View From The Ridge

View From The Ridge

Friday, July 1, 2011

Scanxiety

View from the Ridge
I leaned a new word last week.  My sister e-mailed me a link to Times Magazine article by Bruce Feiler    published on June 2nd.  He is a fellow cancer survivor who is going through events in his life much as I am.  What he has written says it so much better than I have been able to and I have taken the liberty of copying portions of his article to share with you along with some of my comments.  Since I am not writing this for profit, I am assuming that is permissible.

The date is not circled in red on my calendar. Often I don't even write it down. I don't have to. It gets locked into my inner Outlook calendar and gradually grows larger in size and gravity as the day approaches, as if I'm being pulled backward through a looking glass. Objects in front of you are closer than they appear.
It's my cancer scan. My regular date with my digital destiny, in which a few seconds of X-rays will show whether the handful of nodules that have been in my lungs since I was diagnosed with bone cancer three years ago have grown larger

Here is where my experience differs from Mr. Feiler’s.  My CT-PET scans and MRI’s last from 90 minutes to 2 hours.  Scan times last 15 to 25 minutes each, with just a couple of minutes in between.  Couple that with my Restless Legs Syndrome and I am about to go crazy by the end of the session.  Then there is a 24 hour wait until my appointment with the doctor to hear the results.

All patients have complicated relationships with their scans not unlike the hate-love relationships we have with other technologies in our lives. We first learn we have cancer from scans, then learn from them if that cancer has shrunk or disappeared, then learn if it has come back. Scans are like revolving doors, emotional roulette wheels that spin us around for a few days and spit us out the other side. Land on red, we're in for another trip to Cancer-land; land on black, we have a few more months of freedom. 

Scans are not all alike, of course. They come in all shapes, sizes, even flavors. I've had scans that required me to drink disgusting, semisweet liquids, scans that shot a Chernobyl-like dose of radioactive isotopes into my bloodstream, scans that inserted me into a giant doughnut of a machine and scans that used a machine that looks like a huge daddy long legs and ran a coffin-size metal plate over my body. 

The most painful scan I have had involved injecting Radioactive isotopes with a hypodermic needle into my left nostril, four times, in order to locate the lymph nodes in my neck that was servicing that area of my nose.  It took a sumo wrestler wannabe to hold my head still!

But there's one thing all scans have in common: they engender "scanxiety" as they approach. Scanxiety is one of those uniquely modern maladies, like carpal tunnel syndrome and BlackBerry thumb, that arise because we're experiencing something entirely new to human beings. For millennia, doctors and patients would have given almost anything to be able to look inside the human body. Now we have an ailment for the fear of what we might find when we do.
The name scanxiety hints at the larger ambiguity we feel toward these medical miracles. On the one hand, as someone who was once months away from being overcome by cancer, I know that scans saved my life. Yet they could be killing me too. One aspect of scans that's rarely discussed is the damage the radiation leaves behind. I asked my doctor about all the radiation I'm currently receiving. "I'm trying to protect you from the cancer you have now," he said, "not one you might have in the future." And if there's anything true about cancer, it's the unpredictability about what's coming next." 

I asked my doctor the same question, and basically received the same answer.  With any cancer early detection and early treatment is the answer to success.  With most cancers, when they return, they return with a vengeance.  The earlier you detect it, the better your chances of survival.  It is a constant battle of risk vs. reward.  

As my scans approach, I become increasingly wary and deliberate in my actions. I put off major decisions until after I hear the results. My breathing gets tighter. And those regular drives to the clinic are among the most tense I have — though there's nothing I can do at this juncture to affect the outcome

The toughest part of all this is how to handle major decisions.  On the one hand, none of us are guaranteed tomorrow, but at 72 the end of the road is a lot closer than I’d like to think.  A year ago we weren’t making any.  Today we are better able to at least consider them.  As my scans approach I find myself withdrawing some, less outgoing, less able to focus on task at hand.  My mind tends to run through hundreds of scenarios of what will happen if the cancer returns.  What treatments are left, what will my body be able to tolerate, what effect will this have on my family, etc., etc.  Border line depression?  Maybe. 

It occurs to me that scans may be the only area of modern life in which progress is not embraced. We measure success in sameness. As I'm leaving, I stop at the desk and set my next appointment; the calendar starts again

There is an elephant in the room that Jeri and I try to ignore, but can’t because he is so enormous.   After a scan, he retreats into the far corner of our minds but always within sight.  As the weeks pass and the time of the next scan approaches, he becomes larger and starts inching his way back to the center of our minds until the day of the scan when he is sitting his fat fanny squarely on top of us.  As we sit in the doctor’s exam room, waiting for her to show up with the results, the tension is almost unbearable.  So far, she has entered the room with a smile on her face and the words of “all clear” are met with a huge release of tension and tears.  

No matter what the outcome of the last scan, it has no bearing on the next one.  So the question becomes will it ever get to the point of routine, where it becomes like an annual blood test, or will the elephant in the room stay there making his presence known.  My next MRI is in late July, and I am already dreading it, partly because I know the radiation is going to ultimately take a toll and may cause cancer, and partly fearing the results if the cancer returns.  But the questions raised by NOT knowing would raise the anxiety level even higher.  It is not the dying I fear, it is the whole process the disease will take me through, the decisions that will have to be made, the suffering that will come with or without treatment, the wear and tear on the family, etc., etc.  The problem with cancer is you are only cancer free until the next scan.  I was cancer free from prostate cancer for four years, and still am, but then a totally different, unrelated cancer comes out of nowhere.  So I am now, presently, cancer free of that one, but will the radiation and nuclear medicine cause a third kind?  I have no control over this, so I continue to put my trust in God, because He does have control.  And I know that no matter how this goes, He will take me through it. 
 
Psa 91:1-16 Whoever goes to the LORD for safety, whoever remains under the protection of the Almighty, can say to him, "You are my defender and protector. You are my God; in you I trust” He will keep you safe from all hidden dangers and from all deadly diseases.  He will cover you with his wings; you will be safe in his care; his faithfulness will protect and defend you.  You need not fear any dangers at night or sudden attacks during the day or the plagues that strike in the dark or the evils that kill in daylight.   A thousand may fall dead beside you, ten thousand all around you, but you will not be harmed. You will look and see how the wicked are punished.  You have made the LORD your defender, the Most High your protector, and so no disaster will strike you, no violence will come near your home. God will put his angels in charge of you to protect you wherever you go.  They will hold you up with their hands to keep you from hurting your feet on the stones.  You will trample down lions and snakes, fierce lions and poisonous snakes.   God says, "I will save those who love me and will protect those who acknowledge me as LORD.    When they call to me, I will answer them; when they are in trouble, I will be with them. I will rescue them and honor them.    I will reward them with long life; I will save them." GNB

4 comments:

  1. Thanks, Mike. I am sure Sandi (Tom's sister) goes through the same things that you do. She has been off chemo for several months and is feeling much better. But, we don't know what is going on inside her. She plans to visit us the end of July. Praise God, we are all believers and continually ask for His Will in our lives. We know the outcome, but not the journey. Love ya much.
    Judie

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  2. How do people go through this who don't have faith in an ALMIGHTY LORD GOD who doesn't allow anything in our lives that is not for our good and His glory! Thanks for sharing so intimately. I love you both.
    Bertha

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  3. Thanks for sharing once again. Thanks for being so vulnerable. Every time I read your posts I think that. For someone like me who has not been around anyone close to me with cancer, you are giving me such insight, such a peek into your mind and thoughts. I just pray God will help me remember and know how to help others if that day should come.

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  4. Hi Mike,

    Soon you'll be having your next MRI and dealing with "Scanxiety!" My prayers will be with you. Read your blog and thank you for sharing your experiences with such depth and reality. You made me even scared, but I look forward to your blog of good news. May God bless and strengthen you along the way.
    Sharon D.

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