Going Off the DIEP End

Five years ago today, I had to get something off my chest.

It was my breasts.

I had a prophylactic double mastectomy with reconstruction (DIEP) December 1, 2006, a day I will know for the rest of my life. 

That day, I was made into a bionic woman of sorts. Abdominal arteries, muscle, and fat were tunneled up to create new man-made breasts, and my circulatory system was "rewired" so blood would flow in them. The nipples would be created and tatooed a few months later.

A lot of women envied me that day for getting "a boob job and a tummy tuck."

Now before I tell the truth about my experience with the DIEP and seem like an ingrate, here's a disclaimer: I wanted and needed the surgery, the DIEP was the best option for me, and if I had to do it all over again, I would have. (Well, except for the ICU part, which was so hellish, the devil has PTSD from the experience.) Nevertheless, here's an open letter to my surgeons, who touted this surgery as the best thing since sliced Beth bread:

Dear Doctors:

First of all, I want to thank you for your excellent work. Your dedication and caring have meant the world to me, and I will always be grateful to you.

However, I want to let you know about who I was before surgery and who I am now.

Before surgery, I was quite athletic and fit, although a three-time yoga class dropout due to my general clumsiness. I enjoyed running, swimming, and weight training. Other than that little breast cancer "incident," I was in excellent health. Before breast cancer, I liked my body. I wasn't vain; I just was glad to have what I was born with.

Cancer would forever change that.

After chemotherapy, radiation, and three lumpectomies, I wasn't so happy about what I was born with. Because what I was born with was deformed. Because what I was born with tried to kill me.

Add to that the loss of a great friend to breast cancer, a scare from the results of one of my MRIs, and general upheaval -- and you can see why I opted for a DIEP flap. I couldn't bear to wake up after surgery without breasts. I just wanted it all over in one fell swoop.

We all chose a surgery that would remove the deadly duo and give me breasts immediately. You all felt the surgery was a smashing success, and technically and medically speaking, it was. But as a human being first and foremost, not just a medical case, I see the success but also the drawbacks to the DIEP. The following is an account of my experience; I can speak for no one else but me:

Hospital Recovery

Once I was out of ICU and thus out of danger's way, my post-surgical self could stumble about my hospital room and look around. But I made a mistake.

I looked in the mirror.

My torso was sliced up, and the bloodied stiches looked like railroad tracks running all over my flesh. It was ugly, much like cancer, come to think of it. But the scars would heal.

Still Recovering

Five years after the multicolored bruising has disappeared, I am still recovering.

Now, five years later, I want to know why you assured me that the DIEP was perfect for someone with an active, athletically fit lifestyle.

Why didn't you tell me that I would suffer nearly crippling pain regularly from my compromised abdominal wall?

Why didn't you tell me that I would re-injure my torso almost every time I pick up my daughter?

Could you have predicted that now, five years later, I still cry some nights because I hurt so badly?

And do you know that the pain is especially tormenting because it is a constant throbbing reminder of breast cancer?

Where in our pre-surgery conversation was the term "chronic, life-long pain" ever mentioned? Was it lost among the beautiful before-and-after photos that kept me so optimistic?

I grieve that I can no longer run. I am thankful, though, that I can walk and swim.

I don't like myself when I'm in pain. I'm crabby, grouchy, depressed, and, well, crabby. I am trying my best to cope with relaxation techniques and to keep up the exercise. And then I feel guilty because I know that so many people have worse situations than me. I know how lucky I really am.

Mostly, I am still grateful to all of you. Because this surgery has given me a chance to see my daughter grow up. Notice I said "a chance." I know that there is no guarantee that I will live a long, healthy life.  (OK, I want a guarantee I will live a long, healthy life.)  But you and medical science have done the best for me.

I will live with and accept the pain and carry on.

Sincerely,

Beth

I'm writing a book titled Calling the Shots: Coaching Your Way Through the Medical System. Please feel free to subscribe to this blog by clicking the orange subscribe button. I am a professional writer and have published numerous academic and magazine articles, as well as an essay on my breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. I can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Calling the Shots in Your Medical Care

This blog-form column is designed to encourage and inspire people to take the reins of their own medical care. Whether you have advocated for yourself or a loved one, or you want to know tips on how to do so, this blog is for you.

I became a self-advocacy expert when I was diagnosed with breast cancer in January 2001. The road toward health has been fraught with difficulties, setbacks, losses, and suffering. But I am grateful to be alive and loved -- and to have a platform through which I can help others.

Every person who is diagnosed with any medical condition is unlucky. In particular, the "C" word in particular still fills people's hearts with dread.

In some respects, I was especially unlucky when I was diagnosed with breast cancer. At a relatively young age, I suffered through a lumpectomy, chemotherapy and radiation, constant medical testing, a few false alarms, and eventually a preventive double mastectomy with reconstruction. I had also become infertile as a result of the treatments. The ironic part of it all is that I was in excellent shape and fit.

But despite my diagnosis, I was also lucky: my cancer hadn’t spread, I had excellent doctors, and I had the best advocate in the world – myself.

Through self-advocacy, I caught my own breast cancer, prevented a recurrence, and ensured I received top-quality HMO medical care. Before my breast cancer diagnosis, I knew nothing about interacting with doctors and self-advocacy. Sure, I had routine exams, but like most people, I was intimidated by doctors and believed everything they told me. I was not immersed in the medical world. My breast cancer experience would change all that.

In my self-advocacy journey, I have taken actions that were unthinkable to my pre-cancer self: hiring and firing doctors, asserting my needs to medical personnel, scolding difficult medical staff – and in one instance allowing everyone on a train car to know my sordid, private medical details! (Curious? Stay tuned for a future blog.)

This blog will offer tips on how to advocate for your medical needs. Regardless of your condition, situation, prognosis, or ultimate outcome, too much is at stake to allow organizations and medical personnel to intimidate you and fully determine your fate.

You are the one who can call the shots in your own medical care.

During my public speaking engagements, people often ask my advice on how to find the right physician, what to do if they are unhappy with their doctors, or how to handle being dismissed by medical personnel. When others find out I advocated for myself, they want to talk with me about this topic. People need to know how to advocate for themselves.

Although you cannot always control your medical situation, remember this: you are the driver of your medical care, not a passenger.

When it comes to self-advocacy, you call the shots.

Beth L. Gainer is a professional writer and has published an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She teaches writing and literature at Robert Morris College in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.