Friday, July 10, 2015

Welcome to Cancerland

Okay, if Disney were to make a theme park out of my life, I really wouldn’t want to call it Cancerland.  After all, Cancer has not defined my life and I don’t want it to.  But there would have to be at least a cancer ride.  For that I’m envisioning a Space Mountain kind of thing, a rocketing, rocking. rollicking thrillcoaster where you never know how long you’re going to remain on a straight and level course before getting knocked about again, all done in the dark.  That’s the ticket.

The word “cancer” does not do the disease any kind of justice.  At first glance, the label raises alarms and creates a vision of someone facing a dire medical challenge that could be fatal eventually.  There’s a simple progression and an easy-to-follow plot:  Cancer threatens vital organs.  Cancer may take those vital organs.  Fight ensues.   If the cancer wins, game over.

 The cancer reality is much more harsh, as I found out over the last several weeks.  Cancer is not a gun with a single bullet.  It’s not just a tune with a quickly reached climax and resolution.  It’s more like an opera, and a Wagnerian one at that, painted in broad, colorful strokes with soaring emotional peaks and plunging valleys.

You may already know about my bout with sepsis.  Who knew that one minute you could be sitting there minding your own business, and the next find yourself driving to the emergency room, bent double with the worst pain you’d ever felt in your life?  No warning signs.  You’re drifting along, thinking the thoughts of the innocent and pure of heart, and then, boom, you’re in the ER fighting for your very life (it was a close call, with my blood pressure at one point dropping down to the low 40’s over low 30’s.) 

OK.  Sepsis.  A “complication” of radiation combined with chemo.   Now we know.   Not that we didn’t know going into it.  The doctors who are about to put you through this torture go through the list of side effects with you in great detail.   But they do it in such a way as to downplay the danger.  The words on the paper are harsh—and that’s done so deliberately.  But verbally the doctor assures you the risks are low, which is perfectly true, and that the consequences are manageable.  He doesn’t seem concerned.  So why should you? 

When you’re getting the list of side effects read to you, the scenario is exactly like one of those prescription drug commercials you see on TV all the time:  In tones dripping with compassion, care, and concern, the announcer says, yes, this drug can harm you in countless ways, but it has helped many people.  When hearing the list of complications, what do you see on screen?  Not pictures of people doubled over in agony.  No, they’re walking through gardens, picking flowers, holding hands with loved ones, etc. and so on.  The thrust of the exercise is to sell the drug to you and convince you to take the treatment, not to send you screaming into the hills, and these commercials are quite good at what they do.  What is going to have more of an impact on you?  The boring cautions from the legal department, obviously put there as a result of our hyperlitigious society?  Or the warm, concerned, helpful announcer, and the pictures of all those healthy, happy people who’ve benefitted from the treatment?  The effect is even more profound when you get it face to face from a credible doctor with a good bedside manner.

Those side effects, of course, take on a new dimension when they become the reality.  Sepsis:  I’ll remember that one.  Hey, drug companies, if you want to get some video of me re-enacting being doubled over in agony, I’d be happy to accommodate you.  No charge.

About a week and a half after getting out of the hospital, two new terms got introduced to my life:  Deep Vein Thrombosis and Lymphedema.  One night I’m sitting in the recliner at home and I begin to notice that my right leg is getting stiff and achy.  The problem starts off mildly but quickly builds.  At 11:00 pm I head up to bed—and I have the damnedest time tackling the stairs.  To my shock I am forced to retreat.  Examining myself in the brighter lights of the breakfast area, I notice that my leg not only has swelled but has done so dramatically, and is now at least twice the size of its mate on the left.

What to do?  I decide to tackle the stairs again.  By the time I make it to the top, I am drenched with cold sweat, am out of breath, and as weak as a kitten.   I am hopeful that an application of pain meds will calm this down and allow me to get to sleep, but just in case, I advise Deborah to be prepared to drive me to the ER.  Then I get up from the end of the bed where I am sitting to begin the process of changing into my pajamas. 

I discover that I can’t do it.  I can shrug into my pajama top but am unable to proceed further.   I tell Deborah that we’ll have to go.   She’s ready.  But then I make another terrible discovery.  Now I cannot stand, much less walk.  It’s going to have to be an ambulance ride—the first in my life.  And then, just like that, I find myself back at Banner-UMC.  Howdy, folks, did you miss me?

Time for the next shocking discovery.  As bad as sepsis is, it can be cured if confronted early enough.  Within a day of arriving at the hospital for sepsis, my abdominal pain had decreased 50% and was on its way to zero.  I had to spend eight days in the hospital, and another week and a half at home, getting infused with antibiotics by IV, but at the end of that process I was pain-free and back on my feet, extremely fatigued and weak, but on my way to a full recovery.

That is not going to happen with my lymphedema.  As I type this, my leg remains swollen almost as much as it was when they wheeled me into the hospital.  It’s just as painful, and just as weak.  In essence, I’m crippled.  They gave me a walker to get around in, and that helps, but still I can only make it a few feet even with the walker before having to stop to rest.   I haven’t tried to drive, but with a right leg made of lead, it doesn’t strike me as the best of ideas just yet.

How long will this go on?  The answer to that question is the real stunner. 

My right leg is filled with clots.  That has interrupted the circulation and led to the swelling and pain.  For the condition to improve, the body must reabsorb the clots.  Blood thinning medication, which I am taking, can speed this process, but their use is controversial because of possible side effects.  The results are not immediate.  So how much time are we talking about?

Six months.

This assumes the picture remains stable in all other aspects.  It assumes that I throw off no additional clots.  It assumes that none of the clots already in place breaks off and heads to my lungs.  That would be a bad day.

And who knows what other new and fun surprises my cancer might have in mind for me.  I have what is called a “high grade,” very aggressive cancer, which will not be sitting still for the next six months waiting for my leg to recover before resuming its attack.  Six months from now there is no telling what shape I may be in, but you can be assured it won’t be as good as it is now.

Obviously, this has not turned out like anyone had hoped.  My goal in beginning treatment in May was to do nothing that would subtract from the number of days I had coming in which I would feel and function well.  Yes, it was understood that radiation and chemo would make me sick.  But the idea was that in return I would get an unknown but reasonable number of healthy days tacked on that I would not otherwise have had coming to me.  Everyone understood those goals going into the treatment.   Alas, the train went off the rails.  Just as I had feared would be the case, the day I began treatment turned out to be my last “feel good” day.  Now, a “good” day for me will be one in which I can rest in the recliner, keeping the pain at bay with painkillers and in which I get at least some writing done when I can muster the energy to go upstairs—followed by a good night’s sleep.

How much writing I’ll be able to do is not clear.  The pain is intense, so the pain killing doses have to be too.  At the height of the dosage cycle my mind is not coherent enough to write.  This blog entry has taken me three days to cobble together; normally it would take no more than half a day.

I could decide to spend some of the not-great-but-not-godawful days ahead undergoing yet another round of chemo.  This fits into my studiously-to-be-avoided nightmare scenario where I am taking days in which I am doing at least okay, and turning them into days when I am abjectly sick and miserable, without the guarantee of any benefit, and a long list of potentially permanent side effects.  I assumed my oncologist would try to talk me into pursuing chemo anyway, but to my surprise, he didn't, and instead totally supported the decision I have now made to sign up with a hospice service—one of the best ones in town, I’m told, Casa de la Luz.

My spirits remain high.  I did, after all, get all those bucket list items checked off.  How many people can say that?  There is one more book I plan to put out there for you.  It’s not fiction but rather a memoir showing a side of me most people never suspected existed, mainly dealing with possibly paranormal events I have experienced over the years—and also some miracles of which I have been the beneficiary.  No, I’m not making this up.  The book is ready to go but I haven’t published it yet only because I don’t want to distract from marketing of the sci-fi novel The Dark that I just did publish.  If I mess up the timing and pass away before I can get the new one published, my sister Amy will take care of it, so it’ll be available for you one way or another down the road.  There is also one more science fiction novel in me, although the odds of me finding the strength to write it don’t seem good at the moment.

I know this is not the news anyone wanted to hear.   But rest assured that my pain is well managed; that is one thing hospice will do for you.  So even if I’m not out playing racquetball or training for a marathon, I am comfortable.  

The fact that so many of you continue to reach out to me is beyond amazing.  The public feedback is right there on my Facebook page for anyone to see, but I’m also getting tons of heartfelt support by private email, some of which has moved me to tears.  This reinforces a point that I’ve been trying to make here in these entries:  Never believe your life is a waste.  I am learning that mine has affected others in ways I never suspected.  And if that lesson is true for me, it has to be true for others as well. Your life does matter.  Believe it.  Depend upon it.  Embrace it.  Celebrate it.

Thank you for your continued support.  Watch this space for more updates and, yes, even the occasional bloviation.  (The world is p*ssing me off now more than ever!)


The full story of my medical journey can be found here.


  1. Minor correction Forrest. Your life IS affecting others (not has affected). You've set the inspirational bar pretty high for the those of us that will be following in your footsteps in the not too distant future.

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