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It’s Okay to Not Be Okay

By Taylor Eames

When my psychiatrist said “Post Traumatic Stress Disorder,” I was kind of stunned.  There was not one major, impactful incident that had happened in the last four years that could cause what I was feeling.  In fact, there were several things that happened–a painful divorce, moving, caring for my mentally ill son, a cancer diagnosis, moving again.  I didn’t realize that these life events had compounded together to cause some deep depression episodes and debilitating anxiety attacks.

I finished treatment in August of 2016 and had surgery in October.  I got the glorious news that my path report said “no evidence of disease” shortly thereafter.  My hair was growing in.  I was no longer constantly nauseated, and I was gaining my energy back.  It was over.  Now it was time to move on and be healthy.

But I couldn’t.

The moment the surgeon read the path report as no evidence of disease, I thought I would be elated.  But the truth was I barely believed him.  I didn’t smile, I didn’t cheer.  I just didn’t care.  It was reminiscent of when I received my diagnosis actually. “I’m sorry to have to give you this news, but the biopsy indicated malignancy.”  I stood there staring into space, not feeling a thing.  It took several weeks for me to even cry.

The same happened here.  The cancer was gone. but I couldn’t feel any joy.  I couldn’t find it.  I had shared my journey so far on Facebook pretty openly and often in real time updating almost immediately when something would happen.  I hesitated to share this news.   It was like there was a wall in front of me, and I couldn’t step forward.

Then the nightmares started.  Scans that lit up like Christmas lights.  Phone calls from doctors saying they made mistakes.  Chemo again.  Nausea again.  My hair falling out again.  The pain.  I’d wake up covered in sweat, then I’d be unable to sleep.  I’d spend hours in the middle of the night occupying my mind with fluff online just to get the obsessive thoughts out of my head.

I began having deep depressions.  No one really knew about them though.  I have always been able to hide them from everyone else.  I’m a single mom so when I fall, the whole family falls.  I was sick for the better part of a year so I could’t let the depression overcome and disrupt my life, their lives.  I’d go to bed when the kids went to bed, and I would cry. I’d just lie there and cry.  I couldn’t understand why I was so scared now that I was well.  I didn’t know how to move on. I was stuck.  And it hurt.

I got a call in January that my oncologist was referring me to the survivorship program at the Cancer Center.  Survivorship.  So they were going to teach me exactly how I am to be a survivor?  Good, I needed that.

I went to the appointment and the nurse practitioner asked me how I was doing. I said my normal, “I’m fine.”  And she just looked at me.  I knew, she knew I was not fine.  I cried.  I told her everything.  She just sat there and listened intently for a good 20 minutes I’m sure causing her next appointment to run late.  She knew I desperately needed help finding my way and just let me sit there and get it all out.  The best part was that she didn’t interrupt me.  She just let me go and go.

When I was finished, she said she was proud of me.  She said this part is almost as hard as the treatment.  Moving on afterward, facing the future with doubts and fears, not knowing what to do next, it’s difficult.  Everyone expects a cancer survivor to be glad it’s over and see joy in a future of health.  But when those feelings don’t come, it’s common for the survivor to struggle in surviving.  Survivors don’t know that it’s okay to not be okay.

The nurse practitioner decided to send me to a psychiatrist.  I have a history of bipolar disorder and already take psychiatric medication so adding on to them was something she wasn’t comfortable handling.  I agreed.  In fact, changing or adding meds scared me quite a bit.  I had been on the same med regimen and been stable for the last 6 or 7 years.  I felt like this was more an environmental problem than a chemical problem.  But the fact was I was drowning in my own emotions and needed some help, even if that meant adjusting my medications.

I talked to the psychiatrist about what was going on.  He asked me questions about my life before cancer and how I coped with everything going on in my life.  She said that the amount of trauma I had experienced in the last four years is more than many face in their lifetime, and he wasn’t surprised I was now falling apart.  He said I tried to be strong too long, and it was time to give in.  I breathed out a sigh of relief.  I was keeping myself to a standard that was clearly too high for anyone, not just me.  And I needed someone to actually say that.  Again, it’s okay to not be okay.  My new mantra.

He ultimately ended up adding an antidepressant/anxiety to my medications.  It’s a low dose, but within a week or so, once I got past the initial adjustment period, I felt a difference in myself.  He also referred me to a psychologist for therapy.  He said it wasn’t healthy to keep it all in the way I had the last several years.  He said that it’s okay to be strong for my children, but I need to be weak for myself every now and again.

This is a part of treatment that isn’t really talked about.  But your mental health is as important as your physical health.  It is okay to be scared of the future.  It is okay for you to fear that the cancer will return.  You are not the only one feeling that way.  You need to let your doctor know when you are struggling, when you can’t get past those feelings.  Your mind is part of your body.  You need to take care of it too.


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Taylor Eames is a single mom of four living in Yuma, Arizona, who was diagnosed with triple negative invasive ductal carcinoma in January of 2016.  She openly chronicled her experience during treatment and continuing through the aftermath on TaylorTough on Facebook.  Taylor is one of the founders of Breast Cancer Sisters along with her dear friend, Kristy Irizarry.

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Scanxiety

By Kelly Nemecek

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Many fellow breast cancer survivors, myself included, freak out about scans.  This is actually a thing we call scanxiety.  It’s the anxiety you feel while waiting for a scan, during the scan, and waiting for the results of the scan.  Before I go any further I want to point out that not everyone needs the same scans and while certain scans are appropriate for one patient, they may not be appropriate for another.  Even among breast cancer patients with the same diagnosis, there may be factors that warrant a different approach to imaging studies.  Having scans is a double edged sword-you want the scan for your peace of mind but in the meantime you know you’re going to get all nerve wracked and distressed.

I remember the PET scan I had after my bilateral mastectomy.  I asked the technician when I might receive the results, and she said my doctor would probably want to meet with me to go over them.  I know these were the words she spoke but all I heard was “he will want to see you in person because the cancer spread everywhere and you’re dying and he won’t say that over the phone.”  Waiting for my oncologist to call with the results was like waiting for a clemency call from the Governor.  When he finally called with good news, I made him say it like four times.

During the expansion process last year, my plastic surgeon found a pea sized bump on the scar where my lymph nodes were removed.  An ultrasound was ordered which triggered an acute case of scanxiety.  The radiologist performing the ultrasound was even the same doctor who performed my fateful ultrasound in 2015.  As soon as that probe touched me, all manner of horrifying thoughts flooded my brain, and I had the worst déjà vu imaginable and then experienced flashes of my future with morbid thoughts of my funeral, my daughter growing up without me, taking my last breath.  In a matter of moments, I was in the depths of despair, imagining every macabre scenario.  Then I heard the radiologist saying something about a benign oil cyst, nothing to worry about and come back in six months.  After all that self-induced drama, it turned out to be an oil cyst/fat necrosis.  PHEW!  For now.  See, for those of us with breast cancer, or any type of cancer really, the anxiety is always there.  In my case, it’s been either all-consuming or bubbling just below the surface.  I will be headed back in a couple of weeks for a six month check of my oil cyst, so I decided I needed a plan to combat this fear.

There are methods I’ve found to deal with scanxiety and fear of recurrence so it does not rule my life.  When I’m feeling apprehensive about a doctor’s appointment or a procedure, or even a simple headache I’m convinced is brain metastasis, I go to my happy place in my mind.  Usually this is either on a beach somewhere with my family or a comfy hammock where I am reading my favorite book.  I practice deep breathing.  I blog about my thoughts, my reservations and my blessings.  I spend girl time with my daughter and appreciate the incredible young lady she’s becoming as she gets ready for high school.  I also found that focusing on helping others helps to distract me from my own worries.  I text my good friend whose husband recently went through Leukemia treatment and see how they are doing.  I check on my pink sisters and offer comfort and support.

I’m not going to lie, it’s not always easy and it is not something I learned overnight, but I have gained a measure of peace and that is something I wish for all my pink sisters.

Scanxiety happens to all of us.  Just know that you are normal if it happens to you too.  It’s ok to reach out to other pink sisters about your concerns.  They can probably relate and will help you through it.


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Kelly lives in Arizona with her husband, daughter, three cats and a bearded dragon named Pascal.  She was diagnosed with Stage 3 Invasive Lobular Carcinoma in 2015.  She can be found blogging about her good, bad and ugly experiences battling breast cancer at Kelly’s Cancer Beat Down Blog

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Every Day

By Sheryl De Witte

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I survived something that could have killed me.  I made it through with the prayers and help from my family, my friends, and my co-workers.

I was consumed by the emotions of fear and shock after receiving my diagnosis; everything moved quickly and was a blur. First were the chemo treatments, followed by a Bilateral Mastectomy and finally reconstruction.  That was it; I was done: I was told “there’s no evidence of disease”.  I was beyond excited and relieved, I had done it, and I had survived! It was time to get back to my life the way it was before breast cancer; everyone around me had already moved on, so why can’t I?

Every day I’m reminded that I had breast cancer. When I walk out of the shower in the morning, I can’t help but see the scars on my chest in the bathroom mirror.  Scars from the port surgeries are sometimes visible to others, but the large scars that haunt me are big and only seen by me and my husband.  They run from my sternum to under my arms and are intersected by another scar that goes up to where my nipples used to be.  There are more scars under my arms from where the lymph nodes were removed and the drains inserted.  I can’t help but remember when I first looked at myself a couple of days after surgery and how horrified I was at what I saw.  I looked like something out of a horror movie.  My breasts were gone and in their place I had large, angry looking incisions that had been sewn together.   I had horrible bruising, drainage tubes coming out of me, and I had no nipples.  Had I made the right choice?  This decision truly had been mine, and I thought I was prepared, but I wasn’t.

Every day I am frustrated by an increased anxiety which I do not understand and cannot seem to get under control.  It hits randomly and sometimes viciously.  I get apprehensive in groups of people, or when I’m waiting for something or someone.  It makes my stomach upset, so I never go anywhere without finding the nearest restroom and knowing my escape route. It limits me and makes me wish somedays that I never had to leave my house.

Every day I think about how I need to lose weight, how I should be eating only “healthy” foods and exercising.  But I’m tired, my energy hasn’t fully returned.  When I come home from work all I want to do is sit on the couch.  I try to not drink anything out of a plastic bottle, and I no longer use regular deodorant; instead I use the natural stuff because it’s supposed to be better for me.  I have no idea what caused my breast cancer; if I only knew then I would be certain to never eat or drink it again, or to never use that product anywhere.

Every day I get hot flashes.  My coworkers are all cold, and many have heaters on- not me, I’ve got my fan on, and I dress like it’s summer, even in the dead of a Minnesota winter.

Every day I try to get back to where I was before breast cancer, but I can’t.  You see my sister is dying from breast cancer.  Her cancer came back, even though she had done everything right.  She ate healthier, she exercised, and she had had Chemo, a Bilateral Mastectomy, Radiation and reconstruction.  Still, it came back with a vengeance.  She too had been told there was “no evidence of disease”.

I know I need to move on and not live with the fear of it coming back, but I don’t know how to do that.  I hope that over time my scars and anxiety will fade, and my confidence will come back just like my hair has.  In the meantime, I will do my best to carry myself like the warrior that I am.  I will strive to see the best in everyone and in every situation.  Most importantly, I will pray and rejoice that I have been given a second chance.  I will be thankful for every day that I have been given,  for every sunrise and sunset, for every bird I hear chirping, every flower I’m able to smell and for the time I spend with my family, my friends and my coworkers; because without them, I may not have made it this far.


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In Oct 2015, Sheryl was diagnosed with IDC.  Both of her sisters had previously had breast cancer, so it really shouldn’t have been a surprise to her, but it was.  She went through chemo followed by a bilateral mastectomy, and in July of 2016, she had reconstruction.  She did not need radiation as my cancer was Stage 1.