SUBLIME TO RIDICULOUS IN ONE EASY STEP

Daily Prompt: Linger

Right now, my entire life is one long linger. I am waiting for the other shoe, figuratively speaking, to drop. Waiting to be repaired. To be hurt, then to recover. I may not show the stress such waiting causes in any outward display (other than bad temper), but my dreams tell a story. Anxious dreams, wake-up-screaming dreams. All have one theme in common — events that are out-of-control.

Clearly, I read too much fantasy. The other night, I dreamed my real self was murdered by killing my shadow wraith which was roaming somewhere far distant from my flesh and blood self. I remember being surprised: I didn’t know you could shoot a wraith and have the attached body die. Dream and learn, eh? That isn’t Freudian — that’s literary.

75-Ghost-NK-081

Last night was more mundane, closer to home. A friend of my daughter’s who seemed to have moved in (her friends never want to go home) realized her clothing was dirty, so she decided to wash it. By hand. Then leave the piles of soggy garments all over the house.

I was in the process of trying to corral the wet laundry before it destroyed the floors … and I woke up realizing, hey, it’s laundry day again.

Laundry

Caught as I am between chapters of my life, I find myself making strange (hilarious?) discoveries. Apparently when the plastic surgeon rebuilt my breasts (implants) following the double mastectomy a couple of years back, she used muscles as part of the construction. Factory-original breasts have no muscles. There are muscles on the chest wall and off to the sides, but real breasts are not designed for men to ogle but to feed babies. Milk production. Way back in the long-lost past, I had (for a few months) “working breasts.”

That was more than 45 years ago. Last night I discovered I can make my breasts do all kinds of things. I discovered those newly arranged muscles! Together and independently, the muscles work and since I’m healed from that surgery (finally, just in time for the next one), I can control them. Cool.

Fake breasts

This was a startling discovery. I stood in front of my mirror making my breasts dance and salute for quite a while. Then I came out of the bedroom and showed Garry who laughed, but for some reason, did not think making a video to post on YouTube (it might go viral!) of my new talent was a good idea. Spoil sport.

This is what happens when you are on a long intermission between life and life. You linger.

Of course, I’d make every attempt to linger anyhow. The single thing I really don’t want to end is my life. I want to live. Life is the ultimate event and I want to keep it going.

I’m lingering with enthusiasm and verve.

More Lingering:

  1. My pre-game Pre-Game | The Bohemian Rock Star’s “Untitled Project”
  2. Daily prompt: Linger | The Wandering Poet
  3. A Love Affair With Southern Italy | AS I PLEASE
  4. Home Sweet Home | Views Splash!
  5. Step by step | Le Drake Noir
  6. Daily Prompt: Linger | tnkerr-Writing Prompts and Practice
  7. Linger Longer… | Hope* the happy hugger
  8. Never fly solo | Perspectives on life, universe and everything
  9. If ever | Perspectives on life, universe and everything
  10. Love for lingering, drumming | Journey of a Culture Carrier
  11. Lingering longer | Sue’s Trifles
  12. The Trouble with Lingering | Wise Woman in Training
  13. Daily Prompt: Linger « cognitive reflection
  14. I see stars | littlegirlstory
  15. Linger At The Beach | Lisa’s Kansa Muse
  16. Lingering, all day today | sixty, single and surviving
  17. Linger | forgottenmeadows
  18. Not Wanting this Moment to End. Daily Prompt | Angela McCauley
  19. Linger | The Library Lady and Rosie Bear
  20. Daily Prompt: Linger | CHRONICLES OF AN ANGLO SWISS

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.

75-BostonView__09

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.

75-UpwardsNIK-31

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.

What else could go wrong?

“What else could go wrong? How much worse could things get?”

My husband and I have an agreement. NEVER say those lines. Ever. Never say them, don’t even think them.

No matter how bad things are, no matter how dark life looks, there is always something else that can go wrong. If you are alive, you are already money ahead. You could be not alive. Many were and no longer are.

A fair number of people I counted as friends and loved ones are long gone and many more are on that final leg of life’s journey, in the immortal words of Tom Lehrer “Soon we’ll all be sliding down that razor blade of life.” Ouch.

CYCLONE-a

Yesterday, when I was deep in the miasma of self-pity … my least favorite place to be except in a hospital bed waking up to realize “Oh shit, this is going to be really bad …” I thought to myself, “Hell, you really ARE going to die.”

Then I said out loud. “Asshole. Of course you are going to die. Was there ever the least bit of doubt about it? It was never an “if.” We are all going to die. When and how remain the only questions, but that’s a journey we are all taking.”

None of the people I know have gone gently into that good night, if indeed it is a good night. No one has come back to tell me about it. I’ve been waiting for at least one of them to drop by and give me the word, let me in on the biggest secret of all. Is there anything after? Is there an after? And if there is … how and what is it?

Despite the ever-increasing number of close friends and family who have gone to there — wherever that may be — no one has reported back.

Yesterday, I was counting all the things that could go wrong that have not gone wrong yet. I could be dead instead of whining about how I might be dead. I could be living on the street instead of wondering how I will meet the next mortgage payment. The car, running fine, could stop working. The boiler could blow. The deck could collapse. The electrical system could fry.

dark cemetary

More friends, more loved ones, could be sick, could die, could disappear. The television could stop working (no, not that, anything but that) or worse — be still my ailing heart — we could lose our high-speed Internet connection. Talk about a heart attack — that idea could do me in.

So what could go wrong? You think things couldn’t get worse?

They can go wronger and they can get worser. And given the shit-storm life is, it probably will. Go wronger. Get worser. So I should shut up and enjoy whatever there is to enjoy because … wow. You never know, right? Well, actually, you do know. You just don’t want to think about it. And I don’t blame you one little bit.

Tom Lehrer always cheers me up.

Weekly Writing Challenge: A Fine Recipe for Baked Me

Note: This is a complicated recipe. Full preparation may take decades. Patience is required.

Part I: 

Mix three scant cups of child abuse and sexual molestation. Combine carefully (do not over-beat) with a double handful of art, literature and music. Add a tablespoon each cumin, garlic, salt, pepper. Omit sugar. This recipe does not call for sweetening.

Add thousands of library books, and hundreds of hours deep in the stacks of the New York public library. Add orange juice until a soft batter is formed. Mix gently but thoroughly until you can no longer tell fact from fiction. Cover and refrigerate for a decade or so.

I'm in the middle, Mom and my sister Ann are on the right. Code Red.

I’m in the middle, Mom and my sister Ann are on the right. Code Red.

Part II:

Add a handful of excellent LSD, half a pound of finely ground marijuana to 20 years of education and a bachelor’s degree. Include one Steinway grand piano, an erudite husband, a bunch of wonderful, loving and supportive friends, one crazy college radio station and an old typewriter with glass sides.

NOTE: Keep track of the future husband over there (the quiet, handsome one). You’ll need him later.

Add yeast. Knead several times. Cover, then put aside in a warm place to rise. Add a baby, catastrophic medical bills, a broken spine, a husband with kidney cancer and a heart attack. For spice, use two mortgages, car payments and a career in publishing. Don’t forget a couple of fantastic women friends.

Part III:

Put all the ingredients in a big greased bowl and knead until smooth. Put aside for a separate rising. Pack everything and move it to the city of Jerusalem. That’s pretty far away, so pack carefully.

86 Derech Hevron, Jerusalem, Israel

Now, add one stupid, mean, and abusive husband, a couple of terribly confused stepchildren, the aforementioned son, 60 hour work weeks and a heaping dose of new technology. Put them to cook in a city full of magic and ghosts of ages past. Add a rounded tablespoon of mysticism, a few ancient artifacts discovered along the road.

Part IV:

Remove Mother and aunt, reserving enough cash to get back to the U.S.A. Don’t forget the rest of the recipe! It’s still rising. Check your fridge.

Defrost future husband. Warm to room temperature, then heat up with lots of cuddling, hugs, encouragement and faith. Grab that risen dough from refrigerator. Knead thoroughly. Build a teepee, then separate batter into four pieces.

Braid each loaf and bake at 400 degrees until each loaf is golden, suitable for a feast.

Photo: Debbie Stone

Photo: Debbie Stone

Serving Suggestions:

Sprinkle with dog hair and oak pollen, nest in a new career and top with a dollop of joy.

Ignore spinal calcification (it’ll still taste great, but you’ll have to eat sitting down). Be sure to remove two large malignant breasts (they can ruin the feast) while retaining a spicy sense of humor. Serve warm.

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?

worst charities

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.

Daily Prompt: Take Care – Doing the best we can with what we’ve got

I’ve been sick a lot during the last dozen years. I’ve been in and out of the hospital too many times to count, been nearly dead, then miraculously better. I’ve had major body parts redesigned, removed and reconstructed. I have had to care for myself much of the time, even though I would often have much preferred assistance and support. Help hasn’t always available or what was available, wasn’t what I needed.

Some people aren’t good caretakers. Even with the best of intentions, not everyone has a knack for dealing with sickness or disability. For some of us, caretaking is as natural and automatic as breathing. If you are lucky enough to have one of these people in your life and he or she is able to help you when you need it, thank God for your good fortune. And don’t forget to thank the person who is helping you!  God may have put him or her in your life, but sincere gratitude and love directly from you to your caretaker should be effusive, copious, and frequent. Loud, too. Cards. Flowers. Whatever. Because many of us spend a lot of our lives helping others  … and you would be surprised at how rarely our efforts are rewarded with genuine appreciation. As often as not, the people who need us resent us even as we defer our own needs, put our careers and personal lives on hold so we can help someone who needs us.

Dana Farber lobby

Many people when confronted with a seriously ill friend or partner, are at a loss. Try not take it personally. It’s not personal. A husband faced with a wife who can’t perform basic self-care may closely resemble a deer caught in headlights. There’s more involved in that response than inexperience or ineptitude, though both play a role. There is fear, deep gut-wrenching terror. The person on whom you have always depended is suddenly looking to you for everything.  What if he/she dies? I’ve seen spouses effectively paralyzed, panicked by a diagnosis of cancer or something else life threatening. Most recover enough to be at least minimally helpful. Others remain dazed and pretty much useless.

We do the best we can. Life doesn’t offer unlimited choices. There’s no menu of options. If you have been hospitalized and will need help after release, you will probably be questioned by a hospital social worker or home care coördinator. They will ask you if you have support and assistance in your home. Since none of us wants to admit our family isn’t going to be able to care for us, we lie. Bad enough to need help, but having to admit it to a stranger?

A stiff upper lip won’t to get you through post operative recovery. You need someone to help you in and out of bed, change dressings, empty drains, help you take a shower, shop for you and prepare meals.

If you can’t stand up or walk. you aren’t going to be shopping and cooking. If you have no one who can take care of this stuff, you have to ask for help. Visiting nurses and other home care is usually available a few times a week, but if you live alone or with someone who is not likely to do what needs doing — for whatever reason — you might be better off in a rehab facility.

I find myself smiling ruefully as I read posts by people who obviously have been sicker than a case of the flu. They can’t imagine being too sick to get out of bed. Yet it happens. Eventually, it happens to everyone because we all get old, we all get sick — and ultimately, we die. Every last one of us.

There comes a time when we need help. Humility can be a good friend as you tread this unfamiliar road. Don’t worry about the imposition (although you will, of course). Eventually, you will find yourself giving to someone else what you received. It’s how we humans manage to survive the bad stuff that happens. We help each other. Which is what we are supposed to do.

- – -

 

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.

CustomerSvcFallonQuote

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

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.

cropped-96-dogwood-4.jpg

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

75-StructureHPCR-37

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.

75-WaitingHPCR-7

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.

75-WaitingHPCR-8

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.

75-StructureHPCR-7

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.

75-StructureHPCR-20

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.

75-WaitingHPCR-3

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.

The Bitter End – Radiolab

The Bitter End – Radiolab: Reblogged from Radiolab Podcast Articles

Doctor holding stethoscope

We turn to doctors to save our lives — to heal us, repair us, and keep us healthy. But when it comes to the critical question of what to do when death is at hand, there seems to be a gap between what we want doctors to do for us, and what doctors want done for themselves.

Producer Sean Cole introduces us to Joseph Gallo, a doctor and professor at Johns Hopkins University who discovered something striking about what doctors were not willing to do to save their own lives. As part of the decades-long Johns Hopkins Precursors Study, Gallo found himself asking the study’s aging doctor-subjects questions about death. Their answers, it turns out, don’t sync up with the answers most of us give.

Ken Murray, a doctor who’s written several articles about how doctors think about death, explains that there’s a huge gap between what patients expect from life-saving interventions (such as CPR, ventilation, and feeding tubes), and what doctors think of these very same procedures.

Jad attempts to bridge the gap with a difficult conversation — he asks his father, a doctor, why he’s made the decisions he has about his own end-of-life care… and whether it was different when he had to answer the same questions for his father and mother.

A chart of doctor responses from the Precursors Study:

Preferences of physician-participants for treatment given a scenario of irreversible brain injury without terminal illness. Percentage of physicians shown on the vertical axis. For cardiopulmonary resuscitation (CPR), surgery, and invasive diagnostic testing, no choice for a trial of treatment was given. Data from the Johns Hopkins Precursors Study, 1998. Courtesy of Joseph Gallo, “Life-Sustaining Treatments: What Do Physicians Want and Do They Express Their Wishes to Others?”

In the well spoken words of one of the many pe0ple who responded to this podcast:

Patrick Mathieu from Canada

For the past 10 years, I have been speaking to groups about the value of embracing your mortality. I wrote a book on the topic and was featured in a feature-length documentary film and interviewed on TV and radio (including an hour-long interview with Dr. Oz on Oprah & Friends.

I have always been amazed at Western society‘s ability to pretend that death doesn’t exist. We think it’s perfectly reasonable to make plans for what we’ll do with our lottery winnings, or to save for a retirement that we *might* get to enjoy, but no one wants to talk about the one thing in life that is absolutely certain. When we make the conscious decision to face death on OUR terms, we are able to access a tremendous amount of personal power. Thanks to Radiolab for this fantastic episode!

 

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.

75-DecSnowHP-17

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.

Pain isn’t always a warning … sometimes, it’s just pain

It’s remarkable how much pain a non-lethal medical problem — like a bad disc in your back or an intestinal spasm — can cause …. while you can be incubating a heart attack, stroke, or cancer without pain or any other symptoms.

My back is never going to kill me. It’s a disaster and hurts like bloody hell. It makes life difficult, but that’s all it will do. The pain may be worse or better, but that’s it. Misery without end, but not life-threatening. I get esophageal and intestinal spasms that mimic a heart attack so well I’ve been hospitalized because of them until they were diagnosed and are now controlled by, ironically, nitroglycerin tabs. They are considered “medically insignificant,” but the pain they cause is breathtaking to the point where I can’t speak and am almost paralyzed by pain. My husband recognizes the symptoms and can flawlessly find my pills in under a minute, including running down the hallway to the bedroom, coming back, and depositing two of them under my tongue.

Meanwhile, I had cancer in both breasts, but no symptoms.

Go figure.

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.

75-DFPipes-HP

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.

75-DFLobby2-HP

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.

75-DFMobile-HP

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.

75-DFWaitingRadiology-HP-1

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.

75-DFLobby-HP-1

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.

75-DFLobbyWurlitzerHP

75-DFPedals-HP

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.