Monthly Archives: February 2013

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”

Yes, they have physical therapy just for that

pelvic floor isolation001

The pelvic floor dysfunction which I described some weeks ago has not abated—I skipped the pap smear at my annual exam so as not to exacerbate the situation. And I cancelled a scheduled cystoscopy, which the urologist wanted to perform due to the fact that when I have a urinary tract infection, I present with blood. However, this is not a new symptom, and I don’t really believe it is indicative of anything serious.

Fortunately, there is physical therapy available for issues arising in the pelvic floor. It would seem there is a great demand for it, given the amount of time I had to wait for my initial appointment.

Anyway, I had no idea what to expect. Fortunately, we were given a private room as my first appointment included an internal exam. As she talked me through the examination, the physical therapist was somehow able to make this potentially awkward situation less so. More importantly, she confirmed that my pelvic floor is indeed hypertonic:  I am experiencing  uncomfortable spasticity as a result of chronically tight muscles. She then guided me through repetitions of alternately tightening and then relaxing my pelvic floor. For those of us who had long been implored to practice our kegels, (which I remember to do three or four times a year at most), the notion of relaxing that particular muscle group was rather novel.

However, given my level of discomfort and my reticence about adding muscle relaxants into the mix, I am motivated. Off to practice!

The not so skinny

The start of a new painting

The start of a new painting

Physically, I am thriving. The wheeze in my chest is only occasionally noticeable and I rarely cough. More comfortable at night, I now sleep soundly and wake feeling rested. I feel hungry all the time, and have gained at least six pounds. In fact, aside from some daytime fatigue (an expected side effect of the Alimta), I feel really great.

Not surprisingly, things have been looking up in the emotional department as well; I’ve got my mojo back.

Obviously my improved physical state has come into play. However, there is more to it than that. Some months back, I came as close as I have ever come to losing hope:  it seemed that my personal challenges were just too great. When I say this, I am not merely referring to my cancer, but rather insinuating a more general crisis of self.

I shared my sense of despair with a few trusted individuals. I was clear eyed and practical about what I could and could not change. There were some difficult weeks where my focus was on merely getting by. However, during this time I was making some important decisions. One, I was going to start getting my affairs in order (more about this to come). Two, each additional day I got to spend with Peter, my youngest child, was a gift. And three, I was going to stop procrastinating creatively:  I would draw, write, assemble and paint as if my life depended on it. And by doing so, maybe I could finally achieve some financial independence.

The image above is of the painting I am now working on. My reference is a black and white photo from the fifties of my very beautiful mother and her  friends at the beach. Often when I start a painting I just dive right in, but this time I sketched the scene in with graphite first, just as I had been trained. And I have been painting with real direction—I want to get this painting done and move on to the next one.

I am fat with purpose.

Open Heart

One of my favorite valentines

One of my favorite valentines

A day devoted to maybe the most important thing of all:  LOVE. The more you give, the more you get, and I want LOTS!!!  So, HEART Y’ALL!

Hits and misses

From the inside looking out this morning

From the inside looking out Saturday morning

The blizzard rolled in right on schedule Friday, but fortunately, we were graced with a big dump of snow but never lost power; nature in all its glory is sometimes best appreciated from a snug environ.

I had my third infusion of pemetrexed/carboplatin on Thursday. As the last round turned out to be so manageable, we decided to ramp up the platinum a bit, and for the first 48 hours, I felt pretty good. However, yesterday I skipped my afternoon zofran and began ramping down on the dexamethasone as well. By early evening I was seriously nauseous, and experiencing some pretty intense heartburn and a headache. I took a compazine, and when that had no effect, added zofran and dexamethasone. Soon I was feeling better again–I can’t begin to imagine how difficult chemotherapy must have been before the advent of steroids and antiemitics. Thanks to an ambien, I was able to sleep, and hopefully today I can again back off on medication.

So—lots to share. I think I’ll start with the visit to the Avon Breast Center at MGH. After the concerning mammogram on Tuesday, a sterotactic biopsy was scheduled locally. However, I immediately contacted Dr. Shaw and asked about having a consult at MGH instead; if the situation required treatment, it only made sense to coordinate my care right from the start.

Well, the magical Dr. Shaw got me an appointment on Friday afternoon. Because of the impending storm, it needed to be cancelled, but they were able to squeeze me in Friday morning instead. Once there, I met with the surgeon, who performed an exam and immediately found a lump (that had been missed previously) in my left breast as well. And then I had some more mammograms done, this time using a 3D imaging machine. After a short wait, more close-ups on my right breast, and then an ultrasound of my left breast.

The conclusion: likely benign fibrocystic changes in the left breast and a 99.5% chance that the microcalcifications in the right breast represent non cancerous changes. So I won’t need to undergo a biopsy and instead will have a repeat mammogram at the Avon Breast Center in six months. The moral of this story would seem to be, whenever possible, (and particularly when your medical history is complicated), get yourself to a center with the best diagnostic apparatus available as well as the expertise to interpret those results.

So that was great, great news. A good thing too, as my scan prior to chemo on Wednesday was not quite as encouraging:  “Mixed treatment response with interval decreased groundglass opacity in the left lower lobe, though slightly increased let lower lobe consolidation and slightly increased mixed solid ground/glass opacities in the right upper lobe.

In addition, the results of the initial genetic sequencing of the ALK mutation are in (it remains to be seen if full genetic sequencing can be performed, as my biopsy  sample was quite small and will require a cell line to be grown in the lab—something that may or may not be possible). The secondary mutation that showed up post crizotinib (S1206Y) is nowhere to be seen. In its place is G1202A, also a missense mutation on the solvent front, but unfortunately one which confers a good deal of resistance to all ALK inhibitors. This will potentially limit treatment options, and the mixed treatment response may necessitate a change of course sooner rather than later.

I am focusing on the fact that except for the few days post chemo, I am stronger than I have been in months. In fact, although I still have a small amount of wheezing and an occasional cough, the copious amount of  nighttime sputum has disappeared. Hopefully the resolution of this troubling side effect correlates with the positive response. However, given the mixed response, I do wonder if there is a chance that the resolving groundglass opacity might have been an inflammatory response to the LDK378 (pneumonitis has been observed as a rare side effect in patients treated with crizotinib).

At any rate, there is no way to know and the important thing now is that I am feeling better. One more round of pemetrexed and carboplatin and then, unless a subsequent scans reveals significant progression, I will go on pemetrexed (Alimta) maintenance. One round, one week, one day at a time.

Carrying on

This again

This again

I had my repeat mammogram yesterday. It was my right breast that was in question, and initially seven additional views were taken. Those of you who are of the female persuasion are only too familiar with this procedure, but for the rest of you, here is a precise description of a mammogram copied from womenshealth.gov (italics mine):

“You stand in front of a special x-ray machine. The person who takes the x-rays, called a radiologic technician, places your breasts, one at a time, between an x-ray plate and a plastic plate. These plates are attached to the x-ray machine and compress the breasts to flatten them. This spreads the breast tissue out to obtain a clearer picture. You will feel pressure on your breast for a few seconds. It may cause you some discomfort; you might feel squeezed or pinched. This feeling only lasts for a few seconds, and the flatter your breast, the better the picture.”

Ironically, after coaching you into an awkward position, and then squeezing your breast so hard you think it might just pop, the technician advises you to ‘try to relax’. Yup. Thats the same line repeated at our other annual exam, the pap smear. In both situations, relaxation is simply inconceivable.

After a sufficient amount of squashing I was ushered into a special waiting room while the radiologist reviewed the films. Morning television, a pile of tatty magazines, and, curiously, a large collection of Chicken Soup for the Soul’s. And a reassuring sign that read “We compress because we care.”

Soon I was joined by another woman; a real Chatty Cathy. The first thing out of her mouth was “Do you have breast cancer?” I was momentarily mystified, but then I realized that my lack of hair is a potent signifier. So I told her that no, I had lung cancer. Her next query: “Oh, and it spread to your breast?”. Oh my. After telling her that I hoped not, her final, and I suppose inevitable, question was, “Did you smoke?” I was relieved when my name was called and I was spared from further conversation.

It was but a brief respite, and I was returned to the waiting room after two further (and even flatter) compressions/impressions. Fortunately Chatty Cathy’s nose was buried in a magazine.

When I was fetched again I was led to a far room for ‘privacy’. There was no way this was going to be good news.

Sure enough, The findings were as follows: “Diagnostic views of the right breast including spot magnification views were performed demonstrating a cluster of suspicious looking amorphous calcifications in the right central medial breast. A second grouping of calcifications is noted within the right superior breast. These 2 groupings appear to contain morphologically similar calcifications. The breast tissue is heterogeneously dense, which may obscure detection of small masses. There are no dominant masses seen with the right breast.”

The radiologist explained further that these were ductal microcalcifications and that worst case scenario, she felt they might represent a ductal carcinoma in situ.

Tomorrow I will meet with Dr. Shaw for a scan review (I had a chest CT scan on Monday) and then my third round of chemotherapy. On Friday I will return to the Avon Breast Center at MGH to meet with a breast surgeon and to schedule a biopsy (80% of breast biopsies are not positive for cancer–I’m hoping mine will be one of those).

And just to make things more interesting, this is the regional forecast for Friday:

...A POTENTIAL HISTORIC WINTER STORM AND BLIZZARD IS EXPECTED TO
DROP 1 TO 2 FEET OF SNOW ACROSS MUCH OF THE REGION FRIDAY INTO
SATURDAY...
Never a dull moment…

Some close shaves

Some incredibly high winds blew through the area on Thursday. Upon awakening Friday morning, we discovered that two big pines had fallen and brought a large branch from a maple tree down with them. The whole mess grazed the edge of the house and somehow landed in between the propane tank and the air conditioning unit. A section of the chain link fence was destroyed and one errant branch took out some screens on the porch, but all in all we got lucky. However, David has decided it is time to bite the bullet and pay to have a few more trees removed, as a direct hit would have been devastating.

Friday brought a bit more anxiety, as I got a call back in reference to the mammogram I had on Thursday. I refuse to believe that there is actually an issue, but I will have to go back in on Tuesday for another read.

And then, just before noon I was rushing around to get out the door and rolled my left ankle (the same one which sustained a spiral fracture in 2009) and took a nasty little spill. I limped back inside, iced and elevated, and then decided it was going to be just fine, and I could go run my errand.

It turned out to be a poor decision and by the time I got home I was really hurting. More ice and elevation, but as my discomfort grew, I felt a trip to urgent care might not be a bad idea. However, first I had to help Peter with the last of his application essays. Once the submit button was pushed, David fetched my crutches from the garage and we were off. Three x-rays later it was determined that I’d sprained my ankle and I left with a splint and instructions to check in with my orthopedic surgeon next week—just to make certain that the hardware inside my ankle hasn’t shifted.

And then there’s my head. The chemo cocktail that I am receiving lists hair loss as a potential side effect. At first it seemed as if my follicles might just hang on, but by week two they began to lose their grip. A couple of days ago I came to the conclusion the comb over look had to go. First I snipped off as much as I could with the shears, and then David clean it up with electric clippers. Always a bit of a shock initially, sans hair, but I am actually much more comfortable.

Two bald Linnea's

Two bald Linnea’s