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.

Blood, Gore, High-Tech and Architecture

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I knew it was going to be one of those days from the moment I got up this morning. There was no guesswork involved. It was all arranged, scheduled.

  1. Drop terriers off for grooming.
  2. Come home, drink coffee.
  3. Drive to Dana-Farber for a day of tests.
  4. Be reassured I’m not dying of cancer.
  5. Drive back home.
  6. Pick up terriers.
  7. Eat!

Those of you who suffer from serious medical problems that don’t go away and can kill you, know what I mean. Regular checkups are high stress events until you (hopefully) get the word that all is well.

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Even though you have no immediate evidence that anything is wrong above and beyond the “usual” which is something like a Chinese menu of interrelated ailments and conditions, you always harbor a not-so-secret belief that something ugly is going on and you just haven’t found it … or it hasn’t yet announced its presence.

There are people — Woody Allen leaps to mind — who feel this way through most of their lives with no evidence that anything is wrong. The good part of this approach is when something ugly actually does show up, they can say “See? I told you! I KNEW it!”

Pessimism saves you from a lot of disappointment. It also keeps you from enjoying the good stuff that happens along the way. I guess for the hard-core pessimists, it’s a small price to pay. Fear of fear, fear of bad news, fear of being too happy then being let down? I can almost (but not really) understand.

Days like this always starts at the lab. This is the scene of my first battle of the day, as I try to convince them to treat my one working vein with gentleness and subtlety. Do not attack it with a spear. Cajole it with a tiny pediatric butterfly needle because if you blow it, finding another live one will consume half the staff of the labs of two hospitals. They got blood, but it took two nurses and a lot of jiggling that needle around to find the magic spot.

“You think maybe it’s deeper?”

“Let’s try going deeper.”

“Ouch”

“Sorry”

“Ouch”

“Hey,, I think I see a flash … “

“Grab it before it rolls”

“Ouch”

“Blood!”

Phew.

I frequently slice pieces of my fingers off while preparing food. I bleed like mad — blood on counters, floor — blood everywhere. I suggested to the nurses that next time, I bring a kitchen knife and slash myself, like I do at home. There’d be more than enough blood and it would be quicker than all this probing with needles. For some reason, they didn’t think it was such a good idea, but I thought it was brilliant.

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I had brought the little Canon Powershot S100, my Kindle, and more importantly, Garry. They are my defense against losing my mind. This is how I avoid excessive cranial activity, i.e., thinking. Usually I’m in favor of thinking, but under this particular circumstance, nothing good can come of it.

As you can see, I shot a few pictures, some of which turned out rather interestingly.

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Blood having been taken, it was time for the long wait for the CT scan. I was originally supposed to drink some kind of dye solution, but I can’t because I have no stomach and I’m not up for massive nausea today. I’ve gotten to the point where they say you have to do “this” and I say “No, I don’t.” We go back and forth and eventually, they acknowledge that no, I actually don’t have to do it. But they really wish I would.

They were determined to get dye into me one way or the other. After taking a look at my so-called veins, the CT tech sent me to the chemo people who presumably can put an IV into a turnip. The lab had already mutilated my good vein, so it was now a retired vein. Even using the newest, grooviest high-tech equipment, they couldn’t find a live vein. An electronic vein finder is totally cool. It looks like a flashlight, but when they point it at you, you can see all your veins like a blue network under your skin.

If you want to distract me from pain and misery, give me a high-tech toy to play with. I’m like a kid at Christmas. So they let me point the light and together we hunted the elusive usable vein.

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High tech tools notwithstanding, my veins defeated the chemotherapy staff. No small achievement. After a full hour and three nurses poking holes wherever they thought a vein big enough to take an infusion might be hiding, they gave up.

The CT scan was performed sans dye.

Then, off to the oncologist. He looked sympathetic. He always looks sympathetic. Only psychiatrists and oncologists ever perfect that look of total sympathy. I often suspect it covers a deep ennui. Best not look too closely.

Mine also looks sad, perhaps slightly troubled, but deeply sympathetic. Oncologists are always very nice.They speak softly, gently, kindly, not wishing to upset you since they figure (true) that you are upset anyhow. He looks at my labs, tells me everything is absolutely normal. (Yay!)

He looks at the CT scan, which was a big one, chest to hips. He says nothing is there that shouldn’t be. Lungs clear, everything clear. Except my spine. Which even Garry and I can see is so encased in arthritis it doesn’t look like a human spine. No wonder it hurts.

The dogs weren’t finished at the groomer when we arrived at home, so we had to make a separate trip to get them. Worth it. They look so much better and incredibly cute. More importantly, they smell better. They had gotten seriously stinky.

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Eventually, I get my reward: a big family dinner featuring a roast leg of lamb. This doesn’t happen very often. Even when we weren’t quite so poor, it was a rare event, but these days? It’s an “almost never” event.

We, the couple who traveled the world and hung out with stars mostly now hang out with doctors and sit, waiting in sterile rooms. What’s wrong with this picture?

Oh, right. It’s the getting old thing.

Have a nice day, y’all.

Surviving: It beats the hell out of the alternative

postaday 2013 - long

In 2010, I discovered I had cancer in both breasts. Two tumors, unrelated to each other. Just twice lucky. They removed the tumors and the associated breasts, gave me very attractive fake replacements — much perkier than the old ones in an artificial implant sort of way. I actually have a little ID card for my breasts, like they have their own personae. Maybe they do. Thus, a little more than two years after the siege began, I’m almost me again. Almost but not quite.

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My mother died of metastasized breast cancer. My brother died of pancreatic cancer about 5 years ago, having never gotten as old as I am now. This is not a reassuring family history.

All chronic illnesses make you paranoid. The thing that’s so insidious about cancer is its absence of symptoms. The possibility that it’s growing somewhere in your body and you won’t know it’s there until it’s too late to do anything about it is about as scary as disease gets. Nor is it a baseless fear. I had no idea I had cancer, much less in both breasts, until it was diagnosed twice during a two-week period. One diagnosis of cancer is hard to handle. A second diagnoses a week later is like getting whacked over the head with a bat. It leaves you stunned, scrambling to find someplace to stand where the earth isn’t falling out from under you.

I don’t think most of us are afraid of dying per se. We are afraid of the journey we will have taken to get there. We’re afraid of pain, suffering, the humiliation of dependence and gradual loss of control of our own bodies. After having one or more close encounters with the dark angel, no one is eager to feel the brush of those wings again.

We are called survivors, which means that we aren’t dead yet. The term is meaningless. Put into perspective, we are all survivors. Anyone could be felled by a heart attack or run over by an out-of-control beer truck tomorrow. The end of the road is identical for all living creatures; it’s only a matter of when it will be and what cause will be assigned. Everyone is in the same boat. If you’ve been very sick, you are more aware of your mortality than those who who’ve been blessed with uneventful health, but no one gets a free pass. The odds of death are 100% for everyone.

Recovering from serious illness is a bumpy road. Each of us has a particular “thing” we find especially bothersome. For me, it’s dealing with well-wishers who ask “How are you?” If they wanted an answer, it might not be so aggravating, but they don’t want to hear about my health or my feelings about my health — which are often as much an issue as anything else. They are simply being polite. So, I give them what they want. I smile brightly and say “Just fine thank you.”

December Sunrise

I have no idea how I am. All I know — and all I can possibly know — is that for the time being, I am here. To the best of my knowledge, nothing is growing anywhere it’s not supposed to be.  Two years after a double mastectomy, I cannot be considered cancer-free … and really, if you’ve had cancer, you are in remission and that’s as good as it gets. So the answer for those of us who have had cancer, heart attacks and other potentially lethal and chronic ailments is “So far, so good.”

That is not what folks want to hear. People want you to be positive and upbeat. You cannot suffer physical or mental discomfort. Why not? Because if you aren’t fine, maybe they aren’t either. They have a bizarre and annoying need for you to be bright-eyed and bushy-tailed no matter how you actually feel.

As I enter this New Year, I’m glad to be alive. With a little bit of luck, I’ll continue to remain that way. God willing and assuming life stays more or less on an even keel, I’ll be here in the cyber world, writing my little stories, taking pretty pictures of waterfalls and sunrises and you’ll still come and visit me from time to time.

Welcome to survivorship. It’s imperfect, but it beats the hell out the alternative.

Visiting the oncologist if you forgot the Kindle but brought a camera …

A visit to one’s oncologist … the routine kind of visit when you haven’t got any deeply disturbing new symptoms and your best hope is that nobody finds anything the least bit interesting and you get to go home with all the same pieces you had on arrival. A visit after which no one calls to say you need to come back for more tests. The “normal” visits everyone who survives cancer hates, but figure as long as they stay boring, that’s good. “Survivor” as we all know, means “not dead yet,” and that’s the way we want it to remain. Whatever else is wrong with us, as long as the bottom line is “I’m alive!!” we are happy campers, or as close to happy as you can be when one of your primary doctors is an oncologist.

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Yesterday was a deferred, re-scheduled quarterly visit.

And wouldn’t you know it, I forgot to stuff my Kindle into my bag. The lab took forever and the only tech they have who can find my good vein was off. I have only one usable vein. If you miss it, good luck finding another that will yield enough blood to run the tests.

The day had gotten off to a roaring start, as it so often does, because we got stuck behind one of the areas super slow drivers. Being as our roads are one lane in each direction, stuck is stuck. Naturally, whoever they were, they were going exactly where we were going … the Milford Medical complex — Milford Hospital and our local Dana Farber outpost. We  tried not to start honking the horn or acting  crazy.

It happens every time we have to go somewhere and need to be there at a particular time. I’m not sure how they know we’re coming, but that 25 mph driver is waiting and will always be immediately in front of us as we try to get wherever we are going, almost always a doctor or hospital. Oddly, we never have any trouble getting home quickly … when we aren’t on a schedule.

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We got there more or less on time anyhow, but the lab took a long time. She needed to keep hunting for that vein. She finally found it and I tried not to act as surly as I felt. Probably I failed. I was surly. They never listen to me.  You’d think, having been the owner/operator of this body for 65 long, painful years, they’d figure I might know a thing or two about it, but they always assume I’m either senile or retarded. Maybe both.

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We had to wait for the lab. We had to wait for the doctor. Then, we had to wait some more because I needed a chest X-ray and the X-ray tech was in the other building (the hospital across the street) and when he showed up, the software that runs the X-ray machine was on the fritz. I suggested he reboot. He said the last time he did that, it totally died. I pointed out he had nothing to lose: it wasn’t working anyhow.

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He rebooted. It died completely. Another tech joined him and they concluded that the machine was (again because this is apparently a regular event) broken. I could have told them that. The reason that there happened to be a second tech right on the spot was because my patient husband, who was sitting there reading his newspaper had realized that his paper was getting wet. That it was raining outside was one issue, but we were in the lobby of the relatively new Dana Farber almost-but-not-quite state-of-the-art cancer facility. Less than 5 years old, anyhow.

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So they called the guy to fix the leak (again) because this too was a regular event. They had yet to figure out where the water was coming from. They thought maybe it was coming through the electrical system and leaking out through a lightbulb, leading me to suggest that they could put a lot of people out of their misery by upping the voltage and electrocuting people in the waiting room. The administrative nurse says “Nah, we’d need an electrical upgrade to get the voltage high enough to do anyone in, but maybe they could fix it on the next remodel.”  I love nurses.

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I had nothing to do through most of this. Lacking my Kindle, I dug around and found my little Canon Powershot 260, which I carry all the time to handle photographic emergencies. After exploring the contents of the chip, deleting some really bad pictures, I figured I might as well try to see if there’s anything to photograph in the various waiting areas of Dana Farber Cancer Treatment Center in Milford, Massachusetts. That’s what happens when you forget to bring something to read.

Why they have a grand piano in the lobby is anybody’s guess. I’m afraid to ask.

Make Mine Maroon

I have come to dislike pink. It was never my favorite color. Too little girly for my taste and not a color that ever looked good on me. Very dark pink, hot pink is okay, but that rosebud pink always seems to suit other people, not me. Then, I had breast cancer. Since then, I am besieged by pink … not only the color, but an attitude.

I lost both breasts and got, in return, two nice fake breasts. Implants are not real breasts. They are vastly better than nothing, but they aren’t flesh. They have little or no sensation and I’m not sure how long it will be until they stop feeling like alien invaders.  The implants look fine under clothing but somehow aren’t me.

I am tired of being told my attitude is the critical issue rather than the disease. A lot of people seem to want me to be upbeat because if I’m happy, it makes them feel safer; these people do not want to hear if I am at sometimes besieged by feelings of sadness and loss. Considering the prevalence of breast cancer … of cancer in general … that’s sad. We really should have long since improved our ability to understand. But cancer scares the bejeezus out of everyone and no one wants to deal with that.

Walking around grim and full of impending doom is not necessarily a good choice, but each of us should be allowed to feel how we feel even if it’s bad. We’ve taken a major loss. Telling us we shouldn’t feel unhappy, that we should stay positive is unfair and infuriating. It ought to be acceptable to be fearful, worried, to mourn losses, to wonder “why me?” People complain about a lot less. They moan and complain about their bosses, their love life, their cars, traffic and the weather, but if I complain I had cancer … that’s not okay? Really?

Fake breastsI come from a family where cancer has taken a lot of lives. Getting it wasn’t exactly a bolt out of the blue. The closeness of these losses is not reassuring. It will be too late for me, but I’m sure there are many undiscovered genetic links to be found. They are evident in family histories, including mine. Eventually, these connections will be discovered and I hope research money is being spent on this type of genetic research. Being able to predict and prevent cancer would be much better than trying to make it go away.

I hate the “Pink” culture. I resent it. Glorifying breast cancer as if it were a kind of gift — which it isn’t — is unfair. Treating it as if it’s a “test” that if we pass, makes us heroines is equally ridiculous.

I am entitled to be pissed off. Frustrated with endless round of ill-health. I can’t afford denial. That’s a direct route to early death, or at least earlier than need be. Denying reality and pretending everything is fine when everything is NOT fine is unhealthy. No one with a serious illness can afford it. One way or the other, the problem is not my (or anyone’s) attitude, positive or otherwise. The problem is cancer.

Absolutely no evidence of any kind exists to confirm the widespread belief that a positive attitude results in a higher survival rate.

That’s a myth perpetuated by people who are threatened by your cancer. If you have a positive attitude, maybe it means that the boogie man won’t get them.

Reality bites. Cancer is sinister and sneaky. It profoundly changes your life, even if it doesn’t kill you. It casts a long shadow under which you will always live.

I resent sappy postings on Facebook telling me that all cancer patients care about is living another day, that we have abjured selfish desires like money. Really? Personally, I would be delighted to get an infusion of money. I’d love to have a new car. Pay down the mortgage. Fix the driveway. So, please feel free to send your checks. Cash, personal checks and money orders are all accepted and if you want information for direct transfer into my account, I’m sure we can work it out. No donation is too small. Please encourage friends and family to donate too. Unlike regular charities, I promise to send you a personalized thank you note.

Cancer is a financial disaster for many, if not most people. Depending on what insurance you have and where you live, it can deplete your resources and leave you with nothing. It’s part of why maintaining that smiling face everyone wants to see can be so hard. Bad enough you’re sick. Bad enough they’re removing body parts. But you’re also broke and may never recover.

I remind myself that all of us are here on a temporary guest permit, that no one gets out of this world alive. Any one of us could be felled by a speeding car or hit by a meteor. No one gets a guarantee. Cancer adds another layer, a ticking clock you hear inside your head. You know that the odds of  getting cancer again are high, even if your surgery went perfectly and everything looks clean. As one of my more realistic oncologists said: “It just take one cell. Just one.”

One single undetectable cell finding a compatible place to land and grow is all it takes. You won’t find it until it’s big enough to produce symptoms. If the original organ(s) has been removed, the cell will have to find a new home in a different organ and no one can predict where that might be. Or how long in the future it may become large enough to notice. It could be a long time, long enough to give you a full life … and it could have already started somewhere and you just don’t know. Not knowing, wondering, alternating ups and down of hope and fear are damaging to your mental health and esprit de corps.

You want to be fine, you plan to be fine yet you find yourself always waiting for the other shoe to drop.

A positive attitude will not alter the course of the disease in any way, though it will make you more fun to have around. Pretending to be positive makes others less afraid. It will make your family and friends feel better. To some degree, we do it because what’s the point of spreading gloom? If it doesn’t help you, maybe will help them. The “acquaintances” and other people who impose the obligation to smile regardless of your real feelings are not concerned with your welfare. Most of them could care less how you feel. They just  don’t want to deal with your pain or the threat you represent to their peace of mind. They want you to be okay so they can feel okay.

The culture of positivity that has developed around a bad and painful experience is phony and unfair. Living a lie is not solving any problems. Forcing women to smile when they want to scream is an old, old story: we’ve been doing it for centuries. It’s another version of the Happy Face … housewives with fake smiles taking care of everything while no one considers how they feel. It’s the 1950s redux.

The offensive pink trash bin.

I do not buy into it .

There a reason you can never get a straight answer from an oncologist. Ask them if taking tamoxifen or whatever nasty concoction they are giving you will improve your long-term survival and they will quote statistics. You know and they know a statistic is a numerical average built on a volume of data. It has nothing to do with you as an individual, nor with your history, or genetic package.

When big bright pink trash bins imprinted with that infernal pink ribbon began showing up around town, I blew a small gasket. PINK TRASH BINS? We are celebrating breast cancer with trash bins? You’re kidding, right?

I understand people think they are doing the right thing by telling you how lucky you are to have “caught it in time,” to be alive. Not dying isn’t lucky. If I were lucky, I would still have breasts. Not getting cancer would be lucky. Mostly, just be nice. Unless you’ve been there, you don’t get to offer advice. If you’ve been there, you can share. Otherwise, say something polite, then shut up.

Surviving is grueling and exhausting. We get tired, we have good days and bad. If we are suffering, we want commiseration. If we aren’t in physical distress, laughter is a great medicine. I don’t need friends to tell me not to worry — I know I shouldn’t and we all know I will — but humor is the best gift you can give. It’s free, too. I love to laugh. On the other hand, if this is one of those days during which I want to bitch at the unfairness of life, that should be okay. Friends don’t tell friends how to feel. Cancer is scary: if I have to cope with it, so do you.

If you want my address to send your check or money order, let me know!

Here’s a link that might help give perspective and maybe give someone a chuckle, too. Laughter is good for the soul. It isn’t going to cure anything, but it feels so good!

On Being A Survivor: Not Dead Yet

It’s hard to believe it’s already the 10th of October. The days are flying by and I feel like Alice in the Red Queen’s race  in Lewis Carroll‘s Through the Looking-Glass where the Red Queen and Alice are constantly running while staying in the same place.

“Well, in our country,” said Alice, still panting a little, “you’d generally get to somewhere else — if you run very fast for a long time, as we’ve been doing.”

“A slow sort of country!” said the Queen. “Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!”

The Red Queen’s race from “Through the Looking Glass”

I know I’m retired, but where is my spare time? How did I ever find time to work?

Today marks the 2nd anniversary of my double mastectomy. Like someone falling from atop a very tall building who hasn’t yet hit the ground, I say “So far, so good.” Supposedly, if you survive for five years, you are reasonably likely to survive for five more. That makes me 40% of the way towards being half-way likely to have a normal lifespan. Unless something else gets me. Just because you’ve had breast cancer doesn’t mean you aren’t going to get another kind of cancer or die of a heart attack. My first husband survived kidney cancer only to die of heart disease. Some people are just lucky.

I feel fine, or as fine as my advancing arthritis and other assorted ills allow. I also felt fine when I had cancer in both breasts, so feeling fine could easily mean that whatever is killing me, I don’t know about it. Yet. One of the reasons cancer is so dreaded is its lack of early warnings. By the time you have symptoms, it’s too late. I had a double mastectomy so I’m unlikely to get breast cancer again. I don’t have breasts. If I get something, it will be fought on a different battlefield, like my lungs, stomach or pancreas.

I come from a cancer-riddled branch of the family tree. My brother died of pancreatic cancer five years ago. He was younger than I am now. My mother, at my age, was on round three having already lost both breasts in previous bouts and in that final dance, the cancer had migrated to anywhere her lymphatic system could carry mutated cells. A few years later, she was gone. I look in the mirror; it’s eerie how much I  look like her.

I don’t usually dwell on my odds of living to a ripe old age. It’s pointless. Statistics are based on a lot of people who aren’t you, don’t have your history. That’s why you’ll never get an oncologist to give you an answer to the question “What are my odds of beating this?” They don’t know. They can quote statistics, but they know better than anyone how meaningless statistics are.

Despite the dice being heavily loaded in favor of cancer winning the final round, cancer hospitals do virtually no screening for early detection. They won’t do anything unless you make so much noise you manage to overcome their protocol. ALL protocols are based on statistical formulae. Every hospital has its own protocol. Some perform a few routine tests, but many, including Dana-Farber, do not. Whatever the protocol in place for your institution, every oncologist based there will follow it with religious ferocity, regardless of how absurd it may be for you.

Red Queen

Red Queen (Photo credit: Omnitographer)

The day you are diagnosed with cancer, you enter a tunnel. You have no choice about where you’re going or how you will get there. You will just do what you are told until you are “in remission” or dead. Cancer patients aren’t people. We are “cases.” Maybe that’s how oncologists cope with their jobs. It can’t be easy. Regardless of your medical history, they will doggedly follow the protocol and will not deviate. At least not without one hell of a fight.

Dana-Farber is a fine institution, but they have a protocol that says screening is a waste of money, so you wait until you feel a lump or have symptoms indicating something is wrong. I passionately disagree with this approach. It’s stupid.  Getting my doctor to deviate from it (which I did, but not easily) was ridiculously hard. I succeeded by becoming such a nuisance it was easier to give me what I wanted (a chest CT) than keep fighting. I have been sick a lot and know that passivity can be a death sentence. If you want to live, you have to step outside the natural tendency to assume that your doctor always knows best and recognize that you’ve lived in this body a long time and know it better than any doctor possibly could. That many doctors refuse to recognize that patients know what they are feeling and know when something is “off” is infuriating and dangerous. I’d like to say that they dismiss women more than men, but I don’t think that’s true anymore. It was, but now they treat everyone as if they are stupid. Equality has been achieved.

Call me crazy, but isn’t early detection the gold standard in cancer care? Without screening, how early are you going to detect anything? Just a question for you medical types out there.

In theory, I have a good chance of never getting this cancer again. It was caught while both tumors were small. Both were a type of cancer (but not the same type) that are slow-growing and not very aggressive. As far as anyone was able to test, there was no sign of it having spread anywhere and the surgeon, who is very good, left wide, clean margins. Margins are very important in cancer surgery. You get to learn all about this while being treated. But, as one cheery oncologist so aptly put it: “It just takes a single stray cell.” He smiled. This is what passes for a joke in the cancer business.

I heave a great sigh. I can’t pretend it doesn’t bother me. Of course it bothers me. I’m not stupid. My mother died of breast cancer and my brother of pancreatic. Both maternal grandparents died of cancer too. It doesn’t take a genius to recognize a pattern. Survivor means you aren’t dead yet. Like being an alcoholic, even if you’ve been on the wagon for decades, you aren’t cured … you’re just in remission.

Last March, just as I was about to turn 65, I went for my quarterly dose of terror. All went as expected and Garry and I were in the car on the way home when my cell phone rang. It was my oncologist.

“You have to come back.”

“Why?”

“We need to rerun your blood tests.” I hate blood tests. I have no veins.

“Can I come tomorrow? We’re half way home …”

“No, come now. Just turn around and come back.”

That is not what you want to hear from your oncologist. Just having an oncologist is bad enough, but hearing him say your blood test needs to be redone is stomach churning.

Back we went. Zip, zap, zing. Before I could say “Hey, wait a minute,” I was in the emergency room, on a gurney and in a room hooked up to intravenous drips and who-knows-what-else. I had no idea what was going on. As far as I could tell, I was fine. My blood test results disagreed with my assessment and had triggered the alarm to my medical team. It was March 8th, three days before my birthday. The last place on earth I wanted to be was in hospital with tubes everywhere.

If any of you have watched Woody Allen movies, you may recall that he’s always convinced he has a brain tumor but no one ever takes him seriously. I am the antithesis of Woody. I think I’m fine. Everyone else is getting hysterical. It turned out the doctors really were convinced I had a brain tumor even though I had no symptoms of a brain tumor, other than being a nut case, but that was not news. Physically, I felt better than usual. Any symptom I had was part of a known problem already being treated or was being ignored because it’s untreatable.

Cutting a long story short, I had very low blood sodium levels. So low that the medical team was surprised I wasn’t dizzy and falling over. Typically, very low blood sodium is a signal of a tumor, often a very big brain tumor. We had skipped over benign possibilities and gone directly to the scariest possible scenario. At least they were taking me seriously. That’s good, right? Thus began the hunt for my big tumor. I was imaged, probed, poked, and biopsied from top to bottom. I particularly enjoyed the one where I had to drink a lot of barium because believe it or not, it tasted better than the food I’d been getting and was significantly more filling.

Before I escaped, they had run every test they could think of and a few others, too. Nothing. Normal. Clear and clean. The good part of this experience was I got to know what few cancer patients ever know. As far as current medical technology could tell, I had no sign of a tumor anywhere in my body. I hated being in the hospital, but in the end, it was worth it just for the reassurance.

I was very firm about being released before my birthday. I’ve been in one or another hospital for two birthdays and two wedding anniversaries. I didn’t care to spend another milestone in a hospital bed.

I’d have been more sanguine if  the food hadn’t been so awful. You would not believe the terrible things a hospital kitchen can do to an innocent chicken. Or worse, a piece of salmon.

I Digress

When I was having my initial surgery at the Faulkner Hospital in Boston, the food was terrible (of course), but it sounded great. These days, instead of showing up on a pre-arranged schedule with something inedible, you can select something inedible from a beautifully designed and professionally worded menu. In some hospitals, you can call for room service and they’ll feed you any time you want, as long as it’s before the kitchen closes, usually around 6 or 7 in the evening.

My friend Cherrie was staying with me at the hospital. She is the definition of a good friend, the one who cancels her life and sleeps in a hard recliner in your room while you try to come to grips with having been surgically redesigned. This is a digression to my digression.

The menu of the day featured “honey-baked salmon.” I love salmon. Actually, I like most fish, but I particularly like salmon. How bad could it be, right?

Our dinners arrived. I don’t know what she had ordered, but it wasn’t the salmon. I picked up my knife and fork with every intention of cutting off a piece of fish. The salmon fought back. I worked a little harder. Maybe I was weak from surgery and drugs. Finally, I managed to separate a piece of salmon and after some effort, spear it with my fork. I put it in my mouth. It continued to fight, battling each attempt by my incisors to incise. It seemed to grow in my mouth. The more I chewed, the bigger the piece grew. Finally, I swallowed it.

“Cherrie,” I said, ” I can’t eat this.”

“It can’t be that bad,” she said.

“Oh yes it can,” I assured her.

She took a piece, put it in her mouth, attempted some chewing, and spit it out. “What did they do to this? Is this edible? Is this fish? Is this food?” We started to laugh and could not stop.  The more we laughed, the funnier it was. The only problem was I was at the post-operative stage when laughing hurts. I was full of tubes, drains and stitches. Nonetheless, laughter felt good. Pain and all.

I could not answer her question. It looked like salmon. Right color and shape, but its appearance was a trick of the light, perhaps done with mirrors. It was really a building material, perhaps a salmon-shaped roofing tile.  We stared at it for a while, then shared Cherrie’s dinner. Conclusion: Do not order fish in a hospital. Bring your own food or consider fasting.

End of digression: We now return to our show, already in progress

Probably half a million dollars worth of tests later (don’t knock Medicare; I’d be dead without it), the answer was “idiopathic something or other.” Idiopathic is medical terminology for clueless. I had test results but no discernible cause. Fortunately, they did have a solution despite lacking a diagnosis. I would forever have to limit my intake of “regular” fluids. No plain water, fruit juice, or soda. I can have two cups of coffee (or something else “normal”), but everything else I drink has to be full of electrolytes, in other words, a sports drink. Me and Powerade Zero are now close buddies.

Thus as of last March, I didn’t have cancer and after I started drinking sports drinks, I stopped having foot and leg cramps that had plagued me most of my life. My family doctor thinks I probably always had low sodium levels that were borderline or marginally deficient. When I was tested in March, I had been drinking more than usual because I was chronically slightly dehydrated and was trying (ironic, eh?) to drink more. It was odd being told I to limit my fluid intake. Unless it’s a sports drink. I can have as much of that as I want.

I began drinking electrolytic sports drinks exclusively, other than my morning coffee. You would have to kill me before I would give up morning coffee. It must be accomplishing something because I am not thirsty all the time. Previously, the more I drank, the thirstier I got … so apparently there was something wrong, but no one knows what. Maybe it’s one of those genetic anomalies that seem to run in my family. Fortunately, the solution was simple and I really have learned to be okay with, if not actually like, Powerade Zero. Who’d have thunk it, eh?

Now, it’s October. I have another oncologist appointment coming up right before Thanksgiving. I do not expect to hear anything exciting. In fact, I very much would prefer to limit all medically related excitement for the remainder of my life.

Two years. Life changed a lot, physically and mentally. I hate being told I’m brave and am annoyed by people who think that it’s a blessing to survive something I didn’t think I should have in the first place. I am anti-pink think and still trying to reconcile this body with someone I recognize as me. I often feel as if I have been stuffed, sausage-like, into a casing humorously referred to as my body. I have a lot of negative feelings about my body. My fake breasts and I are not on good terms. They feel like alien invaders. They look fine, but they aren’t me.

I don’t have any wisdom to offer anyone except for one thing: Get the best surgeon for whatever kind of cancer you’ve got, someone with a lot of experience and a superb reputation. Do not go to the most convenient hospital unless it is also the best hospital. That initial surgery is the most important one you’ll ever have and if it isn’t done right, you can’t call for a replay.

I survived because I wanted to live. The alternative was death and I wasn’t ready for that. Surviving — and whatever it is that motivates you — is a very individual and subjective. What helped me were my husband, my best friend, a sense of humor, and reading a lot of escapist fiction. Now, I blog. I take pictures. Photography has been my hobby since I was given my first real camera and I have always been a writer. Blogging gives me freedom to write whatever I want and. It’s nice finally not having a boss telling me what I’m allowed to say.

I will forever feel that today is my real birthday.

Autumn is back. My year has come full circle. Trees are gold and red.

I’m alive. Good enough. Whatever the future holds, I’ll deal with it when it gets here.

Everybody dies, but not today

Today was beautiful. Bright and shiny as a new penny, the trees are in the first stages of color change, with scarlet and brilliant yellow patches against the dark green of late summer foliage.

I went out to get my annual flu shot that ought to be the “Avoid The Flu” shot. I have begun to always carry my little Canon point and shoot camera in my bag so if something catches my eye, I capture it and take it home with me. I’d prefer using the Olympus, but I don’t feel comfortable just dropping it into my bag. I’m enough of a klutz these days that I’d probably drop it.

Thus the truism: The best camera is the one you have with you. Ironic really. My high quality lens is home and my modest little Canon is taking the pictures. Tomorrow I’ll bring the good camera. Unless it rains.

The color is coming fast now. September is ending. In less than two weeks, we’ll be at the peak of whatever color we’ll get this season. By the end of October, most of the leaves will be stripped off the trees, hip deep in our yard.

That’s the normal cycle in New England, if there is any such thing as “normal” here. If we get a storm with heavy rain, Autumn can wash away in an afternoon. This year, I’m trying to not miss anything. I’ve already missed too much.

My sense of urgency is exacerbated by having been sick and losing years of my life while recuperating. Last time, it was breast cancer. It wasn’t my first  fight for life and it obviously won’t be the last. We are all going to die: it’s only a matter of when and from what cause.

Cancer is a game changer. No one gets it and walks away unchanged. It certainly did a number on me.

I don’t like talking about cancer. I hate that I lost both breasts to two simultaneous tumors, one per breast. The odds against that are astronomically huge. It doesn’t happen. One in three million or something like that. But, there is always that “one” and apparently I am she.

I tell folks the Faulkner was having a two-for-one sale on implants and I couldn’t turn down a bargain. But really, I got mentally bludgeoned twice in two weeks. It blew out all my circuitry. As much as surgery weakened and hurt my body, learning I had cancer twice was worse. It damaged my soul and left me in a wilderness that was dark, strange and full of monsters.

Cancer is sinister. There you are feeling okay. You have no symptoms, Nothing is bothering you. Then you discover you not only have cancer, but you have had it for who-knows-how-long. While you were doing your everyday things and time was calmly passing, something was eating you from the inside and you didn’t even know it. How could I not know or even suspect?

It was just this time of year, two years ago. My surgery was two weeks away: October 10, 2010. Both breasts would be gone, replaced by “filler” that in turn would be replaced by silicon implants.

My body took longer to heal than I thought it should. I don’t know why, but for some reason, I didn’t think the surgery would be a big deal. I’d survived so much surgery and nearly died multiple times. I was pretty sure I wasn’t going to die this time, so I figured anything that wasn’t going to kill me couldn’t be serious.

The surgery was nasty, but pain is an old friend and all I had to do was wait it out. The emotional hit was something else. I had lost my breasts which was bad, but I had lost me and that was worse. Whatever that particular thing was that made me, “me” was gone.

I hated the way I felt. I hated being dependent. I wondered why I was alive, except I knew that I had to keep going. If not for my best friend and my husband, I don’t know what would have become of me.

For them, I fought darkness. I couldn’t do it for myself because I had no self, but love is a strange thing. It poked and prodded at me. They were trying so hard for me, I had to try for them. So when I felt I couldn’t breathe, I did anything I could to keep my mind away from the dark places. I read relentlessly. I talked to no one and went nowhere. Healing for me is very private. Sleep was dangerous because bizarre images left me with a head full of twisted images, which, it turned out, were the result of the medication they were feeding me.

I hated my body. It hurt. Everywhere. The drugs that were supposed to prevent a recurrence left me in constant pain, bloated and looking like a parody of the Pillsbury dough boy. My fake breasts look normal to the world, but they feel alien to me.

Then it was autumn. Again. For a full year, I had not left the house except to go to a doctor or hospital. The lure of the autumn reached me … the changing light and bright leaves made me restless. I listened to the wind and went out to play.

I was better. My good days were as common as bad ones and I was not so sad. I wanted to see friends. I bought a new camera and started to shoot, learn new techniques. I began to write again. I was back. It wasn’t the old me, but it was someone I recognized.

I’m not the person I was before. Serious illness, lethal illness, changes you. I’ve fought my way back again. I’ve lost body parts and the damage to my self-image seems to be permanent. But who knows? Time changes everything. It’s slow and relentless. Incremental little alterations that carve a canyon where once a mountain stood.

Please don’t tell me I am lucky or brave. If I were lucky I would not have gotten cancer. Survival is an instinct, not valor. No pink ribbons either. The whole “put on a happy face, cancer doesn’t bother us” is bullshit. If you aren’t bothered by cancer, you have some serious psychological issues you need to address. Pronto. Or you are getting better medication than I am.

Today, blogging is my drug of choice. I write about whatever I feel like writing about. I spent a lot of years following instructions. Now I do it for fun.

Another year has rolled around. My New Year begins with the full moon tomorrow. Autumn is back. The circle is complete. Trees are gold and red and I’m alive. These days, that’s good enough.