Tag Archives: terminal lung cancer

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

 

In remembrance: Lisa Smirl

An important part of my journey has been the opportunity to connect with other individuals (and sometimes, their family members) who are battling cancer. These relationships have enriched my life in so many ways. However, as many of us are dealing with a terminal illness, heartbreak is sometimes unavoidable.

Dr. Lisa Smirl was the first of several of my friends from INSPIRE to write a guest post in November. What she chose to share was incredibly poignant and touching. I desperately wanted to believe that this bright young woman had many years ahead of her. Sadly, she passed away on February 21, 2013.

I would like to share a tribute to Lisa from the Centre for International Studies and Diplomacy. In addition, I am reposting her blog. Rest in peace, Lisa.

“It is with great sadness the Centre announces the death of Dr Lisa Smirl who died on 21st February 2013 after a long and brave fight against cancer. Lisa was a Teaching Fellow at the CISD from 2005 until 2009 when she joined the University of Sussex as a Lecturer in International Relations. Her research on the spatial practices and culture of global governance was truly innovatory and marked the beginnings of a highly promising academic career. Lisa’s thoughtfulness, diligence and unrivalled enthusiasm for her colleagues and students lit up any gathering of which she was part. No-one who worked with her will ever forget how life-affirming it was to be in her company. For her to lose her life at such a young age is a devastating loss, eased a little only by the memory of what a pleasure and honour it was to have known her.”

bio-pic“I’m a 37 year old woman, married, no children (but two very spoiled cats!). I live in the UK but am Canadian. Was diagnosed November 2011 with Stage IV adenocarcinoma with extensive mets to the bones, brain and liver. I was an Assistant Professor in International Relations at a university in the UK and became alerted to the ‘problem’ initially in Fall/Winter 2010-11 through having shortness of breath/ wheezing/cough which was wrongly diagnosed as asthma. I blamed the cat, had the carpets cleaned and went on with my regular routine of biking to work, doing ashtanga yoga, hiking on weekends and working too hard.

Over the course of that Spring (2011), I also was referred to a physiotherapist for shoulder and arm pain. In June, I started experiencing what are called ‘visual migraines’ – where your vision fractures and shimmers and swirls for about half an hour – and was losing the ability to read text. I was also experiencing photo-phobia – where bright lights hurt your eyes. By September, I had become so sick that I had to go off work, having been diagnosed with ‘depression’ and ‘anxiety’ and having been put on anti-depressants. Still, despite my pleas, and a dramatic weight loss, none of my doctors (and I saw three different family practitioners) would consider my symptoms in conjunction with one another – insisting that they were all common, unrelated problems (migraines, asthma, depression, back pain).When in November, I completely misread my asthma prescription and took 10 times the recommended amount only to have it make no difference to my violent cough, the doctor finally sent me for a routine X-ray. I was called back within hours. Cancer. And so it begins….

There are three points that I would like to make:

1. That it is a sneaky, cruel, insidious disease. Looking back, it was clear that I was getting sicker and sicker and had been for about 14 months prior to my diagnosis. But at the time, it is so easy to just dismiss a cough, a wheeze, feeling a little tired and to continue with your regular routine. Because it happens so slowly, it is easy to miss the weight loss, the lack of appetite, or the excuses that you start to make for taking the elevator instead of the stairs.

2. I can’t prove it, and this is just my opinion, but I have no doubt in my own mind that my misdiagnosis was in large part due to the fact that I was a middle aged female and that my male doctors were preconceived towards a psychological rather than a physiological diagnosis. It is so easy to say that someone’s symptoms are ‘anxiety’ related if they are a little bit complicated, unclear or unusual. Don’t repeat my mistakes. You know when something is wrong. Find another doctor that you connect with and who takes your concerns seriously. Get referrals. Get tested. Refuse to be dismissed.

3. The elephant in the room: smoking. I didn’t do it a lot but I did do it: socially, at parties, doing research interviews if it made my interviewees feel more comfortable. I think that I thought that because I only did it a little, or because I was healthy in other areas of my life – that it wouldn’t matter. And although my doctors insist that the amount that I smoked was incidental to my diagnosis, I tend to disagree. Cancer acts very differently in different people and while some of us can get away with smoking a pack a day and live until we’re ninety, I think that for some of us, all it takes to contract LC is a couple of cigs a week.What is also notable – but hardly surprising – about the general discourse is how there is still an implicit emphasis on non-smokers being more deserving of a cure. (This could be my own insecurity, but every-time I come up negative for a new test that is more common in never smokers (EGFR, ALK), I feel that somehow I have failed at my cancer; that it’s because I am less deserving of a cure.) So, on top of all the other bullsh*t that cancer throws at you, LC has the added sweeteners of blame and guilt. This in turn, acts as a silencer for those of us, who, had we not smoked, might feel more entitled to have a voice in the debate. Instead of speaking up – screaming (or wheezing ☺) for a cure for this woefully underfunded disease – and taking the tobacco companies and other environmental polluters to task for their actions, we focus on our own guilt and quietly accept our ‘punishment’.

As a way of forcing myself beyond my guilt (and having been inspired by Linnea’s amazing blog!) I have started chronicling my own experiences here: stageV.net

I would be so honoured if you would join the conversation. xxx”

Feeling kind of blue

Paint my mood blue

Seemingly out of context and without warning, it hits me. Hard. Like a punch to the chest, it takes my breath away.

I have terminal lung cancer.

Tuesday afternoon  I crawled into bed with the heating pad and had myself a good long cry. Eventually David wandered in and joined me under the covers. We just lay there for a bit. Feeling blue.

And then, because we have a fifteen year old for whom we are doing our best to maintain a veneer of normalcy, we pulled it together. David started dinner and I blew my nose and washed my face.

Peter was working on homework at the dining room table and I sat down across from him. Picking up the science section of the New York Times, I starting reading an article by Natalier Angier,  True Blue Stands Out In An Earthy Crowd.  Here was a totally different take on blue. Blue in all its wonder. Filled with awe inspiring paragraphs such as this one:  “In place of blue pigment, vertebrates and others turn to figment. As Dr. Prum and others have determined lately, many of nature’s most spectacular blues — the plumage of a blue jay or indigo bunting, the teal of a skink lizard’s tail, and now the lesula monkey’s blue scrotum and Pollia’s shimmering blue fruit — are structural in nature. They arise from the specific shape and arrangement of their underlying components.”

So there you go. It’s tough going sometimes, but it’s all about perspective. An hour earlier, my heart had been breaking. And now it was bursting with joy.

 

Pathologically optimistic and unrelentingly positive

I was prepared to write yesterday, but faced with Haiti’s natural disaster, I found I couldn’t.  I am back at it today, with a somewhat curious title.  It is, in essence, my battle call; after the initial shock of bad news, I find it necessary to rally with a message of hope.

Last week I received phone calls from both my very caring head trial nurse and my oncologist.  They were checking in and following up with reassurance following my slightly concerning report from the most recent CT scan.  I assured them both that after a few days of anxiety, I was back on track with a can do attitude.  By definition I have a terminal illness, but it is counterbalanced by determined optimism.

It is virtually impossible for me to remain depressed for long.  I would imagine this is so for a combination of reasons.  To begin with, I am so in love with this world and view each new day as an adventure.  I much prefer happiness to sadness, and make my choices accordingly. Depression requires focus on one’s troubles, and I am quickly bored and easily distracted.  I have a home, adequate food, love and friendship.  And let’s not forget the prozac…

When it comes to attitude, I actually feel a bit of a kinship with our golden retriever Buddy.  Retrievers are prone to hip dysplasia, but Buddy came from a lineage with no appearance of the disorder.  That is, until Buddy.  He was only eight months old when an x-ray confirmed not just severe hip dysplasia on both sides, but two bad elbows as well.  Poor Buddy.  The breeder offered to ‘trade’ him for another dog, but that was unthinkable.  We considered surgery, but ultimately decided there was just too much to fix, as well as the fact that each surgery would involve long periods of confinement and discomfort.

Buddy is not yet three years old, but there are days when his movements are more like those of an old dog.  Undoubtedly, it will get much worse.  None of this has had any effect on Buddy’s joie de vivre.  He is happy, happy, happy and always up for anything.   Food!  Squirrel!  Walk!  Play!  Pet!   More wag, less bark, this one.

I’ve known some worried dogs, but not many.  And usually, even in the most miserable of situations, you can turn their mood around.  I believe they respond to life much as I do:  each day is an adventure, happy is good, all distractions are eagerly welcomed, as is food, shelter and love.  No prozac necessary.

The “Now you see it, now you don’t” scan

Before I move on, I thought we’d take one last, long view of the before and after CT scans of my lungs. The scan on top was taken on September 16th of 2008 two weeks prior to starting the PF-02341066 trial. The lower scan was taken seven weeks after my lead-in dose (taken one week before starting regular doses) on November 19th.

beforeandafterlinneacancerslice1beforeandafterlinneacancerslice2 I had been receiving scans every three months for three years at the time of the September 2008 scan.  They had gone from questionable to progressively worse. “Interval increase in size and number of multiple bilateral pulmonary nodules is consistent with progression of metastatic disease”, read a report from August of 2007.

In stark contrast, the radiology report from November 19th of 2008 read: “Marked interval improvement of bilateral pulmonary lesions, with near complete resolution.  Small remaining lesions, left lower lung septal thickening, and left pleural effusion as above.”

I should point out that radiologist’s reports are, by necessity, very conservative in their wording.  Keeping this in mind, “near complete resolution” practically gushed with enthusiasm.

The scan from September illustrates clearly how far the cancer had advanced. The remaining upper lobe of my left lung was literally clouded with malignant nodules.  My right lung also shows a diffuse haziness indicating the spread of disease.  I had once again developed a hacking cough and increasing shortness of breath, and it was no longer possible to engage in many of the activities I had previously.  I was losing ground in my battle with cancer and it seemed inevitable that I would have to concede defeat.

But that was before PF-02341066.  Now I could literally and figuratively breathe again.  I was yet at war, but at long last I had a victory.