Monthly Archives: November 2012

Malcolm

Another of my INSPIRE friends, Darlene, was caretaker for and devoted sister to her brother Malcolm. Her moving responses to my questions begin here:

Where do I begin ?? How do I tell the story of a simple life for a simple person who was content with all the simple things in life and never asked for more?

Malcolm was diagnosed with small cell lung cancer in July of 2010. Upon hearing that he had this very aggressive form of lung cancer, Malcolm began to cry, only to be comforted by a nurse who told him to keep in mind that we are all individuals and that he might well respond to treatment.

It was exactly what Malcolm needed to hear. Darlene describes his sudden shift in attitude: “He said he was going to beat this disease and that’s the way he saw it…and never saw it any other way.

In fact, Malcolm managed to buoy the spirits of all those around him:  “I am sure that the thought of dying had to enter his mind from time to time..but for the most part, Malcolm was such a positive person. He always managed to make me smile at his confidence. He always managed to keep me positive…the one who was sick with the illness, a life threatening disease, was able to keep the one who wasn’t sick and all of us around him, positive.

Malcolm completed treatment in December of 2010 and entered what would turn out to be a very short lived remission. Two and a half months later Malcolm was found to have a single brain metastasis and began WBR, or whole brain radiation. Not long after this treatment was initiated, the cancer recurred in Malcolm’s lung.

Malcolm was told he must finish the WBR before having any further treatments for the recurrence in his lung…before he could complete the WBR the cancer in his lung spread, blocking the airways and causing his right lung to completely collapse. He was then told nothing further could be done for him and he should have hospice care.

Malcolm died on March 20th of 2011..the first day of spring and the day after my birthday. On a Sunday.” Darlene feels that Malcolm’s acceptance of the fact that he was dying made his passing easier for the living. “How can someone who is dying make it easier for those who love him?  Malcolm did just this…never once did I see him show fear. I don’t think I could have handled seeing my wonderful brother being afraid.”

“I hope that I can be just like him. Brave and content; accepting of whatever outcome…making it easier for my loved ones…as he did. A simple person, who lived a simple life and was content with the simple things. Malcolm was amazing. I learned so much from this simple person…in life and in dying.”

 

Roni

Next up is my friend Roni, who had smoked, but quit six years prior to her diagnosis. Interestingly, Roni has an ALK mutation, just as I do. The typical profile for someone with an ALK mutation is a young, never smoker with adenocarcinoma. Profiling may be a useful tool for prediction, (time and money saving) but it is dependent upon generalities. I believe it is best to operate under the assumption that there will be exceptions to every ‘rule’, and thankfully Roni was tested for an ALK mutation even though she did not fit the profile. Please welcome Roni:

“I guess I should have known! I shouldn’t have been so surprised. I was a smoker for over 30 years, we lived in a home where radon was present, I frequently suffered from bronchitis, I worked for years in an area that was enveloped in jet fuel fumes and my mom died from lung cancer. But, who actually believes it will happen to them?

It all started with kidney stones…oh, they were bad. I went to the emergency room and after the x-ray, the technician asked me if I ever had pneumonia. He saw a spot on my lung. After 4 days in the hospital trying to pass those blasted stones, my PCP sent me for a CT scan and then to a pulmonologist. When he explained the results of the scan to my husband and me, I fell apart. I couldn’t stop crying.

I should have stopped smoking when my girls were born, or maybe when my mom died or maybe when my dad died the following year or even when my first husband died three years later. I was still young then, I could have quit then, but I was hooked!!! Finally, 15 years later, I did it…I quit smoking!

Six years after that, my oncologist gave me my diagnosis – Stage IIIB Adenocarcinoma with 18 months to 2 years to live. Devasted, I headed home and tried to put everything in order. I took each of my girls on special separate mini vacations so we could have some final quality time together. I bought a cemetery plot and picked out my stone. I made a will. And then I braced for the worst. That was in 2006!

And, here I am, 6 1/2 years later….a little older, a little chubbier and
so very happy.

Why so happy? Well, when I was diagnosed, my youngest grandchild was 6
years old. I knew he would never remember me and how much I loved him and
my other 4 grandchildren. I couldn’t imagine not watching them grow and
develop into the unique individuals I knew they were going to be. I wanted
to be around to celebrate their birthdays and graduations and weddings and
their own children. Well, I might not get to do all of that, but I am
thankful for the many additional years that I have been blessed to live and
be a part of their lives. We have made many memories in the past 6 years.
Just thinking about it makes me smile.

So, how did I get here? Oh you know, the same old road: radiation, surgery
and chemo. Lots and lots of chemo. Years and years of chemo (I think you
get the picture). But then a great thing began to happen. Pharmacies
actually started experimenting with drugs to fight lung cancer! It was
amazing. Even though lung cancer kills more people every year than any
other type of cancer, other cancer treatments seemed to take priority. And,
I was really kind of okay with that. If my husband developed prostate
cancer or one of my girls was found to have breast cancer, I would want
there to be a cure for them. But the tide started to shift a little when
they found out people who did not smoke also got lung cancer. Imagine that!
They weren’t the cause of their own cancer! So, the competition started.
How lucky for some of us. Because I have a certain ALK gene in my tumors, I
have been fortunate enough to be able to take two pills a day to shrink my
tumors and to prolong and improve the quality of my life. I have the
opportunity to get up one more morning and see the sun and thank God for the
beautiful life he has given me. I get to spend one more day with my
wonderful husband, loving daughters and my precious grandchildren.

But, I know it won’t last. When this medicine stops working, maybe there
will be another to take it’s place. Maybe there won’t. Should I sit around
and worry? No. I don’t consider myself to be either positive or negative,
just realistic and very, very thankful. It could always be worse. This
journey does not have a good outcome, but when the end is near, I will not
hesitate to take every pain pill and every treatment necessary to ease my
suffering before I reach my final home.

We are all family in this battle and I pray that each and every one of us
will have the loving support of family and friends, knowledgable doctors and
kind nurses. Blessings to all of you.

Roni”

And now some words from my friends: Lisa

In recognition of November as the designated month for lung cancer awareness, I asked members of my online support group INSPIRE if they would be willing to share their personal stories. First up is a post written by my friend Lisa, who was misdiagnosed with a number of garden variety ailments before learning that she had lung cancer. Sadly, a delayed diagnosis is all too common, and the suggestion that her symptoms may have been psychosomatic in origin mirrors my own experience prior to diagnosis.

Lisa also addresses the issue of stigma, from the perspective of someone who was an occasional, or social smoker. Her description of feeling less deserving of care is heartbreaking. Please welcome Lisa:

“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”

More than one way to shine a light on lung cancer

On Tuesday night, November 13th, I joined my friend Lorraine Kerz in Keene, NH for a special Shine A Light on Lung Cancer Vigil sponsored by the Lung Cancer Alliance. One of many taking place across the country, it was a modest, grass roots affair–a far cry from the original Shine A Light, which took place in Boston on the same evening. The event in Keene was outdoors, our lights were glow sticks, and there was a two to one ratio of audience to speakers. Taped to the front of the podium was a picture of Lorraine’s son Silas. Lorraine spoke about his tragic death from lung cancer at the age of 29 and how his passing motivated her to become an advocate for young adults with cancer. I also shared my own story, and concluded with what I hoped to be a rallying cry to action. However, it is important to know your audience, and this small crowd would have been better served by some basic information about lung cancer. No matter; Lorraine and her friend Kim, who helped organize the event, are to be applauded for their contribution to raising awareness and I am so glad I was able to attend.

Tonight there will be another event designed to bring greater awareness to lung cancer, and this one will be huge. Organized by my (amazing) friend Christine Dwyer, a mutual friend of ours, Lynne Eldridge, has written a moving article about the event for About.com Lung Cancer. I asked Lynne for permission to repost the article here, which she graciously granted:

Niagra Falls: ready to be lit up for lung cancer!

“The Falls Will Be White for Lung Cancer Awareness 2012

Thanks to one solitary person with tsunami-like vision, Lung Cancer Awareness Month 2012 will again be celebrated by a lighting of the falls.
On November 16, 2012, Niagara Falls will be lit up in white for lung cancer. Not once, but twice.

Last year I shared the story of how this came to be. A story that transcends the event, transcends the waterfall, and transcends even lung cancer awareness month. The story about how a single person who wants to make a difference, and doesn’t say “I can’t,” can help each of us who hears it begin to say “I can.” I know I felt that way after hearing Christine Dwyers story. You can read it here:

The Birth of “Illuminate the Falls for Lung Cancer Awareness”
This year, on November 16, 2012 from 8:00 to 8:15 and again from 9:00 to 9:15 Eastern Standard Time the falls will be illuminated in honor of Lung Cancer Awareness Month.

If you get a chance to attend the event, dress warmly. You can watch the display from Niagara Falls State Park, NY, or from Niagara State Park, Ontario, Canada.

But the really cool thing is that anyone, anywhere in the world can take part in this event via live webcam.

Links for the live feed:

American Falls Live Webcam

Niagara Falls Webcam

Falls View Cam

Last year, despite the cold chill of November, Christine described the event as almost spiritual. As I remember her excitement, the thought keeps coming to my mind; what would happen if each of us lived the quote that Christine shared last year? “If you don’t like something, do something to change it.”

Christine has lived up to that quote. The event last year was driven by her realization about lung cancer – that it affects far too many people; people from every walk of life. Having lost her step grandfather, step dad, and best friend from the disease, she founded “Make Some Noise for Lung Cancer Awareness.” Most recently, and after arranging for Niagara Falls to be lit again for lung cancer this year, her dear mother has also been diagnosed with stage 4 cancer. As she stands in the cold — but with a warm heart – watching the falls lit up this Friday, please hold her in your virtual arms.”

So, hats off to everyone who turns passion into action. Christine, who thinks not just big but loud, also hosts a site called Make Some Noise for Lung Cancer. I like her style!

Lorraine, it was so good to see you again. Lynne, thanks for lending me your words! And Jemesii, happy birthday!!!

Comic relief

My beautiful daughter JemesiiSunday, November 11th,  was Veteran’s Day but also my ‘lucky day’, as 11/11, eleven eleven or (my preferred presentation!) 11:11 are signifiers of good luck, a superstition I have observed since childhood. By happenstance, Bill Cosby was performing at The Music Hall in Portsmouth on 11/11. Jemesii is a big fan, and I asked her if she’d like to go see him in celebration of her birthday (she will be 28 years old on Friday!). The two of us shared a delicious meal at the Black Truffle Bistro before the show. And then we settled in for almost two straight hours of good old fashioned entertainment.

I tell you what, Mr. Cosby is still in fine form, and played the audience to great effect. Jemesii and I got a workout laughing (really, see the link) as well as the resultant endorphin high. A night out with my daughter, excellent food, and a whole bunch of chuckles. The best sort of medicine for body and soul.

Word salad

‘The practice of stringing together words that have no apparent connection to one another–an extreme form of incomprehensible speech.’ (about.com)

Road salad

Alice (Dr. Shaw) called me at 4:15 yesterday after consulting the urine culture from Sunday’s visit to urgent care; the only antibiotics to which the infection was not resistant were ones to which I had an allergy. With no other option aside from IV antibiotics, we decided that I would try a cephlasporin. The last time I took an antibiotic in that class was over twenty years ago and my cheeks had immediately taken on the appearance of having been slapped; I have avoided cephlasporins since. As this had been a relatively minor reaction, we decided they were now my best option. The pharmacy is a twenty minute drive from our home and snow and sleet had been forecast. Having  been awake for almost 60 hours now, I was eager to get this errand out of the way.

I got to the pharmacy shortly before 5 pm. They had not received my prescription yet; I called and left a message for Alice. After 25 minutes the fax with the scrip came in, but they didn’t have any of that particular drug in stock. If I didn’t want to wait until tomorrow afternoon (not an option) they could see if it was in stock at their other pharmacies. After placing a handful of calls, they found a pharmacy in Manchester that had 10 out of the 14 pills I would need.

I have a GPS system but it wasn’t in the car. The liquid crystal screen is sensitive to freezing temperatures, and I had brought it inside several days earlier. I set off with some handwritten directions, but I quickly realized I didn’t actually know how to get to the starting point, 93 north. Having pulled onto highway 293, I pulled off at a familiar exit and stopped at an urgent care facility for directions to Elliot hospital, which was adjacent to the pharmacy. And then I stopped at Elliot hospital and asked the receptionist how to get to the pharmacy (connect the dots…). I got to the pharmacy by 6:30, but even with my additional stops I was somehow faster than the fax machine, so I called Peter and told him he would need to make his own dinner. A little before seven, drug in hand, I was on the road home.

Or so I thought. Nothing looked familiar, and with a sinking feeling, I realized I had no idea where the hell I was. Taking an exit off the highway, I pulled into the parking lot of a grocery store and sat there and cried. Not knowing what else to do, I approached the customer service window, bawling like a little kid. I explained that I hadn’t slept in days, and that I was lost. I just wanted to go home. The very compassionate young woman took a lot of time to write out directions for me. No street names, just things like ‘and then you turn left at the green sign and go to the toll road.’ What toll road, I asked? The toll road. It was like an incomprehensible story problem and I simply wasn’t up to the task of deciphering it.

After asking her if I was in fact north of where I wanted to be, I thanked her for her trouble and did the only thing that made sense to my increasingly panicked and addled mind. I took 93 south. By the time I recognized where I was, I had a choice of heading south to Boston or east to Portsmouth. Having once again overshot my destination, I was far from home. Now crying with abandon and frankly scared out of my wits, I drove east, took the first exit, and turned around again.

I eventually found the exit I needed. As I drove the last twenty minutes down what should have been a familiar road, I struggled to recognize my surroundings. I also began to wonder if this was real or if in fact it was a nightmare. I had been gone for over three hours when at last I pulled into our driveway. Peter greeted me at the door, wondering if I was okay. I hugged him to me and told him that I was having a hard time putting my thoughts together. And that if I became more confused or unresponsive, he would need to call 911.

Obviously, I had no business driving, and we need to get a plan B in place pronto. What that means, I’m not yet certain, but I am fast approaching a place where managing on my own is sometimes not only impractical, it’s impossible.

Alice called to check on me at 9 pm. I had taken the antibiotic without incident and by 10 pm, something wonderful happened. I fell asleep.

Crazy making times

I’ve been awake for 58 straight hours–a bizarre but oh too familiar reaction to an antibiotic. On Sunday I came down with my third urinary tract infection since September, a frustrating situation that evidently is not a reflection of the state of my immune system (I look great on paper) but rather just a garden variety problem that has gotten a little out of control. With each of the recent UTI’s I’ve been put on a course of macrobid, the first two times without incident. However, just as I have in the past with levaquin, on Monday night I developed insomnia. As luck would have it, David left on a business trip early Tuesday morning. Not yet certain the insomnia was related to the antibiotic, I took two doses of macrobid yesterday. I also let the dog out for a pee and forgot about him. Fortunately, when I did remember that I had a dog, he was sitting by the door.

Yesterday was election day and parent teacher conferences at Peter’s school, so I headed off to the polls with the hope that I would remember to vote for the right candidate (I did). I got through the conferences, only to drive home in the dark without my headlights. Lordy.

Well, I didn’t sleep last night either. Sometime around 4 am I sent an email off to Dr. Shaw. I think I used the word concerned at least four times. This morning I got a little emotional thinking about how I was going to safely drive Peter to school, but I managed. Back home, I lay down hoping that I would just drift off, but the part of my brain that regulates sleep seems to be broken.

So, that’s that. Unfortunately, I am allergic to or intolerant of a number of antibiotics and one more just got crossed off my list. It’s concerning.

On Monday, before sleep or the lack thereof became the focus of my universe, I had a scan review with Dr. Shaw. I’ll cut to the chase: stability was a one off. I am back on track, as it were, with slow and steady progression. However, there is a silver lining to this cloud. I can stay on trial for six more weeks.

So that’s the scoop. I’m off to the pharmacy to pick up another antibiotic. And then I’m going to feed Pete, pop an ativan, and pray for sleep.