Matter Over Mind

Posted on: January 23rd, 2015 by
40

In a previous post, I said I was too scared to write what I deemed a risky piece on my blog. This is that post.

Throughout my pre-cancer life, many people have admired my fortitude and tenacity. Tarnished by life’s traumas, I still kept my platinum mind focused. Many folks used to tell me I was the strongest person they knew: No matter how difficult the road, no matter the odds against me, I was a locomotive — confidently and courageously accomplishing my dreams and goals.

Then breast cancer came in 2001.

I am fortunate to have been NED (no evidence of disease) for so long. And I’m grateful for all my abundant blessings. Those with metastatic cancer have it so much worse than me, that it’s almost embarrassing to write this post. After all, comparatively speaking, I have it easier.

But now is the time for me to come clean.

I’ve been living with Post Traumatic Stress Disorder (PTSD) and panic disorder for 14 years.

***

Breast cancer and, more specifically, its treatments assaulted my physical health. But this life-threatening trauma shoved in my face has truly been my Achilles’ heel.

My mental health has been compromised. My brain chemistry is forever altered — and not in a good way.

In my case, untreated PTSD results in sensory flashbacks, such as re-living the cancer experience every night, smelling the chemo room, feeling I am in ICU again, feeling the prick of an IV needle, tasting the metallic sensation of treatment, and generally living terror-filled days. Any thought, emotion, and/or image can cause some mighty heavy triggers.

It is hell.

It is isolating.

During the time of my chemotherapy and radiation treatments, my oncologist introduced me to a low-dose antidepressant and my internist prescribed a low-dose anti-anxiety medication. I had admitted to running into bathroom stalls at work to cry. My car was my confessional chamber, where I would collapse, curl up, pray, cry, and isolate myself from the cruel world. I had several public break-downs. My doctors sought to decrease my mental anguish.

Then cancer treatment eventually ended — and I know how lucky I am for it to have ended — and my loved ones expected me to get on with life. But, instead, despite the psych meds I was on, my mental condition kept deteriorating each year with increased flashbacks, panic, and depression — thanks to having had cancer, the gift that keeps on giving.

The strong, rambunctious part of me was dying, it seemed.

Eventually, hesitatingly, I sought out the help of a kind, brilliant psychiatrist who ultimately figured out the right medication cocktail. I was initially wary of increased dosages and types of psychotropic medications. I was so afraid I’d become addicted to them. And I thought that seeing a psychiatrist and taking psych meds would dull my emotions, as well as label me “crazy.” Like so much of the public, I attached a stigma to those with mental health problems.

But I surrendered to my psychiatrist’s directives. And thus — with medication and psychotherapy — I fought my way back to mental health.

The side effects of the medications include balance issues that are difficult to live with. It’s hard navigating stairs, and I can fall easily. I’m unsteady on my feet. In fact, I can’t walk a straight line (yes, I would flunk a sobriety test). And there’s the weight gain (ugh). I exercise and mostly eat right, but these psych meds make losing weight seem insurmountable.

My internist reminds me, though: “It’s better to have weight gain and be mentally stable as you are than to be off the medication and lose the weight, but compromise your mental health.”

Psychotherapy

For me, medication alone wasn’t enough to quell PTSD. Right when chemo and radiation treatments ended, my relationship with a gifted psychotherapist began and continues to this day. We work on effective ways to cope with panic and depression. With her help, I’ve developed a rather effective toolbox, which includes art, exercise, writing, deep breathing, and being with friends.

But my salvation in eradicating flashbacks for the most part has been a treatment successfully used for war veterans, EMDR (Eye Movement Desensitization and Reprocessing). You can click here to find out more about it, but basically, EMDR is a therapy where a patient recalls a trauma while receiving sensory input, such as watching an object move from side to side. The thought is that eye movements help one re-process trauma and emerge with new insights.

I’m lucky that my psychotherapist is trained in EMDR, and I have responded exceedingly well to this treatment. I’m glad to say I rarely have flashbacks, though I still get triggers and have to be careful what information I’m exposed to.

What is great about this treatment is that there is no additional medication involved. What is not so good is that, unless one is a war veteran, insurance often doesn’t cover it. I paid out of pocket for two EMDR sessions. They weren’t cheap, but they were worth every penny.

After all, one cannot put a price on mental health.

For me, the road toward sound mental health is ever evolving and always enlightening. Nonetheless, I have no illusions: Every day still presents challenges for me. But, while PTSD and panic disorder are here to stay, I am living a quality life nonetheless.

And now that I’ve written this post, I finally am free.

As the American rock band The Eagles say in their song “Already Gone,” “So often times it happens that we live our lives in chains. And we never even know we have the key.”

A special thank you to my friends Sharon Greene for being so honest about her PTSD and Nancy Stordahl for writing her post “That Other ‘F’ Word.” You both gave me the courage to write and publish this post so shortly into the New Year.


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40 Responses to Matter Over Mind

  1. Sharon Greene had this to say about that:

    Powerful post Beth! I am glad you came out of that closet. There seems to be a lot of us hiding in there. With your courage in writing about PTSD, more people will realize they are not alone. They too can break their chains of shame and silence. Even superwarriors get injured in the battles of the cancer wars and it is ok to say you really aren’t as undamaged as you appear. (Sorry for the war metaphors but in this case it seems appropriate). The breast cancer world isn’t all soft, pink, and fuzzy. There is real pain inflicted and the wounds don’t always heal by positive thinking alone. I am so grateful that you wrote this post for you, me, and all of us.

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

      Hi Sharon, thank you for your encouraging comment. I’m glad I came out of that closet, too, for I was suffocating in there! What’s amazing is that, although we don’t believe in the whole cancer warrior metaphor, it makes sense in the context of PTSD. I feel like a war veteran. And I experience the same types of fears, grief, and despair.

      Thank you, once again, for giving me the courage to write this post. Your honesty about your PTSD opened my eyes to the need to write about this sooner than later.

  2. Carolyn Thomas had this to say about that:

    Beth, thank you so much for sharing your story here. Congratulations! You did it! Several of my Heart Sisters blog readers have also mentioned the profound benefits of EMDR to help manage similar PTSD symptoms following a heart attack.

    I’ve written about PTSD in heart patients for a number of years. U.K. researchers suggest that 16% of heart attack survivors show symptoms of acute PTSD; 18% report moderate to severe symptoms. And lead researcher Dr. Susan Ayers warned:

    “Feelings of fear, anxiety and depression are common after a life-threatening cardiac event. The findings of this study suggest that a high proportion of survivors experience very severe distress. This has the potential to impair recovery, quality of life and threaten future health.”

    Cancer patients and heart patients can have this in common after a traumatic health crisis. Yet mental health issues like PTSD are too often ignored in cardiovascular care (and, I’m guessing, cancer care, too). The Montreal Heart Institute suggests that post-traumatic stress disorder following a heart attack is “an under-diagnosed and unrecognized phenomenon that can actually put survivors at risk of another attack.”

    Aside from quality of life effects, the relentless and frightening reality of living with PTSD symptoms as you describe so well here likely means we don’t exercise, we don’t eat healthy, we don’t sleep well, we don’t take our meds, we don’t follow our doctors’ recommendations, and all of these ‘don’ts’ can threaten our overall health.

    You’ve started the New Year off on a brave foot, Beth. Good luck to you in 2015!
    regards,
    C.

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

      Carolyn,

      Thank you for providing such interesting facts about heart patients and PTSD. As for heart patients, PTSD is sort of brushed under the carpet for cancer patients — probably for anyone facing a life-threatening condition.

      It’s a shame, really. And your points about self-care are spot-on. We PTSD sufferers often have issues with sleep, taking meds, and generally self-care.

      Thank you for your thoughtful comment.

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

    Hi Beth,
    It breaks my heart that you suffered so, but I am so glad you found the help you needed. I am proud of you for sharing about this painful topic. I know it wasn’t easy for you to do so. I wish we could ditch the stigma that is still so frequently attached to those with mental health issues. This post will help others out there who are suffering. I just know it. And thank you for the kind words. I take no credit here. This was all you. Thanks again for sharing, Beth. Proud to call you my friend. Hugs.

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

      Hi Nancy,

      Thanks, my friend, for all your supportive words. I’m proud to be your friend, as well.

      Yes, finding the help one needs is key. I know far too many people who won’t seek out help. I feel that taking care of myself and Arielle is too important not to address the problems that have plagued me.

      I can’t believe how many people are writing me privately to tell me about their PTSD. It is an amazing number, unfortunately. I’m glad that I have the opportunity to help others suffering from mental anguish.

  4. Caroline had this to say about that:

    I can completely relate. At my first cancer diagnosis, I had no support, I was miserable for years, not understanding why. Finally years later, I got some help and learned to cope. At my second diagnosis, I said no way is cancer sucking my life out of me again. I started my blog to tell about my treatment and health, I joined a support group, and then got a therapist. 7.5 years later, my mental health is okay but I still see a therapist and am on antidepressants. Life after cancer can be okay. But its never the same as it ever was because we are not the same people.

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

      Hi Caroline,

      I’m glad you were able to find resources to help you cope. We use as many tools as we can to improve our mental health. That’s all we can ever do. You’re right that post-cancer life is never the same as the innocent pre-cancer days.

      Thank you for your comment!

  5. Becky Hogue had this to say about that:

    Hugs. PTSD has been one of my greatest worries. I wrote about my depression early on in the process (http://bcbecky.com/2014/08/thisiswhatdepressionlookslike/) … Metivisor reported that a study showed that 5% of women have true PTSD after breast cancer treatment – that is actually pretty significant. Know that by sharing your post, you are helping someone who doesn’t know what is happening get help – and helping loved ones understand what is happening. It matters!

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

      Becky,

      I know that so many people have PTSD after breast cancer, but the public isn’t aware of it. It kind of gets swept under the carpet.

      I do hope that this post is able to help others who feel they have lost their way. Thank you for writing a post on depression. I will check it out soon.

  6. Wendy Doherty had this to say about that:

    Beth,kudos to you for sharing from a dark and painful place. I too am a breast cancer survivor and have experienced the PTSD that can accompany it. It is very real and impacts your life post cancer. As you said, breast cancer is the gift that keeps on giving.

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

      Hi Wendy,

      Thank you for your supportive words; they mean a lot to me. I’m sorry that you have had to be in that dark place that can come with a breast cancer diagnosis and treatment.

      Thank you for reading and commenting.

  7. Lisa DeFerrari had this to say about that:

    Beth, thank you so much for sharing your experience with PTSD and how you regained and are maintaining your mental health. I am so sorry that you had to go through all of this anguish. I had not heard of EMDR before-it sounds fascinating and I’m so glad it’s proven to be very helpful for you. I have no doubt that many others will be helped by hearing your story.

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

      Lisa,

      Thank you so much for all your support. Maintaining one’s mental health can be a challenge at times, but always something to strive for.

      EMDR is kind of fascinating. I was a tad skeptical before trying it, but I figured, what do I have to lose? It has been a great treatment for many, and I’m hoping one day that insurers will cover this necessary treatment. Right now, it seems war veterans are the ones with carte blanche to this treatment for little or no money.

      Thank you for your kind words, and I certainly hope that my story helps others in a similar situation.

  8. Ann had this to say about that:

    I have long thought that many women have become trapped by PTSD after a cancer diagnosis, and I think you are incredibly brave for sharing your story. You have helped more women than you might imagine by sharing this and the things you’ve tried, and I hope you contine to share this struggle and aspect of cancer. *hugs*

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

      Hi Ann,

      Thank you for saying I’m brave. I sometimes don’t feel brave, but I did want to share my story. I wanted to give people a fuller picture of what breast cancer can do to an individual.

      I’m hoping that my post is able to help others. I think I’ll take your advice about discussing this aspect of cancer. I have only just begun and have a lot to say about this.

  9. Lois Hjelmstad had this to say about that:

    Good for you, Beth. Although I never did tell my parents about my psychotherapy (it was such a no-no in the 70s), I now feel no shame in my years of therapy and anti-depressants. It has interesting to me that while I went to therapy in 1970 and went back in 1980, when I was diagnosed with breast cancer in 1990, I went to a support group, but did not go back into therapy. Apparently the first two stents and the meds were what it took to make me less likely to suffer depression. The support group also helped. I’m sorry you suffered so long and glad that you found the help you needed.

    I’ve taken low doses of meds for a long time and have no plans to ever quit. It feels too good to be able to function well.

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

      Hi Lois,

      “It feels too good to be able to function well.” You said it perfectly, and that’s exactly how I feel. I’m not about to mess with a protocol that is working for me, and it is working well.

      My parents also think that psychotherapy is a no-no, so I really don’t delve into this aspect of my life.

      Thank you for sharing your story so courageously. Everyone who suffers from mental health problems needs to figure out the options that work best for them.

      Thank you for reading and commenting.

  10. Claire had this to say about that:

    Thanks for sharing this. I had no idea. I admire you tremendously, my fellow warrior woman.

    I have PTSD (from childhood trauma). I’ll have to look into EMDR. That sounds promising. I’ve had good luck with body based therapies like focusing, Hakomi and somatic experiencing. And art therapy. From my point of view, treatment for trauma has improved tremendously in the last 25 years. But it still can be hard to find the necessary resources.

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

      Hi Claire,

      Thank you for reading my post and for your comment. As you’ve had no idea about my situation, I haven’t had an idea that you suffered from PTSD.

      I’m sorry you’ve suffered so.

      I’m glad the body-based therapies have been helpful. Learning more about EMDR can be a good step. It might be worth a try, but like you said it’s sometimes difficult to find the right resources.

      I do think treatment for trauma has improved from what it was 25 years ago. I hope it continues to improve.

  11. Elizabeth J. had this to say about that:

    Thank you for writing about this.
    My husband is a combat veteran and although never officially diagnosed, clearly has PTSD. Symptoms have faded somewhat over the years, but never totally left.
    As cancer survivors, we may not duck for cover at 4th of July fireworks, but there are times…..nightmares, memory triggers, unexplainable moods, that are so like his PTSD.
    Unfortunately, many doctors hand out antidepressants like candy, without any other help. I was absolutely unable to tolerate the first antidepressant they gave (later found out it can lower thyroid levels and we did not know yet cancer treatments had already increased my hypothyroidism). I was terrified of trying another one, but did get involved in a wonderful support group and for a while saw a therapist who helped me develop a lot of coping strategies. But we are all different and that was what worked for me.
    This is a problem that needs to be seriously addressed. And for those of us still going through treatments, who are not NED, we have not even left the battlefield. Yeah, I hate the war analogies, too, but for PTSD it seemed appropriate.

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

      Elizabeth,

      First of all, thank you for your candor. I’m sorry you and your husband have had this horrible condition.

      Before my psychiatrist did anything, he made me get a thyroid test. I do know that some doctors just believe that throwing an antidepressant or two at a patient will “fix” the problem. This is not always the best solution. For me, having the right medication cocktail and psychotherapy is what is helping me.

      I’m so, so sorry that you are not NED. I agree that battle language seems appropriate when the topic is PTSD.

  12. Cancer Curmudgeon had this to say about that:

    Great and helpful post! Hope it serves as a call to many to investigate mental health options.

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

      Hi Cancer Curmudgeon,

      Thank you for your encouraging words. Mental health sometimes gets thrown to the side, but it’s important to treat the whole patient, not just the physical part.

  13. Marie Ennis-O'Connor (@JBBC) had this to say about that:

    Beth, thank you for writing honestly about this topic and for sharing practical advice on how to overcome it.

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

      Marie,

      I appreciate your support. It was a difficult post to write, but I’m glad I did.

  14. Pingback: Weekly Round Up: The Being Vulnerable Edition | Journeying Beyond Breast Cancer

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

    Thank you, Journeying Beyond Breast Cancer, for including this post in this week’s Round Up.

  16. Gaye Moore-Lewis had this to say about that:

    Thank you for helping me understand What I am going through.I have suffered in silence.

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

      Hi Gaye,

      I’m sorry you have been suffering — in silence, especially. Do you have some support systems that you could seek out? It helps to have some help when it comes to mental health issues.

      I wish you the best, and please feel free to keep in touch.

  17. Susan Zager had this to say about that:

    Beth thank you for writing about this. I relate to everything that you’ve written and have been struggling with this too.
    I really appreciate how well you explained this!
    xoxo,
    Susan

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

      Hi Susan,

      Thank you for your comment. I’m sorry that you are struggling with this. There is so much cancer aftermath that is often ignored by the medical community. It’s really a shame.

      Take care of yourself….

  18. Terri had this to say about that:

    Beth – Thank you. This is brave and brilliant. I am inspired by your honesty and would love to connect further. Would you be open to writing a guest post for A Fresh Chapter in this vein? I think it’s so important to talk about the challenges we come back from – and the physical side is only one element. On a side note – EMDR has given me my life back. So much to talk about…Bravo You!!!

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

      Terri,

      Thank you so much for all your support and for your very kind words. I’m so glad EMDR has been life-changing for you.

      I would love to write that guest post for A Fresh Chapter. Let’s definitely connect; I will contact you soon.

  19. karen sutherland had this to say about that:

    dear Beth,

    I am sorry to join this conversation so late – have had some really difficult weeks and had to “go quiet”. i applaud your well written, honest post, but more, i am happy for you to be released from the cautions and qualms that caused you angst and worry.

    i am in intense therapy, including treatment for PTSD enhanced by EMDR. the myriad effects of trauma with both Hugh and me having incurable cancers, his sudden, unexpected death while in remission, and all the subtexts, including being diagnosed with a second cancer only 8 weeks after his death contributed to a series of to-hell-and-back scenarios that made me question the will to live. the treatment for PTSD along with EMDR has made all the difference, even though i know it will continue for some time. i love my therapist! it makes me angry when i hear of others who need those treatments, but are not referred to clinicians that are qualified to administer them, as well as the monetary issues.

    i know this post will help other’s and encourage anyone who suspects signs and symptoms of trauma to seek further help to determine if PTSD/EMDR is something that will help them.

    much love and gratitude to you, Beth

    Karen

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

      Karen, thank you for joining the conversation — it’s never too late. I’m so sorry for all you’ve been through with your and your dear husband’s tragedies.

      I’m angry that insurance doesn’t cover EMDR unless it’s for war veterans. Isn’t what we patients go through just as traumatic?

      I’m glad EMDR is helping you. So glad. Thank you for commenting and keep in touch.

  20. Rebecca had this to say about that:

    I am sorry cancer happened to you, Beth.

    Thank you for being so open about the topic of PTSD which many people, including physicians, refuse to focus on. Oncologists are too concerned in keeping us alive that they don’t think of, what they call, secondary problems. But like you mentioned, mental health is extremely important. It is our foundation for dealing with life in general, cancer or no cancer. Once that gets jeopardize, it is very challenging to be alive, literally.

    I think I’ve dealt with some of that but I’ve also been dealing with other challenges in my life, aside from cancer, for years now, and those have me focused on multiple things at once (one of the reasons why I named my blog the “small c”). Any life-threatening disease is awful to live with. So are the emotional cancers. I have both.

    I too handled challenges pretty well before cancer, now it seems that I refuse to invest my energy on certain things and simply cut them off, including relationships (family too). This is how cancer has affected me, I’ve lost all my patience for most things.

    Also, I have re-occurring dreams about my cancer coming back, more often than I want to. But those dreams are related to stage 4. I see myself speaking to my Onco about a new plan for my advanced cancer. And to make things worse, I’ve seen my cancer too. I hate those dreams. I get anxiety for days.

    Your post just inspired me to write something about different kinds of cancers — not just the physical, but the emotional kinds too. The ones that don’t allow us to live a happy life — this could be related to the lack of forgiveness and letting go.

    Thank you for such honest post. And for information about options on how to treat mental health.

    One path to recovery is accepting when we have a problem, and I am glad you’ve taken the necessary steps to get there. I am glad days have gotten better for you.

    P.S. It is so sad how people view getting help as “being crazy.” Not your fault, this has been the culture for years. In my culture it is the same way. We all need a hand from time to time.

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

      Hi Rebecca,

      I’m sorry you are dealing with so much, physically and emotionally. We often have problems outside of cancer. Once you add this disease into the mix, things can get downright intolerable.

      Cancer has taught me to cut toxic people out of my life. I also have less patience for expending energy that doesn’t need to be expended.

      Psychologically speaking, it is a shame there is such a stigma on mental health issues. And you are right: many doctors don’t acknowledge the “whole” person, the PTSD or whatever emotional problem the patient has.

      Thank you for writing such a powerful comment. I’m looking forward to reading your newly inspired post on the different kinds of cancers. Sounds like a very interesting post in the works.

  21. METAthriving had this to say about that:

    I still have a hard time wrapping my brain around the concept that a cancer diagnosis causes PTSD, much less the fact that I have it. Hearing it from other women who are going through the same thing validates that, and makes me feel less like I’m making shit up and being overly dramatic. It’s hard to accept that cancer-related PTSD is a thing, sometimes, especially with so many other “worse” traumas out there. The more people who talk about it, the more widely-known and accepted it will become.

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

      Hi METAthriving,

      You are certainly not making things up. It’s sad that our culture puts such a stigma on mental health conditions. PTSD is real and happens to many in the cancer world.

      And you are right: the more people know about PTSD and cancer, the more accepted it will become.

      Thank you for reading this post and commenting. I really appreciate it.

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