Fear and PTSD

A cancer diagnosis of any type can bring on a whirlwind of emotions. Anxiety, depression and fear are the most common.  These emotions can get worse once treatment is over due to cancer-related post-traumatic-stress-disorder (PTSD).

In my case it all began with my breast cancer diagnosis during Breast Cancer Awareness month, October 2012, one month before my 46th birthday. I had a mass in my right breast that had started to burn and ache, so I took advantage of a program here in my city that provided mammograms for $100 during the month of October.  Since I had no insurance at the time, my general physician had to do the referral, and once he took a look at me, that simple mammogram turned into a diagnostic mammogram and ultrasound.  I was then brought in for a biopsy on my breast and right armpit.

While sitting in the dressing room after changing back into my clothes, my soon-to-be Nurse Navigator came in to give me the bad news.  I had three tumors in my right breast and the cancer had spread to the lymph nodes of my right armpit.  The official diagnosis was stage 3b Invasive Ductal Carcinoma (IDC) estrogen receptive-positive or ER-positive at 90%, that had metastasized to the lymph nodes.

Of course my very first thought was "am I going to die?"  My second thought was about losing my hair.  I had just spent the past 2 years getting my hair exactly how I wanted it after a bad haircut choice, and now I was going to lose it all.  My third thought was about my mother and how she was going to cope with all this. My fourth thought was about the man I had only been dating for about 2 1/2 months by this time.  Would he leave me? Would he decide this was too much to deal with after only knowing me such a short time?  And if I was going to die, dying all alone, without love, was even more frightening. This emotional roller coaster raged inside of me for the entire year of treatment and beyond.

Treatment consisted of: 6 rounds of chemotherapy (twice a month); a right modified radical mastectomy and removal of 15 lymph nodes; 8 more rounds of chemotherapy (every week); then 6 1/2 weeks of radiation every day except weekends; and finally, anti-hormone therapy with the drug Tamoxifen.  I was then thrown into physical therapy for the prevention of lymphedema which I was at high risk for in my right arm.  The movies they show you about lymphedema are so harrowing I would have done anything they asked to prevent that from ever happening to me! Next was the hypothyroidism diagnosis and a new medication I would have to take for the rest of my life. I will discuss this terrifying development in another post. I was in treatment from November 2012 to October 2013.

Now I know many of you are thinking.."But, you survived! What's the problem?"  The title of an article written by Katy Waldman, staff writer for the online magazine Slate.com, said it beautifully..."Stop Demanding Positivity From Cancer Survivors." Most people think that those of us fighting and surviving cancer should be warriors and have this super positive attitude about beating cancer.  First of all, our doctors did most of the hard work, we just showed up when they told us to, kept our support and caregivers close, and tried to stay positive.  I do not recall ever feeling like a warrior.  Not all survivors are up to the task of walking/running marathons, or being a warrior for the pink ribbon campaign!  Many of us fall into depression, anxiety, fear of recurrence and PTSD.

There is also a huge misconception that by leading a less than healthy lifestyle we gave ourselves cancer.  Truth is, even the healthiest people get cancer.  At my cancer center I met a woman who was a marathon runner, worked out every day since high school, was a vegetarian and all around health nut...she got breast cancer.  She felt betrayed and defeated by her healthy body.  It might have been a hereditary gene, or perhaps the environment, but she certainly did not do it to herself.

As a survivor I live in a state of fear everyday.  I fear for my future and find it hard to make any solid plans or set goals with such uncertainty.  I fear that I will never find love again.  That man I was dating at the time of my diagnosis? He eventually could not deal with the side effects of the drug Tamoxifen I was dealing with and stopped coming over, finding himself a new girlfriend online. I spoke to several women at my cancer center who told me similar stories.  One woman had been married for 25 years to - a doctor - with two children, a nice house, yet once she was diagnosed with breast cancer her husband divorced her and began dating a woman much younger than her.  Since then I have heard story after story revealing the same truth...men leave because, what...we are broken?  We are the same women, have the same soul, are capable of the same love, we are just missing one or both breasts! I truly find it difficult to not wish upon these men a bit of prostrate cancer and see how they feel then! But my soul is not that cruel. I do not wish cancer on anyone!

Then there is the fear of recurrence.  I recently read a statistic about my certain type of cancer that still gives me nightmares!  In an article written last year in the online magazine Scienceblogs.com, the writer stated that "conventional medicine doesn't consider breast cancer patients cured at five years.  We usually speak of ten year survival, because we know breast cancer, particularly estrogen receptor-positive breast cancer, can recur late, sometimes even 20 years later." I am only 3 years out of treatment and 2 years away from my oncologist giving me the "all clear."  But am I really clear? in 20 years I will be 70 and probably unable to endure this type of cancer treatment again.  So in my fearful mind, I tentatively only have 20 years to make something of my life before it's all over.  Of course as they say, I could still get hit by a bus tomorrow!

To most of you reading this it must all sound extremely dramatic and silly, but to someone living in this fear it can be debilitating.  There are days I simply cannot function because I cry so hard it hurts. Every post I write for this blog is written with tears on my cheeks.

While doing some research I found a list of typical cancer-related PTSD symptoms on the Mayo Clinic website and could not believe how many of them made me say "Yep, that's me!"  Here is that list:

• Problems sleeping because of intrusive dreams or flashbacks of trauma
• Feeling hopeless
• Memory problems
• Trouble concentrating
• Avoiding activities you once enjoyed
• Feelings of guilt or shame
• Irritability and anger
• Self-destructive behaviors, such as drinking too much or taking unusual risks
• Uncontrolled sadness and crying spells
• Hearing or seeing things that are not there

"It's normal to have some of these symptoms as a cancer survivor."

BreastCancer.org posted their own list as follows:

• Nightmares or flashbacks about the cancer experience
• Continuously focusing on the cancer experience
• Avoiding people, places and events that remind you of the experience
• Trouble sleeping
• Extreme irritableness 
• Intense feelings of fear
• Being overly excitable
• Feeling helpless or hopeless
• Shame or guilty feelings
• Bouts of crying
• Feeling emotionally numb
• Sadness or depression
• Loss of appetite
• Trouble maintaining personal relationships
• Self-destructive behavior (alcohol or drug abuse, for example)
• Memory problems
• Concentration problems
• Being startled or frightened easily
• Getting no joy from activities you used to enjoy
• Hallucinations

Other studies have added different symptoms to this list...

• Panic attacks
• Avoidance of follow-up checkups or other appointments, or anything you associate with your cancer or treatment
• Worry that any change in your body means your cancer has returned

Personally, every three months when I have my appointment for a checkup with my oncologist I fight the urge to cancel or reschedule.  When I get there I fidget in the waiting room.  Once in the exam room (for reasons I still cannot define) I start to cry. My oncologist is not only brilliant, but one of the nicest guys I have ever met and will always hug me and tell me I am beautiful, which only makes me cry harder!  Then, after they take 3-4 vials of my blood, I sit there impatiently waiting for the results hoping that it is negative and I am free to go home. After that measly 2 hours I am physically and mentally exhausted and now I have to wait a whole three months to do it all again!

Every time I get a back ache, a muscle spasm, achy joints or feel a strange lump anywhere on my body my mind races right to cancer and the panic sets in.  Every time I cough it is lung cancer! If I get a headache it is a brain tumor! It's like being a hypochondriac 24/7, even in your sleep.

So you see, while we did survive the disease, the life it left some of us with was no prize worthy of beating our chests in true warrior fashion and hopping on to the band wagon for the cause!  We struggle everyday just to go on, to force a smile, to find the energy to face the day alone, or to find sleep when the day is over.  I am a bit surprised I still have eyelashes due to all the tears I cry and I should probably buy stock in my tissue maker!

Image provided by Pixabay.com

Generation Chemo Brain

As the brilliant comedian George Carlin once said "That's the whole meaning of life isn't it? Trying to find a place for your stuff!" 

Having chemo brain is like trying to fill a storage unit with too much furniture; you have to get rid of some stuff to make room for more stuff. For me, the stuff I am forced to give up are my short term memory, word recall, attention span, concentration and multi-tasking.  I have started referring to this as having ADHD-OCD. And I am not even a Virgo! (that joke was for my Mother).

Before my diagnosis I was a multi-tasking maniac!  I could have an entire conversation without struggling to find the word I was looking for.  I had put myself back in college at 41 years old and was a master of the essay.  Once I began treatment I had to take a five month break from classes because it was so hard to retain information, read, or write, and my GPA was at risk.  Needless to say, I only attained my Associate Degree because I ran out of funds and the brain power to continue to the Bachelor Degree.  Life changing.  Sad.

The Mayo Clinic website describes the term chemo brain as "...a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment."  They go on to say... "Though chemo brain is a widely used term, it's misleading. It's unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors. Researchers are working to understand the memory changes that people with cancer experience."

Some people have suggested to me that it must be a combination of several other things such as the stress of a cancer diagnosis; medically-induced menopause; hormonal changes; related fatigue and/or insomnia; and medications.  All I know is my brain has not been the same since.  

This has forced me - and many others - to change the way we think and work.  Some have started to journal, others keep post-it notes all over the place.  Using the calendar function on my cell phone has helped me remember appointments by setting up the alerts to remind me a day or two in advance.  I kept showing up to appointments either at the wrong time or the wrong day entirely, and it was really starting to worry me.  With Alzheimer's in the family, it was a growing concern.

Enter friends and family.  We start to pull away because we find it harder and harder to communicate. The funny looks as we stumble around for the right word or forget what we were talking about all together, is almost too much to bear.  Facebook? Forget it!  I would scroll past about 3 or 4 posts and lack the concentration to keep going.  Isolation.  It is never intentional, but inevitable when you grow tired of trying to explain your chemo brain to everyone.  We start turning down invitations to socialize because we do not want to embarrass or humiliate ourselves. Well that, and in my case the fact that I only have one breast and am suffocating in my self-loathing.

I implore anyone with a friend or family member dealing with cancer to be patient.  Yes, coming from the queen of impatience this makes me sound like a total hypocrite but I am being serious here. A little patience and understanding goes a long way with us. Hey! If you know that word I am struggling to come up with, just blurt it out, I could use the help! You have no idea how many times I had to stop writing this post to look something up on Dictionary.com! Writing about chemo brain, while having chemo brain...priceless.

These days more and more people are surviving cancer than ever before.  This presents a new opportunity for the research community.  We have spent the last few decades researching a cure, while ignoring the cause. Now we need to focus on the long-term side effects from treatment that survivors are dealing with.  

Speak out. Talk to your doctors.  Talk to other cancer survivors. Read.  

❕ Let's start a movement before we forget what we were talking about ❕

Image provided by Pixabay.com