Carrying the Cards You've Been Dealt....With Hope

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.

Say 'No' to Thugs

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/.

Top 10 Reasons to Run Away From a Doctor

Clearly, there are doctors who should not perform the science and art of medicine. And medicine is a science and an art because doctors need to balance information from research and their fields of expertise and the art of applying this knowledge to help their patients.

Recently I wrote about Five Quick Tips for Choosing a Doctor. Now here are my Top 10 quick reasons to run away from doctors. I have experienced all of these scenarios, some multiple times. Here, then, are my Top 10 signs that you need to put on your running shoes:

1. Citing one dizzying statistic after another, trying to impress you and make you feel stupid.

2. Having a cheat sheet from the Internet and reading from that sheet during an appointment.

3. Bringing up the removal of organs that are not up for discussion....or removal.

4. Telling you that if you don't choose his/her treatment, that mortal harm will come to you. He/she tries to frighten you into submission.

5. Maligning his/her colleagues and taking offense if you want a colleague's opinion.

6. Blaming you for not following his/her advice.

7. Interrogating you for why you didn't follow his/her advice.

8. Trying to decide your medical destiny rather than act as your advisor when you are choosing your own medical destiny.

9. Playing God by predicting what will happen to you. The truth is, nobody knows the outcomes for sure.

10. Pressuring you to make decisions too quickly for your comfort.

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.

The Gateway Doctor

My grandmother always told me, "If you have your health, you have everything." As a child, I didn't understand the truth in these words. I didn't heed these words as a healthy young adult: I came from very genetically healthy stock -- people in my family die of old age for goodness sakes, even the ones exposed to asbestos, lead, and various other toxins!

I didn't heed my grandma's words until I was diagnosed with breast cancer. Because let's face it: I, as so many people, took my health for granted -- until I didn't have it.

Now I'm going to spin my grandma's words to suit my medical-advocacy purpose: "If you have a great gateway doctor, you have everything."

Besides you, the most important person managing your health care is the "gateway doctor," also known as the primary care physician, internist, general family doctor, etc. Whether or not you are healthy, whether or not your family has had the same physician they have felt comfortable with for decades, whether or not your doctor is well-versed in all of the new medical technologies, whether or not your doctor has had an established practice with a good reputation, it all boils down to this:

Do you trust your family doctor with your life?

If the answer is anything but a resounding, enthusiastic "YES!," find another doctor immediately. Your life is too precious to take a chance with incompetence and mediocrity.

I measure competent doctors by their medical and emotional know-how. They must be medically competent (sounds like I'm stating the obvious, but it needs to be stated) and they must have your best interest at heart. The latter point means more than just bedside manner: I have had doctors be pleasant to me during an examination, but mere pleasantries are not enough.

You must LOVE your doctor.

As is the case with specialists, the ideal gateway doctor cares about you as a patient and will work as hard as possible to advocate for you. Another perk is that a great family-practice physician tends to keep company with other excellent doctors -- and that opens the gateway to outstanding medical care.

I was lucky to have an outstanding gateway doctor in place before I got diagnosed with breast cancer. She was my physician for years because we had great patient-doctor chemistry.

Let me tell you what she did for me during my breast cancer journey:

She called me often, coaching me through the diagnosis and prognosis. She listened to me, and validated my concerns. She encouraged questions and provided prompt answers. She returned my phone calls, often on the same day that I left her a message. And she was working behind the scenes and putting an excellent team in place for me. She landed a great surgeon, steered me toward a fantastic medical oncologist and radiation oncologist. These top-level professionals all worked tirelessly to save my life, but they didn't treat me as if I were a mere patient.

They treated me like family.

And they were all HMO doctors.

(In a future blog, I will dispel the myth that all HMO doctors are bad.)

And even though I had a medical team of specialists who were unbelievably outstanding and kind -- like off-the-charts brilliant and sweet people -- I probably wouldn't have crossed paths with them, had it not been for my gateway doctor, whom I have called my guardian angel.

So now that I've waxed poetic about my gateway doctor, here are some litmus tests that can help you find the doctor that's right for you. These tests also apply to specialists, but you need a great PCP in place before you can even consider a specialist.

You'll need to set up a routine exam, perhaps with several doctors, to find the right one so please be patient.

Litmus test one: During your meeting, give an emotional prompt, like: “I’m afraid of blood tests.” Observe the doctor’s reactions. Is he/she emotionally vested in you? Reassuring? If not, find another doctor.

Litmus test two: Sometime in the week following your exam, call the doctor to ask a question. Does the doctor call you back promptly? Does he or she communicate with you clearly and patiently? Does he or she take your concerns seriously? If the answer to any of these is “no,” find another doctor.

Litmus test three: Based on litmus tests one and two, do you LOVE your doctor? If you are feeling badly about him/her or just so-so, find another doctor. Don’t settle for mediocrity because if there were a medical crisis, a doctor you love and who cares deeply about your welfare will be the one who fights for you.

Litmus test four: Does the doctor play “ring around the patient,” where he/she continuously throws statistics to impress you with his or her know-how? Does he/she come with print-outs of pages from the Internet to illustrate these statistics? Do you feel confused during and/or after the session?

Run – do not walk – away from this doctor.

Litmus test five: Does the doctor use scare tactics, telling you all the terrible things that can happen to you? Is he/she dismissive of your emotional and physical needs? Does he or she sound like a doctor who has watched too many ER or Grey's Anatomy episodes? If so, this is not the doctor for you.

All in all, trust your instincts and be persistent in your goals to find a great doctor. You will know whether a doctor is a good fit for you. Also, if you suspect something is wrong and a doctor does not give you a satisfactory answer or solution, then continue advocating for yourself. Don’t accept answers like, “You are too young to get cancer.”

Demand to be treated with respect and, if need be, be difficult to those who treat you unfairly. You have an amazing power to demand to be treated with respect – whether from doctors, nurses, and office personnel. If someone treats you with disrespect, such as rudeness, talk back.

You are nobody’s doormat, and they need to know it.