Tag Archives: terminal lung cancer

Frosted

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Yesterday I had two slices of chocolate cake for lunch. And yet another for dinner. This is so not my usual behavior, but then again, desperate times call for desperate measures.

Sigh. Desperate is surely an exaggeration but then again, this is undoubtedly an interesting moment in history.

2017 started off with a bang when I tried to pay my health insurance premium for January. To great consternation, I found myself locked out of my own online account. Never, ever, a good sign.

It was a holiday weekend so I had to wait until January 3rd to speak with a representative at BeneDirect, the company that manages my health insurance through COBRA. The pleasant young woman on the other end of the line confirmed that due to non payment in December my policy had been terminated.

Isn’t that an awful word–terminated? Right up there with terminal. No good has ever come of either one of them. Were I Queen they’d both have their heads lopped off.

Speaking of heads, what’s inside mine is nowhere near as sharp as it once was. I’d never knowingly miss a COBRA payment, understanding only too well how much is at stake. I am undoubtedly any health insurance company’s worst nightmare–having been in treatment for lung cancer for almost twelve years now. And being denied health insurance is my worst nightmare.

Fuck, fuck and more fuck. My only option was to file an appeal. Well of course I got right on that and faxed if off that very afternoon. And just to make sure nothing fell through the cracks, I call BeneDirect when I returned home to see if they’d received the fax. Confusingly, this representative told me that no, I had not in fact been terminated. That due to the holiday weekend lots of people had been late with their payments. And if I overnighted payment for December and January, my policy would remain intact. One more trip to FedEx and a big sigh of relief.

Until two days later when I received an email from the human resources representative at my ex-husband’s place of employment (they administer my cobra) informing me that in fact, my policy was kaput.

Many phone calls, emails, a few tears and several days of additional anxiety later, I logged on to see that my policy had been reinstated.

Man oh man oh man. I only have one more year of COBRA before being thrown to the free market (or the wolves, depending on how this administration sorts things out) but I’d rather not have to deal with that shit yet. Of course that doesn’t mean I can relax either. Like everyone else dealing with a chronic condition, I am nervous as hell that preexisting conditions and lifetime caps will in fact be reinstated.

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And if that happens, we can always just eat cake.

xo

It ain’t over ’til it’s over

Several weeks ago I got a call from a friend who is also battling stage IV lung cancer. He’d gotten bad news; very bad news. His cancer had spread in such a way that his oncologist felt he had only three months to live with treatment but half that long without.

My friend was devastated, as was I. We talking openly about dying—something he couldn’t do easily with his family. I told him that our connection would remain no matter what happened next. He said he loved me. I had the feeling that this might be the last time we spoke.

But I also reminded him that there was really no way to know if this was it—that I too had once been told I had come to the end of options and yet here I was. That he should hold onto hope, because his situation could still change.

Yesterday I got a text message from him. His latest MRI and CT scan had showed reduction of tumor throughout his body.

We spoke again last night–this time the mood far less somber. He was still in a tough spot, but could once more see the horizon. A return to chemotherapy had reduced his tumor burden but he was already looking for the next potential therapy. He sounded like a man with a future.

And this is on a good day

I’ve been out of control the past few months—driving, flying and riding trains. Taking care of shit and visiting folks. Having adventures. Tying up loose ends. And damned if it isn’t fabulous that I have the energy to do all this.

PF-06463922 has been my drug of choice (makes it sound a little bit sexier, no?) for more than seventeen months now and my cancer remains stable. That’s the longest I’ve ever gone on a therapy without progression and continued stability is my new mantra. The troubling side effects that I experienced initially have mostly disappeared although time management and memory remain a challenge and the neuropathy in my hands and feet is not going away. Some days I feel like I’m living with a very young child and someone who is elderly—they’re both me.

I am sharing my latest radiology report to lend some perspective. As I look so very healthy, (healthier than most healthy folks) it’s easy to forget that since the beginning of this journey (April of 2005), I have never been cancer free. That’s right—removal of my lower left lobe and four rounds of cisplatin and taxotere was not enough to push this crud out of my lungs. Since then I have always had a varying degree of cancer hanging around. At the moment, the situation is pretty good but this is what a good day looks like:

Lungs and Airways: Central airways are patent. A 1.9 x 2.8 cmlingular subpleural opacity and 5 mm subpleural right upper lobenodule (image 40) are unchanged from 10/7/2014. Several 3-4 mmpulmonary nodules are unchanged from 10/7/2014 and are found in theright upper lobe (image 29, 37, 46, 52) and left upper lobe (image45, 54). A 5 mm subpleural anterior right upper lobe ground glass nodule (image 48) is unchanged from 11/19/2014. Subpleural ground
glass nodule in the anterior right upper lobe measuring 6 mm (image
45) is unchanged from 10/7/2014. A 4 mm superior segment right lower
lobe groundglass nodule is unchanged from 1/19/2014 (image 43).
Additional left upper lobe groundglass nodules measuring up to 6 mm
(image 50) are unchanged from 10/7/2014.

If I was just being diagnosed we’d all freak out. As it stands, this is a great report.

My cancer and I have been sharing the same body for almost eleven (known) years now—that’s 1/5 of my lifetime. Wrap your head around that. During that time I have been to the edge of possibility and back again, a looping cycle of dying, hope, disappointment, loss, more hope and a whole lot of living mixed in.

It can be a real mind fuck.

The Boston Globe has a new online medical magazine called STAT. I was interviewed (print and video) for an article about the emotional roller coaster faced by terminal patients who are given the opportunity to try high risk experimental therapies. Clinical trials offer hope (our favorite word) but responses are not guaranteed and when they do occur, are of unknown duration. All that uncertainty can really mess with your head.

http://www.statnews.com/2015/11/04/for-cancer-patients-breakthrough-drugs-are-saving-lives-but-wrenching-souls/

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.