Cancer Schmancer

If ever there was a word that elicits the darkest of emotions and downright mortal fear in people, it would have to be "cancer".  From it's seemingly innocuous and humble Latin meaning of "crab", the word now packs far more evil and morbid connotations. 

Cancer a: a malignant tumor of potentially unlimited growth that expands locally by invasion and systemically by metastasis b: an abnormal bodily state marked by such tumors; something evil or malignant that spreads destructively (Merriam-Webster Online Dictionary) 

 It's sort of like the word "bomb".  Who could forget Ben Stiller in the film Meet The Parents where his character has an altercation with the flight attendant after daring to utter the word "bomb" whilst aboard an aircraft.  "It's just a word ! Bomb, B-bomb, bomb, bomb !!!!

This past week has seen me making the rounds of family and friends to inform them of this latest turn of events.  To be honest, having to do this is what instills dread in me.  For most people hearing the word "cancer" is completely devastating and utterly shocking under any circumstances.  

I find myself strategizing about how I think each person will react, thus tailoring my delivery to try and ease the blow.  But really, everybody reacts differently and ultimately no one really knows what to say.  I mean,  what do you say ????

Well you know what folks ?  The fact that you don't know what to say is a-okay with me, because I'm not really looking for a response - I just want to let you know this bit of information because you're an important person in my life.  I don't really want to sit and talk about my entire medical file nor do you want to listen to the boring details of my cancer.  What you and I both really want to do is move on and talk about something far more interesting like Danielle's latest exploits on The Real Housewives of New Jersey or the latest developments in your love-life, or those new shoes I just bought, or when we are going out for dinner next.  

Like the b-word was to Ben Stiller's frustrated character, the word cancer is just another word to me.  It's use does not crush my spirit nor does it fill me with blackness.  In fact, I  think it just spurs me to keep living an otherwise wonderful life and focus on what is truly important.

So folks.  It's just a word.  I'm dealing with it, and if I'm not I'll let you know.   

Cancer Schmancer !  

Further readings:

• Talking with Friends and Relatives About Your Cancer American Cancer Society
  

Do You Feel Lucky ?

I heard from another friend today who has someone within his circle who has just been diagnosed with a form of lymphoma.  The person in question is a single, 38 year old interior designer who was recently laid off from her job.  So you know where I'm going with this right ?  Yep, you got it - no health insurance !  This is a topic that's never far from my mind but this story really got to me.

Imagine, if you will, what it is like to hear the words "you have cancer".  Before you have even had time to process that horrible thought, try piling on "and you need these treatments in order to save your life, and how do you intend to pay for them if you don't have health insurance ?".  My head simply spins when I think about this and I can't really fathom the horror of this poor woman's situation. 

I am one of the "lucky" ones who has excellent and affordable health insurance through my husband's employer so I only have to deal with the "you have cancer" bit of the nightmare.  But that's the point.  Yes I am lucky to have the health insurance but WHAT IF ?  What if he lost his job and couldn't find another one by the time COBRA insurance ran out ?  What if he decided to divorce me ?  What if something catastrophic were to happen to him ?  What if I were unable to find a job carrying health benefits ? 

What if , what if , what if ..............

The reality is, if I were to find myself without employer-sponsored health insurance, I would need to try my luck at buying insurance on the open market.  That's about the time that you get hit with the next whammy.  As the "lucky" one living with cancer, you are automatically deemed to have a pre-existing condition by the insurers so in order to protect their downside risk you will be faced with having to pay an enormous monthly premium in order to maintain your policy.  That's if you are "lucky" enough to live in a State that mandates your right to buy health insurance despite a pre-existing condition.  (Click here for further information on obtaining health insurance in your State).

Now I'm no professional commentator on health care reform in the U.S., but as an ongoing consumer of health care in this country, something just doesn't feel right.  Health care   shouldn't be sold as a luxury commodity nor should access to it be something that's determined by your station in life.  

So to all of you who feel "lucky".  Remember this.  You might only be one "what-if" away from being in the same horrible predicament that my friend's friend currently finds herself in. Health care is a necessity and no-one should fall through the cracks just because of an unlucky what-if.

Further reading:

• The Economic Case for Health Care Reform White House Council of Economic Advisers
• Should Health Insurance be Mandatory ? Room for Debate Blog, New York Times

Jeanne Sather on "Cancerversaries"

Words fail me at this point.  I don't think it gets much tackier or infuriatingly stupid than this little snippet as reported by Jeanne Sather on her excellent blog "The Assertive Cancer Patient"

Is this cancer culture ????

[Please click on Title to link directly to Jeanne's post]

Breast Cancer Is a Chronic Disease ? I Don't Think Breast Cancer Got The Memo!

Everybody has cancer.  Or so it seems.  I have it.  My good friend has it.  Another good friend had it but she's dead now.  Another good friend's friend had it and she died last Sunday.  What's wrong with this picture ?  

My scans this week confirmed that my cancer has returned for a third time.  Luckily, the cancer is localized to a couple of lymph nodes in my neck and the rest of my body remains clear so I am breathing again for the first time in a week.  My Doctor was very upbeat in giving me the results and I appreciated her tone.  And then I heard her say "we can treat it like a chronic disease", which I guess implies that the disease can be managed much like diabetes, hypertension, etc.  Now this is not the first time I have heard this line.  This seems to be the phrase du jour for those of us dealing with recurrent and active cancer.

I'm just not buying it and nor does it seem is the Breast Cancer Action ("BCA") advocacy group.  Barbara Brenner recently wrote an excellent article on this very topic in The Source, the BCA's newsletter, entitled Treating breast cancer as a recurrent - not chronic - disease.  The article discusses the use of certain words and terms  by the so-called cancer industry  and raises the concern that the seriousness of this illness is being  downplayed, to the detriment of true breast cancer prevention.  This is despite the fact that millions of women are still being diagnosed with a disease that has no cure, and who then have to endure horrendously invasive and debilitating treatment options that offer no guarantee of successful outcome.  

The bottom line is this.  Having something in you that wants to kill you (no matter what you do) is scary.  Living with the kind of uncertainty every day that turns a head-ache into a brain tumor, or an arthritic hip pain into a bone cancer, or a cough into a lung cancer (you get the idea) really puts a dampener on things.  Believe me, I am taking every piece of insurance that is being offered to me with respect to treatment but I am under no illusions as to what my likelihood is that I will ever be rid of this thing.  I don't believe that what I have is a chronic illness. It's way scarier than that.

What Am I ?

In an earlier post, I mentioned the issue of identity within the cancer culture, something which seems particularly significant within the so-called breast cancer community.  Since my original diagnosis I have struggled to maintain and shape my identity within the breast-cancer realm.  On the one hand, I feel angry that I have to some extent lost the identity of the person I was before diagnosis but on the other hand I continue to struggle to determine my identity now. Mostly, I just feel like an ordinary normal person dealing with extraordinary circumstances the best way I know how. But the cancer culture that I inhabit seems to want to constantly label and identify me in a way that just doesn't seem to fit me as an individual.  

The breast cancer community has  adopted it's own vernacular, for which the usage of certain words appear to seek to make the disease more palatable  and marketable as a cause to the rest of the world.  Pink has also become the color of choice to symbolize the cause and underpin the (mostly) feminine nature of the disease.  Too bad if you're a man with breast cancer I guess.   At this point,  I don't really wish to engage in a debate on the for's and against of the apparent commercialization of the breast-cancer cause,  except to say that there are certainly aspects which I find quite disturbing as an unwilling bystander in the circus of Pink. (Further reading on this particular subject is listed below).

The well-known activist author, Barbara Ehrenreich, wrote an extremely enlightened and honest article for Harper's Magazine in 2001, entitled "Welcome to Cancerland".  In this article, she points out that there is no single noun to describe a woman with breast cancer.  She is either a patient, a victim, or a survivor.  She also never suffers, struggles or endures but instead bravely battles or  fights with the disease and then emerges a victorious soldier worthy of donning the esteemed mantle of survivor to proudly display to the world at a dizzying array of pink-colored events.  Other cursed women become sisters, part of a larger sisterhood who are inherently expected to provide unending support and impart wisdom and hope to the latest additions to the sisterhood.  As Ms Ehrenreich points out: 

"it is the survivors who merit constant honor and acclaim.  They, after all, offer living proof that expensive and painful treatments may in some cases actually work."

Well what about the rest of us ?  Those of us who live with cancer everyday because current treatment protocols simply aren't curative. Where do we fit into all the pink hoopla and pageantry ?  If we are not survivors then what are we ?  Are we  failures, disappointments, inadequate letdowns, useless , etc ?  

I don't really have an answer to this question but I do know that I just don't identify with the pink ra-ra chanting sisterhood of survivors which the rest of the world seems to want so desperately for me to be a part of.  It's not okay that I have cancer.   Having this thing in me doesn't make me a hero and I don't wish to be cast as an inspiration to anyone.  And most of all,  it certainly isn't cool or glamorous in any way shape or form and I don't wish to adorn myself, my house, my neighborhood, or my office in tacky, sappy, syrupy pink merchandise.   It sucks and I'm angry and pissed off about it but this doesn't mean that I need to find solace in the arms of a well meaning support group or counsellor.  I just want to get on with it and I don't want to do it wearing a pink t-shirt emblazoned with the word "Survivor".  

Further reading:

• Q & A with Samatha King, author of Pink Ribbons, Inc.
  
• Hall, Lisa. and Donovan, Brian. "Popular Culture Representations of Breast Cancer and their Impact on Women of Different Ages"
  

How Did I Get Here ?

So here I sit the day after the important Doctor's appointment.  I was right.  The cancer has returned.  The extent to which it has returned will be determined by a plethora of bodily scans, tests and examinations which I will  undertake early next week.  Ah the joys of having one's body pumped full of a substance so radioactive that it arrives with your nurse in a locked thick metal box about the size of a workman's lunchbox and you are advised not to be around small children following the scans for at least 24-hours.  Sorry kids, you can't go to Aunty's tonight because she is radioactive. Seriously !

But I digress.  I should at this point clarify how I got here.   

In 2004, after finding something weird in my breast (not a lump but a certain undefined hardness in the breast tissue), I dutifully went off to see my Nurse Practitioner who promptly said she couldn't feel anything, implying that what I was feeling was imaginary.  Despite my protestations that I wasn't imagining it I was authoritatively told that with no family history of breast cancer, no apparent risk factors and my relatively young age there was no way I could possibly have breast cancer.  

To make me feel better she deigned to indulge me by prescribing a sonogram which once again showed nothing.  To be honest I don't even remember mammogram being discussed.  I was sent away with the advice that perhaps I could come back in 6-months for a checkup and in the meantime would I like to try breast massage ?  Oh My God:  here I was hoping for scientific explanations from someone still living in the Age of Aquarius.  

Now I can't tell you exactly what drove me except that I knew I needed some definitive answers and I wasn't getting them from Nurse Flower Child.  I took it upon myself to go and get a second opinion.  I found a lovely husband and wife general medical practice who immediately sensed my concern (despite their not being able to feel anything either) and sent me for a mammogram.  This is despite mammogram not being recommended for women under-40, with no risk factors and especially those with small dense breasts (yes that would be me).  

As a result of the mammogram and later biopsy in April 2004, at the ripe old age of 34-years old, I was diagnosed with Stage IIIA invasive ductal carcinoma with lobular features, hormone receptor +, HER 2 Neu and BRCA1 positive status.  This is a very long-winded way of saying you have a type of Breast Cancer which is caused by bad genetics, is fed by your body's oestrogen,  and has spread to your lymph nodes.  Not good news. 

It was a rough diagnosis to hear and the treatment that followed was even rougher.  Won't bore you with the details but think highly toxic chemotherapy, radiation, umpteen surgeries and continuing anti-hormonal treatments.  Anyway the moral of this part of my story is that you really have to be your own advocate and push for explanations.  Listen to what your body and mind is telling you and exhaust all avenues of medical practice.  Don't ignore your sixth sense and certainly don't listen to Nurse Flower Child.  Just push and push and push until you get the facts from which you can make your health care decisions in consultation.  

In June 2007, the cancer found it's way back into the lymph nodes around my collarbone. Once again,  I found it and brought it to my Doctor's attention.  Don't know why I was drawn to this particular area of my body but I had developed a fidgety habit of brushing this area with my hand whenever I sat at a desk and of course one day I felt something. Weird I know and although I'm most certainly a religious skeptic I can't help but wonder if there is a higher power at work or whether I am blessed with an exaggerated sense of  intuition.  In any case, I can't overestimate the value of being constantly aware and vigilant when it comes to your body. A bit of surgery and radiation followed along with a new anti-hormonal treatment which bought relative peace for the last two years.

And so here I am in June 2009 about to enter the ring for the third time.  I feel like I should be more upset than I am.  But at this point I feel like an old hand at this stuff.  I seem unable to be surprised by anything these days and to be honest I have lived with this cancer crap for so long now that this new round is not really a stretch for me emotionally.  Of course it will be for everyone around me, but not for me.  I will just keep doing what I do and continue to seek out the best treatment options but most importantly I will just keep living my life the best way I know how.  Cancer or no cancer.  It doesn't matter.  Life is there to be participated in, not viewed from the sidelines.  The cancer will have to fit into my life.  I hope to talk more about how that happens in later postings.

The First Post......

I am writing this first post on the eve of an important Doctor's appointment.  By tomorrow morning at around 10.30am I expect to hear those three little words, "You have cancer", for the third time in five years.  

I have discovered a new lumpy thing in my neck - around the site of my second occurrence (more on that later).   At this point, I don't think it's a swollen gland, torn ligament, pimple, boil, benign cyst or anything else that has been posited as a much more palatable reason for this lumpy thing in my neck.  Nope, fifty bucks says the news is going to be bad.  

And so once again,  I find myself thinking about making the transition from "Survivor" to "Patient" and all of the stuff that comes along with this identity shift.   As an unwilling inhabitant of that alternative universe,  aka the "Cancer Culture" for the last five years,  I have decided it's time to start documenting my "journey" (hate that term) and provide some type of commentary on what really goes on in this strange reality that I inhabit.  

At the very least, this blog is therapy for me to share and talk about what I want in an unemotional context and, at best,  it may provide some kind of insight as to what it is to live with cancer in today's society.  At worst, it may just become a forum for me to vent my frustrations and and anger at life, the universe and all that jazz.   But in the end, the tone of this blog will be my prerogative as author and participant so please just bear with me.