Dinosaurs

Posted on: July 16th, 2015 by
14

“Oooh, that’s one creepy-looking dinosaur!” I told my wide-eyed-but-ready-for-bedtime daughter.
“Then read about it, Mommy!” she laughed, pointing at the ferocious dinosaur in one of her favorite books.
“Honey, I’m so glad they are extinct.”
“Otherwise, they would chase us and eat us?”
“Yes, I’m sure.”
She yawned. “I’m glad they are extinct, too,” as she rolled over to sleep.

It’s now midnight, and I’ve been trying to sleep for hours, but cannot rest an eyelid.

A dinosaur is trying to devour me.

***
I’m having a bad night. One consumed by fear and anguish. I wish it were a good night, one where the medications ease my anxieties and put me in a restful sleep.

But tonight isn’t that night.

The last of my cancer treatments was a long time ago in cancer years, yet here I find myself curled in a fetal position, crying about breast cancer.

Alone.

With. Too. Much. Time. To. Think.

I ruminate endlessly about how I needed not to have heard the words, “It’s cancer.”

My loved ones think I should be over “it” by now. A friend recently told me that where I am now is so much better than where I was a number of years ago when I was newly diagnosed and undergoing treatments.

In a sense he’s right. I am far better off now. I have a beautiful, joyful life for which I’m thankful every day. I really lucked out so far in this game of cancer roulette.

But the PTSD that keeps me up some nights has made me supremely unlucky, too. It is part of the collateral damage that ensures I will never be done with breast cancer. NEVER. No matter how long I long for the carefree days when I was untouched by ill health, I will never be carefree again. It’s not just fear of recurrence and paranoia about aches and pains that keep me up at night, but trying, trying, trying to cope with trauma.

I have repeatedly told my doctors about my PTSD, and they are understanding — but unless they themselves have faced a life-threatening disease — I know they do not understand. They have helped me physically; their interest lies in the human body, not the mind. Of course, the mind-body connection is powerful; I just wish they understood that.

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Although mental health professionals have my back, I still wholeheartedly wish for my other doctors to understand what I’m going through.

One mental health professional asks me each time I see him how my sleep is. “Just fine,” I lie. I’m afraid I’ll be put on medications that will make me a zombie. This is unacceptable to me. So, here I lie tonight unable to sleep, constantly looking over my shoulder and grieving.

Yesterday, my daughter made a discovery, “Mom, this breast is smaller than the other one!” Though I was weeping internally, I calmly said that I know and once again reiterated that it’s because mommy had a boo-boo there, and it was removed, so my right breast is smaller. “And what about that?” She was pointing to a remaining deformity on my right breast due to three lumpectomies, radiation, and mastectomy with reconstruction. I then told her that it was because the doctor had to treat it to make the boo-boo go away.

Then, thankfully, she dropped the subject, leaving me relieved but shaken. Sooner than later, she will put the pieces together, and I will help her, as I help her put dinosaur puzzles together.

I have a great life and wouldn’t trade it for the world. I’m lucky I am spending wonderful amounts of time with my daughter. We have activity-packed days, which help keep the demons at bay.

Come to think of it, I think I could live with the dinosaurs. I wish cancer were extinct instead.

Feel free to share how cancer has affected you emotionally and/or physically.

Do you have “dinosaurs” in your life?

I am eager to read about your experiences.


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14 Responses to Dinosaurs

  1. Sadhana had this to say about that:

    yes,I too suffer from the ptsd.no sleep and anxiety over new pains or slight differences in my body.
    I chose after much research (now written about a lot) not to have any other treatment other than a lumpectomy which came back with a good pathology report. However radiologists and doctors tried blackmailing me with stories of “a terrible way to die” .i had to learn to turn these horrid tales into funny songs every time my mind let them take hold.
    Three down the track I am a healthy vegan and hope all cancers patients could be given a full view of their options.
    I pray for everyone to be healthy and compassionate to all
    Sadhana

    • Beth L. Gainer had this to say about that:

      Sadhana,

      Your doctors sounded pretty mean to tell you all those horrible stories. I’m proud of you for insisting to do what’s right for you. So many patients are not properly informed of all their options.

      Thank you for reading my post and for commenting. I’m so sorry you suffer from PTSD and have such anxiety. You are certainly not alone. I don’t know if you sought out help to quell the PTSD. I’ve got a great support system in place, which helps.

  2. Rebecca had this to say about that:

    Beth — I am very sorry we get stuck with cancer after the diagnosis. I totally agree the fear never goes away.

    I liked your analogy although I find it hard to compare cancer to anything. I would be afraid of dinosaurs too.

    I have a few dinosaurs in my life — mostly emotional pain. I have been worrying about breast cancer and a few days ago had a biopsy done in the breast where I had my original cancer. But this is not all. I recently had an abnormal pap and I need further testing to rule out cervical cancer. I only pray this isn’t another dinosaur.

    Your daughter will learn a lot about different things each day. You are a good mom for wanting to keep her innocence alive and allow her to have a childhood. It must be hard to keep it all in when all you want to do is scream and protect her at the same time.

    I hope you find a way to cope and feel better. I understand it can take time because I go through it too.

    Sleep better tonight. And tomorrow too.

    Hugs.

    • Beth L. Gainer had this to say about that:

      Rebecca,

      Thank you for your kind comment. I had a good night the following night, so that’s better. And, as a mom, I am trying my best to keep my child happy each day.

      I hope your biopsy results are negative. A few years ago, I had a biopsy in the same breast that had had the cancer. I was terrified. Luckily, results show that it was benign. I hope you have a benign result. I am also praying that the abnormal pap does not indicate cervical cancer. You are dealing with so much right now.

      Hang in there the best you can. I know that’s what you are doing.

      Hugs back.

  3. Scott Johnson had this to say about that:

    Beth, sorry to hear about the PTSD. Logging my medical records right now for income tax deductions and it brings everything back. There’s not a way to control reliving the experience but there must be a way to reduce the harm.

    Fortunately for me my care was awful so I can begin to distance myself from the human aspect of the “system” that never acknowledged me as a person anyway. When I imagine these people as vending machines their behaviour no longer connects with me emotionally.

    It doesn’t sound very nice to reduce people to silly machines but given how damaged I feel, why not? Investing in expectations of care from them keeps me in a state of disappointment and hurt feelings.

    As you do, I need those feelings for real people and myself. We need to be responsive, whole persons and too much control has been transferred to a fog that swallows us.

    For me, the feeling of being helpless has to stop or I’ll never heal. No more transferring control to machines that, like you say, don’t really understand. I can feel their lack of caring a block away and my spirit tells me to stop playing with them.

    The people you deal with may be genuinely caring, but if your mind detects falsehood you know it inside and will damage you.

    Reading “The Primacy of Caring – stress and coping in health and illness” by Patricia Benner and Judith Wrubel. What I’m learning from this book written for nurses is how to sort the supportive people from the technicians and to stay away from the machines.

    • Beth L. Gainer had this to say about that:

      Hi Scott, I’m sorry you had such terrible medical care. It must have been so painful to not be acknowledged as a person. It’s quite a damaging experience.

      I agree that it’s not productive to feel helpless. The control has to come from within. The book you mentioned sounds interesting. I’ve put it on my ever-growing “to-read” list.

  4. ATS, M.D. had this to say about that:

    Thank you for your comments on PTSD. I am a radiologist recently treated for breast cancer. I chose bilateral mastectomy with reconstruction and am on Arimidex. I was blessed to be treated by colleagues and get great care but as you say, they really do not understand the trauma of what we go through and the lasting collateral damage. My own partners all expect me to be back to normal. Walk a day in my shoe Size!

    • Beth L. Gainer had this to say about that:

      Hi ATS, M.D.,

      Thank you for commenting. I really appreciate your sharing your experiences. It is great to be in good hands medically speaking, but it’s unfortunate that your colleagues don’t truly understand that there is no getting back to normal after breast cancer.

      Thank you again for your readership, and I wish you many, many years of good health.

  5. Jenny Bender had this to say about that:

    I’m almost done with treatment and things feel harder now than they ever did in the last 9 months. I wouldn’t say I suffer from the PTSD you describe (I’m so sorry!); but I know well the sleepless nights, the anxiety, and the feeling that everyone expects me to be back to normal when normal feels totally out of the reach.

    • Beth L. Gainer had this to say about that:

      Hi Jenny, I totally understand when you say it’s more difficult to cope closer to the end of treatment than when treatment first started. That exact thing happened to me when treatment was ending.

      It seems that during treatment we are very goal- and task-oriented: do what it takes to save our lives. But when treatment ends, that’s often when the emotional collateral damage of cancer really hits.

      I’m sorry you are experiencing difficulty coping. Trust me, you are not alone in this feeling.

  6. Nancy's Point had this to say about that:

    Hi Beth,
    I am so sorry that you suffer so much from PTSD. By sharing about it you are helping others who might be experiencing it too. Thank you for that. And yes, I have a few dinosaurs of my own post diagnosis. The collateral damage caused by cancer and cancer treatment is a huge deal and still not talked about that much. You are helping to change that with posts like this one. Big hugs to you my friend.

    • Beth L. Gainer had this to say about that:

      Nancy,

      Thank you so much for your kind comment. I really do hope I am helping others through writing about PTSD. Yes, the collateral damage is a huge deal, but society just seems to sweep it under the carpet. I hope that changes soon.

      Hugs back!

  7. Kathi had this to say about that:

    Oh, Beth, it just breaks my heart to read this. So many of us suffer in various ways, and I think to one degree or another, we each suffer from some kind of PTSD, maybe along different points in the spectrum, but many of us are there. The whole first year after diagnosis, I slept with the light on, like I did when I was a child and was frightened [http://accidentalamazon.com/blog/2009/07/11/sleeping-with-the-light-on/]. My sleep is still nuts. I never know if I’ll sleep through the night or not. I haven’t had nightmares though. I’m glad you have some support, but it’s so frustrating that many of our docs just don’t understand. I suppose you can’t unless you’ve been through it yourself. Love & hugs, Kathi

    • Beth L. Gainer had this to say about that:

      Hi Kathi,

      You make an excellent point here: that we each suffer from some sort of PTSD in one way or another. I’m so sorry you had such fear that first year after diagnosis, but I totally understand it.

      I hope you have restful nights. It stinks to have sleep issues. Ironically, I, too, haven’t had breast cancer nightmares. I’m not sure why, but I’m glad I don’t.

      As usual, thank you for your support. I will check out your link.

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