our look-out spot above the valley.

I want to cry when I see a pregnant woman and know that’ll never be me, but usually I can hold my composure, at least until I get back in my car.

I get frustrated that I’m exhausted all the time again, but then I think of the alternative and frustration turns to gratitude.

I want to punch people in the face when I see a cigarette in their mouth, but I don’t because I have some sense of self-control still (though I’m not making any guarantees on that one).

I want it all to stop: the decisions, the confusion, the side effects, the questioning, the fear, but then I don’t want it to, because that would mean it’s over, and I don’t want it to be over.

I want to give up sometimes, but I love life too much, so I don’t. 

Back on the Revlimid Saddle

A visit to Dr. O’Connor with Columbia/NewYork-Presbyterian in NYC confirmed my gut instinct that giving the immunomodulating drug, Revlimid (lenalidomide), another go is my best move at this time.

Revlimid is not a new drug to the market, but the concept of using it for refractory Hodgkin Lymphoma is. It has proven to work well against Multiple Myeloma and in recent years proven promising for those of us who have relapsed after an allogeneic stem cell transplant as a way to ramp up our new immune systems to better attack the cancer cells.

It is an oral drug that I take once per day. I’m starting off at 10mg to see what my body can take, with the plan to increase to 20mg daily. The drug works to wake up receptors in my body’s Natural Killer Cells (a type of white blood cell) to recognize receptors in the cancer cells, bond to them and then disintegrate those foreign Hodgkin cells. This is different than traditional chemotherapies in which it’s the drug itself that is doing the cancer killing. This type of therapy is focused on getting my own immune system to work against it.

Everything Changes, Nothing Is Lost

A little piece of my heart left me on Sunday. My incredible friend, my inspiration (he’d hate me calling him that, but it’s true), my cancer counterpart, Steve Dickter, passed away on Sunday, enduring complications from his donor stem cell transplant.

Jen, Steve and me at our first in-person encounter. 

I’ve never had such a physical reaction to news. I saw the simple two-sentence e-mail from his wife, Jen, with the subject line “sad news” and I burst into violent, choking heaves of crying. I got so hot and kept pulling off layers – unzipping my jacket, clumsily unraveling my scarf that suddenly began to strangle me.

Craig pulled over the car not having any idea what I was reacting to until I threw the phone at him, he read the message, put his hand on my leg and let me sob it out. He was visibly reeling as well. When I could finally speak, all I could say was that I felt like my heart had broken. My chest was in knots that have yet to untangle.

Steve and I were partners in this cancer journey. We were the ones that were going to make it far past this. He was my constant sounding board, advocate, interpreter, and reality check.

In the crazy, uncomfortable world of cancer treatment where no one knows what to say, he always had the right words. He was very real and honest, witty and ballsy. So smart and so modest. Steve was as authentic as it gets. He was kind, loyal, compassionate, thoughtful and genuine.

He was just a few years older than me. We had the same disease. We had the same attitude toward it: action, defiance, education, at times, acceptance and frustration. We endured all the same drugs. He also had a spouse that loves him tremendously and he the same – a beautiful relationship. We both were in the communications field. We both got riled up about current events. He wrote a fantastic blog full of clear, funny, sarcastic, insightful and informative writing. We both loved music and lyrics and quotes. Eddie Vedder’s “Rise” was one of our shared motivation songs and he introduced me to Colin Hay. The only thing that separated us was the whole of the United States – he stumbling through this on West Coast time, me on East.

His blog was the first that I found of someone just like me; he seemed like a very cool person that I’d want to be friends with and we just happened to have the same disease. I reached out and he e-mailed right back saying, “Woah, where have you been?” returning the blog compliments I had given him after he read through my posts. I found him in the very beginning, just six months into my treatment. He was ahead of me, so I was able to learn from and follow his lead, his tips on side effects and coping mechanisms, his ups and downs. Then I relapsed first, then he relapsed and followed me, then I, then he. Our paths have been so, so similar.

Our relationship grew and evolved together as we got deeper and deeper into this journey. We rejoiced in each other’s positive news and were defeated when we heard of relapses or infections, always there for each other to lean on. The messages from him and his wife resonated on a different level.

After e-mailing for a couple of years, we met for the first time in person in New York City, and I hung out and talked with him in his friend’s apartment like we’d been best buds since the elementary school playground. When we parted ways after grabbing a bite with Jen, he gave me a huge hug on a city curb and said: “I love you, Karin Diamond.” And I said, “I love you, Steve Dickter” back. It was one of the most real exchanges I have ever had in my life.

We stayed with Steve and Jen in LA the following year and felt as if we’d been in their apartment many times before. Steve and I napped in between the day and evening events, while Jen and Craig sat in the living room and talked caregiver and life talk while we patients rejuvenated.

We went out to dinner where we shared so many laughs – especially about the odd rotating white board listing that evening’s offerings, which would be crossed out by the minute as they were ordered by others – decisions had to be made quick. We laughed a lot about this.

When things got hard, he would tell me that it wasn’t me, that it was the drugs, not us, making us walk around like zombies until our spouses came home to infuse some life into us. He helped me to know not to blame myself and helped to teach me that we can’t let this disease limit us: he was teaching college courses during treatment and pursuing his Master’s degree in communication – writing his thesis while an inpatient in transplant recovery, while also managing several fantasy football leagues, and somehow remembering to check in with me.  

Steve attached this word art to the last e-mail he sent me.

We talked about how our ovaries hurt when we see cute babies, how we hate that we can’t always be there in the way we want to for our spouses, about our futures and all of the beautiful things they held. We would joke about how life doesn’t give a shit that you’re in cancer treatment and it still brings the normal drama of everyday life to manage: flooding basements, unplanned townhouse repairs.  

We talked about how people would tell us we’re inspirations or heroes and how that’s so hard to accept as all we’re doing is what needs to be done. But then, we’d each find ourselves calling each other that. He told me I had Moxie. We said that we were each other’s lights in the tunnel. 

We had a sadistic humor that we could be comfortable and open with, making each other laugh in really horrible situations.

He helped me see straight, he helped me find treatment drugs, he helped me clean up my treatment timeline document so that I could find the doctors I needed. We sure didn’t want this situation, but we both did our fucking best with it, managing our lives with clear focus and determination, but keeping the fun factor alive.  

He always told me that: “This too shall pass.” I suppose it’s a reminder that everything is transient, including the lives of those we hold the most dear. He has passed, but I am forever grateful that he passed through my life. He was one of my greatest gifts.

I am deeply saddened and hurt so badly for his wife Jen, the most devoted wife, friend, caregiver, and cancer researcher I’ve ever come across. She is a beautiful person, and I wish that she didn’t have to deal with this heartache.

It’s going to be very hard to move on in this without him. I have a huge hole in me. I can’t stop reading the posts on his Facebook page and looking at the pictures friends are posting of him from a life before I knew him. All I can do is carry his spirit in my heart and let it guide me through this and defeat this disease for the both of us.

His birthday is my donor stem cell transplant re-birthday, and I’ll forever dedicate June 16 to him. Right now, I’m just in total disbelief and it hurts very badly; I’m grieving very deeply. It’s not supposed to be this way. I miss him and my heart hurts for beautiful Jen.  

He told me that this was one of his favorite mantras: "Omnia mutantur, nihil interit" (Everything changes, nothing is lost.). This change is a tough one for me to swallow, but I know he is not lost because his light will carry on in the love and the lessons he left the countless people whose lives he touched while here with us.

Coping Mechanisms

Breaking Bad as therapy?

I’m sure everyone lives their days following receiving traumatic news a little differently than their ordinary days. For me it’s been a combination of research, crying, e-mailing, sleeping, reading scientific studies, reading gothic novels, watching violent TV shows, more crying, more reading, more corresponding, more research, and perfecting my drug dealer voice: “Slinging ICE on the streets, yo!”

What does this all mean? It’s been my survival pattern as I’ve eased down from the initial shock of my surprising scan results and moved from “What the F?” to “Holy F’in S” to “S just got real and I’ve got to get it together.”

No, I’m not slinging ICE nor cooking glass, but oddly as it sounds Craig and I have gotten totally swallowed up by the AMC show Breaking Bad. We started with Season I on Netflix and the drama of watching a high school chemistry teacher get wrapped up in cooking and selling Crystal Meth to pay his medical bills and provide for his family, while dealing with inoperable lung cancer has been the perfect distraction. It’s an incredibly written show.

At least I don’t have to dissolve dead bodies or walk around a grocery store naked to get myself hospitalized so my wife won’t wonder where I was (which was dodging bullets from a drug lord in the desert). This is what I mean when I say I’ve been practicing my punk dealer voice. It makes Craig and me laugh when we pretend to be badasses and the show totally engrosses us. Way better than thinking about our own crap.

It was raining for three days straight. The weather shared in my misery. The dreary darkness certainly didn’t do anything for my spirits. It’s been difficult motivating myself to get out of bed each morning and for a few days there was difficult to even speak without my lips quivering and the tears starting to fall.

I’m suddenly very achy and very tired. My mid-back and lower back are sore and angry and the muscles in my neck and shoulders are in knots. I’m pretty sure that it’s more stress related than cancer related – the fatigue especially. Taking this all in is just exhausting.

I did get myself out of the house to the town library where I brought a totally transporting book we’re reading for book club and a pumpkin spice latté (soy, no whip). I cuddled into a comfy chair and ottoman by the window and watched the rain tousle around the dried, colored leaves and just read – for several hours – until I finished. It was glorious.

After putting some feelers out to the medical world I’m exhausted further, but I’ve got some good leads for possible treatment options to explore. Things are cooking:

• I landed an appointment on Monday with the famed “Dr. O” (Owen O’Connor at Columbia in NYC) and am eager to hear what he thinks may be an optimal treatment plan. He is always buzzed about in the Hodgkin world for his expertise in novel treatments for refractory patients. I saw him last spring and am eager to reconnect.

• I also have connected with some doctors at the National Cancer Institute in Maryland through a friend, and they are exploring my eligibility for a possible clinical trial there that involves radiation and a DLI which I’m very interested in.

• Dr. Moskowitz talked to Dr. Anas Younes at MD Anderson for me (another big wig in the Hodgkin world) and he has a trial in Texas for me but also agreed with trying the Phase I trial of PU-H171 at Sloan-Kettering, which I’m slated for initial consult on in three weeks.

• A research doctor at Seattle Genetics (the makers of SGN-35) – whom I connected with a couple months back through the help of my buddy Ethan Zohn to talk about my lung issues as an SGN-35 complication – is now looking at my current status with his team to see if they can come up with anything.

• I’ve received lots of e-mails with offers for referrals, advice on treatments, and links to clinical trials. For that I am so grateful and am still working on weeding through it all. 

More importantly than all the medical leads was the outpouring of e-mails, blog comments, and Facebook messages I’ve received since Monday that filled the hole in my soul. I am so grateful for the kindness of my friends – close and distant – and from the perfect strangers who took the time to tell me how much they’re rooting for me and how much my story has meant to them. It’s messages like those that keep me moving forward. Sure, many of the heartfelt e-mails I got added to the water works, but they were sentimental tears, not tears of defeat.

Today the sun came out and I finally gave in and let my mom and sister come take me out for lunch and a hike. We took Sam to her favorite place: Nod Brook Wildlife Conservation Area and enjoyed a nice walk in the unseasonably warm weather taking in the foliage of Talcott Mountain in the distance.

The tears are less frequent and I’m starting to smile again. Craig and I laughed a lot last night scaring each other with fake finger guns and making up stories about how the dilapidated blight-of-a-house on the end of our street is most definitely a meth lab.

It’s funny the strange things we (I) do to cope, but it doesn’t really matter what they are does it, as long as they help us out of our funks. I think I’m on my way. I’m still just very, very tired.

Well, Happy October

My opponent: Reed Sternberg cell indicating Hodgkin Lymphoma presence. 

It looks like owl eyes or a pig's nose - or a big asshole, depending on how you
look at it. 

October did not get off to the start that I hoped it would. It’s turning into autumn, the leaves are a golden palate and the air is getting crisper. With that, I knew would come my own change, as always happens at the crossroads a PET Scan provides, but this was not the change that I wanted.

My October started with a figurative punch in the face, and then the gut, and then a few more times in the flank. I didn't even see it coming. I had no time to put up my dukes. 

My mother and I sat in the small, harshly bright exam room awaiting the scan results that Dr. Moskowitz would bring in with her.

“So you’re feeling well?” She asked, having already debriefed with her nurse that I met with previously. “That’s great … .” she trailed off.

“I feel very well except for the anxiety I have over this scan,” I replied.

“Well, the scan doesn’t look great,” she said. I know it was difficult news for her to deliver.

No, it doesn’t look great. There are new lymph nodes lighting up in my chest and abdomen, which likely indicate new disease sites. The bone involvement in my hip, pelvic and sacral areas is much hotter than my last scan indicating increased metabolic uptake. My bone lesions are the worst, as evidenced by the higher SUVs (a measurement of the absorption of the radioactive tracer I was injected with, calling out the highly metabolically active areas). The left iliac wing had an SUV of 2.7 on my July scan and is now up to 15.5. My right sacrum went from 2.3 to 7.5, and my right femur from 7.7 to 10.7 SUV.

I don’t understand. Could it be all that dancing I did at Thea’s wedding Friday? Could that be giving a false read? I asked her how they know that this is more cancer and not just inflammation from my own body fighting the cancer itself in those areas. She said that they don’t know anything for absolute certain, but the fact that there are new areas of internal swollen lymph nodes (with SUVs up to 11.4) makes it much more likely that the disease is again on the rise and has again learned to morph around the treatment that was keeping it stable. It’s a son of a bitch.

We've taken me off the SGN-35. I did not get the treatment I was due yesterday. It is obviously no longer working. There is no plan right now, we’re grasping at straws for what to do next. Part of me just wants to sit on it and see what happens. The fact that I had an allogeneic stem cell transplant excludes me from many clinical trials of new drug agents. We’re looking at MTOR and HDAC inhibitors, though I’ve already tried many of them. We may need to revisit some of the drugs I’ve already been on in those categories, though many haven’t been approved for Hodgkin’s yet, so I’d have to be receiving them off-label and risk my health insurance not covering them. I’m slated to possibly try a very new drug with Sloan-Kettering’s Phase-I trial clinic, though it has never been studied in a Hodgkin’s patient, but does go after a protein expressed in Hodgkin’s cells and therefore has potential.

My head is spinning. I am overwhelmed, sick with worry and shock. Today has been alternating crying with clinical trial research, medical phone calls and e-mails to doctors I’ve worked with in the past and contacts I haven’t yet tapped into. I’m open to traveling anywhere I need to to find the treatment that I’m still seeking to put me in remission. My confidence is waning a bit, but I do believe that the key is still out there.

I am fortunate that I am feeling no pain at this time and that I am otherwise healthy and strong if you took the lymphoma out of the equation. That is a crazy reality to me. There has got to be something that will get this disease in check. I don’t understand why I have to be the one dealt this deck. Why do I have to have the unrelenting syncytial variant type of Hodgkin’s lymphoma? Why do I have the bone lesions, which make this disease nearly impossible to wipe out?

I have my game face on and am delving into the required research, but I’m hurting pretty badly inside. I just truly thought this drug would have given me more time. I had a good run and I wanted more.

No one can ever say that I haven’t tried. I have been treated at four institutions, two of the best cancer centers in the nation, I am seen by a hematology oncologist, a lymphoma specialist, a transplant doctor, a radiation oncologist, a naturopath physician, an oncology psychiatrist. I have shoved all of these treatments into my veins, down my throat or radiated through my body:

Chemotherapies (Nearly 30 drugs in 3.5 years):

• Six cycles of ABVD chemotherapy (Adriamycin, Bleomycin, Vinblastine, and Dacarbazine)
• 3 cycles of ICE chemotherapy (Ifosfamide, Carboplatin, Etoposide) 
• DI-CEP (Dose-Intensive Cyclophosphamide, Etoposide, Cisplatin)
• BEAM (Carmustine, Etoposide, Cytarabine, Melphalan)
• Three cycles of GND chemotherapy (Gemzar, Navelbine, Doxil)
• Two cycles of Bendamustine on clinical trial
• Four cycles of SGN-35 acquired on compassionate use basis 
• Two cycles of Phase I/II Clinical Trial of Panobinostat (LBH589) and Everolimus (RAD001) at MD Anderson Cancer Center in Houston, Texas
• Fludarabine and Melphalan, plus Methotrexate injections
•  Vorinostat (SAHA) 
• Revlimid (lenaldiomide)
•  Five cycles of Vinblastine
• Cyclophosphamide, Etoposide, Procarbazine oral chemotherapies
• Post-transplant retry of SGN-35 aka Adcetris or Brentuximab Vedotin for 7 cycles

Radiation:

• 10 days of highly targeted radiation to T7 and T10 vertebrae and lower sacrum

       Immunotherapy:

•  Mini Autologous Stem Cell Transplant
• Full Autologous Stem Cell Transplant
•  Allogeneic Stem Cell Transplant 

What’s left? Anyone have any educated ideas, please feel free to send them my way. If I sound snarky and angry it’s because I am right now, and I think I deserve to be for a little while here as this new information settles into my understanding.  

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.