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.

The ABCs of HMOs

Awhile ago, I mentioned that I would address the topic of HMOs and why they are not necessarily the enemy of quality medical treatment. This is the topic of this posting.

Disclaimer: I can only speak from my experience and about my particular HMO, and I am not a paid promoter of HMOs.

OK, now that we got that out of the way, let's delve into the world of managed care, as well as how you can best make the HMO work for you.

Advantages of HMOs over PPOs

As one of the people lucky enough to have medical insurance, I am very happy with my HMO. Some primary care physician groups do not have quality doctors, I'm sure, but I selected my primary care physician based on a group affliated with a first-rate hospital.

Unlike the horror stories you hear in the media, my HMO doctors are outstanding.

Through my HMO, I was able to get all my cancer treatment -- chemo, surgery, radiation, etc. -- free of charge. Trust me, I saw the statements of all the charges I would have owed -- enough to give anyone heart trouble and a new set of specialists -- and I know that with a PPO I would've had to pay a certain portion of it, and a small portion would've still been a ga-zillion dollars.

Also, what PPOs don't emphasize is that they have a ceiling, where they won't pay anymore after a certain amount of funds are exhausted. The cap is a high amount, so it's not a problem for routine problems and conditions, but cancer treatments and reconstructive surgery would have driven a sledgehammer through a PPO's ceiling, and expenses would've gone through the roof.

HMO: That's A-Okay

Another little-known fact is this: many HMOs will cover a medically necessary procedure done by out-of-network doctors -- if the primary care physician, also known as the gateway doctor, advocates on your behalf. That is why it's so important to have an excellent relationship with your gateway doctor and to hire the best one for your needs.

When you have an excellent gateway doctor, the HMO experience can be wonderful. That's the key: finding and hiring that gateway doctor to help you help the HMO meet your needs.

In my situation, I needed a double mastectomy with reconstruction. Because I was young, fit, and active, a double tram flap procedure was not an option because too much abdominal muscle would be removed, and I might not ever be able to sit up on my own. According to my doctors, the procedure I needed to reconstruct both breasts was a Diep flap, a more cutting-edge surgery (pun intended), designed to preserve as much of my abdominal wall as possible.

One doctor of reconstructive surgery who was recommended to me by many medical professionals was out of my HMO network, although affiliated with my hospital. I wanted him as my surgeon, but as he was out of network, my gateway doctor said that in order to make a case to the HMO that I needed the skilled Diep flap surgeon, I had to first see the in-network plastic surgeon to ask his recommendations. While I dreaded this pain-in-the-butt step, it had to be done, explained my doctor, as she and my oncologist were drafting their letters on why I needed the Diep flap procedure.

Here was the key on which my fate would turn: If the in-network plastic surgeon could do the Diep flap, then he would be my surgeon. However, when I saw him, he said I needed the Diep flap, but he is not skilled in this arena, and I'd need to go out of network. He drafted a letter on my behalf to the HMO, stating that I needed this procedure that he did not perform.

A few weeks later, the HMO came to its conclusion: It would cover the ENTIRE cost of the Diep flap, hospital stay, and all followups as needed. And, because my surgeon needed a doctor skilled in this type of surgery to help him (also out-of-network), the HMO paid for that additional surgeon as well.

Cost to me: 0 cents. Cost to my quality of life: priceless.

Whether you have an HMO or PPO, though, the key is to have the right doctors in place, so if a time of medical need arises, they will advocate for you.

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. She also blogs on the adventures of her cats, Hemi and Cosette, at http://www.catterchatter.blogspot.com/.