Heroic Moments

Readers of my blog know what I've endured as a cancer patient and my gripes about the medical system and uncaring medical personnel. But there is something I've kept relatively quiet about -- until now.

Throughout my treatments, I was alone.

Alone.

See, my parents were devastated by the news of my cancer diagnosis and couldn't come with me during chemo and radiation and surgery. I no longer harbor resentment because I know they were suffering and so devastated by my illness. They just couldn't deal with it. I have since put that all behind me, and my parents and I have a close relationship now.

During this darkest period of my life, my then-husband refused to go to chemo sessions with me. He refused to go to my MRIs. I drove myself to chemo and radiation, and I drove myself back.

He also refused to work.

I worked two jobs -- while undergoing chemo and radiation simultaneously -- just to keep from losing our condo and having our car repossessed.  (Only took one sick day.) Success with the condo, no success with the car.

I walked everywhere even though I felt like sh**, and then I walked away from the marriage.

Yet, although I was technically alone, with the exception of a few close friends, I encountered many unexpected "heroes" -- those who nurtured my aching soul and made me realize I really wasn't so alone.  I am so grateful to them for those special moments that helped me heal emotionally. 

My medical oncologist. After crying to him about chemobrain, he held my hand and convinced me I wasn't stupid. He told me he cared about me. He became my hero that day.
My radiation oncologist. With her sunny disposition, a kind smile on her face and a wicked sense of humor, she made me laugh. I appreciated that moment when she was talking with another doctor, and I had told the nurse that I had a fever. The nurse told my radiation oncologist, and she immediately ended her conversation with the other doctor to tend to me.  Once she said, "You're so sweet; I just LOVE you!"
Nurses. During my biopsy, nurses rubbed my legs and called me "honey" and "sweetie." I needed to hear such tender words while I was feeling so vulnerable. And I want to especially thank the nurse who, during one of my meltdowns a few months later, held my sobbing self in her arms and rocked me like a baby. She gently wiped the tears from my eyes.

My chemo nurse knew I had nobody with me, so she tried to take time out of her crazy-busy schedule to sit down with me and just chat. She told me all about her life, her family, and we laughed a lot.

My surgeon. While he was performing my biopsy, I kept telling him that I didn't want it to be cancer. He said, "I don't want it to be cancer either." I appreciated his humanity.
The American Cancer Society. This organization provided a counselor who would coach me through the treatments. We spent hours on the phone.
My primary care physician. She referred me to all my great doctors and was working behind the scenes to ensure I got the right doctors. She spent a lot of time on the phone with me, as well.

I also found heroes in the extraordinary people I shared my chemo room with.

At first I didn't like the idea of sharing a room with other chemo patients. But in my case, having nobody with me, it was a blessing to be in the room with others. There was the man who served during World War II and was telling me all about his experiences. He told me that it was a shame I had cancer so young. I appreciated his empathy, and I hung onto every word of his war stories.

No matter whom I shared a room with, these patients -- upon finding out I was alone -- would try to cheer me up, even as chemo was being administered to them. They would share stories about their lives, and their family members would get me things to drink and would encourage me to stay healthy.

The most poignant experience I had in the chemo room, however, was when I shared it with a young woman whose breast cancer had spread. Things did not look good for her, but her parents were there by her side. They told me that she was their only child and they so loved her, so of course they were with her throughout all her treatments.

And, get this, despite their daughter's dire situation, her parents became my guardian angels that day of chemo, tending to both of us. They made sure I had a blanket, offered me jelly beans, got me things to drink, helped me navigate my way to the bathroom, and were so attentive to me, that I realized they had adopted me as their second daughter that day.

I will forever remember their kindness.

I am grateful to all my heroes and realize that, because of these wonderful moments, I was never really alone.

This posting is an excerpt from my upcoming book, Calling the Shots: Coaching Your Way Through the Medical System. To obtain these excerpts regularly, please 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/.

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.

"You're Fired!"

In a previous blog, I mentioned that I would share my know-how of hiring and firing doctors. Long before "the Donald" made "You're Fired!" the catch-phrase of the millenium, hiring and firing people was and is a part of doing business.

But despite all the sweet business deals to be had, there's no business more important than the hiring and firing of doctors. Your health -- and possibly your life -- depends on it.

Let's discuss the easiest part first: hiring doctors. You love a doctor and decide to use him or her. It's as simple as that. During your litmus tests of finding a gateway doctor or a specialist, you know this doctor is for you.

In more specialized circumstances -- like after you have met with a bunch of loser-doctors -- you can reveal during your interview that you are looking for that special doctor. For example, during the final planning of my mastectomy, I had the reconstruction surgeons lined up, but I needed a mastectomy surgeon.

The first thing I said to her was this: "I've got all my doctors in place -- except one. I need someone to do the mastectomy. I'm hoping you are the missing link." She laughed and said she hoped she was, too, and it turned out that she was a breast cancer survivor who had a single mastectomy and was sweet and kind and very empathetic.

I hired her on the spot.

(I didn't go into all the details about how the other two surgeons wanted to remove my ovaries and uterus and breasts. I also didn't tell her that, in my frustration with one of the organ grinders, I had the nerve to tell him that he might as well give me a sex-change operation, and alarmingly, the doctor just glared at me instead of laughing like his assistant.)

Now for the difficult part: how does one fire a doctor?

I wish I could tell you that I yelled at a doctor and pointed at him, saying "You're Fired!" as I stormed out of the office, but that would be false.

Truth is, it's always been really difficult and painful for me before, during, and after cancer to keep from crumbling under the authority of a doctor. In my previous blog, Say "No" to Thugs, I discuss how some doctors abuse their authority to bully their patients into compliance.

Here are the different ways I fired doctors (highlighted in red), and every case involved heartache and an embarrassing discovery that my mascara wasn't waterproof. You will notice that, except for a couple of times, "firing" meant simply walking away from these doctors.

**The surgeon who was so great to me during diagnosis and prognosis, but years later claimed it was unethical to do a preventive mastectomy: I flat-out told him he was wrong and that my gut instinct was right. He sneered at me, and I told him I was using another doctor.

**The gynecologist who lied to me when I was in my first trimester by telling me there was a 99.5% chance I'd carry this baby to term because he wanted to see me happy. I complained about him to his colleagues and never came back after my post-miscarriage D&C.

**The gynecologist who scolded me for my medical decision not to follow his advice. I left the office crying, but I never came back.

**The second-opinion oncologist who told me that if I didn't submit to his treatment, I'd be dead in a year -- causing me to leave yet another doctor's office crying. I called the first oncologist I saw, and he calmed me down and told me that I had no reason to believe that death was around the corner. I called the second-opinion guy and told him I would not take his advice and I was seeing another doctor.

These are just some of the doctors I fired, but they provide a very simple truth: we all have the capacity to advocate for ourselves and that firing doctors need not be dramatic -- and that sometimes the most courageous acts involve quietly walking away.

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 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.