Category Archives: In memorium

How many ways can cancer break your heart

Seemingly the possibilities are endless.

Upon first hearing ‘you have cancer’ we were forced to face the specter of mortality; in our face and way too close for comfort.

Next up was the impact our diagnosis had on friends and family and if we were parents, our children–now suddenly faced with challenges that had no rightful place in the happy childhood we’d imagined for them.

Loss was a word that soon figured largely in our everyday existence, with bodies that suddenly looked and felt very different as cancer became part of our identity on both the meta and purely physical level.

Stress and anxiety—our finances, interpersonal relationships, jobs. Everything was suddenly at risk.

However, that didn’t stop each of us from trying to put a brave face on. We sucked it up and made an honest effort to find the silver lining in cancer. Certainly there was opportunity for personal growth, but at a cost oh so dear.

And then we discovered that the one really good thing to come from our disease was each other.

Since my diagnosis, I have had the privilege of knowing, interacting with and often growing quite close to an incredible assortment of extraordinary individuals. Brave, gracious, generous, kind, caring, fun. Lovely, lovely people who have made my life so much richer.

However, there is an obvious downside to falling in love with others who are battling cancer and that is the potential for heartbreak.

Last week the lung cancer community lost someone who had touched the hearts of many. Maybe it was her youth, the fact that she was a young wife and mother, or perhaps it was Elizabeth Dessureault’s radiant smile and outgoing personality that made her so appealing and accessible.

elizabeth-dessureault-and-18-month-old-son-jack-for-story-by

Her passing took us each by surprise and the ripple of grief soon became a big wave. Shock and sadness turned to anger and for some, fear.

The truth is, you can have the best oncologist in the world (Elizabeth, like me, saw Dr. Shaw) and although your odds may be improved, the course of this disease remains ridiculously unpredictable.

It is all so very disheartening.

And yet. There is only one way to go and that is forward. You and me. Live and love some more. Because every moment is precious and no one is assured a tomorrow.

Goodbye to a beautiful friend

Anja Stegen

Anja Stegen

When my son August and I travelled to Sweden in 2010, we visited with my pal Anja, also a lung cancer patient, and her husband Ingo and son Otto. Prior to that visit I had only known Anja online, but the two of us clicked like old friends. In the years since we have been in touch with our last communication on February 1. She told me she would be having surgery for a brain met. Two weeks later Ingo sent an email post surgery which I read as upbeat. The past few days Anja has been much on my mind and it has been my intention to contact Ingo to see how she was but today I received an email that she had passed away.

I am shocked and sad and sorry that I was not more attentive–somehow I thought we had more time; lots of time. By now I should understand how quickly things can change with this disease.

My heart breaks for Ingo and Otto, who have lost a loving wife and mom. Rest in peace sweet Anja. We will miss your good, strong hugs.

 

Losing our first love

Two of my favorite photos of Evalynn

Two of my favorite photos of Evalynn

Early Monday morning—early enough that it couldn’t be good news, I received a phone call from our stepfather Jim. My mother Evalynn had passed away unexpectedly.

Mom had been in poor health for a long, long time. Two cancers, chronic back  pain, and advanced macular degeneration that left her almost blind. She’d gained a lot of weight, had limited mobility, and was in the early stages of dementia. Jim, who is eighty one but has the mental faculties and constitution of one years younger, provided all of her care.

Given her poor health, we all knew Mom’s time was limited and yet I often joked that she would outlive me. Truth is, I thought she might.

Mom was tougher than nails, one of her pet expressions. Meaner than spit sometimes too, if you didn’t see things her way. I was her first born; she liked to say I was the one she made all her mistakes on. John and Bink might argue that she saved a few for them.

However, there was no mistaking the fact that she loved us all dearly. Our conversations usually ended with “Do you know how much I love you?” or “Do you know how proud I am of you?” And we did—those things we never questioned.

She was, undoubtedly, our first love. It was her face and voice we memorized; her arms that held us. One of my earliest memories is the smell of the sun on her skin.

The three of us are putting together her memorial service and my sister emailed a list of fond memories to my brother and me. I think it nicely captures Evalynn, although I couldn’t help but add a few comments of my own (in italics):

Driving a motorhome and a massive boat as well

Backing up a hitched trailer flawlessly

Teaching us to paddle a canoe (stealth like, like Native Americans)

Always being the first to spot wildlife

Hitting a pitched ball with a bat (far, far, far)

Saying, and meaning it, that we’d never be able to run as fast as she could

Painting, Drawing, Sculpting (making just about anything with her hands)

Designing and decorating homes

Riding Motorcycles, Shooting a pistol

Dancing to any style of music (fabulous dancer)

Singing (even harmonizing)

Swimming a mile (diving beautifully; used to be a lifeguard)

Playing a musical instrument (the saxophone)

Mastering multiple sports (tennis! swimming! baseball!)

Fundraising for organizations she believed in (charitable work)

Baking coffee cakes

Reading in the bathtub

Charming her way out of speeding tickets

Charming most people, for that matter (quite the practiced flirt)

And laughing so hard she’d fall down

Beautifully said Binky. I’d also add that Mom was absolutely devoted to two out of her three husbands (sorry Dad!), adored and doted on her parents Effie and Roy, and never stopped looking up to her older sister Claudine. She played an important role in the early lives of Jemesii and August and my brother John’s daughter Shannon, as we were both single parents at one time. Our mother Evalynn was smart, beautiful, talented, capable and one of the strongest and bravest people I’ve ever known.

I miss her terribly already.

RIP Ezra

still in the wrapper:  the self portrait of Ezra which I purchased

still in the wrapper: the self portrait of Ezra which I purchased

Damn. I knew it was coming but still hoped it would not. Ezra Caldwell has passed, leaving his wife Hilary and dog Putney Sue. Today’s post on Teaching Cancer to Cry captures a bit of this amazing wunderkind’s essence.

My heart is heavy—condolences to his family. And many, many friends. Rest in Peace pal.

The world loses a very bright light: Sarah Broom

Sarah Broom:  photo by Shane Wenzlick (phototek)

Sarah Broom: photo by Shane Wenzlick (phototek)

Last Thursday I was up before the robins, in order to get Peter ready for a 5:30 a.m. departure for Washington DC with his classmates. After rousing our sleepy boy, I quickly scanned through my inbox. There was a message from my friend Sarah Broom, with the subject In memorium. I hoped to hell it was the title of a new poem but my heart was heavy as I opened the email. It had been sent by Sarah’s husband, Michael. Sarah had died.

As I hurried Peter out the door, I kept the news to myself. Already reeling from the Boston Marathon Patriot Day bombings, I felt an intense need to protect Peter from additional sadness and worry as he went off on what was intended to be a holiday.

After returning home, I crawled back into bed and fell right to sleep. When I awakened several hours later, I immediately recalled a dream:  I’d been sitting on the floor of a closet that was not mine. Most of the clothing was gone, but there were some beautiful objects on the shelves, shrine-like in presentation and fashioned from polished brass and ivory colored lace or coral. The door to the closet opened, and a stranger asked me what I was doing there. I gestured to the space around me and said, “I am so lonely, and this reminds me of the forts we built as children.”

For the past few months, I had spent many a night imagining Sarah, Thao and myself running, climbing, jumping, flying. Young and strong again, with scabbed knees and cheeks flushed with pleasure. Invincible.

My special relationship with Sarah began almost five years ago. When I took my initial dose of crizotinib in 2008, I was the fourth person in the world with NSCLC and an ALK mutation to do so. Sarah, who lived in New Zealand, had directly preceded me on trial as number three. Through social media and a common acquaintance (number two in the trial, our friend Kevin), we began a dialogue.

Initially, our communication was infrequent. With time, emails segued into long telephone conversations. A little over a year and a half ago, Sarah came to Boston for treatment, and we were able to spend some actual time together. Although she soon returned home to New Zealand, our sessions over the phone continued with renewed intensity.

Sarah was brilliant; a poet with a doctorate in English from Oxford in addition to a master of arts in English from Leeds University. Hers had been a tough road: Only thirty five years old and pregnant with her third child when diagnosed with lung cancer, Sarah advocated fiercely for the sort of care not readily available in New Zealand. For more than five years she endured the side effects of multiple treatments and a hopelessly aggressive cancer, always with unfailing optimism, courage and devotion to her family.

In our lengthy chats we talked of the things most friends do:  love, life, relationships. Books, creativity, our hopes and dreams. But we also discussed our illness and, of course, dying. In a way that was extraordinarily open and free from pretense.

I loved Sarah and felt intensely connected to her. I knew she was dying. In fact, the afternoon before I opened the email from Michael, I felt a certain shift in the universe and was certain that it had to do with Sarah.

I am devastated. However, my loss pales next to that of her family. Also, I know that Sarah had made peace with what was coming and that she is now free from suffering. She will live on in our hearts and in her own words, and although the earth may now be a bit dimmer, the sky is brighter still.

And when I walked out last night

it was cool, the coldest night this winter,
and when the stars asked me to join them
in the ache of their bareness, I let them
take me, and they carried me between them,
clusters of stars all along my body, and I arched right back and pointed my toes and fingertips,
and was as long as ever you could imagine
and they did not let me go.

by Sarah Broom

 

My heart is oh so heavy

When I was in high school, I fancied myself a bit of a poet. Like many an angsty teen, my own fabulous array of emotions provided plenty of fodder. Sensitive to a fault but determined to put on a tough face, I still remember a line from one particular poem: ‘let feelings never sharpen to the point of being felt’.

For a time, I followed my own advice, as I did my best to appear impervious to hurt. It was all an act; mine is, by nature, an open heart. There is a reason that the Tin Man was my favorite character in The Wizard of Oz.

Lately, my heart has often felt as if it were breaking, as too many of my friends with cancer have faced almost unthinkable challenges. Metastases in distant places—-bone, brain, liver and spine. Resultant pain and disability. Lungs that just won’t stop filling up with fluid. And in some cases, the sad realization that you have run out of options and that it may be the end of the line.

Tuesday evening, I just needed to stop feeling and thinking both. An alcoholic beverage might have helped, but is now verboten, so I plugged in the heating pad, popped an ambien, and went to bed at 7:30 pm. Too weary of spirit to visualize flying, I imagined instead floating in an inner tube down a dark river on a warm summer night. The moon was shining, and all around me were my friends who are battling cancer, each in their own inner tube. We held each others hands, as we gently drifted upon the warm water bathed in moonlight.

When I awakened the next morning I checked the text messages on my phone. There was one from Thao, only it wasn’t from Thao at all, but rather her husband. And he was letting me know that Thao had passed away on Monday morning, March the 25th.

Dear, strong and incredibly brave Thao.

She was only thirty three years old, leaving behind her husband, their beloved three year old son and a large extended family.

Last night, Thao and I once again took flight. This time, my companion weighed very little and was effervescent in appearance; as if composed entirely of twinkling lights. As we sailed through the dark skies, I recalled one of her final messages to me:

Close your eyes, holding my hand, flying in the air, and sweet dreams tonight.

I will never let go.

to know that you’ve done everything you could

Lauren Lynch, a new friend and participant in INSPIRE, the online support group for lung cancer that I belong to, posted today about her father’s passing. I was so very touched by her words and asked Lauren for permission to share them again here:

“On July 8th, we lost my Father. July 7th I had an anniversary party for my parents with a Fleetwood Mac coverband. Dad could not attend, so the band came to the house and played his favorite songs acoustically. Dad was able to enjoy the music, the whole room was nothing but love and we all experienced a very cathartic moment. I am including my eulogy here. It is not a typical eulogy telling memories of better times, but rather a dialogue that I think needs to be had and some perspective of how I survived my Father’s Cancer. I wish you all love and hope on your journeys and thank-you for all of the advice, support and kind words. ❤

First of all, I want to thank everyone for everything. For calls, cards and emails. For medical advice and a shoulder to cry on. For showing my Dad that his family would always be in good hands. Many people here know the pain I feel today… The pain of losing a parent. The truth is, I cannot imagine my dad being here for one less day than he was. Together, we fought the hardest battle we could and fortunately we made it to that point where we all felt it was okay to let go, it’s sad and it hurts, but it’s also a gift to know that things were not left unsaid, to know that you did everything you could. My Dad died knowing that you would all be here, even if he couldn’t and I know he was at peace.

Perspective is an incredible thing. There were so many pivotal moments of this battle that I can either chose to look back on in anger or I can rise above my initial emotions and see life through a different lens.

When I think back to Daddy’s diagnosis I can remember how I shut down for three days, angry at the world…thinking life was so unfair to me and hasn’t this family been through enough. Or I can remember how we regrouped and made the decision that even if Dad wasn’t going to be here as long as we wanted, we would never let him live without Hope. We were never after a cure, we were always after Hope.

I think back to Dad’s 62nd birthday, March 1st, when we learned that the cancer had spread to his pancreas. I can remember the anger I felt, at the disease, at the doctors and all the tears that were cried, or I can choose to remember the strength of my Dad’s arms when my sister and I crawled into the hospital bed with him to be comforted…That’s 3 grown adults, 1 hospital bed.

And last Saturday we could have been distraught once we realized there was no way he was making it down to the party, but instead we chose to be thankful that he was home, that family and friends were by our side, that he still enjoyed the music and that he was still able to tell me “I love you” the morning before he died.

It’s all about perspective, and what you choose to think about. Those are my choices.

To switch gears a bit; I feel this needs to be said, and I hope it does not come off as being callous.

If you’re sitting here today and have found yourself feeling thankful that cancer doesn’t “run in your family”… please don’t….. I’ll let you all in on a little family secret…before October of 2010, cancer didn’t “run in our family” either.

And if right now you find yourself saying, “well I don’t smoke, and I eat healthy and I exercise!” That’s great–I commend your healthy choices and wish that that was all it took. One of the first things we learned while attending Gilda’s Club Cancer Support Center, is that Cancer does not discriminate. I feel as if people have this sense of relief when I tell them that Daddy smoked. Like they are safe. In this last year I have met 20 year olds with rectal cancer, 30 years olds with extensive breast cancer and 40 year olds on their death bed. I am sure they thought the same thing, I eat healthy, I don’t smoke, I’m young… I’m safe.

My point is two-fold. First…a cancer diagnosis does not need justification. There is not one to be found because no one deserves to go through what my Father went through. There is no blame to be had.

Secondly and this is the most important part: never live your life in fear, but don’t be so naïve that this could never be you. If you feel yourself thinking about someone from you past…call them. If you have someone special in your life, tell them…and tell them why they mean so much to you. And if there is some place you have been wanting to get to…go there. This doesn’t have to be on a grand scale; a trip around the world. I am talking about the little things, the break from routine.

The day we found out Dad had cancer, we hiked to the top of the Dinosaur Tree. Daddy landed himself in the hospital the next day, but we did it. Dad always wanted to go back to Sausalito…so we went…He also went to Devil’s games, visited his grandparents’ grave in Sleepy Hollow, helped me build the bar, threw Abbey around in the pool, watched the Bobsled Team win the world championships, reconnected with long lost friends and gave unheard advice to his daughters. He did it all and he did it while battling cancer. These things would have been much easier to accomplish had he started years ago and not been fighting for his life, fighting for his girls…

But it’s back to that perspective thing again. Like Gilda Radner said, “If it wasn’t for the side effects, everyone would want cancer.” Because it is that thing that jilts you alive and makes you look at life from a new perspective. You rise above all the mundane crap that fills our lives and you become aware of what is truly important.

Yesterday was a tough day. Between dealing with Contractors, plumbers, securing lighting for the bar, weighing in on funerals, getting a brick wall built, wrangling our wood worker and trying to figure out how the hell we were going to pay for all of it. I was tired and stressed and just wanted to curl up in a ball and forget the day ever happened. But I didn’t. Because I had promised myself that I was finally going to go to the little red light house under the great big bridge. Dad and I have been saying we were going to go since I read the book as a child. We never made it together, but I wasn’t going to use that as an excuse. So I walked down there with my equally exhausted roommate, and we jumped the fence to the weathered stone in front of the light house and lay there with the bridge running over top of us and the lighthouse behind and I felt this wave of relief. And I felt Dad and I asked him for help in writing this damn speech and I asked him for guidance, and I told him how much I loved him and wished he was there. And we listened to Roy Orbison’s You Got It and I felt thankful and relieved that I hadn’t let the day get the best of me. I didn’t let myself get so clouded by the daily crap that I couldn’t seize the moment.

If there is one thing to be gained from all of this–that is it. Two lessons about life…it waits for no one and it goes on.”

The bar that Lauren’s father helped her build in NYC will be opening soon (I told her that as soon as I was able, I would belly up). It will be called Harlem Public and will be located on 149th and b’way.