Cancer Care Family & DiseaseOctober 15, 2013

VCW Reunion

By James Salwitz, MD

After the Second World War, there was a massive expansion of veteran’s groups in this Country.  The American Legion, Order of the Purple Heart, Pearl Harbor Survivor’s Association and, of course, the Veterans of Foreign Wars (VFW), flourished as millions returned from the battlefield. These men and women shared an intense, often terrible experience and came together in solidarity.  Today, I attended a gathering of a similar group, the survivors of another war.  It may have been a fundraiser for the American Cancer Society (ACS), but the men and women there were clearly VCW; Veterans of Cancer Wars.

The survivors of military conflicts, be it the Civil War, the World Wars, Vietnam or the Gulf, were drawn to veteran’s groups because of a need for support and companionship from those who understand because of mutual experience. These organizations are part of healing, part of the process of re-entering “civil” society and these organizations are invaluable.

However, we would be remiss if we fail to note that these groups give as much as they take and make significant contributions to society. Through community service, teaching, organization and because of the maturity of their members, they have transformed post-war eras and are invaluable to the fabric of nations. In addition, critically, veteran groups tell us in words or actions that war is horror and perhaps their loudest message is, “no more.”

It occurs to me that VCW, Veterans of Cancer Wars, gain similar support from cancer communities.  Groups such as the ACS, The Cancer Support Community, CancerCare and Cancer Sucks!, provide a place of safety and support for survivors of the dread disease as they try to re-enter “civil” society, find themselves again, and cope with an unknown future.  These are powerful healing organizations.

In addition, VCWs and their members give back a tremendous amount and, like military survivor groups, transform their communities. They force a focus on research and quality care, constantly driving toward a cure. They remind us of the suffering of our neighbors and of the need to practice mercy.  They sit on the boards of countless companies and philanthropies and push nations to be more compassionate in tune with those less fortunate and those who suffer.  They make every city, state and country more balanced and humane.

On this fall day, as leaves crunch dry under feet, a cool breeze chills the neck and we rush through the irreplaceable hours, focused on the next meeting, the next goal, the next day, VCWs give their greatest gift. They remind us that life is miraculous and precious. By their passion for living, they warn us that our existence is infinitely frail.  Their struggle, laughter and tears teach us that tomorrow is a myth. Today, with all its flaws, is still beautiful, and is all we have.  We must hold onto this moment, we must treasure this dawn and we must love always.  It is wisdom that cancer survivors have learned through great sacrifice, and we must be thankful they bless us with that knowledge and not squander their suffering by neglecting the wonder of now.

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10 Comments

  • Liz
    I appreciate the intent of this blog entry... I am one of those people who absolutely hates the analogy to war that seems to be part and parcel of discussions of cancer. In my opinion it is NOT a war and I am not a survivor of a war. And I will not wear that I have cancer on my sleeve (eg ribbons, cancer t-shirts, etc.). Cancer is what I have and not who I am. Cancer just "is". I have a disease (well a bunch of them) that are/were being treated - sometimes with greater, and sometimes with less, success. Wars are started with deliberate and evil intent (although those who start them feel justified in doing this as they believe they are right LOL). Cancer is just cancer. No nefarious plot, no evil dictator... chose to give me cancer (well perhaps excepting the corporations who dumped cancer causing stuff into the environment but then their motive was not to give me cancer, rather it was a profit motive combined with low ethical/moral behavior) I just got cancer in the random crap shoot of bad things happening to people. I do not go to battle when I go to treatment. I drag my sorry self in there, reluctantly, because the rooms are too cold, there is nothing much to do (and with all the drugs in my system reading a book is not possible for very long), the TV is stuck on some inane program that all of us in the room are forced to watch, I don't want to feel like crap for a bunch of days afterwards... I become bone weary of the daily slog of living with cancer. There is a burden put on cancer patients that we are expected to learn something and be grateful for having had cancer that is not there for most other diseases; that we are now supposed to spend our life doing good due to having cancer, support "our disease" with ribbons, shirts, marches, celebrations... We are expected somehow to believe that the "reward" of having this disease is to now be living higher on the noble, good person, appreciate life plain. I see nothing redeeming in having cancer. No lessons learned, no sudden flashes of insight... nothing that makes it worth having this disease. Maybe to others from the outside looking it it looks like we have this hard gained wisdom that you have to keep moving forward even if life sucks and be more noble in what we do... I'd trade places with someone else in an instant - you can hunt for redeeming reasons to have had crap land in your life instead of me. I'd be just as happy not to have lived though this. But you better bring an electron microscope and be able to rationalize even the meaningless because when you peel away the onion you might find very little there. Do we put this burden of being expected to have learned something good and find meaning in bad stuff/appreciate life more on people who have other tragedies happen to them? Do we, in effect, say to them "oh well cancer (or X tragedy) isn't as bad because you have been given the gift of appreciating life" thus making it socially unacceptable to rail against how life is unfair and cancer sucks? Not that I have noticed. Maybe in order to live through this with our sanity in tact some need to hunt for meaning in that which is inherently meaningless crap dumped into our lives... I am not one of those people. I keep my sanity by taking one day at a time - not because that is due to any great flash of insight, but because if I didn't I would become so discouraged I'd quit. There are plenty of other tragedies that happen to people that this is their coping mechanism of choice as well. Cancer does not have a monopoly on this approach. And again, cancer is not who I am it is what I have. Who I am is what I do. THAT didn't change just because I got cancer (well there are some things I can no longer do, but fundamentally I am still the same person, just dealing with more bad stuff). Incidentally there are other ways, far less painful ways, to learn to appreciate each day for what it brings... I appreciate nothing from this journey (well other than I have managed to live though it so far). This journey has turned my life upside down and I see no redeeming merit in this. If it serves to encourage others, so be it, but that is independent of who I am. Personally I'd rather not be an object lesson on how to keep going, how to keep doing what I have always done (good or bad, noble and admirable or not), be who I am and was before cancer hit. In the end most people figure out how to cope. Most cancer patients do not commit suicide in despair (although they may have some really spectacular pity parties LOL). Neither do most other people who live through tragedy. You eventually pick up yourself up when your life shatters and keep living. People don't need to have had cancer to learn compassion or to be caring and supportive of others; to see the beauty in the moment... I would suspect that the vast majority of the people you speak of were this way prior to having cancer. We notice what they do because there is an expectation that having had cancer leaves a brand on your forehead and so you will dedicate your life to X, Y or Z cause of good stuff. Most people (whether or not they have had cancer) help with something because they feel a connection to the cause. Having had cancer just adds one more cause for people prone to helping to get involved in. Heck the entire outdoor adventure personal growth industry (used to work in that) thinks they have a monopoly on teach people how to "learn to appreciate the beauty in the moment". We could put an entire industry out of business. Just give all their clients cancer. Then they will be enlightened, get great wisdom...no need for outdoor adventure activity programs . Glad that it keeps you going (and teaches you some lessons about appreciating each day) to see some of your cancer patients continuing to live their life, with their values in tact, who have managed to survive the emotional earthquake of having this disease such that they can go back to doing what they value and enjoy. I think in life where and how we learn these kinds of lessons is individual. You work all day with cancer patients so you learn these lessons from them. I learned this in another context. There are some good people out there. Some of them get cancer. Cancer presents obstacles in continuing to do what we have always done, continuing to do things that we value... but fundamentally we are still who we were before cancer. I'd suspect many of these people you admire were doing these things prior to cancer.
    Reply
    • D Someya Reed
      Your sentiments are nearly identical to those my wife expressed about herself and her own cancer. Had she lived, she dreaded the thought of being known as a "survivor." As you stated, cancer doesn't change who you were before or who you are now. It's an obstacle in life much the same as the devastation of a fire, flood or earthquake. Yet we put all of these things on t-shirts ("I survived Loma Prieta 1989," "I survived my house burning down," "I survived breast cancer") sometimes for profit and sometimes for donation. Support groups for those things we choose to do (but not always for good reasons) such as war are worthy and necessary to some people. Support groups that have to convince you that you've become an outsider to normal society (because of a disease?) and offer you a plan to re-introduce yourself back into society are not appropriate in my opinion. This latter type is likely in it for profit only. In cancer care, we need to move away from the profit-induced model that says "there is no compelling evidence" or "there is no direct link" (etc., etc., etc.) between a carcinogen/virus and cancer when all that is really being done is playing word games with "causation" and "correlation" to continue a profitable enterprise. Then when irrefutably true (or nearly so) evidence is found, decades or even a century later, it is claimed that which we already knew was "discovered" or "re-discovered." We need to stop using "anecdotal" like it's a bad word in the expression, "anecdotal evidence" when it simply means an actual instance of something that actually occurred. We need to stop saying things are "impossible" when we really mean we don't have a (profitable) test for it yet. We need to have one support group: to cure cancer and be able to control it till we get there. The world, unfortunately, is not short of other sources of human suffering upon which to make a profit.
      Reply
      • Liz
        Support groups can be very useful, especially in the midst of trying to learn about what you have, how to deal with it, learning that the emotional devastation is normal and will, eventually get to be less of a central focus, just the way grief tapers off with the periods of pain, while intense, are shorter and further apart as time marches on... They are also a place where you can complain and people understand, get useful information, emotional support... Of course for them to be successful they need people who have "been there done that have the t-shirt", not just people in the midst of the crisis. That takes people willing to give back after they have gotten a grip on their own mess with this. And of course some people cope by searching for meaning for crap dumped in their life. If that works for them, no problem. Just don't expect me to be grateful for having to go through this and have learned anything (well perhaps I have learned how not to piss off doctors so much when I don't feel grateful, when I am angry about having this... LOL... since so many of them can't seem, for whatever reason, handle patient emotion... )
        Reply
  • Bridget Ryan
    I am in your corner. Having two bout of cancer has not yielded anything golden, pink, magical or particularly insightful. I like some of the folks who have helped me and some not so much --- pretty similar to my work, my family, my community. But I appreciate that each person's experience is that person's experience. Metaphors that work for one, in terms of framing and expressing the experience, will not be helpful or useful to another. So, while I am not a fan of either 'war' or 'survivor' as expressions of an all-too common disease experience, I do see that both have meaning for many. Heck, I won't even let the medical oncologist use the word 'cure' because there is no way to verify that outcome! Language is rich. Let's keep broadening the expressions to include as many viewpoints and experiences as possible.
    Reply
  • Kathleen Denny
    Liz and Bridget: To me you are a breath of fresh air. I hate the war metaphor, along with brave, soldier, battle and all the rest of them. As well as the whole notion that a positive attitude will triumph. So my cousin, neighbor and mother-in-law are dead because they weren't brave? Because they didn't try hard enough? I am 40 years out from my diagnosis (I was pretty young) and also chose not to make "cancer survivor" central to my identity, even though I fundamentally changed the direction of my life. I am considered a cure, but suffer from consequences of radical treatment every day and night. Last October I attended my very first weekend of survivor workshops, and a certain level of desperate celebration of battle was promoted, which I found exhausting. On the other hand, that conference is where I learned that many of my conditions and my symptoms are entirely well-known results of treatment, and the extent was eye-opening. I had no idea that that so many survivors of head and neck radiation will lose their teeth. That knowledge has helped me fight to get some help and relief from my HMO and from our dental insurer. But it also means that my HMO docs (and I know it's a broader problem...) who were aware of my history, had been ignorant of the consequences, or chose to ignore them, until I came in with my pile of research and specific requests. The constant vigilance required to live with some degree of quality is also exhausting.
    Reply
  • Mary
    I won't wear pink now. Everybody told me to fight. To begin with, not everybody fights the same way. To Kathleen somebody told me that many head radiation patients feel like glass magnifies the sun's rays and is cooking your head-translation care rides were agony. I have a rare incurable cancer-@ what 4 oncologists said was the worst possible place. I really don't have much in common to talk about. I know that people mean to be kind, but they give me advice that gets tiresome-some want to know more about it-if they press-they think that I'm crazy or they want to throw up. I get these phone calls for Breast Cancer-I keep telling them to remove my number. some start in that I'm cruel. I curse them and hang up. At least there are treatments for breast cancer-not that all treatments are successful.
    Reply
  • Kathleen Denny
    I hear you, Mary. Thanks for being here. It's very hard to respond to inappropriate but well-meaning advice. Especially when the person is cheerily optimistic of the outcome, if you would only do it right. Whatever It might be. Or Right.
    Reply
  • Liz
    Since I sort of partly hijacked this blog post... I do want to add that living in the moment, seeing the beauty in the ordinary (some of the main points)... are valuable lessons to learn/ways to look at life, no matter from whom or in what circumstances we learn them...
    Reply
    • Kathleen Denny
      Those are valuable lessons. My life really has been better in many ways for having been forced to learn them at 21, though in an odd way that keeps confronting me. So many mid-life crises around me come from suddenly realizing that life is not infinite, or that one is aging, despite efforts to deny it. To the latter, I often wonder whether it would be bad form to say, "Can't relate. I never thought I would get this far. Aging is a privilege."
      Reply
  • jill
    What some people trivialize...or venture to compare...I have veteran relatives..maybe one of ten or eleven actually was in a hand to hand combat situation...officers..plane/jet mechanic, paymaster/medic etc. I recently saw a video of an officer in the middle east...severely injured during a skirmish..his trials etc..his close relationship to his gun and his doctors expression of near contempt for his saving and patching him up to go back to active duty. I could see the deterioration of him mentally and physically. There are similar feelings and experiences..PTSD issues for cancer and war veterans. I always wanted to be praised for my achievements not for getting and fighting a disease..but I have found more honor demonstrated from individuals fighting for their lives than for careers.
    Reply

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