Reconstructing Self-image

"self-image (n.)

The conception that one has of oneself, including an assessment of qualities and personal worth." - Dictionary.com

During the course of our lives, this assessment changes depending on what we are going through at the time.  Body-image plays a big part in this assessment, and for many breast cancer survivors it is the only one we can focus on.  Many of us grew up playing with Barbie and Ken dolls, and that was our introduction to society's idea of the perfect body type.  

Over the past few decades the doll has evolved to represent other cultures and even promotes that children can be anything they want to be. However, the body type has remained relatively the same and so has our thinking.  They came up with tall, petite and curvy Barbie, yet she still has a slim waistline and healthy sized bust.

After a breast cancer diagnosis and mastectomy (of either one or both breasts) many of us begin to feel that we are no longer feminine or attractive.  Looking in the mirror becomes so painful for me at times, I just stand there and cry!  I adored my breasts, let me just put that out there. They were perfect.  Then immediately following that comes the question of "What do I wear?" I try on a dozen tops, tossing each next one to the floor in anger because they make me look lopsided or weird.  I now have no cleavage so v-necks or low-cut anything are out of the question because if I lean over even a little bit my scar becomes visible.  I also try to hide the scar from the port that was in my upper chest. I end up in the homely, baggy t-shirt or sweatshirt that sort of masks my chest.  I make sure every top I wear has a busy print to take the viewers eyes away from my lopsided chest.

Oh sure, after surgery they give you this prosthetic breast that slips into a panel in a special bra to make your figure even.  What they do not understand, is that without an actual breast to hold that side of the bra in place, the material moves all over the place, rubbing against my scar which is still 70% numb and that is extremely uncomfortable.  All the adjusting and fidgeting just draws even more attention to my chest.  I also had 15 lymphnodes removed in that armpit and I am at high risk of developing lymphedema in that arm so having anything that restrictive around my torso is not a very good idea.  Add to that the compression sleeve I am supposed to wear, I feel so bound up it drives me insane.

In 2015 the Breast Cancer Patient Education Act was passed requiring that all doctors involved with diagnosing and treating breast cancer inform their patients about their breast reconstruction options and mandatory insurance coverage before treatment begins.  Most women have breast reconstruction after a mastectomy.  Some decide not to have this reconstructive surgery because they have had enough pain and down time for recovery that they simply do not wish to go through all of that again. Others, like myself, are unable to get reconstruction for one reason or another.  For me, it was my insurance.

The Women's Health and Cancer Rights Act of 1998 mandates that all insurance carriers must cover the cost of breast reconstruction after a mastectomy or lumpectomy.  What it does NOT do is mandate that all doctors must accept that insurance.  Doctors are allowed to pick and choose what insurance they will accept or not accept, turning away certain patients based on what insurance they carry. Breast reconstruction is done by a plastic surgeon, not the surgeon who originally does the actual mastectomy.  There are literally no plastic surgeons in my state that accept my insurance for this reconstruction.  They want thousands of dollars in cash.  I just went through an entire year of breast cancer treatment.  What cash do they think I have??

The normal process for this procedure is that after the mastectomy itself, a plastic surgeon is present to take over and perform the reconstruction.  If this is not possible for whatever reason, the original surgeon will attempt to leave plenty of skin available for a tissue expander to be placed there until reconstruction can be done.  In my case, my surgeon could not find a plastic surgeon who would accept my insurance, and there was no guarantee I would find one any time soon, so she attempted to leave enough skin just in case, but did not put in the tissue expander.  I then finished my second round of chemotherapy and finally radiation.  At this point, reconstruction becomes less and less advisable because after radiation the skin has a lesser chance of healing from another surgery.  Now that extra skin is an eyesore and makes wearing a bra even more uncomfortable.

Three years later I have still not found one plastic surgeon who would accept my insurance, either here in my state or in several other states I have had friends check on for me.  Is there not one out there that has any sympathy for a breast cancer survivor?  Why did they become plastic surgeons in the first place? To help us all look and feel better? Or was it the money?  If the Women's Health and Cancer Rights Act of 1998 forces insurance companies to pay for this surgery, why would none of these surgeons accept it??  This makes absolutely no sense to me.

I think back to a question my original surgeon asked me before the surgery. "Do you want to remove just the diseased breast, or both of them to be safe?"  At that time I had been promised reconstruction so why would I remove both?  I was told they could build up the breast to the same size as my existing one, and even work on the healthy one to make them both perky again! I was about to buy a t-shirt that said "Of course they're fake, the real ones tried to kill me!"  You can only imagine the huge let down and blow to my self-image. I am now trying to just be OK with my scars and lopsidedness.  

Had I removed both at least my chest would be even now...

Things are, however, looking up.  Thanks to websites like Leave Me Breastless that provide fashion ideas for survivors who have chosen not to have reconstruction, we now have some advice on how to buy and wear clothing to help restore some semblance of a healthy self-image.  I am still working on that.

© Image copyright Janis Harner 2017

Lost in Transition

A short film/video by the Institute of Medicine about the problems that come up after cancer patients successfully end treatment and look into follow up.

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