FORTHEPROMPTLESS – KUMMERSPECK: Me and the Fat Lady

I originally wrote this six years ago. I’ve rewritten it many times since. Some day, I’ll get it right. It does seem appropriate for this topic. The deeper meaning, such as it is, is obvious: all us are haunted by someone or something, an evil shadow of what we were and never want to be again.

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Twelve years ago, I lost 160 pounds, an entire full-grown person. I have gained some during the past two years as a side effect of anti-hormone therapy following breast cancer, but I’m still more than 100 pounds less than I was before the story began.

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Every since the initial weight loss, there has been a Fat Lady following me. She is me, or more accurately, she is the me I used to be. She is invisible to everyone else, but I can see and hear her clearly. She waddles after me wherever I go. She talks to me, nags me, teases me. She sits with me at meals, whispering in my ear. She’s my co-pilot while I drive. Worst of all, she goes shopping with me.

While I try to decide whether or not to buy the size that looks great and fits just right … or play it safe and get the bigger size … she is there taunting me. This is probably why I have a half closet of clothing that’s too big. Always is the terrible whispering voice of the Fat Lady saying: “Yes, but what if you gain weight … what if you need bigger sizes? What will you do with this little stuff?”

The Fat Lady never shuts up. “You know, your feet might swell. You’ll never fit into those narrow little shoes.” Panic. What if my feet really DO swell? It hasn’t happened in more than 10 years, but still I expect it any day.

What if this is all some kind of weird dream? If suddenly I wake to discover I’m big? Every time I try on a garment, that Fat Lady is there, doing commentary.

Ah! The terror and triumph of shopping; the sheer exhilaration of sliding comfortably into skinny jeans … until the Fat Lady says. “You’ll never get into those pants.”.

“I am wearing them,” you point out.

“So,” she says, “what about tomorrow, eh? You could gain more weight. They might not fit tomorrow. Then what’ll you do? All you have is LITTLE clothing.”

“I’m going to stay little,” you reply, trying to hold firm.

“SURE you are,” she says. “Just like all those other times before …”

There’s no getting away from her. I have to run to the bathroom scale to confirm that I am not, in fact, fat. I stand in front of the mirror and stare at this body looking for signs of creeping obesity. I press my hands hard against my belly.

My belly is flat. Although I’m not longer all bone, I’m normal. Not bad at all for a gal of my age with a lot of miles on her. Perky breasts, too, since the nasty ones with the cancer were replaced with firm, youthful silicon implants.

I can feel the Fat Lady breathing in my ear. “See that flab?” she mocks. “That’s your old fat self. It’s just waiting for you.”

“It’s loose skin from all the surgeries.”

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“Hah,” she says. “We both know better, don’t we.”

I have a theory about fat. It’s connected with the concept in physics that matter and energy is interchangeable and that the actual amount of matter and energy in the universe never changes. It just converts back and forth from energy to matter and around and around.

I lost 160 pounds.

That fat went somewhere. It’s in the ether waiting.

My lost fat transformed into a Fat Energy Field. Not only my fat, but all the fat anyone ever lost is hanging in the atmosphere, huge, amorphous, invisible … waiting for some unsuspecting person to cross its path. Then … WHAPPO ZAPPO. The Fat Energy Field transforms back into Fat Matter. Hips become huge, bellies grow pendulous and thighs and buttocks fill with blubber.

How many times have you … or someone you know said “I don’t know what happened. All of a sudden, I just put on 40 pounds. I don’t understand. I didn’t eat more than usual. It just happened.”

That poor soul intersected with a Fat Energy Field. It could be his or her very OWN Fat Energy Field, if he or she recently lost weight, or it could be mine or someone else’s.
So after all is said and done, it really isn’t your fault when you gain weight. You were engulfed in a Fat Energy Field.

All of which brings me back to my shadow, the Fat Lady. She is me, but she isn’t either. She is my shadow, a demon-self sent to discourage and frighten me. Somewhere, deep in my psyche, I know her. Me as my Fat Lady was comfortable and safe in those folds of fat. I sent her away but she wants to come home so she won’t have to remain amorphous, without a true body.

The Fat Lady wants my body back.

I spend a lot of time looking in mirrors. Vanity? No. I look in mirrors for reassurance. I have to keep checking to make sure that I am the “now” me, not the “old” version. I check that mirrored image for signs of bloat, for hints I will be who I was and who I do not wish to be ever again.

There was a movie called “Charly” that starred Cliff Robertson and Claire Bloom, based on a short story called “Flowers for Algernon” written by Daniel Keyes.

Released in 1968, it told the story of Charly, a retarded adult transformed by a miracle of medicine into a brilliant scientist  but ultimately, the miracle fails and he returns to his former state of retarded man-child. He knows, before it happens, that it will happen.

How terrifying must that be? How terrified am I? (Note: These days I have lots of stuff to be scared of and regaining lost weight has dropped from my number 1 fear to around number 4 … but it’s still way up there on the worry chart.)

I feel his fear, the gnawing anxiety that he would have felt knowing he would lose all that he had gained. I live with that fright. I am scared to eat, even when I’m hungry. I’m afraid to buy clothing that really fits because I may not fit into it tomorrow morning or even later today.

Life in a new body is a daily adrenaline rush of mixed joy and panic, an endless roller coaster ride that CYCLONE-ahauls me up then drops me in a screaming rush then whips me around a curve only to drag me up again.

Fortunately, I love roller coasters, the bigger, faster and scarier, the better. If you are going to completely alter your physical self, you need to like living on the edge because you are on it for life. That roller coaster becomes life.

Life is to be lived and excitement, change, and danger make life interesting. We take risks because we want our lives to be edgy. We deny it, claim all we want peace, but we don’t really seek peace. We are ambivalent, wanting safety yet craving excitement.

They say that you stay young by constantly learning. I think you stay young by continuing to take risks. It may not always be smart, but sometimes, smart isn’t everything it’s cracked up to be.

Weekly Writing Challenge: Fit To Write — I’m just fine. Thanks for asking.

A mere two years after a double mastectomy, I’m facing another medical crisis. I’m not handling it gracefully. Too many crises. Dozens of surgeries. I can’t bore you with details; I have, thankfully, forgotten them.

Fake breasts

I’ve spent more time in the hospital than most interns. I’m a professional patient with the scars to prove it. When I die, they should stuff me. Put me in some kind of museum proving with enough medical attention, even the totally unfit can survive. Each doctor who redesigned some portion of me can tattoo his signature along the appropriate scar, assuming all the doctors are still alive. Probably they aren’t because I started my career on the wrong side of medicine while still a teenager and apparently am not due for retirement anytime soon.

I need a new mitral valve. I used to joke and laugh, saying the only major system in my body that continues to work is my heart. I laughed too soon. Probably jinxed myself.

I go into each surgery with fear and resignation. I know how I’m going to feel when I wake up from the anaesthesia. I will hurt. I will be sick and disoriented. I will realize I must have survived because I’m aware how totally miserable I am. Again.

Last time I woke up and the first thing I did was look down at my chest to see if I had a semblance of breasts. I did. Lumpy, not flat. Though I knew they weren’t original equipment, I was comforted by the familiarity of the landscape. With all the pain, drains and anger at my body for betraying me, it was nice to know I would at least appear — on the surface — female.

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View of Boston and Fenway Park from the Baptist Hospital

That was when I said: “Never again. I’m never going through this again.”

I should just shut up. How stupid am I? I can’t remember how many times I’ve woken from that weird deathlike anaesthesia sleep and have fought my way back up to the light. Each time, just a little weaker, a bit less sure of the future — but alive. Hanging on.

Lobby of the Dana-Farber in Milford

Lobby of the Dana-Farber in Milford

It’s too soon. I’m not ready. Maybe this time the magic won’t work. My first husband died following complications of mitral valve replacement surgery. I watched him die. After the surgical accident that killed his brain, he remained technically alive, but in a vegetative state for 9 long months. I took care of something that looked like him, but whose eyes were empty. When finally he passed completely, I and the rest of his friends gratefully wished him well on a journey he should have taken nearly a year before.

Probably no surprise that this particular surgery holds a special terror for me.

Less than two years since I vowed “Never again,”  again has come. I suppose I’ve already made the choice to let them fix me, or try anyhow (does “or die trying” sound too ghoulish?). The alternative — slowly dying while my heart becomes less and less able to pump blood — doesn’t sound attractive. An attractive option does not seem to be available. But, there’s no advantage in waiting. I won’t get younger or healthier. The older I get, the more dangerous surgery is.

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Glass shaft at the Dana-Farber.

I gave myself a little gift of time. I put off my appointment with the surgeon until the beginning of September. I need to get my head into a better space, to settle down emotionally. A few weeks of denial before I tackle another scary reality.

So for the next three weeks If you ask me, I will tell you. I’m just fine. Thanks for asking.

Charity — The Last Legal Scam

I got a call a couple of weeks ago from a group supposedly collecting money to help women struggling with breast cancer. More precisely, to help woman who need money to cover expenses connected with breast cancer. I’m on a list somewhere. Probably several.

“Our goal,” said the collector, “is to help women with breast cancer who are financially struggling.”

I asked her if she was offering to give me money or asking me to give them money. Because if she was asking me to give them money, she was calling the wrong woman. But if she was offering to help me out, I would be very grateful for any assistance.

She seemed confused by my question, so I explained that I am a breast cancer victim. And I’m in serious financial straits, so I am exactly the type of individual for whom her organization is supposedly collecting funds. If the goal is to help woman with cancer who need financial assistance and they are offering to help me out, I’d be delighted to give them my address so they could send a check. They obviously already have my phone number.

Otherwise, best of luck and do let me know when the time comes to distribute the funds they have collected.

She told me to have a good day and hung up.

So — for whom are they collecting the money? No one has called me to find out if I need help. She did say they were collecting money for women just like me. So, if they didn’t contact me or anyone I know and I’ve never heard of her organization, how do they know who needs money? How will they decide who to help? Or, as I suspect, are they going to use the money they raise to raise more money and line their own pockets, but no one will ever benefit from it except the fundraisers? Was it a scam?

"Direct cash" is what they really give to someone other than themselves.

“Direct cash aid” is what really goes to support causes — about 5%.

Which is how these things seem to work. Have you ever heard of anyone actually getting any help from one of these groups? Ever? Even a rumor of someone who knew someone who heard about someone who was helped by such an organization? I haven’t. Not one person anywhere ever.

I got a note from a friend of mine today. She asked:

This may seem irrational, but …

I have some bitter feelings about ACS, left over from when my Mom was dying of multiple myeloma (think Geraldine Ferraro) back in the early 1980s, when there really was no treatment for that devastating disease. As her caretaker (and single parent, low-income but employed), I was feeling desperate and alone one time so I called the local chapter. Unfortunately the person who answered the phone that day was curt and dismissive, telling me that the only way they could help was by giving us rolled bandages — which my Mom didn’t need. I like to think it would be different now, but ever since that phone call — which may have been just a fluke — I have taken a dim view of ACS..

However:The Charity Navigator, a group that rates charities and how much of the money they collect actually gets given to someone other than themselves doesn’t rate the American Cancer Society highly, rather poorly, in fact. What do you think?

I answered her as follows (this is my actual answer, with identifying information omitted for privacy reasons):

To the best of my knowledge, this is not an organization that has ever helped anyone. Ever. I called them when Jeff had cancer and they were just as helpful to me as they were to you. This is one of many “charitable organizations” that seems to exist to collect funds so they can collect more funds. And pay their CEO a princely salary (more than $600,000 annually). As far as I’m concerned, they’re a legal scam. They don’t help anyone.

Exactly who does get the money? Good question. Worth asking. When you get fundraising calls, when you are asked to participate in a fundraiser, it’s normal to want to help. After all, it’s for charity. Isn’t it?

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Most of the money ends up supporting the fundraisers.

Maybe. Maybe not. Before you open your checkbook or volunteer your time, find out who they help, where the money goes. Many “legitimate” groups — the bigger and better known especially — give less than 10% of collected funds to help anyone or anything. Typically, the percentage that goes to “serving those in need” is less than 5% of the total funds collected. If you gave $10, that’s 50 cents. Not much of a return on your investment. And this doesn’t take into account the actual charitable scams of which there are a frightening — and rapidly growing — number.

There are notable exceptions, groups that give urgently needed help to real people. Catholic Charities of USA and their local chapters support food pantries, free clinics, emergency programs for anyone who needs help regardless of religious affiliation. The American Kennel Club helps dogs, all kinds of dogs, purebred and not. The ACLU (American Civil Liberties Union) provides legal assistance. Whether or not the work they do is something you choose to support is a different issue, but they do live up to their press releases.

On the negative side, there’s the United Fund which exists to collect money to support its efforts to collect funds. PETA doesn’t give anything to anyone except maybe each other. The American Breast Cancer Association (zero out of four stars) is a legal scam as is the Breast Cancer Prevention Fund  (one star) and there are many more. Your local church is likely to be a far better investment. Many local religious groups do a lot of good in their communities, quietly, without fanfare. And if you have a friend who is having a hard time, try direct charity. At least you know your money is going where it is genuinely needed.

Bigger is not necessarily better, especially not when you’re talking about charities. The amount of publicity they get doesn’t prove anything. Most national charities have local chapters that do the real work; frequently the local groups also raise their own funds while the national organization keeps the goodies for themselves. Donate to the local groups rather than the parent organization if you have a choice.

Finally, lots of charities have similar names. You need to know the precise name of the group. Scams and legitimate groups sound the same when spoken quickly by a solicitor on the phone. I don’t give anything to telephone solicitors unless I know the organization and it’s local. I ask for their literature. If they don’t have any, it’s a scam.

Ask questions. Do your homework. For many of us, finding a little money to donate to anyone is a stretch, so before you do, know where it’s going. Otherwise — I’m serious about this — give the money to someone who is struggling so you know your gift helped someone. It’s not tax-deductible, but that’s not the point, is it?

 

Daily Prompt: A Mystery Wrapped in an Enigma – Who is she?

I have a new body. I wear a size 14. A dozen years ago, I wore a 24. I’ve been as small as a 2, but bilateral breast cancer, double mastectomy and a lot of weird medications put 40 pounds back. I look better with a bit more of me, though it feels strange after being hyper-thin for a decade. With the regained weight, I’m still 100 pounds less than I was. I have bones. When asked how I feel, I say it’s like wearing someone else’s body.

Where I began - Age 25

Where I began – Age 25

Walking past a mirror is always a shock. Who is that? Granted the change is more than dress size. My brown hair turned white. My reconstructed breasts are half the bulk of the original equipment and lacking nipples. I also don’t have a naval, so sometimes I feel as if I’m not actually human. My breasts don’t feel like me. And my eyes are different. The droopy eyelids had to be remodeled when I lost my peripheral vision.

Whoever she is doesn’t look like the person I knew. Reconciling New Me and Old Me seems unlikely to happen. It’s a gulf I am unable to cross, permanently alienated from my body.

Me in the mirror. Coat on, sorry about that.

Where I am – Age 66

When I was a girl, then a young woman, it was as if I was surrounded by dotted lines extending beyond my real dimensions, to be filled with flesh-yet-to-come. I wasn’t fat. I was exactly normal but believing I was fat was self-fulfilling.

This society exalts thin — even anorexic — women. For many of us, thin is unattainable. Genetics, life, body type, whatever — by middle age, we carry a few extra pounds, sometimes a lot more than that. Is it healthier to be thin? Obesity is definitely unhealthy, but how thin is thin enough?

We are shadowed by invisible perfection … ghost images of ourselves. They follows us — nagging, carping. Relentless, cruel, merciless.

We yearn for perfection. We start dieting early, before we are overweight in an attempt to meld our real self with our perfected ghost self. When we fail, we diet harder. We obsess about food until it becomes the central issue of our lives. If we were thin, all our problems would go away.

Success turns into failure. We lose weight, but when don’t become what we expected, we start eating again, regain weight, maybe adding a few more pounds. Each failure reinforces a negative self-image. By the time we’re in our forties, we’ve beaten our fragile metabolisms until they don’t function at all. The more we diet, the harder it is to lose weight. If we’ve had a baby or three along the way, even harder. The vicious cycle is self-perpetuating.

That’s the way it was for me. Never did I look in the mirror and like what I saw. Was my distaste for my image a cultural phenomenon? The result of advertising and media brainwashing? A psychological issue? How much did my ethnic origins where every event in life is celebrated by a group eating frenzy contribute? How much did a dysfunctional, abusive childhood add?

I somehow imagined if I were thin, life would be perfect. Not just my body, but everything. If I were thin, everyone would love me. I would earn more, have more friends, have fun all the time. Like people a Pepsi advertisement, me and my life would be beautiful.

Gastric bypass surgery got the weight off, but it turned out to be only the first step in the reconstruction. Behind the fat lay a knot of issues. A lifetime full of them.

So again, I stand in front of that mirror. A stranger is reflected there. Me — not me. I have a new body. Missing a hundred pounds and two breasts. White haired and much older. Me. Whatever that means.

Prompts for the Promptless – Ep. 9 – Gallows Humor: Dying Is Easy (Comedy Is Hard)

After I was told I had cancer in not one, but both breasts — they were having a two-for-one special at the Dana-Farber — I had them removed and replaced by silicon Hollywood quality implants. I stopped short of adding the fake nipples. Previous surgeries had left me with no naval, so now lacking both naval and nipples, I think maybe I’m an alien walking the earth.

I have a tee-shirt that says “Yes, they are FAKE. My real ones tried to kill me.” It makes people laugh. It’s the high point of my cancer experience.

Unfortunately, cancer tends to enter your life and like a guest that long over-stays his or her welcome, you just can’t get rid of it. After I gave up my Medigap policy and signed on with Fallon Senior Medicare Advantage plan, it took me five months to get an appointment with an oncologist. It began last November and isn’t over yet.

Dying is easy 1

To get started on the wrong foot, the customer service person who signed me up in the beginning gave me incorrect information, having assured me Dana-Farber in Milford was covered by Fallon. This turned out to be untrue and left me without an oncologist. I was annoyed, but they said I could see my Dana-Farber oncologist once more and I figured I’d get a referral from him.

My oncologist didn’t know anyone at UMass in Worcester which is Fallon’s only cancer care facility in Worcester County. I remained calm. I’m past surgery and chemo, in the maintenance phase of care, the part where they do their best to ignore you. Failing that, they do the least they can. Unless you obviously grow a new cancer in a location they can see and feel, they tell you you’re fine. Not to worry. Smile. It’s just cancer.

At Dana-Farber, I had been going for quarterly check-ups, feeling for lumps, taking blood, checking for weird symptoms that could indicate something growing somewhere it shouldn’t. Annually they run a scan to take a look around the property, aka my body. I’d had to go to war for the scan. Their plan was to do nothing at all unless I had symptoms. Does death count? I felt their plan was insufficient while they felt running a scan was a frivolous waste of taxpayer’s money. My life didn’t come into the equation.

My former oncologist couldn’t help me find a new doctor. He suggested I call the HMO and ask them to refer me to a medical oncologist with a speciality in breast cancer. I knew my PCP wouldn’t be able to refer me because she had already said so. She had suggested I get the referral from my oncologist. Full circle.

I called Fallon Senior Heath Plan.

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The customer service rep sounded about 12-years-old, but knew even less than her years suggested. She didn’t understand the concept of different kinds of oncologists. After explaining for perhaps the dozenth time, I began to sink into the slough of despond. It was like talking to a smiling plastic doll who will recite one of 3 pre-recorded phrases. Pull the string, get an answer.

I got transferred to a supervisor and retold the story. She said she would “research the problem” and get back to me. Research the problem? Sounded like a kiss-off to me.

I called my doctor’s office, explained I hadn’t been able to get a referral from my oncologist or from Fallon where they kept saying my family doctor should send me to the right doctor even though I told them Dr. S. didn’t know the doctors in oncology at UMass, Worcester.

HELP, I said. Please!

I did my little song and dance, explaining I needed a Medical Oncologist with a specialty in Breast Cancer. Since breast cancer is frightfully common, it shouldn’t be that hard to find someone.

A few hours later, my doctor’s office called back, gave me a name, an appointment, a phone number. The appointment was for a few days hence, also my birthday. I didn’t want an oncology appointment on my birthday. Nor did I need an appointment immediately. I had just had my annual scan. So I called the doctor’s number to change the appointment to something more sensible.

I got transferred, transferred, and wound up talking to Lisa, the administrator for the Breast Care department. The doctor with whom I’d was booked is a surgeon and they need my medical records before they can continue. The records are all over the Commonwealth, scattered between 4 hospitals.

Lisa said not to worry, she would take care of it. She did. She changed the appointment, booked me with an appropriate doctor, called the various offices and ordered my records. Said if I had any kind of problem, give her a call and she’d fix it because women with cancer shouldn’t have additional problems because they already had quite enough. My feeling precisely!

Shortly thereafter, my doctor’s assistant called asking why I’d cancelled the appointment she had made for me. She was furious. After all the effort she’d made making that phone call on my behalf, I’d had the gall to CANCEL the appointment. I explained she’d booked me with a surgeon — pointless since I’ve already been thoroughly surged. I needed a different doctor.

She was pissed because it hadn’t been easy to get that wrong appointment and seemed unable to grasp the difference between a medical oncologist and a surgeon. I explained — again — that a surgeon would not be able to help me because I don’t need breast surgery. I have no breasts. But I do need my medical records sent to UMass. She said Lisa from UMass had called about it but she wasn’t sure where to send them.

“Did Lisa tell you where to send them?” I asked.

“Yes,” she said.

“Then … why don’t you send them there?” Duh.

“But you cancelled the appointment I made!” she whined, still pissed off.

“I changed the appointment. To be accurate, Lisa changed it because the doctor to which you were sending me was the wrong doctor. NOW I have an appointment with the right doctor.” We went back and forth for a while until she grudgingly accepted my apology for not needing a breast surgeon. I assured her that I truly appreciated her futile efforts.

“I’m so sorry to upset you,” I repeated.

Yesterday I got a note in the mail (not email, the regular mail) from UMass cancelling my appointment with the oncologist and suggesting I call to make a new one.

Maybe I don’t really need an oncologist. Dying is easy; comedy is hard.

Dying is easy

Weekly Writing Challenge: The State of the State: Dying of Laughter

It took me five months to get a new oncologist from Fallon, the HMO that runs my Medicare Advantage plan. It began last November when, in a necessary cost-cutting move, I gave up my Medigap policy and signed on with Fallon Senior Medicare Advantage plan.

Dana Farber lobby

To get started on the wrong foot, the customer service person who signed me up gave me incorrect information. She had assured me Dana-Farber in Milford was covered by Fallon. This turned out to be untrue and left me without an oncologist. I was annoyed, but not wildly upset. They said I could see my Dana-Farber oncologist once more and I figured I’d get a referral from him.

custSVC

That turned out to be overly optimistic. My oncologist didn’t know anyone at UMass in Worcester — Fallon’s only cancer care facility in Worcester County. Like many satellite facilities  for larger institutions, it’s hard for them to keep ambitious young doctors on staff. They stay a while, then move to better paying jobs at bigger more, prestigious hospitals. A few doctors stay, usually those who live locally, but most move on. It’s a bit of a revolving door, personnel-wise, though it really isn’t their fault.

Even this didn’t faze me. I’m past surgery and chemo. I’m in the maintenance phase. I go for checkups and blood tests. Once a year they scan me to make sure nothing is growing someplace it shouldn’t. Nonetheless, I’m only 2 years from the initial discovery of two separate tumors and there have been a lot of cancer deaths in my family. Mother. Brother. Both maternal grandparents and I’ve had cancer twice, so there’s no reason to assume I’ll ever be entirely safe. I’m not acting crazy because I feel it’s a bit soon to stop monitoring me.

My doctor assured me that the facility is good, but he couldn’t help me find a new doctor. He suggested I call the HMO and ask them who do they have in medical oncology with a speciality in breast cancer.  I already knew my PCP couldn’t give me a referral because she said so. She had suggested I get the referral from my oncologist. Back to square one.

I called Fallon.

She said — this is a quote: “We do not list our doctors by specialty.”

“What,” I asked, “Do you list them by? Alphabetically?”

I mean, seriously, if you don’t list doctors by specialty, how in the world can anyone get an appropriate referral? This is supposed to be senior health care organization. It’s not as if cancer is a rare event. There’s a lot of it going around. I patiently — really patiently — explained I needed a medical oncologist specializing in breast cancer. That yes indeed, cancer doctors are highly specialized and it really did make a difference and no, there’s no such thing as “just an oncologist.” If ignorance was bliss, this was one deliriously happy young woman.

After I explained for the dozenth time it would not be okay to send me to “just any” oncologist, that I wanted someone who knew about my kind of cancer and moreover, I want a doctor who has been out of medical school for at least 5 years. I’m not ready to put my life in the hands of a baby doctor. My life, my choice.

I spent over an hour trying to make some progress, being repeatedly told I needed to go to my primary care doctor and get a referral from her. Despite my explaining she had already told me she didn’t know the doctors at UMass Oncology, it was like talking to a doll who only has three or four recorded phrases. By now, my good nature was gone and my fangs were showing.

It took another 45 minutes and further reiterations of the same information to get transferred to a supervisor. I told the story again. Finally, she said she would “research the problem” and get back to me.

I called my doctor’s office, explained that I hadn’t been able to get a referral from the oncologist at the Dana-Farber, nor could I get a referral from Fallon and they seemed to be of the opinion my family doctor should send me to the right doctor even though I had told them that Dr. S. didn’t know the doctors in Oncology at UMass in Worcester. I needed someone to step up to the plate and help me.

A few hours later, my doctor’s office called back and gave me a name, an appointment, and a phone number. The appointment was for just a few days hence, also my birthday. I didn’t want an oncology appointment on my birthday. Nor did I need an appointment immediately. I had just had my big annual scan and wouldn’t need to be seen again for six months, so I called the doctor’s number to change the appointment to something sensible.

I got transferred then transferred again and wound up talking to Lisa, the administrator for the Breast Cancer Care department. It turned out that the doctor with whom I’d been booked was a surgeon, not a medical oncologist and that in any case, they couldn’t do anything without my medical records which were scattered through three hospitals and a doctor’s office — each located in a different town.

Lisa said not to worry, she would take care of it. Remarkably she did. She changed the appointment and booked me with a doctor who specialized in my type of cancer, called all the various offices and ordered my medical records send to UMass. Said if I had any kind of problem, give her a call and she’d fix it because women with cancer shouldn’t have additional problems because they already had quite enough. My opinion precisely. But wow. What a difference a woman with intelligence and a willingness to actually provide customer service can make!

Shortly thereafter, my doctor’s assistant called asking why I’d cancelled the appointment she had made for me. I explained that she had booked me with a surgeon. I’d already been surged so I needed a different kind of doctor. She was pissed off because it hadn’t been easy to get that appointment and seemed impervious to the difference between a medical oncologist and a breast cancer surgeon. I explained — again — that a surgeon would not be able to help me because I don’t need a surgeon. I have no breasts, but I really do need my medical records … and she said yes, Lisa from UMass had called about that but she wasn’t sure where to send them.

“Didn’t Lisa tell you where to send them?” I asked.

“Yes,” she said.

“Then … why don’t you send them where she told you to send them? What am I missing?”

“But you cancelled the appointment I made!” she said, still angry.

“I changed the appointment. Really Lisa changed it because the doctor to which you were sending me was the wrong doctor. Now I have an appointment with the right kind of doctor. I’m not blaming you, so why are you mad at me?”

And so we went back and forth for a while until she finally accepted she had booked the wrong doctor, but I assured her that I truly appreciated her efforts. Since this is my life, getting the right doctor was my goal regardless. Sorry to upset you.

“Oh,” she said. Not a “sorry” in the batch.

“Right,” I said.

I’ve gotten a lot of calls from Fallon since then, all of them wanting me to explain again why I wasn’t happy with their customer service. I said a patient should be able to call and get names of appropriate doctors and at least some basic information about the doctor, like how long he/she has been in practice, their specialty, from what medical school he or she graduated and on which boards he or she is certified. And this information is fundamental to medical care and I am entitled to this information and they are obligated to provide it. Nor, I pointed out, is this such a difficult thing to accomplish. I could produce an appropriate data base in a couple of days using the internet and making a few phone calls. The problem could be solved with a memo sent to all customer service personnel in an email. Lives could be saved and it wasn’t an insurmountable problem. It just needed someone to recognize they had to do something and just do it. Although everyone agreed with me, I had the definite impression that no one would do anything about it. Inertia always seems to win over doing the right thing.

The day was only half over and I was not done with medical misinformation.

When I finally finished the marathon calls to Fallon, I got a call from Humana Insurance to remind me I hadn’t made a  payment this month.

I hadn’t made the payment because I cancelled the insurance when I switched to a Medicare Advantage (HMO) program. I didn’t want to switch but I couldn’t keep paying the almost $200 a month for my Humana policy.  When, at the end of November, I signed up with Fallon, I called Humana and explained I was changing to an advantage plan and needed to cancel my Humana policy as of the first of the year. I was told that as soon as my new program kicked in, the policy would automatically be cancelled and there was nothing more I needed to do.

“Are you sure?” I asked.

“Absolutely,” I was assured.

So, there it was, the middle of March and Humana is harassing me for money I don’t owe. When they called again, I finally got a person on the phone and pointed out I had called and cancelled at the end of November 2012.

Western Digital 3TB My Book Essential External Desktop Hard DriveThe representative said that he could see in his records I’d called to cancel, but I’d been given incorrect information. I was required to send them a letter; I could not cancel by phone or on-line. I pointed out that I signed up on-line and on the phone, so why did I have to write a letter to cancel? “Those are the rules,” he said.

“I want to speak to your manager,” I said. He explained that the manager would tell me the same thing. I pointed out that I didn’t care, I wanted to talk to a manager, and I don’t owe them any money. He said I’d have to file a dispute to not pay them because although it was their fault and they have it in their own records that I called in advance to cancel the policy, it didn’t matter. I was going to have to fix the problem, even though they were the ones who had caused it.

I thought my head was going to explode.

The manager reiterated that indeed they had given me incorrect information, but now it is my problem. Tough luck lady.

I hung up before I said something really rude. I believe there was steam coming out of my ears.

I took a slow, deep, cleansing breath, then called the other customer service department, the one whose number is printed on back of the membership card.

The lady I spoke to looked it up, agreed they had given me erroneous information, contacted the cancellation department and assured me it was fixed. I have a name and a number in case it isn’t. I pointed out that until this snafu, I’d had positive feelings about Humana and would have recommended them.

They had handled my claims promptly without haggling, but they had burned a whole year of good will in about an hour. I pointed out that I was not going to pay them any money because I didn’t owe them any money and they know it. I wasn’t going to send any letters or dispute any charges. They could put it all where the sun doesn’t shine. And thanks for everything. Have a good day.

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The Humana Building

It had grown dark while all this was going on and as the day had gone from morning to evening, my hard drive had been doing a full system back up. It was, I was glad to see, nearly complete.

As I hung up the phone, panting with exertion though I hadn’t gotten up from the office chair, the backup announced itself finished. I registered the hardware, did whatever I thought I was supposed to do. Garry got back from the grocery store and I put the stuff away. The dogs started howling for dinner. Life closed around me. The dog’s dinner was half an hour late and they were telling us they were so hungry they were going to fall over from weakness, poor darlings. They lie like dogs. Of course, they are dogs, which accounts for it.

So passed my day. Now, it’s eight in the evening. Either everything is fixed or it’s not, but I’m done. Totally and completely out of gas, I am ready for some mindless entertainment. Please,  do not give me anything to think about for at least 24 hours.

How come so  many blatantly incompetent people have jobs? Why are they working when so many others are unemployed?

Something is terribly wrong. I just don’t have enough strength to figure out what it is, much less fix it.

-

I Am Not Cancer

For all my friends, near and far, who deal with cancer  and its aftermath while trying to retain some semblance of selfhood.

Having cancer is like entering a tunnel. As soon as you agree on a plan of treatment, your choices disappear. You stay in that tunnel, in that lane until you get to the other side. As often as not, you don’t know where you are going. Scared, angry, full of holes from needles seeking veins until you have no veins to find.

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You’re weary of well-intentioned sympathy from people who keep telling you to smile because your positive attitude is the key to something (it’s not). You soldier on. You don’t need to be brave, but you do need to be strong. You have to keep following instructions, taking medication supposed to save your life, but which make you miserable.

It gets hard to remember who you used to be and harder to hang on to a sense of self when the world treats you as if you and your disease are the same thing.

The author of this poem wrote it in dedication to many friends who had some form of cancer.

I’m passing it along because there are so many of us, men and women, young and old who have cancer, have had cancer and wonder if and when we’ll have it again. Most especially, this is for Wendy.

Sometimes, it’s good to be reminded we are still people. It’s okay to be angry. It’s okay to be sad. It’s okay to be yourself. No matter what anyone says, you and your attitude didn’t cause your illness. You and your attitude won’t cure it. Feel however you feel. Talk and make sure the people in your life hear you.

by kjack

I am not my breast,
not my hair,
I am not my complexion,
not my eyes, not my nose,
not my lips, not my fingers,
not my toes, not my voice.
I can live without these things.

I am a mother,
a daughter, a sister,
a friend, a lover,
a wife, an aunt,
a grandmother,
and a stranger.

I am beauty,
I am the song on the radio,
the whisper in your ear,
I am the goosebumps in the
chill of night,
I am the comfort you find
in a hug,
I am a heartbeat, a soul,
a kiss in the cold,
an angel in your dreams, or
a breath of winter snow.

Pink Lily

I am love.
I am fear.
I am strength.
I AM NOT CANCER.
CANCER IS NOT ME.

Cancer is
a disease, not a
death sentence (necessarily)—

Cancer can take a lot from me,
my breast, my hair, my health,
my life.

But,
It can’t take away my soul,
It can’t change who I am.

I have cancer, and
I am beautiful, strong,
and scared,
but I am
alive.