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