Yearning for blood counts

Is it hard to imagine wanting to go to the doctor to have blood counts drawn somewhat painfully for your arm?  Two small, simple, innocuous events recently.  Last night my wife, Tish, and I loading and spreading mulch on the front garden.  And Saturday a trip to the gym – I started this just five weeks ago but have been off on vacation for two weeks.  After both events, I got tired and short of breath early on, and was exhausted by the end of each.  The most reasonable explanation, the most plausible is lack of conditioning.

And yet I am a cancer survivor.  My mind drifts back to that other explanation.  My leukemia is back.  My bone marrow has gone crazy again and is putting out an abundance of defective lymphocytes much to the detriment of red blood cell production.  My breathlessness and fatigue may be due to anemia related to recurrence of my leukemia.  Even though it has been 56 months since my stem cell transplant with no evidence of disease in between.

The simple resolution would be a simple blood test, a CBC.  But my next appointment is weeks away.  For almost four years I was going to the clinic every two weeks or so.  At times I stretched it to three weeks but whenever I went tried for four weeks, my body would rebel and crash with some kind of weird infection.  This past year has been better (if you don;t count the two hospital admissions for kidney stones and diverticulitis).  I have been able to go a full month, then two whole months.  My next date with the doctor will be three months since the last one.  And that is definitely a record I want to achieve.

As many of you have undoubtedly experienced, going to your oncologist becomes a lifeline of support, a security blanket that, despite all complaining, you are reluctant to give up.  A professional medical person offering scientifc evidence and judgement that, yes indeed, you are still in remission.  Your cancer is still lying low.

At five years since my last bout with cancer, myself and my doctors are starting to skirt around the word “cured”.  (My disease, t-cell prolymphocytic leukemia or t-pll, originally carried a median survival of just 7.5 months)  And yet in the still of the night that quick pain in the abdomen or the memory of being so tired earler in the day – the mind races backward into the memory of fear and the unforgetable face of cancer.

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First Signs of Cancer

Today I continue from my original journal.  It is always strange looking back, especially from a moment I never imagined I would see.  Seven years out.  A miracle.  But maybe it’s necessary for me, the author, the would-be blogger, to go back, to reconnect with that experience, that experience of shock and fear, of hope and wonderment.  And maybe it is necessary for you too…to connect, to identify, to kindle your own fears and hopes so that you can know mine, and in doing so, know more of your own.  This is the role of sharing, of empathy.  Tell me what you think.

Journal – November 2001...

Where shall I begin?  Yesterday or several months ago with subtle signs that we do not wish to entirely see.  A rather sudden onset of constipation with no change in diet or exercise patterns.  Maybe it’s an aging thing.  I mention it to my doctor during my annual physical in September.  A family history of polyps.  We decide to consider a colonoscopy to be done some time soon, but let’s wait until the new partner with the endoscopy experience joins the practice. Weeks later, bed, my wife thinks that she notices enlarged lymph nodes.  They are non-tender and I don’t connect the two symptoms.  The constipation continues.  I become a bit anxious but it is a fairly innocuous event, constipation, part of the gradual process of growing older.  Of course, I am a cancer nurse so I start speculating about colo-rectal cancer, stomach cancer, something sinister.  But we oncology nurses are always thinking that we might have cancer.  The smallest symptom suggests itself to our pysche.  It is worse when we first start working in cancer.  Later it settles down in our minds but never quite leaves, embossing itself on how we come to look at the world.  Neurotic me.  I shove these thoughts to the back of my mind.
The week before Thanksgiving is hectic.  Four of the five days are spent doing 12-hour shifts at the hospital.  I also have a long list of chores and projects to perform at my house and my mother’s house.  My brother and his family are coming from South Carolina to share Thanksgiving, to see my mother, my sister, myself and my family as well as my 104 year-old Grandma.  This will be their first visit here in three years.  I am fixing windows, installing a new front door, installing floor trim, keeping up with my emails, shopping for a new stove.  A few nights I get only 5-6 hours sleep.  On Thanksgiving I spend nine hours constructing a complicated, gourmet dinner.  There is way too much food.  After the feast, while everyone is sitting at the table relaxing, I return to the kitchen to finish preparing a sour cream pumpkin pie and a cranberry-apple, crumb-top pie.
For much of the following week I am really, really tired.  I overdid it.  Too much holiday.  I even feel a bit sick – my body is achy, a couple of days I have a low-grade temperature.  But this is how I frequently get when I am rundown and my immune system is compromised.  I still do not even connect to all this to the baseball-size bruises that appeared last month on each of my upper arms several weeks apart.  My constipation persists.  Thanksgiving dinner didn’t help that a bit.  On Friday morning, the last day of November, I am laying in bed when a sharp cramping in my lower left abdomen awakens me.  I had taken Senekot, a laxative, the night before.  I roll onto my back and reflexively massage my abdomen.  It is hard and feels solid.  I vaguely noticed that hardness a few weeks ago – constipation I thought.  But this time I palpate more carefully.  This hardness has definite shape – it runs straight down from my ribs to my naval, left of midline, about 4 inches across.  It’s quite hard and a little tender.   I lay there for a few minutes, staring at the ceiling.  Maybe now it is time to worry.

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My cancer story: prologue

I realize that I am asking people to share their stories.  And yet I have not shared mine.  So I will start things off by publishing sections of the journal that I kept when I was first diagnosed.  As always, please feel free to comment if you wish.  Dennis

Life is what happens after you’re planned something else.

Journal – December 2001:  How shall I begin this?  A journal to document what was unthinkable only yesterday.  How shall I begin not only this journal, but also this journey?  How will I sustain it? the journal? the journey? my sanity? my life?  And over all else, pervading thoughts, feelings, and actions for months to come, the recurrent and overwhelming question – how will it end?  Is this diary just for me?  a series of guideposts, a way of tracking both terror and grace over time.  Is this an attempt on the part of my rational mind to make sense of what is happening (what surely cannot be happening!), or is it a catharsis, a purging of pain, a necessary element of the healing process?    I will decide to make these pages public, make this very private experience public.  I will share it with family, friends, and colleagues.  I am and have always been a very private person.  In sharing this journal I will allow myself to be exposed and vulnerable to a degree which I would never have permitted before.
Illness can change a person, change the way in which they see themselves, other persons and the world around them.  Standing here at the beginning of this journey I cannot begin to fathom how and to what extent I will be changed.  At some point last week it occurred to me that my life will never, ever remain the same. And later I begin to appreciate that maybe this life-change is not entirely negative.  This experience can offer a chance at growth, at redemption.

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Blogging to Death

I just spent a little time googling “cancer blogs” and had a little of the same experience the last time I did this.  I find a nice blog – “hey, this look’s interesting…I think I’ll bookmark it!”  Then I notice the entry date – 6 months ago, twelve, 2 years, five.  Of course, I think the worse at first.  Maybe we all do.  Another blog has died, has succumbed to the cancer demon.

Or not.  Maybe they just relapsed and need all their energy into achieiving a subsequent and more difficult remission.   Or maybe they’re totally cured and want to forget this also, want to return to pre-morbid normalcy.  They just want to live a ‘regular’ life and don’t want a blog to remind them of the hell they went through.

Maybe they feel they gave all they could,  Now it’s somebody’s else’s turn to carry the torch.  Seem unlikely, unlikely that someone could turn their back and leave everything behind – even the good things, even the graces that followed the cancer in unexpected whisps and waves.  But the cancer monster does wear us, and change us in so, so many ways large and small, obvious club-you-over-the-head ways and in ways more subtle and fleeting.

Or maybe this missing cancer victim is surviving so well, is savoring life so much that any extra time for blogging has been squeezed out.  Away on a cruise, languishing on some secluded beach, backpacking on some mountain retreat, or stretching out an indefinitely extended vacation to a destination dreamed about for years and finally, miraculously, come to fruition with the rebirth of full remission.

Or maybe it was the miracle of a new relationship that lured them away from their obsessive blogging habit – a new lover, a new spouse, a new child, grandchild?

So, I will try, in the future, when I stumble across some blog that seems now long-forgotten, to think first not necessarily of death but rather the harbinger of better things and of dreams come true.

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Storytelling and Cancer

Storytelling is fundamental to the human search for meaning.” ~ Mary Catherine Bateson

I actually just read this quote in another cancer blog – Our Cancer – sponsored by NPR.  It reminded me of how important storytelling is in framing our experiences.  During my twenty-some years as a nurse, I have spent countless quiet hours listening to stories told by my patients.

I spent six years working in psychiatry.  For these patients struggling with emotional and mental stresses, storytelling actually becomes the central work of their therapy.  It is an effort to revisit pivotal moments of their lives, to retell these moments in the present in order to try and reveal something about the particular event that shed light on the crisis they now found themselves in.  The importance and preciousness of their stories was many times glaring.  Numerous conversations were prefaced by the words “I’m going to tell you something that I have never told anyone else.”

I think that in much the same way we persons with cancer look for ways and opportunities to tell our stories. I suspect that this is the underlying intent behind many cancer blogs.  But in other numerous smaller, less organized ways we seek to tell our tale.  It is what we run through when family amd friends call us up and ask about our progress, our latest round of chemotherapy, our most recent series of radiation treatments.  We patiently, sometimes enthusiastically recount the details – what the nurses said, how the oncologist looked at you after you said something odd, what the research article that you found on the internet seemed to say, how your spouse reacted when you started to vomit, how you felt when you first looked in the mirror after losing your hair.

And throughout this narrative we strive to weave details of our normal lives – how it was raining when you got to the clinic, that you were anxious when they had trouble starting the IV because that would make your chemotherapy late and you had to pick the kids up from school, how you needed to call the insurance company to question something on that last statement but you were just too tired.  Our experience is this strange mixture of the unreal and the mundane.  Our life needs to go on just as before even though it has been tilted crazily off balance.

And so we use stories to sort this all out.  We use storytelling as a means to somehow restore, at least partially, balance to our life that is wanting to spin madly in some other direction.

Stories are also our means on connecting.  They are part of the way in which we pull back on relationships that we sometimes fear might also tend to spin away.  For some of us, normally bound closer to our introverted selves, storytelling becomes a means of building new connections as we seek new meanings to the lonely, neglected corners of our lives.  It is a vocal, concrete expression of reaching out because at the heart of these things we do not want to go through this alone.  We do not want to be this cancer alone.  We do not want to succeed or to fail without witnesses to our suffering, our fears, our struggles, our triumphs, God willing.

I guess that is one of the thing I thought this blog could be – a compilation of stories, a depository of reflections and meditations from a wide variety of people.  People who before these events may have had little in common.  But people who, in having been transformed by cancer, have been brought together by commonalities now too precious and too personal.  I thought that, like other found places on the web, a small community could be built.

And so I invite you, no, encourage you to tell your story.  Not your whole story necessarily but the bits and pieces that so magically happen to fit some comment or anecdote that you might read here.  There is nothing to loose and so little to risk.  And what you might gain is a sense of community, of not going through this alone, of having been where many others have gone before and are just now preparing to go.  What you can give to others with your storytelling can be a comfort  and a blessing.  Let us share.

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