Hokey Pokey

November 10, 2010 By clergygirl Leave a Comment (Edit)

I feel sometimes like I’ve got one foot in cancer and one foot out.  Like I’m doing the hokey pokey and my body can’t decide which it wants to be.  And just for good measure, about once every six months I need a little shaking up just to remind myself I am never fully ever going to be free of cancer.  Not that my body will never be free, but my mind and my fears will never be free.

I live in reality of being a cancer survivor daily. 

Not that I don’t go hours or days without cancer on my mind, but most days I will have a cancer thought brush my reality.  Just a little nudge to remind me the shadow is still there.

So my brush with reality last week came in the form of a pain in my right side in my lower rib area.  I let three days of this pain go by before I called to see the doc.  I probably should have waited longer, but, there again, I let my mind wander to all the “what ifs.” 

My doctor ordered a CT Scan. 

After being entirely open about my cancer journey I’ve felt a bit timid about saying anything publicly here because, quite frankly, I’m even tired of myself and my little cancer scares.  I, quite frankly would like to lose weight (which I have been) and ENJOY it, rather than freak, because….what if I’m losing weight for another reason….gasp! 

It reminds me that I am clinging to something that is so temporary rather living in the fullness of God and His faithfullness.

Because I’m not really scared of dying.  I’m actually more scared of leaving behind the ones that I love. 

I spend a lot of time, too much time, thinking about what would happen to my children if my cancer came back.  Because chances are really good if it came back as metastasized cancer that it would eventually consume me. 

And I always joke that if Jeremy is left to take care of the kids their teeth will rot out of their head because he will never remember to tell them to brush their teeth.  But the truth is that I just took Elijah to the dentist and he has a mouth full of cavities not unlike my older two, so it’s not like I’m the queen of the pearly whites. 

But I want to be the one to brush their teeth, and help pick out their prom dress, and snuggle with them, and remind them how much I love them and how completely special and unique they are despite their imperfections.

I wouldn’t mind retiring in Florida with Jeremy either.

And just to end on a positive note, because I’m afraid this is sounding far to sad.  My mom, my sister and my MIL are all in “the know” about my pain in the side and my CT scan, so I think they get in cahoots together to call me and text me every hour until I have the results, and you know those techs aren’t allowed to give you any kind of clue whatsoever, and I try people, I really try.  I say things like “just as long as the cancer isn’t back,” just to see if they look sad as I leave.  But this kind woman didn’t give me anything to go on.  At least when I was diagnosed they sent me straight for a biopsy and I knew something was up.

But nothing.  Just a smile.

So my MIL tells me today thatshe has announced to her class (she substitutes) that she is keeping her phone on because her daughter-in-law who has had breast cancer had some tests and she needs to know how the test results came out and that when they hear the phone ring she will need to look and see if it’s me (never mind that I won’t know for at least a few days).  So how cute is this…..every time the phone rings those rowdy high school kids all get together and start saying “shh” and “quiet, Mrs. Brown’s phone is ringing” and she says the class gets completely quiet and they get really serious.  Which I find strangely sweet from a bunch of high schoolers I don’t know. 

And it’s never me on the phone because I don’t know the results yet, and may have to wait a WHOLE second weekend of “what if” before I get the answer.

But I figure, between last spring when I had the bone scan and the lung x-ray, and the time before that when I had the MRI to confirm the lumps in my armpit were in fact just hardened fat from reconstruction and now a CT Scan of my abdomen, I will be assured my cancer is gone…..

Wait, there’s still the brain. 

Crud.

“But when you ask, you must believe and not doubt, because the one who doubts is like a wave of the sea, blown and tossed by the wind.” (James 1:6)

So I’m tired of being tossed around by cancer.  I’m tired of being shaken up like the hokey pokey.  I’m tired of feeling like I’m shaking the ones I love.   I don’t believe the hokey pokey is where it’s at.  Do you?  I mean, unless your doing it with your kids and fully living, and I guess then it would be absolutely 100% acceptable.  Maybe even encouraged.

Here’s believing I’m living fully in the presence of God today, and even tomorrow, cancer or no cancer

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7 Responses to Hokey Pokey

  1. whymommy says:

    You are beautiful. Just … beautiful.

    Waiting with you, for you. Come back and talk about it anytime. We’re here for you.

  2. Jojo says:

    My oncologist did a great favor for me when I finished treatment. She said everytime I had a pain that worried me, to write it down on my calendar and then forget about it. If the pain was still there in 2 weeks then I should make an appointment to see her. She also said that pain from cancer rarely abates – it only gets progressively worse. So if I had pain for a few days that went away and then came back, it probably isn’t cancer.

    She also told me it was okay to wait 2 weeks because it doesn’t matter how soon you find metastasies, they can rarely be cured.

    So I write in my calendar… and I try to forget. So far nothing has lasted more than a week. It’s the best advice she could have ever given me. I hope you will try it too.

    I also hope for a good outcome from your scan. Here’s to calmer winds and smoother sailing!

    Jojo

  3. I’m a 20-yr survivor (lymphoma)who has worked hard to learn to calm the anxiety when waiting to learn if a new pain, lump or lab abnormality represents another recurrence or something benign.

    I believed that it was possible to quiet the anxiety years before I found ways that helped me do it well. Like any skills, the more I practiced steps to calm myself, the better they worked.

    In addition to Jojo’s suggestion, these tips have helped me:

    1) While you are doing the right thing (and we know you are doing the right things, because you reported your pain to your MD and underwent the scan), use self-talk, such as
    * “It is what it is. I can’t think, say or do anything that will change what it is.”
    * “I don’t have a problem until my doctors tell me, ‘You have a problem.'”
    * “Worrying about tomorrow only steals from today. It doesn’t make getting bad news any easier tomorrow and it wastes good days while waiting for good news.”
    * “As long as there is uncertainty, I will hope for the best outcome.”
    * “I can — and will! — deal with whatever it is.”

    2) If a worry or bad-ending rumination arise,
    * acknowledge it [“Oops. There is another worry.”]
    * explain it [“I’m having this thought because of the uncertainty, and not because I believe the bad ending is going to happen.]
    * let it go [Bye, bye. You are not helping me, so I’m letting you go.]

    3) Make efforts to
    * keep busy
    * make sure I get enough rest
    * ask for sleep aid if worry is preventing sleep
    * get exercise or whatever physical activity releases stress
    * pray for strength and guidance
    * surround myself with things and people who lift my spirit
    * tell friends and family who know about the current situation to please NOT ask for updates.

    My writing on survivorship revolves around the notion of a “Healthy Survivor,” a two-criteria label for survivors who (1) get good care and (2) live as fully as possible. From your blog post, I can see you are, indeed, a Healthy Survivor.

    Wishing you peace and strength.

    With hope, Wendy

  4. Tati says:

    I am a almost-two-year survivor of breast cancer. I have to say that I clung to almost every word of your post and felt like you were in my head, like you felt what I feel. Maybe it’s just something that we all feel at some point in our journey, I don’t know, but you said it better than I ever could.

    I live with almost constant fear – not disabling fear, but fear nonetheless. Every time I feel the lumps of fat necrosis above my left breast or the constant itch of the radiation recall that I suffer from I am reminded of all that I’ve been through and I hate it, but it’s part of me now and I just need to learn to be happy that I am alive and able to watch my daughters grow – “Count your blessings” as my mom would say.

    Another writer on here recently made a statement that, to me, was so powerful and I don’t think I’ll ever forget it (even though I forget everything else since chemo!) — “I’m beyond grateful to be here, but forever scarred and uneasy.”

    Thank you for sharing. I hope everything turns out for the best.

  5. Jenster says:

    Loved this post. Not because of the waiting and the pain and the “what if”, but because you just spoke to me. Every.single.word.

    Thank you for your transparency and your faith and your humor – it’s a great package!

    And, of course, we’re all waiting with you. (BTW – I went through the same thing a couple of years ago. I can’t even remember now what they decided it was, but it wasn’t cancer. So that’s what I’m going with here.)

  6. jillian says:

    You are me. Your thoughts are mine. I am currently being treated for a brain tumour and my husband has had a bone marrow transplant for leukemia. There are no aches or pains or headaches in our house that I don’t immediately assume are cancer. It’s a constant shadow that lurks.

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