Scanxiety

billyandloribabes

I belong to an appendix cancer support group, and one of the non-words I see quite often in posts is scanxiety, a condition related to the anxiety felt about medical scans that are given regularly for an indefinite amount of time after cancer treatment. In the beginning my scans were spaced three months apart; now they are six months apart. I’ve gotten good at coping with the anxiety nowadays (four years post diagnosis) most of the time, but when I get to the day before testing, as I have today, I find my mind casting away from anything productive.

My creativity is gone. I can’t concentrate on writing my novel or even reading someone else’s novel. I want to talk about it, but I don’t want to sound like a hypochondriac. I don’t want to seem negative. I don’t want to be told not to worry, everything will be fine. Even though I know it probably will be.

IMG_0679 This photo depicts my usual outlook on life, and was taken on my beloved mountain. This is not to say that I don’t love, love, love Wisconsin!

The thing is, I’ve never gotten over that initial out of nowhere diagnosis. I can only say that I feel vulnerable to invasion, or worse, that I feel like an unknowing host. I don’t understand cancer. There are so many different kinds of cancer, so many different treatments, so many different outcomes. Mine, Goblet Cell Adenocarcinoid Cancer of the Appendix, is supposed to be quite rare. It doesn’t seem so rare when I read the stories in my support group.

Sometimes I think I should drop out of the group; it reminds me daily of something I should not dwell upon. I believe in the power of positive thinking, and maybe reading the very real cancer stories, takes some of my shine away. But I also think that I should buck up—you know, be there for those who ask for a prayer or just need to vent and need to know someone out there really hears them.

I rarely participate in any length, usually just a word or two. Others in the group are much better at knowing what to say. Quite a few of them even offer up-to-the-minute cutting edge medical information, where the best hospitals are, how to connect with an appendix cancer specialist, the ins and outs of health insurance, tumor markers, treatment experiences—all sorts of really important information. I can’t help but feel I haven’t found a place of usefulness within the group.

And here I am tonight, inexplicably sad about the way that cancer changed my life and knowing I might be able to get some help from the group if I could just express myself without sounding like an infant. Most of the posts I read are written by or for those of us who are currently in the throes of the worst of the disease—those reeling and just diagnosed, those going in for their 2nd, or 3rd, or 4th surgery. Those who are in palliative care. The loved ones of those recently passed who write to break the news to the group.

And here I am feeling pretty darn good. I am one of the lucky ones. Makes me feel like a phony just wallowing in a selfish bout of survival guilt. And yet. And yet I am sad. Sad that my life changed so drastically since my initial appendicitis attack. The appendicitis that turned out to be hiding cancer.

Four years ago I was a teacher living on a mountain, surrounded by family, friends, students, colleagues, and neighbors that I loved. My four grandchildren all lived within a few miles of me.

That is not to say that my life is not good today, but it has changed dramatically. I miss my old life. I miss my kids. The circumstances of my life after cancer and my second surgery have impacted almost every aspect of my personal life and my career. Not all of it is bad, but some of it is. I’m not going to lie.

Paris to home 2013 085

Sometimes survival calls for sacrifice, or at least that’s the way I’ve come to wrap my mind around it. Maybe it’s nothing as noble sounding as that. Maybe I just got lazy. Teaching, one of my great passions, had always required great energy, energy that I no longer seemed able to summon. I was eligible for retirement. My husband needed work and found a good position in another state. My tumor marker tests showed increasing evidence of cancer at the cellular level, yet my scans were clear.

I’m not sure what tipped the scale and brought us to this new place. Maybe it was down deep merely an urge to run, something I’d done plenty of times in my earlier years. Grief over my brother’s death, financial hardship, chemo-brain, depression, debilitating chronic health issues, fear of recurrence…all of these things and more must have played a part. I only know for sure that the world changed after my diagnosis.

That’s the thing about cancer. It sneaks up on you. I had no idea that I had cancer until I went in for my post-operative check after my appendicitis surgery. And that’s probably the root of my malaise. If I didn’t know I had it then…

Scanxiety.

I’m grateful for what I have; I still have love and family, however far away some of my loved ones are, and I will be forever grateful for what I have had. Nothing can take that away.

Mahalo.GrandmaJazz

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3 Comments

Filed under Cancer, Cancer Journey, Patient Advice and Support, Support Groups, Teacher, Writing

3 responses to “Scanxiety

  1. Charlene Wells

    Hi Lori, SO good to hear from you !!! You write so wonderfully – so honestly – and that’s what people need –written from the heart – from the middle of all you are going through — as someone else is in that very same spot — AND you will help them through it – with your words – whether spoken or in writing.
    Everything in life comes in a wealth of sizes, degrees, whatever you want to call it — and it’s all important no matter how small or big. Miss you and Mike. I don’t have a mailing address or email address for either of you – to stay in touch. I was so happy to see this come through on Linkedin !

    Please send it to me. Write anytime, anything — I love your writing !!!

    Love and blessings,

    Charlene

    Like

  2. Aloha Lori,

    I’m sorry you’re feeling so sad right now. Not that it will necessarily make you feel any better, but I too have to fight through unpleasant feelings at times. Some mornings I’ll wake up and just not feel right; achy, anxious or down. I find those feelings especially odd because I so rarely felt like that when I was at death’s door, going through chemo, surgery, or my BMT. Yet now, as I near full recovery, and cancer free, the doubts start creeping in.

    Well, for me to tell you that “it doesn’t feel good” to feel that way is silly, since your post explains it all in beautiful detail. But perhaps I can share some ideas that I use to work my way through that maze of uncertainty each time I find myself there. First, as soon as I recognize that I’m in the maze I stop whatever I’m doing and look around, and say, “Oh, what a beautiful day it is! I’m so luck to be alive to see this day.” You know what Lori? I am so luck to be alive! So are you.

    Sometimes I’ll go over to Bobbie and just give her a long, warm hug, telling her how much I love her and thank her for everything she’s done for me. I’ll just hold her until I feel that gratitude reservoir fill up inside me.

    Other times, I’ll go out and take a walk. I’ll work up a sweat and begin to feel my body working its way into a comfortable rhythm. I can tell you, I never stay in a funk for long when I have these three “funk-busters” at my disposal.

    There’s a beautiful mantra that comes from the book, A Path With Heart by Jack Kornfield, that I recite every day. It goes like this:

    May I be filled with loving kindness,
    May I be well,
    May I be peaceful and at ease,
    May I be happy.

    Afraid that your cancer will come back? We should start a club, we’d have so many members. I think it’s quite natural to be fearful of a recurrence, but if we dwell on what might (or not) be happening silently within us, we’ll miss out on the reason we went through everything we did…this beautiful extended life each of us has been given. It’s so special, like a second chance to make a difference.

    Since June of last year I’ve lost four friends to cancer. They were all wonderful people who weren’t as lucky as you and I have been. Each of them wanted more time to live and didn’t get it. I miss each of them very much. Everyday, I think of each of them. I create a picture of them in my mind and tell them I love them. Then I create a picture of my siblings and my kids and their spouses and their children. I send out my love and positive energy to each of them. They’ve all had my back through everything and I love them. I’m so grateful to be alive.

    As far as missing your professional life, I know exactly what you’re writing about. I love construction more than almost anything. Recently I discovered a way to be involved without wearing myself out. Perhaps there is an answer for you there somewhere as well. Perhaps you could help in a classroom or substitute beginning once a week. See how it goes.

    It would appear that you and I are very social creatures, both liking to spend time each day with at least one human being. Monday thru Friday, I’m mostly alone until Bobbie arrives. A couple of years ago we started what we refer to as “Fancy Drink Time.” This is our time when we sit and share the day with each other. This time includes reading aloud from a book we’ve chosen. Some days Bobbie will read and then I’ll read for a few days. We’ve found that non-fiction books stimulate wonderful conversation between us. So far we’ve read: Kitchen Table Wisdom by Rachel Naomi Remen, Tuesdays With Morrie by Mitch Albom, Mortality by Christopher Hitchens and now were reading Rachel’s second book, “My Grandfather’s Blessings.” Our next book is going to be, Unfamiliar Fishes, by Sarah Vowell. About half of our read aloud books were previously read by one or the other of us. For example, I read Kitchen Table Wisdom and found it so wonderful, but I was afraid Bobbie would never pick it up (she’s been lost in Harry Potter for two years), so I suggested we read it aloud. This “Fancy Drink Time,” allows Bobbie time to unwind before we start making dinner and gives me time to share with her what I’ve been doing. We don’t have a set length of time for FDT but it’s always at least an hour. You might try it out at home and see how you like it.

    I know I’ve gone on forever here, so I apologize, but once I get going… One last thing, you mention a general lack of knowledge regarding cancer and you also use the words, “invasion” and “unknowing host.” I want you to know that with cancer you are neither. Cancer is an illness that begins as a single mutated cell in your body and grows unchecked and unseen by your immune system until it begins to affect your organs or systems. It doesn’t enter your body, it’s always in your body. It’s you!

    Love and aloha, Larry

    Liked by 1 person

    • Dear Larry,
      What a kind and helpful response to my ramblings! I love, love, love your open heart and positive, yet honest, approach to your own journey and your ability to reach out to others. Thank you so much! Several of your lines really struck me:
      *** “I find those feelings especially odd because I so rarely felt like that when I was at death’s door, going through chemo, surgery, or my BMT. Yet now, as I near full recovery, and cancer free, the doubts start creeping in.”
      –Yes! That’s one of the reasons I wrote the way I did when I did. Why, for God’s sake, am I upset now? I started writing about it as a means to figure it out. And when you closed with the info about cancer being “always in [my] body. It’s [me],” I felt that truth. Perhaps I have even somehow become attached to the cancer or the idea of the cancer being mine or something “of me.” Strange. When I think about it, I realize I never felt particularly angry at the cancer–you know, didn’t yell, “F— Cancer!” or anything like that.
      *And your mantra from Jack Kornfield is simply elegant.
      *Fancy Drink Time!!! Wonderful! I’ll definitely try that one with Mike. (:
      So, Larry, as you can see, I really appreciate your writing to me. I’m so very happy that you’re doing so well. Sending you and Bobbi love from Wisconsin! Lori

      Like

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