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.

Dr. No

As I write this, a dear friend is battling the medical system in order to get a surgery she needs. She is in agony, and if her doctor and pharmacists had their druthers, they'd keep her that way. Once the surgery is done, she should be feeling better.

Her doctor had a hissy fit last night because she called his bluff.

He thought he could dismiss her and shut her up by prescribing Vicodin, a move that did nothing for the pain. He thought she would choose inaction while he scratched his butt with his golden-surgeon hands. He thought she wouldn't advocate for herself.

And he still thinks he doesn't have to do what is right -- schedule the damn surgery. (He did reluctantly acknowledge the surgery was necessary.)

OK, back to this arrogant jerk's hissy fit. After my friend called his office repeatedly to relay that the Vicodin wasn't making a dent in the pain, Dr. No finally called her back and said off the cuff: "Well, if the Vicodin isn't working, you should be calling me from the emergency room."

So she took him at face value -- and went to the emergency room.

And the hospital admitted her overnight for pain management. She had carte blanche to painkillers like morphine.

Dr. No-Brains was taken aback -- flabbergasted in fact -- when he saw that she actually went to the emergency room and was receiving the Mercedes painkiller treatment. He released her after scolding her and then saying he didn't know when the surgery would be and that she could double the dose of her Vicodin.

I want so badly to help my friend, who recently suggested that I be like Cyrano de Bergerac and hide behind the gauze while I tell her the words she needed to woo the doctor into a state of obedience.

Unfortunately, some doctors are jerks. Dr. No needs to be fired by his patients -- and with gusto. I know my friend will ultimately get what she wants and needs, but this doctor believes he can just toy with his patients' suffering.

By the time he came to my friend's room late last night, he said he was delivering babies all day, so she said sarcastically, "Yeah, you look real worn out." I took joy in her mouthing off at him and felt the urge to rub the salt in the wound by telling him that cats and dogs can give birth without doctors, and the local yokel at the hospital could do his job.

The key is, my friend is now resting comfortably and she will ultimately get her needs met.

I just hope it's sooner than later.

Beth L. Gainer is a professional writer and has published numerous academic and magazine articles, as well as an essay on her breast cancer experience in the anthology Voices of Breast Cancer by LaChance Publishing. She writes about a potpourri of topics, including motherhood and her Chinese adoption experience at http://currents-living-discovery.blogspot.com/, and her cat Hemi blogs at http://www.catterchatter.blogspot.com/. Beth teaches writing and literature at Robert Morris University in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

Who's Afraid of the Big Bad Medical Administrator?

Answer: Not the patient.

As covered in previous blogs, when navigating the medical system, bully/incompetent doctors are just one of the many hurdles you face. Other huge hurdles that we patients face include those administrators whose job, it seems, is to make life difficult for us.

As if dealing with illness and life-threatening conditions weren't enough.

I am beginning this posting with a caveat: most of the medical staff I've encountered have been helpful and kind. Most of the time, my doctor visits have been made more pleasant and relaxing -- all because of the administrative staff -- such as receptionists, medical assistants, records people -- who do have a difficult job and often have to deal with rude patients.

However, it's more fun for readers if I trash the administrators who have overstepped their bounds.

And more than anything, I'm hoping that this posting can help you stand up to rude administrators who seem bent on placing hurdles in your way or being rude and inappropriate during your visit to the office. I speak from experience and will discuss two memorable altercations I had with administrative bullies.

Ironically, I'm grateful for these experiences because they taught me the incredible power patients have.


Show Me the Money

When dealing with a potential or existing medical problem, the last thing you need to hear is a medical staff member discussing money matters with you. This type of insensitivity to your needs is unacceptable.

In my case, I was in my surgeon's waiting room only a few days after being told that an MRI revealed something suspicious, and I was scared -- like crap in your pants scared -- that it was a recurrence. Fresh in my memory was my great friend dying of breast cancer only a few months before, and I was deep in thought, wondering if I would share the same fate. My surgeon was going to examine me and schedule a biopsy.

The receptionist interrupted my panic-stricken what-if scenarios by calling me up to her desk. Imagine my disbelief when she looked in my tear-reddened eyes and informed me that I owed some money and would I like to pay it now or later. She started talking in a not-so-low voice about the amount I owed. In shock, I stammered something about being billed later. I couldn't psychologically deal with one more stressor.

I sat back down, crushed. I was embarrassed, wondering if others in the waiting room overheard this conversation. The tears of humiliation stung my sleep-deprived eyes.

Then my fighting spirit took over. I wanted my dignity and self-respect back. I walked back to the receptionist and told her in a not-so-low voice, "You know, I am grappling with a possible breast cancer recurrence, and I can't believe you have the audacity to discuss my bill at a time like this!" Before she could stop stammering, I added, "You and anyone in your office are never, ever to discuss anything bill-related with me in this office."

Now it was she who was crushed. I turned around abruptly and got back to thinking my fate. She and the rest of the administrative staff treated me like gold that day. One would think I was a celebutant. And I felt empowered, even though I was bracing for terrible news.


The Dreaded Record Keeper

In my posting A Train Car Named Quagmire, I discuss how I fought to get records transferred from one physician's office to another. Records departments simply amaze me. They are able to provide services and obtain records lickety-split when a doctor requests them, but not when a patient does.


In my case, the enemy was the center where I had follow-up mammograms and any pre-surgery labwork. Interestingly, whichever individual happened to be at the front desk was always rude and cold to me. I found it intimidating and passively tolerated their mistreatment and utter disrespect. Luckily, the technicians were nice, but the technicians unfortunately had nothing to do with ensuring records were delivered when they were supposed to be delivered.

My mammogram films and report were supposed to be ready for me to pick up before I saw my doctor who always wanted to see them during my visit (I did call the records department ahead of time and followed all the protocols). Yet, about 50% of the time they weren't ready, and I had to go to the doctor sans mammogram, which arrived a few days later.

And for someone who has been through a cancer experience, waiting a few days is like waiting an eternity.

I called the center to complain about the mishandling of these mammograms and, after speaking to several impolite personnel, I finally got a friendly staff member. I told her that since I already had breast cancer and very dense breast tissue, my mammograms needed careful inspection by my surgeon on time and that such mishaps could one day cost me my life.

She said, "Aw, honey, you're not likely to get breast cancer again." I volleyed back: "How do you know that? You can't tell a patient that! It is vital that your office ensures prompt and accurate delivery of my mammogram films and results." (Turns out that years later after my preventive mastectomy and reconstruction, the labwork indicated I had oodles of precancerous cells and would've had a recurrence in a few years.)

I asserted myself to my surgeon -- I politely insisted that, with my history of breast cancer, it wasn't prudent for me to to get follow-up mammograms at an unreliable place and from now on, I wanted my mammograms done at the hospital's far superior breast center. The stakes were too high, I explained, to allow this center to determine my medical fate.

He agreed, and I never had such problems again. Victory!

Fast-forward a few years later. I needed to go to this center for pre-surgery bloodwork. I was getting my preventive double mastectomy with reconstruction, so it was a stressful time for me. My doctor sent the center an electronic referral so I wouldn't need a hard copy. So I showed up a week before surgery, as directed, without a hard copy referral.

By now I was prepared for the staff's lack of respect, and I was determined to not tolerate abuse.

Sure enough, the receptionist rudely insisted I needed a hard copy referral -- even though she had printed out the electronic version! She rudely directed me to an intake person at another desk, who coldly said the center couldn't do labwork without a hard copy referral.

I told her that I was having major surgery in a week and needed the labwork ASAP. She responded that the center would do the labwork, but only if I signed a form agreeing to pay for the procedure should my insurance not cover it because the referral was electronic.

(No, it doesn't make sense to me either.)

She shoved the form toward me, and that's where my civil disobedience kicked in. I told her, "You know, every time I come to this office, I am treated rudely and with disrespect. I demand respect. I am having major surgery next week, and I followed the correct protocol. So I refuse to sign it."

Her eyes widened in shock, and then she scribbled something on the form. I asked her what she was writing, and she said "Patient refuses to sign form." Pleased with my self-advocacy, I said, "Good!"

I got my bloodwork that day and didn't pay a cent.

When I relayed this interaction to my friends, they said they never knew they could refuse to sign such a form.

Well, now they -- and you -- know. While we want to be civil and treat medical staff with respect, when we find ourselves bullied by them, we don't have to passively comply.

Your voice needs to be heard, and you simply cannot tolerate disrespect from administrators.

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 University Illinois in the Chicago area. She can be contacted at bethlgainer@gmail.com and gainercallingtheshots@gmail.com.

A Train Car Named Quagmire

In a previous blog, I mentioned an instance where I aired my dirty medical laundry on a train car to get what I wanted and needed from the administrative side of the medical system.

This is that episode.

The drama unfolded with me as lead actor, director, and writer of my medical destiny -- oh, and a train car packed with complete strangers who had no idea that their ticket purchases to downtown Chicago included entertainment. Well, that day, they got a lot of bang for their buck.

The situation: I had an appointment with a mastectomy surgeon the next day. Her office had squeezed me in quickly, as my surgery date would be in two months. I had just found out about the appointment that very morning. Understandably, her office needed my medical records faxed from another doctor's office ASAP.

It took a 45-minute phone fight, with me as victor, and, as it turns out, a crowd of strangers cheering for me.

When it comes to advocating for yourself, you must be willing to shamelessly share your situation within earshot of strangers. This is because medical staff and each of us have limited availability, and, well, you sometimes have to snatch that narrow window of time you have to make that call.

Even if you are in a bathroom stall. Even if you are on a train car.

Here's how my drama unfolded that very eventful day:

Needing my records faxed and knowing I'd be unavailable the entire afternoon, I make the call while on the train. The prissy record gatekeeper is refusing to fax my records to my surgeon's office. By the time I make the call, I am pissed off, tired, and my frustration has turned to steely determination.

MissyPrissy says it normally takes a week or two to transfer medical records, and I'm, like, "huh?" Then she scolds me for asking for the office to fax the records the day before the appointment and says that I should know better. I calmly explain that this mastectomy surgeon's office fit me in at the last minute because of the urgency of my medical situation and that's why I need the records delivered on such short notice. I just found out this morning I am seeing her tomorrow.

To my dismay, she counters that there are protocols to follow and that the office can't just fax records willy nilly whenever a patient asks for them. I remind her that the surgeon is the one who wants to see me immediately and wants my medical records before my appointment. The administrator says her office's policy is strict, and if they make an exception for me, then they are going to have to make it for every patient. So sorry, but no tumbling dice.

I say, "OK" and end the conversation. I cry quietly -- after all, it's OK for the whole train car to know my breasts are coming off, but I don't want anyone seeing me cry. (Yes, I'm train car-decorum- challenged.) I feel defeated.

Then I think of that famous and my favorite poem "Don't Quit," and I recalled a line: "Rest if you must, but don't you quit." I had the wind knocked out of me. That was my rest.

I would not quit.

I call the office again. The Records Nazi recognizes my voice and is amazed that I have the audacity to come back for more abuse. As she starts telling me her office's decision is final, I interrupt her with a blitzkrieg of my own: "I don't want to speak with you anymore. Give me your office manager."

Shocked at my irreverence, she complies.

When the office manager gets on the phone, she tells me she cannot go against the office protocol regarding sending records to a doctor's office.

Suddenly, I take a different approach: emotional manipulation -- and this is the turning point that gives me the upper hand in getting what I want and need.

Although my chemobrain cannot retain information well, I do remember our dialogue verbatim:

Me (seeming to change the subject): "Do you know I'm adopting a baby girl from China?"
She (disarmed): "Awww, how sweet!"
Me: "Well, how would you feel if she no longer had her mommy?"
She: "That would be terrible!"
Me (not wasting a minute): "Well, that will happen if I don't get my surgery. Your office's refusal to deliver my medical records today may delay my surgery and ultimately harm me. How would you like to tell my daughter that she no longer has a mommy?"
She (emotional): "Please don't talk that way! We don't want your child to be motherless. Let me see what I can do to get your records to the surgeon's office."

I thank her and literally two minutes later -- no I really mean literally two minutes -- the Records Nazi humbly calls me back and says the records have just been faxed to the surgeon's office. My surgeon's office calls me a few minutes later to confirm this.

I am exiting the train in shock at my own power to advocate for myself -- and in shock that I'm able to stand on trembling legs and that I am evoking smiles and congratulations from so many people in the car. Then a gentleman who was sitting far from me on this journey approaches me. He says, "Ma'am, I hope you don't mind, but I overheard your entire conversation, and all I can say is, 'Good for you!'"

That's when I realize how loud I must've been. I thank him and apologize for being so loud.

He says, "It was great hearing you not taking nonsense from those people. Your health is the most important thing in the world, and it's about time someone put these medical people in their place! Good luck with your surgery; my thoughts are with you."

At this point, I'm reeling. I am happy to have such a fan base, but then I wince as I remember saying the words "double mastectomy" and "breast cancer" so often during my conversations on the train. Everyone on my car had heard the sordid details.

As I leave the train, I see a Breast Cancer Awareness Month ad on the wall of the vestibule. I remember it is October. And on that train car, in front of a group of strangers, it turns out that my face was the face of breast cancer. But it was also the face of self-advocacy.

And as I walk on shaky legs, but not on shaky ground anymore, I think that perhaps I became someone's role model and hero that day. And I realize I have become my own hero that day, as well.