Friday, November 18, 2011

heads buried in sand

Since becoming the Octomom to a litter of unplanned tumors in my spine over this last year, my mind continues to bring me back to the writing of one of my previous Live Journal friends, Karen, who died of the same disease. She is in part the inspiration for this blog, because she took the courageous step of writing about her progress and what she suffered up until the very end, at which point her partner took on the responsibility of describing her final moments.

Karen Anne Heinzeroth
September 25, 1973 - June 11, 2006

Karen left a journal to the world that told the TRUTH about every detail of dying, so that other people like herself could actually prepare mentally and physically and know what to expect. Although she was most definitely terminal, she suffered worse I think by all the people who tried to push denial upon her, and urge her to believe in that chance of miraculously living a bit longer. This to me is emblamatic of this society. Why not look death in the face and accept it for what it is--a natural part of life? Why not allow people to peacefully prepare for death, fulfill their last wishes, put their affairs in order, say their goodbyes in a dignified manner? Why do we push people to poison themselves to maximum degree with chemo and "fight" beyond a point in which fighting will make a difference?

This is an excerpt from Karen's journal, not long before she passed away:

"I'm not sure what it is about today that seemed to dawn differently, but something about the air and light coming into my room this morning seemed to be more pure than normal, and it is days like today that really bring my failing health into stark focus just by nature of contrast. Here I am, enjoying this beautiful, unsullied morning, and yet my body is rotting out from under me like an unembalmed corpse. All of this beauty in the world, all of the promise that this days holds...and I have the privilege of viewing it with decaying eyes. Irony is so very fascinating sometimes.

Another day. I get so tired of living this way sometimes. So, so very tired of it. Every day is a battle with pain. Every day is a battle with breathing. And every day is a battle trying to make other people understand this. I know that I wrote lately about the physical side of dying of cancer, but today...today I need to vent about the other side of it, and that's the social side. It's sad to say, but after nearly four years of trying to talk to people and explain to them what's g
oing to happen to me it seems as if I've gotten nowhere. Just...nowhere with anybody."

Read the rest of Karen's entry "Social Truths and Conequences" at:
http://kamigirl25.livejournal.com/209516.html

How true those words are. I've dealt with it for years also. If you look healthy enough on the outside in other people's eyes, they never take you very seriously about the danger of the disease. People spout off miracle treatments and vitamins you need to take, and they turn away and bury their heads in the sand if you speak about death because that is "negative." There is always this pending guilt of possibly creating a self-fulfilling prophecy if you aren't positive minded enough. Cancer patients are often put into the unique situation of feeling somehow responsible for their state.

Karen seemed negative to some people, but what a blessing she left in her journals in telling the truth of what different physical ailments felt like, what medications gave any relief at all. I think she even picked out her own casket. This was an amazing and often misunderstood woman, and I feel her words more than ever, even though it has been several years since she passed. I am jealous that she was able to express her anger, but happy for her. I still have anger that must be dealt with. On this matter she speaks of, I totally understand...

"Everyone, it seems, has some sort of advice on what it is I should be doing with myself during this time of "dying" (if they even have the courtesy to acknowledge that that's what's happening to me), and quite frankly I'm sick of dealing with it. I've spent the past four years making everyone else in my life "comfortable" with my disease, and every conversation I've ever had with people usually consists of me telling them the truth about my situation and then taking the time to make THEM feel better about my news. And perhaps that was my mistake. Perhaps my coddling to these people have made it so that the truth that I told them about my situation rolled right over their heads. It is obvious--OBVIOUS--at this point that I am dying. Period, end of story, just like I said all along. Yet people keep stopping up their ears and expect ME to change. They expect ME to tell them that no, that's not right. I'm not dying. And I want to take these people and just smack them furiously across the face. Denial is the most selfish thing you can do to the dying and quite frankly I've had it up to my eyebrows with other people's selfishness. I don't care that it might be difficult for you to realize now that I'm dying; you had four years of me telling you, and it's not my fucking fault if you didn't listen the first time around. Don't expect ME to bolster your delicate and sensitive feelings now, because I just don't have the goddamned energy anymore..."


My own journey with this disease has been split into three parts, and I have a separate journal for each. It's split up because I wanted to close each chapter of my cancer adventures for good and move on. So the trilogy goes as follows:

Book One: 2004 - 2007 - "Rebel Command" - 1st diagnosis and subsequent surgery, radiation and chemo (Not available to general public at this point, but that may change)

Book Two: 2008 - 2009 - "A Modern Amazon" - 2nd more serious recurrence of breast cancer

Book Three: 2011 - ? - "60 Days to LIVE" - current

Also...for non-cancer topics and all that I am passionate about, there is my Author's Blog:
"Dominique Mainon Author/Screenwriter"


Thank you everyone for your continued support and understanding.

4 comments:

  1. I just can't fathom the words to describe how wonderful you are, how much respect, admiration I have for you. How you inspire...

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  2. That's very kind of you Jessica, thank you. I need to try harder to live up to all that!

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  3. Hi Dominique. This is Blake (Karen's partner). It's been quite a while since you and I have conversed, but I've always tried to keep up (even if just tangentially) with the people who were a part of Karen's online world. I am saddened to learn of how your disease has progressed. I can't offer much in the way of comfort other than to say that I am thinking of you. It's not much, but then, sometimes, there isn't much that an be done from afar.

    I do want to tell you how much Karen thoroughly enjoyed her interactions with you. She admired your will, your bluntness, and your strength. These all seem like platitudes, I know, but they weren't to her. In a sea of people who wanted to coddle and coerce her into being someone she wasn't, you were one of the advocates who let her know it was okay to accept what was coming. That helped her. YOU helped her.

    More than that, you helped me through a difficult time as well.

    I wish there was more I could do for you now. It is meager, but I hope you will take my words to heart and at least know that you mattered to two people you never met, living thousands of miles away. And I will not forget that. Not ever.

    -Blake

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