Carrying the Cards You’ve Been Dealt….With Hope

Posted on: May 29th, 2009 by
2

This posting is about hope.

Patients need hope that they can be healed, that they can have minimal suffering, that their families are there beside them, etc. Many find solace in religious faith and/or in knowing that their loved ones are there to support them in time of a medical crisis.

It is a doctor’s responsibility to give you accurate information in a respectful manner and to offer some solace without sugar coating anything.

There’s no room for excess drama in a doctor’s office. That should be saved for Grey’s Anatomy and Dr. McDreamy or Dr. McSteamy, or whatever name he goes by.

Until this week, my hope in my bone health was faltering, all because of a pessimistic doctor who reviewed my dexa scan (bone density test) results as if he were an actor playing a doctor and as if he were full of knowledge.

Instead, he was full of crap.

Several months ago I had a dexa scan because I now have osteopenia, thanks to a faulty genetic line, premature menopause caused by chemotherapy — and, oh yeah, the chemotherapy itself, which harms bones. Despite my drinking milk, taking calcium supplements, and doing weight-bearing exercises and being athletically fit, I was still losing bone. So I was put on Fosamax once a week the year prior to this year’s dexa scan, in hopes that this medicine would increase my bone mass.

And the verdict was in! My bone mass went up significantly. I felt invincible, like a literate Rocky Balboa. But I am somewhat data challenged, so I went to a family practice doctor whom I used to like. My PCP wasn’t in that day.

He said, “These are significant numbers, but for a person as young as you, these are very, very bad results. And there’s nowhere for you to go but down.”

I was crushed. All I wanted was a glimmer of hope.

After all, bone density increasing is good news. Period. And yet, he reduced me nearly to tears. Was this the way Rocky felt when Apollo Creed gave him a good whack?

Defiantly, I told Dr. Downer that I endured surgery and chemotherapy and radiation, and I believed that I could continue to increase my bone density further because I’m so proactive in my health.

He stared at me blankly and said, “That’s not going to happen. No matter what you do, your bones are going to continue to deteriorate. As I said, there’s no place for you to go but down.”

I left depressed. Without hope. I figured — misguidedly — that there was no hope of building my bone mass, so there was no point in staying in shape. I did very little exercising, compared to the workouts I used to do when I thought they were benefiting me. But then, in a few weeks, I rallied, figuring exercise has other benefits, such as stress reduction, cardiovascular health, and its contribution to wellness. So I was back on the road again.

Flash forward to this week, when I saw my oncologist for my routine followup, who is dedicated and tries his best to give his patients hope without sugar coating anything. I don’t know what made me think of the dexa scan at the end of the appointment, but I told him I had gained bone mass this year.

My oncologist was so different from Doctor Grim Creeper whom I saw months before. My oncologist said, “Great! That is GREAT news!” I then asked him the question, afraid to hear the answer, but knowing if I must hear bad news, it’s best coming from him.

“So, is it possible that I can build even more bone mass in the future?” And to my shock he said, “Absolutely!” So I asked him with disbelief, “Really?” And he said, “Yes. It’s very possible.”

I had already started my jogging/walking routine before I saw my oncologist, but now I do it with much more hope and zest and a smile on my face. Next year’s dexa scan results are unpredictable, but I now have hope to hold onto — the hope that I can accept the hand I’m dealt, but also the hope that I can play the hand as well as possible.

Oh and about that first doctor — he’s so fired.

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.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Those Nasty Gatekeepers

Posted on: May 23rd, 2009 by
3

Well, it’s that time of the year: the birds are singing, plants are flowering, trees are blossoming — oh, and for me, it’s doctor season.

This is that time of year when I have to put all my doctors in a row. On Tuesday, I see my oncologist. I believe I get a double whammy the following week, seeing my mastectomy and plastic surgeons. Luckily, I love my doctors, and I’m fortunate these are routine follow-ups.

However, some routines I can’t stand. I really don’t like going to doctors because it is so scary and I usually have to have a variety of activities to keep me from crumbling into one big fearball. (Curbing fear in a doctor’s office will be discussed in a future blog.)

However, the routine I hate the most is making appointments with those nasty gatekeepers: you know them — the dreaded receptionists and operators who were born just to make your life difficult. These people, given orders from somewhere to cut corners, or maybe because they enjoy making the patient’s life miserable, try to give you an appointment with a nurse’s assistant or a physician’s assistant when it’s clear you want and need to see the doctor. (Many receptionists and operators are nice and comply with your needs, but several are not, and these people are the ones I’m talking about.)

You have the right to see the doctor, not an assistant, if that is your will. And that means assertiveness and focus. After all, what is your insurance or your own pocket paying for?

I had such an incident just this week. I made an appointment with two of the three doctors with no problem. When it came to a final followup with the reconstructive surgeon, that was another matter. The gatekeeper figured it was a routine followup, so she could just send my case to some sort of “surgical assistant” I had never heard of or met. In the end, through my persistence and repetition, the gatekeeper complied with my request to see my doctor.

Here’s how the dialogue went (the names have been changed to protect the innocent and the guilty):

Me: I want to see Dr. Reconstruction for my final routine exam.
Receptionist: Well, the doctor’s schedule is limited, and he doesn’t do these type of routine exams anymore, so we’d have to give you a surgical assistant.
Me: What? He did my last followup. No, I need to see him. What days is he available?
Receptionist: Well, he’s in surgery a lot of Fridays.
Me: What about Monday through Thursday? Surely he must be available sometime. He told me specifically he wanted to see me at least one last time.
Receptionist: Well, our surgical assistant, Bambi, is very good and knows how to give an exam.
Me: Bambi might be very good, but I need to see the doctor, and the doctor only. I have had breast cancer and a complicated double mastectomy with reconstruction, and this is no time to mess around with someone unfamiliar with my case.
Receptionist: But Bambi —
Me: (Cutting her off): I will see the doctor. When is he available?
Her: (Begrudgingly): How about June 3 at 10 a.m.?
Me: I’m seeing the doctor?
Her: Yes, Dr. Reconstruction.
Me: (Summing it up): OK, so just to reiterate: I’m seeing Dr. Reconstruction June 3 at 10 a.m.
Her: Yes, see you then.
Me: Thank you very much.

I guess the key is, you must be persistent by plowing through all the nonsense that unfeeling or uncaring medical staff throw at you. It would’ve been easier to be complacent, but in the long run it would not have been the right choice for me.

Often the things we know are worth having — like appointments with quality doctors — are worth fighting for.

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.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

The ‘Why’ Factor

Posted on: May 17th, 2009 by
2

To be a patient is to be a detective of sorts. You and the doctor need to work together to put figure out what is happening — or not happening — in your body. This doesn’t mean that the mystery will be solved, but a doctor’s job is to figure out what the problem is and, if possible, how to remedy it or alleviate it.

Gleaning the “why,” “what,” and “how” out of doctors is your job.

And that is somewhat harder because it requires courage to ask “why,” because it may piss a doctor off, and result in getting an unsatisfactory response or lack of empathy. By satisfactory response, I am not referring to getting good medical news, but getting a response that answers your question(s) to your satisfaction. Perfectly valid questions that you, the patient, have carte blanche to ask include:

    • Why do I need this treatment regimen instead of this other one?

 

  • How does this medicine affect the body?

 

 

  • What are the side effects of this treatment/medicine?

 

 

 

For example, I was lucky enough to have my surgeon actually do my biopsy outpatient (I was conscious with a local anaestheic). And “why?” was the question foremost on my mind. He had just told me that the biopsy had to be done now because he had a strong feeling…he could tell…the mammogram revealed something that was likely cancer. No time to waste.

So during the procedure, I started with a search for empathy. I told him I didn’t want it to be cancer (as if any patient would want that!), and his answer showed his kindness. He said, “I don’t want it to be either.” I felt so much better knowing that he was really on my team, and that I was important to him.

Then I asked him “why?” After all, I explained, I was young, never smoked, drank, or did drugs, exercised regularly, had a healthy family, and ate healthy foods. I thought that if my being a Ms. Goody-Two-Shoes targeted me for ridicule, at least I would have one perk: good health.

My surgeon gave me a truthful answer, which is why it satisfied me: “I don’t know. I don’t know why a person like you would get cancer.”

Sometimes the simplest answers are the right ones, and in this case, “I don’t know” helped me realize that doctors weren’t magicians and they didn’t know everything. His response also empowered me because prior to the biopsy, I had mulled over and over again in my mind — even though I sensed, but didn’t know if the abnormal mass was cancer — what I could’ve possibly done to cause it.

I also asked every doctor thereafter “why?” I guess deep down I needed to conduct an informal poll of doctors’ opinions as to why I got cancer. One doctor blamed me for not having children and tried to find flaws in my lifestyle. I left his office deflated.

So I decided to stand by the surgeon’s response, “I don’t know.”

In this day and age, the blame game runs rampant, and we hear all sorts of nonsense about how to prevent cancer. It’s human nature to want to know what causes — and how to prevent — all sorts of maladies. Eating healthy and not smoking improve the odds of health and longevity, but I have learned that a healthy lifestyle is no guarantee of a healthy life.

Still, I eat healthy as I’ve always done — lots of fruits and veggies, grains, chicken and salmon, among others. I am going to start jogging again soon. Rather than believe that I’m doing this to prevent cancer and other serious conditions, I choose to believe that a healthy lifestyle provides a good foundation for a good life.

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.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

‘You’re Too Young for Breast Cancer’

Posted on: May 11th, 2009 by
4

You need to be taken seriously, no matter your age. As someone who went through breast cancer at a young age, I can speak to the younger person’s perspective. I’m using my experience, but you could substitute any condition, and the activism involved is the same process.

Quite a number of doctors told me I was too young for cancer, even while a tumor was growing in my right breast. (Trust me, I fired all these jokers, replacing them with real doctors who listened to my concerns and took me seriously.)

I had a negative baseline mammogram only a few months before I found my own breast cancer through my regular monthly exam. The mammogram report was ominous: it said it was negative for any abnormalities, but that my breast tissue was exceedingly dense, so this was a limitation. (Dense breast tissue looks white on a mammogram. The problem, especially for many younger women, is that tumors are also white on a mammogram.)

Looking back, I wish I hadn’t passively allowed that good test result lull me into a false sense of security.

Because my tumor was still there.

A few months later, still thinking I was healthy, I went to my trusted gynecologist for my routine exam. He found nothing wrong, so thumbs-up! When I questioned the “dense breast tissue” comment on the report, he assured me that I was too young for breast cancer.

It wasn’t until I did my monthly breast exam a couple of weeks later that I saw a slight dimple in my right breast. I was scared, but I kept reassuring myself with his words that I was too young for cancer. But just to be on the safe side, I went to him for another exam and told him what I found. He couldn’t find it at first, but then he felt a slight lump and said it probably was nothing, but that he’d refer me to the hospital’s breast center just in case.

And a technician with the vision of a hawk found the tumor — despite the whiteness dominating the X-ray.

Younger women (and any women with dense breast tissue for that matter) have more difficulty in with the accuracy of mammogram than their older counterparts. Don’t get me wrong; mammograms are a must and still are the gold standard. But with this test, older women tend to have the advantage. As women age, their breast tissue is less dense and shows up as black on the X-ray, so a white tumor lights up like a torch.

So here’s my advice to all readers out there: be wary of any doctor who tells you that you are too young for certain conditions. Young people get sick, and a visit to any children’s hospital should humble the most dismissive of doctors.

I was grateful to this doctor for referring me to this specialized breast center. That saved my life. But he didn’t save my life; I did. Because he was lulled into complacency that younger people — especially physically fit ones with no history of major illness — don’t get breast cancer, he dropped the ball.

So I dropped that doctor.

It took my vigilance to save my life.

That being said, medical science needs to change to accommodate younger women and others with dense breast tissue. Doctors should refer such women to MRIs and/or ultrasounds, which pick up what a mammogram might miss.

Mammograms are still very useful and have saved many lives, which is why they are still the gold standard. But as medical science changes and as the profile of the patient changes, diagnostic testing must also change.

We are so inundated with information on mammograms, that we as a society have lost sight of those women with dense breast tissue. And perhaps insurance companies prefer the mammogram to the MRI because the latter is more expensive.

But why should that matter? Because saving a human life — whether by mammogram, MRI, or ultrasound — is priceless.

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.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Who’s Afraid of the Big Bad Medical Administrator?

Posted on: May 6th, 2009 by
3

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.
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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Survivor’s Guilt

Posted on: May 1st, 2009 by
3

This is how the story goes:

I had a friend around my age. She died. I lived.

I lived because she died.

Faun and I became fast friends, well, fast. We met at a breast cancer survivor’s group, and even though I was the newbie to a well-established group, she and I hit it off. Turns out she was a teacher and a writer. Like me. And she was from the East Coast. Like me.

And she was a breast cancer survivor. Like me.

Or so we thought. Five months after we met (and five months after my last chemo treatment), she experienced a recurrence. Well, that’s not exactly accurate. The cancer had never really gone away in the first place.

I’ll spare you all the gruesome details, but I took her to chemo regularly and was there for her — until the very end, about four years later. Ironically, those chemo days were good days for us as friends. We had hours to talk, and then I brought her home, sat on the edge of her bed, and we laughed and shared secrets for a couple of hours.

We even had plans to compile an anthology of essays and poems by a variety of people who’ve had breast cancer. And, of course, we’d contribute our work to the anthology. We would brainstorm regularly about how this book would evolve. Our dream of collaboration never happened, though.

She died July 3, 2005, at the age of 47.

Yet, she saved my life.

You see, six months after she died, my oncologist called to tell me that my MRI revealed something odd in the same breast in which I had breast cancer five years before. He was understandably very concerned. I was understandably very panicked.

I got an ultrasound and biopsy and had the abnormality removed. As I waited for the lab results, which seemed like an eternity, I became obsessed with all of what Faun went through. I wondered if dying young was something else we both would have in common.

During this time, I did some serious thinking that If I could get another chance at life — if I could do it all over again — I would get a double mastectomy instead of the lumpectomy I chose at diagnosis. I decided then and there that I would get a double mastectomy, no matter the outcome. Even if I never got a recurrence, I reasoned, the constant scares and mammograms did a number on my psyche. I thought of the rock group Boston’s words: “All I want is to have my peace of mind.”

I remember when the biopsy results revealed that the “abnormality” was benign — simply scar tissue. I felt a tinge of happiness, but it was mostly fear. I knew if I didn’t get my “evil twins” removed, I would get breast cancer again. I just knew it. Something was telling me that breast cancer would once again be in my future.

Fast forward to all the doctors I hired and fired and drama and trauma in order to get the double mastectomy, the topics of previous postings. After an 11-month battle navigating through the medical system, I finally found myself happily in the OR with a gaggle of doctors ready to remove my breast tissue and reconstruct my breasts from my post-menopausal belly fat.

The next time I saw my oncologist, he beamed from ear to ear, telling me that the double mastectomy was the right thing to do becauseI had many precancerous cells in my supposedly healthy breast. I most likely would have gotten breast cancer again in a few years.

I asked him, “So, I avoided death twice?”

He responded, “Yes.”

Had I not seen what Faun went through, I might not have been so proactive and insistent on the double mastectomy. Her suffering and death had anchored itself in my mind and kept me fighting for the surgery.

Now, about two and a half years after my surgery, I still get back pain and have residual aches, but I refuse to feel sorry for myself. I refuse to be a whiner. I refuse to be a complainer. Oh, I have my moments, but I know each day is a gift.

I have recovered and gotten a clean bill of health. I’m grateful to be alive. At the end of this week, I am flying to China to adopt my baby daughter. And Faun’s dream has lived on in me: I have been published in an anthology focusing on breast cancer.

Yet, I will always feel survivor’s guilt. I do wonder why Faun died and not me. Don’t get me wrong: I’m glad I survived, but at the same time, I feel guilty that I feel glad I survived.

But then I think that perhaps her spirit is watching over me, that perhaps she’s my guardian angel who takes pleasure in knowing that I’m bearing the torch that is keeping our dreams alive.

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/.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

Cancer Myths

Posted on: May 1st, 2009 by
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“You’re Fired!”

Posted on: May 1st, 2009 by
5

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.

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This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.

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Posted on: April 29th, 2009 by
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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/.


Say ‘No’ to Thugs

Posted on: April 26th, 2009 by
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We are able to say “no” to our children, teenagers, relatives, friends, and significant others. So why is it so difficult to say “no” to doctors?

Society is groomed to say “yes” to authority figures – particularly doctors. Maybe it’s because we are inundated with TV shows and all kinds of medi-dramas that place doctors smack in the middle of a medical pedestal. From TV’s Marcus Welby to Emergency to Trapper John MD to ER to Grey’s Anatomy, it’s all the same rhetoric: a doctor’s word is good as gold.

I’ve built a team of excellent doctors, all of whom I trust with my life. But I couldn’t get to this point without making hard decisions about which doctors to hire and fire. (In a future blog, I will discuss how to hire and fire doctors.)

Not questioning doctors can result in all sorts of problems for the patient. At its very worst, though, not questioning doctors can land you a spot at the county coroner’s — and not an adventuresome one like that depicted in Quincy.

And if you find yourself facing a combative doctor who is trying to bully you into compliance, use a very effective technique: civil disobedience.

In short, say “no” to thugs.

Here are just some of the doctor thugs I said “no” to:

  • At the time of my diagnosis, I sought a second oncologist’s opinion. He chose a treatment protocol that I later learned would likely have caused long-term damage to my heart. I also asked him about harvesting my eggs because, despite my dire terror, I was hoping to have a baby after cancer. He said, “You might want to think about how fair it is to bring a child into this world, only leave it an orphan.” I left that appointment sobbing. I said “no” to him and “yes” to the first oncologist I had seen. And each day I am grateful for that decision.
  • When I was planning my preventive double mastectomy, a surgeon also recommended other organs get removed as a prevention. Based on the judgment of my excellent gateway doctor and excellent oncologist, I said “no.” He proceeded to bully me by interrogating me on the phone as to why I was not removing these organs, and I infuriated him (not purposefully) when I said that I was following the advice of my other doctors instead of his advice.
  • Dr. Remove-All-Your-Organs finally got over his anger with me and, in an act of good will, offered my mastectomy surgeon his assistance in the removal of my breast tissue. She called me to ask what I’d prefer: her alone or the two of them working together. I told her that I didn’t want that man to ever touch me and didn’t want him anywhere near me on that day. In fact, he’d better not even be in the operating room! (I would’ve liked to say, he’d better not even be in the same hospital as me on that day, but that would be pushing my luck.)
  • Another doctor I consulted who wanted to remove some organs during the mastectomy (yes, there was another organ-fixated doctor) started interrogating me after the surgery as to why I didn’t follow his advice. I was stifled at that point, but once I got my bearings, I fired him.

This is not to say that we should barrel into a doctor’s office, treat them with disrespect, or be deliberately contrary. Doctors are often right about our medical needs.

However, we should never forfeit our rights to be key players in our own health care. And if you encounter arrogant bully-doctors, just employ civil disobedience: Say “no” to thugs.

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/.

Photobucket

This blog posting is an excerpt from my book in progress, Calling the Shots: Coaching Yourself Through the Medical System. Stay in loop for when it comes out. Subscribe to the blog in upper righthand corner.