THINKING PINK

Today is the ten-year anniversary of my breast cancer surgery. I would love to announce that “I’m cured,” but with cancer, you are never cured. You can be in remission — sometimes for decades — but it takes just take one cell to restart it. Moreover, having had cancer once or twice doesn’t mean you can’t get it again. The same or an entirely different kind. My mother had breast cancer twice, but died of lung cancer. My brother died of pancreatic cancer as did both of my maternal grandparents. It runs in the family. These days, it seems to run in everybody’s family.

In the course of cancer survival, I have come to thoroughly dislike pink, especially the toddler pink they use to raise money for breast cancer. It was never my favorite color. Too girly. Unless it’s a “hot” pink, it’s also not a color that looks good on me. Rosebud pink is almost as bad as beige. It makes me look completely washed out. Nonetheless, having had breast cancer I am besieged by pink and not just the color, but a distinctly pinkish attitude.

Fake breasts

I lost both breasts and got two nice fake breasts. Implants are not real breasts. They are vastly better than nothing, but they aren’t the right kind of skin. They have far less sensation than the originals. I wonder if they will ever stop feeling like alien invaders attached to my chest. Also, there are no nipples. The implants look fine under clothing but they aren’t me. I was going to do the whole thing including replacement fake nipples, but to get those fake nipple it mean two more surgeries followed by healing and then followed by tattoos because the new nipples aren’t pink. They are just skin-colored. For a while, i considered just getting interesting tattoos without the nipple adaptations, but finally, I realized i didn’t want anything. I’m not doing any nude photographs or going topless to the beach.

I have a bad attitude towards cancer. I’m supposed to celebrate my survival as if it is a miracle of miracles. It was top-quality surgery, but it wasn’t a miracle. i was just lucky that i had a slow-growing type of breast cancer. Even though it wasn’t discovered until it had been around for a while, it was still a relatively small tumor that had not spread into my lymph nodes. It was considered very non-aggressive. Actually, both tumors, were slow-growing, but one was much bigger than the other. My theory was and is that one breast had had cancer for quite a while and the other on showed up late in the process. I can’t prove it, but the odds of having two completely different tumors — one per breast — is unimaginably minute. I think by the time they found one and eventually the other, they were simultaneous, but didn’t start out that way.

Many of my friends have had breast cancer. It has become very common. Maybe it always was, but we didn’t know how to check for it. It is Especially common among younger Black women and any age Ashkenazi Jewish woman. But truth be told, breast cancer is common for all women. Any race. Any age. I’m told there’s a new test out that can detect it earlier without the painful mammogram. Nice, though it wouldn’t have helped me much because I went for six years between mammograms. The doctor forget to remind me and I forgot to remember. I had other issues at the time which were trying to kill me and other potential but non-lethal medical events got lost in the frenzy. If it had been a more aggressive form of cancer, I’d have been in more serious trouble, but lucky (?) for me, I had time to get it fixed. Three-and-a-half years later, I had to have major heart surgery. I considered that extremely unfair. The double mastectomy was bad enough and I was just pulling myself together when it was time for the next round of “life or death, then toss the dice and hope for the best.”

Women who haven’t had cancer point out that if I were better at smiling and telling everyone that I’m FINE, I’d be FINER.

I have stopped going places where people ask me how I’m doing and don’t want to hear the answer. Of being told my attitude is the problem rather than the disease. Many women want me to be upbeat. If I’m happy, it makes them feel safe. These women do not want to hear that sometimes — years later — I am still overcome by feelings of sadness and loss. I miss my breasts. We grow up believing with our breasts are a major signifier of upcoming womanhood. Having both of them removed tends to make you feel less womanly, especially when you are older and past the age of childbearing. It’s a major hit to your femininity. Regardless of whether you feel that this is a very anti-feminist attitude, it doesn’t change how you feel about having breasts.

I no longer like having them touched. They aren’t sexy. They aren’t me.

I’m supposed to celebrate “being cancer-free” except no one who has had cancer ever feels cancer-free. When your breasts are gone, replacements don’t feel like the ones you had before. Those are gone. I have a lot of trouble wondering why so many women have breast surgery to “improve” them. It’s not minor surgery. It’s painful and there’s a surprisingly long recuperation following surgery. No matter how well the surgery is performed, it continues to hurt. Not a lot, but the areas where muscles and ligaments were cut are always sore. Ten years later, they still hurt.

The point of being bright-eyed and bushy-tailed about having a bilateral mastectomy is to make other women feel less threatened. If you tell them how great you feel, they don’t have to worry. Or at least, not worry as much. I grant you that gloom and doom might not be a great choice, but neither is pasting a fake smile on your face and telling everyone how happy you are when you aren’t. We should be allowed to feel how we feel — even if it’s not great. We’ve had to deal with a major physical loss. Being repeatedly told we aren’t allowed to feel unhappy and should stay positive is unkind and frustrating. It ought to be okay to be upset, to mourn our losses, to wonder “why me?” People 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?

I come from a family where cancer has taken a lot of lives. Getting it wasn’t exactly a bolt out of the blue. The last words my mother said to me the day before she died was “Get regular checkups.” There are many genetic links for breast cancer, especially for young Black women and anyone with a family link to Ashkenazi Jewishness. Two known (and testable) genetic links have been found (so far) for me, but  insurance only pays for one — the more common marker. What good does all the research do if we can’t afford to use it?

On top of all of this is the “pink” culture. Why pink? Why not turquoise or burnt orange? Along with “pink think” comes a kind of glorifying breast cancer as if it were a kind of gift that helps you “understand” yourself better. Oh please! Breast cancer isn’t a “test” which, if we pass, makes us heroines. What it usually means is (1) we found it early enough to get it fixed and (2) we had quality insurance. Moreover, I am entitled to be pissed off about it. Someone thinks it’s a gift, but I’ve never met someone who actually had it who felt that way. This is a country that seems to believe that denial really improves your health.

It doesn’t. I’ve had enough health issues that I can’t afford denial.  Right now, we are seeing an entire nation in which at least 1/3 of our citizens are in a dangerous state of denial.. No one with a serious illness  (or potentially a candidate for such an illness) can afford denial. Cancer, heart disease — and COVID-19 — is not an attitude problem.


Absolutely no evidence of any kind exists to confirm the widespread belief that a positive attitude results in a better survival rate for ANY disease. Being in a persistent state of gloom is a bummer, but it won’t change the outcome of your illness.


On top of everything else, the sappy postings on Facebook that urge everyone to pray for all the people suffering from cancer. Prayer seems to be the only answer. Personally, I think sending money would be more useful. Sick people have expenses. Children. Mortgages. Car loans. We have not abjured things that cost money. More accurately, we usually don’t HAVE any money. If we had any, by the time we are done with treatment, we have a lot less than we used to have. Personally, I’d be delighted to get an infusion of money. I’d love to have someone come weekly to clean my house. Paying the credit cards, improving our 1973 kitchen, and repaving the driveway are high on my list of things I’d really love to do. Having enough money to fix my broken tooth would be nice too — and enough money to get new eyeglasses would also be a nice touch.

Offensive pink trash bin. Celebrating breast cancer with trash bins?

So if you are wondering what to do with your spare money (does anyone actually have spare money?), feel free to send cash, personal checks, and money orders. I’m sure we will do something useful with it, If you need information on how to make a direct transfer into our account, I’m sure we can work it out. Unlike standard charities, I can invite you over and show you exactly where the money was spent and how it improved our lives. Isn’t that better than giving to some giant charity where most of your money goes to pay the CEO?

Cancer is typically a financial disaster for families. Everything — including the quality of the care you receive — depends on your insurance as well as the facilities available where you live. Major diseases — all of them — deplete your resources and can leave you with nothing.

No one wants to complain all the time. It’s humiliating, boring to listen to, and even more boring to explain. A real rundown of one’s health is a lot more complicated than plastering a big smile on your face and saying: “I’m FINE!” It’s bad enough to be sick and having parts removed. When you’re also dead broke and can’t see any way to get out from under the debt, it’s so much worse.

I remind myself that we are all here on a temporary permit. No one gets out of this world alive. Anyone can be felled by a speeding car or hit by a meteor. We are born without a warranty. We don’t even get a cheesy 90-day guarantee for medical treatments. If it doesn’t work, oh well. They don’t do it over for free or even at half-price.

Everyone wants to be fine. We plan to be fine. We base our lives on being fine. Sooner or later, you won’t be fine. That’s called “being human.”


A positive attitude will not alter the course of a disease.


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? 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 painful experience is phony and embarrassing. Forcing women to smile when they want to scream is an old, old story. We’ve been doing it for centuries.

I understand people think they are doing the right thing by telling you how lucky you are to have “caught it in time.” Lucky to be alive.

Not dying isn’t lucky. If I were lucky, I would still have breasts. Not getting cancer would be lucky.


Friends don’t tell friends how to feel.


So it has been ten years. It doesn’t feel that long. It feels like yesterday. All of the bad stuff somehow feels like yesterday. Weird, isn’t it?

LIFE, DEATH, CANCER, AND DIGNITY

I don’t talk much about the “reality” of having cancer. It’s not the same for everyone and my cases (two, one for each breast and each different from the other) were relatively mild. The lymph nodes were not attacked, the tumors were (relatively speaking) small. The bigger one in my right breast was the size of a small lemon and the other was half the size. I was assured they were slow-growing but at the same time, I was also warned that it only took a single wandering cell to make it grow somewhere else — probably my lungs.

I had a choice between two complete mastectomies or just having the tumors removed. But I had highly cystic breasts. Figuring out what might be cancer and what was “benign” was going to be very difficult for everyone, especially me. I went with the mastectomies.

To keep the hours of surgery down, I had two surgeons working, one on each side, then two plastic surgeons. A previous hospital had told me they couldn’t give me implants because I had so much scarring from earlier surgeries. I went to a better hospital with more experienced doctors. Seek out the best, most-experienced surgeons you can find. Try to find one who has done hundreds of surgeries like yours. This is not the time to give a newbie her first opportunity. And find a surgeon who listens.

Prefer women. They understand. They have the same parts you do.

Dana-Farber Cancer Hospital (local outlet)

The odds of my getting cancer in both breasts at the same time were staggeringly small. I pointed out that I probably didn’t get them at the same time. I had one and over the years when my doctor forgot to send me for a mammogram, I grew the second. Even though my mother had died from metastasized breast cancer, neither of the tumors was genetically linked. There are lots of genetic linkage involved, but they only know a few of them and insurance will only pay for one test. Pick your tumor. It’s the cancer lotto. Men don’t get our connection to breasts. They see them as a removable piece to get rid of a tumor, not our connection to our womanhood. Where we nursed our babies.

Breast cancer is frighteningly common. There’s a theory that if you live long enough and your were born female, you will get it. Men get it too, by the way and it often gets missed. They aren’t trained to feel for lumps.

When I woke up from surgery, I already had two breast implants in place. This was an act of extraordinary generosity by my plastic surgeon and her associate. Usually they wait for the original surgery to heal, but they felt I needed to be able to look at myself and know I was still a woman. I am deeply grateful. With all the other madness you are going through with cancer, it is good to have surgeons who are also concerned with how you feel about your body and are willing to help.

They don’t keep you long in American hospitals. There’s a rumor that it’s because insurance companies don’t want to pay the money, but the true reason is that there are so many diseases in hospitals that the moment they can get you out of there, they send you home. I’m not talking about poverty stricken hospitals out in the country, but top-notch research and surgical facilities. They want you to leave healthier than when you arrived — and that means getting you out as fast as possible. Also, the odds of your getting edible food are better at home — even if it comes out of a can.

Honestly, I don’t remember much. I know I was in pain, but I was taking so many drugs, my brain was very blunt.

It has been ten years since the original surgery. I have no sign of regrowth, but that doesn’t really mean much. Because of the heart surgery and my metal pacemaker, I can’t have another MRI, so it could have spread. My grandparents, on my mother’s side, both died of pancreatic cancer as did my brother. Just because you’ve had one kind of cancer doesn’t mean you can’t get another. My first husband had kidney cancer, but died of heart disease. It’s all a game of craps. Some of us get everything yet we live on for many years. Others seem completely healthy, get one bout of pneumonia and die.

Moral? Be nice to everyone. You just don’t know what’s coming around the next corner.

So for anyone struggling with cancer or heart disease now, do the best you can. Within the realm of reason, follow your doctor’s orders, but if you don’t feel that the treatment you are on is working for you, speak up. Sometimes medications make you so sick, you have to stop taking them. If you don’t tell them, they may not realize things aren’t going well. When they ask how you feel, tell them. Icky and unpleasant as it is, they need to know and sometimes, small things that don’t seem important to you may be much more important than you realize.

None of us want pity, but all of us want support, sympathy, and kindness. If you don’t know what to say to a sick friend, you aren’t alone. Potentially lethal disease tends to leave us speechless.

MY EARLY EXPOSURE TO CANCER PATIENTS – BY ELLIN CURLEY

During my pre-teen and teen years, it seems like a lot of people around me got cancer. Between the ages of eleven and eighteen, I was closely involved with five different people who had cancer and only one survived – my father.

Me at eighteen. My high school senior yearbook photo.

My first exposure to cancer was through my friend, Liz. She lived a few blocks away from me in NYC so we were allowed to walk to each other’s homes by ourselves. This meant that we knew each other’s families quite well. One day, when Liz and I were ten or eleven, I was at Liz’s house and noticed that her thirteen or fourteen-year-old brother was hanging around the house in his bathrobe on a school day. I asked Liz what was going on and she told me that he had been diagnosed with cancer (liver, I think).

Over time, I watched him lose weight and become like a walking, yellow-tinged ghost. Every day when Liz got on the school bus, I would ask her how her brother was doing. One day, the answer was, “He died this morning!”

I remember being stunned and not knowing what to say. Liz never talked about it much, but I always had the feeling that her parents never fully recovered from their loss. From then on, the house always had a sadness in the air. Liz grew up to become a doctor.

When I was fifteen and my Dad was 73, he was diagnosed with intestinal cancer and had a large portion of his upper intestine removed. I remember doing homework in his hospital room and getting friendly with his nurses. All the cancer was removed, with large margins, so thankfully, he didn’t need any chemo or radiation. While we were quite anxious before the surgery, afterward we were confident that Dad would be okay. He got prostate cancer in his late 80’s and died three weeks before his 90th birthday.

Me and my father when I was about twenty.

Therefore, this experience was not as traumatic or prolonged as it could have been for my family. Post-surgery, the biggest change in our lives was that he could only eat small portions and my mother and grandmother spent the rest of his life trying to entice him to eat more and gain weight. He had been thin anyway, resulted in our kitchen overflowing with great desserts — 24/7.

The next year, when I was sixteen, Joy, a sixteen-year-old girl who lived in my building,  was also diagnosed with cancer. My relationship with her was tumultuous and I think she was either bipolar or a sociopath, or both. She was wild and impulsive and was always in trouble, but she was also very smart, talented in drama, music, and art. And very funny.

I enjoyed her company most of the time and we spent a lot of time in each other’s apartments for several years. She was the only person, other than my mother, who could beat me in jacks.

I remember her chemo treatments and the horrible side effects, including the loss of her hair. But she embraced weird hats and scarves for her head and fought hard to maintain a relatively normal life. I think she went into remission but soon the cancer was back and the prognosis was not good. At this point, she had a boyfriend who was very protective of her and wanted to take care of her. She wanted to marry him and spend the rest of her time living with him (in those days you had to be married to live together).

So, while she was only sixteen or seventeen, her mother consented to their marriage and rented them an apartment nearby. Once Joy moved out of the building I saw much less of her but her mom kept me and my mom updated about her condition. She didn’t last very long and died at seventeen, as she wanted, with her boyfriend by her side. I remember the funeral and my heart broke for the family.

She was now the second teenager I knew who died of cancer. I was only seventeen!

When I was in eleventh grade and still seventeen, my closest friend was Anne, who also lived a few blocks from me. We spent a lot of time together and when her mother was diagnosed with cancer, Anne’s parents decided that I should be the one to tell Anne the bad news. Why they couldn’t tell their own daughter is beyond me. Moreover, why my parents, both of whom were therapists, went along with this scheme is also a mystery. Anne’s parents pleaded with me so I sat Anne down in my bedroom and gave her her mother’s diagnosis and dim prognosis.

I watched Anne’s mom go from an energetic career woman to a fragile shadow in a bathrobe, tied to her bed. I held Anne’s hand through the dying process, the funeral and the recovery period for her and her father.

Then, unbelievably, when we were both eighteen and in twelfth grade, Anne’s father was also diagnosed with terminal cancer. This time her father and his sister came to me and again, pleaded with me to be the one to tell Anne, which I did. Although her dad had no symptoms at the time of his diagnosis, he was gone within three months, before our graduation from high school.

It was tragic that Anne lost both her parents in under two years, while she was still in high school. We stayed friends for a few years in college and then we lost touch. I only reconnected with her via email in 2007 when I got her email address from an alumni publication. I discovered that Anne became a successful lawyer, married and had two children and seems to have had a good life, despite the untimely loss of her parents.

I was lucky that most of these cancer experiences were vicarious and I’m sure that many families have personally suffered numerous cancer losses within a short period of time. I’d like to think that these collective experiences somehow influenced my character and my perspective.

Maybe I appreciated life a little bit more entering my adult years. Maybe I developed more compassion for people who are sick, as well as for their families. Maybe I was a more conscientious and considerate caregiver when my mom had cancer, from which she died.

Maybe I’ve had more empathy for my friends who have had to be caregivers for old and infirm parents. I just hope that something good came out of all the suffering I witnessed during my formative years and that I’m a better person because of it.

THE BEST BOOK I’VE READ ABOUT CANCER – FICTION FOR REAL LIFE – Marilyn Armstrong

Anyone who had cancer, no matter how many years have passed, knows you are never “cured.” The best anyone can say is “so far, so good.” Cancer isn’t one disease nor is there a test to tell you whether or not your body is free of cancer cells.

As this life crisis was ongoing, I did a lot of reading. Most of the books were escapist and rather lackluster, but one is worth mentioning. It spoke to me. It is not a book about cancer. It’s fiction and more about getting through life crises and the strange ways we deal with them.

Life and Other Near-Death Experiences: A Novel by Camille Pagan grabbed me from the first page and kept me engaged to the end of the book. I wished it had gone on a little longer, to find out the end of the story — if there is an end.

This is surprising. I usually avoid books that remind me of difficult times I’ve been through. I gravitate towards books that take me to other worlds and other realities.

The book features a young woman who discovers — in one day — that she has a very rare, aggressive form of cancer and her husband is leaving her.

life-and-other-near-death-experiences-coverWhat makes this book unusual is how well it handles crises, life, and death.

The author never takes the easy way out. There are no cheap or easy solutions. It confronts real-life decisions that people who experience major life crises are forced to make. It does so with humor, wit, and realism. It never gets grim and it also never gets silly. It manages to find that edge of reality that eludes so many books.

The main character of the story freaks out when her life falls apart. She can’t deal with any of it. No matter how urgent her situation is, she needs time plus substantial family support to face her new reality. It’s the most realistic story about dealing with cancer I’ve read and it wasn’t depressing. It reminded me how regular people react to appalling news. We all react even though exactly how is highly variable. Everyone is changed by facing death especially when you know there’s no guarantee you’ll beat the odds, no matter what you do.

Once you’ve had any medical crisis that will kill you if left untreated and might kill you anyway, even with treatment, you never look at life the same way. You don’t take life as a given. None of us should take life for granted, but most of us do until we come face to face with the dark angel and he’s got our number.

This is a good book. A surprisingly good book. I hope it will get some attention. It is lumped into the category of “humor” where it doesn’t exactly fit … but I’m not sure where it would fit. Maybe humor is as good as any other placement.

Regardless, any book that can make you laugh in the face of death is worth a read.

WHOLE BODY HEALTH: I KNEW IT! – Marilyn Armstrong

I was sure that the damage to my heart was related to the drugs they gave me for cancer which had been dealt with just four years earlier.

Tonight, on CBS News, they are finding a direct link between breast cancer and cardiomyopathy. The wrong chemo, an incorrect amount of radiation, the wrong drugs and what has kept them from making the connection before was that the heart damage often doesn’t show up for years following cancer … as long as a decade. My time was 4 years.

I had been saying to other people I know who are having heart issues … specifically myopathy … involving damaged valves and thickened ventricle walls which make pumping more (and more) inefficient who also — earlier — had cancer. Asking them if they think the treatment they got for cancer may have been the starting point for their heart issues. The answer is a long pause and “I don’t know. I always wonder about that.”

I have always said that the problem is that we are not pieces that you put together like a jigsaw puzzle. Everything is connected to everything else. I’m sure of it and no, I don’t have statistics to prove it. It takes dozens of years for these stats to finally be proven, but you know. You are just sure, but you’re not a medical professional and you don’t have the facilities to run the tests.

I did put the idea to my oncologist and all three of my cardiologists. While no one would confirm my feeling that these issues were not separated, they were also unwilling to tell me “no way, can’t happen.” Because they see how many people who have previously had cancer show up with cardiomyopathy. You don’t necessarily need years of testing to spot a trend.

Meanwhile, as more of us sense the increasing tendency of the medical community to use smaller specialization, the rest of us are sensing this approach is inconsistent with reality as we feel it.

I have been saying for a long time that there aren’t a lot of things wrong with me. There’s one thing and all these other issues are merely a part of a much bigger picture.

I can’t prove it, but I believe it. Doctors need to look at us as a unit. They need to look at all of our working parts. Not just look at our hips without making sure the spine is functioning. To not look at one’s hands without understanding how the wrist is coping or for that matter, the shoulder and elbow.

It is incredibly frustrating to know in your gut that there’s something important happening in your body, but no one is LOOKING at your whole body.

AND STILL ALIVE – Marilyn Armstrong

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 and gave me very attractive fake replacements. Much perkier than the old ones in an artificial implant sort of way. I have a little ID card for both breasts as if they each have their own identity.

Maybe they do. Thus, a little more than 8-1/2-years after the siege began, I’m officially a survivor. Almost but not quite.

My mother died of metastasized breast cancer. My brother died of pancreatic cancer more than 10 years ago, having never gotten as old as I now am. 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 is growing somewhere in your body and you won’t know it’s there until it’s too late, is about as scary as a 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 diagnosis 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 a beer truck today, tomorrow, in five minutes. 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’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 more the issue than anything physical.

They are being polite. So, I give them what they want. I smile brightly and say “Just fine thank you.”

I have no idea how I am. All I know — 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.  Eight-and-a-half years after a double mastectomy, I am in remission. That’s as good as it gets.

The real 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 anyone wants to hear.

We are supposed to be positive. Upbeat. You are not supposed to suffer from emotional 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. It’s their version of a vaccine. If you are fine, maybe so are they.

Since cancer, I’ve gone through major heart surgery and having survived that, I figure I’m good to go for a while. None of us are forever, but I’m alive. Presumably, I’ll continue to stay that way.

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

HEALTHCARE NIGHTMARE – BY ELLIN CURLEY

My closest friend has been dealing with her mother’s recurring cancers for two years. The battle is nearing an end as her mom goes into a hospice for end-of-life care.

There is one part of this story that has affected me deeply. It has been watching middle-class people, who worked their whole lives, struggle to afford the medical care they need at the end of their lives. I knew that our healthcare system had serious problems. But I had never seen the effects of these issues, up close, on people’s lives.

My friend’s mom was a nurse and her father was an engineer. They saved some money over the years and were comfortable up until the time they got sick. The dad died a few years ago. His last illness soaked up most of the extra cash that they had put away. So when the mom got cancer, money was tight.

My friend works 60 plus hours a week as an executive at AT&T. Her sister, also local, is the mother of two teenage girls. There came a point when their mom had to go to frequent doctors appointments and chemo or radiation several times a week. The sisters had to take turns driving their mom to her appointments and staying with her through her treatments.

They couldn’t afford to pay an aide to spend several days a week doing testing and treatment runs. If the sisters hadn’t turned their lives upside down to take care of their mom, I don’t know what would have happened to her. If she didn’t have two willing daughters living near her, she would have been screwed.

This situation became a real hardship for both siblings. As time went by, the mom’s symptoms got worse and she eventually needed a feeding tube. That upped the level of care she needed exponentially. After a while, the mom couldn’t handle the feeding tube on her own. So the sisters had to get to her house several times a day to help her.

When the mom needed help getting to the bathroom, the daughters broke down and hired the most affordable aide they could find to come to the house twice a day to supplement the daughters’ visits.

Then the mom became effectively bedridden and they had to hire a full-time aide. They couldn’t afford a fully certified RN. So they found a willing woman with some healthcare experience.

But she is Russian and speaks almost no English. She could communicate with my friend with a translating program on her phone. But she could not communicate with her mom at all. Unfortunately, that’s all they could afford. They were lucky to find anyone.

It’s outrageous that families are left on their own to take care of sick relatives unless they are in the top 1% of earnings.

My friend was lucky she can work wherever she has a computer. So she could get work done at her mom’s house or at the hospital or at the treatment centers. That’s not a common situation. If she had had to show up to work at an office every day to keep her job, she’d have been unemployed long ago.

Which is the situation in which most people find themselves.

So how do average families take care of their sick? Watching my relatively well-off friends struggle, I have no clue how other less lucky workers manage.

Our health care system obviously has serious problems. I understood this intellectually. Watching my friend try to do right by her mom, I suddenly understand the flaws in the system on a more visceral level.

Affordable help should be available to everyone who needs it to care for sick family members. People should not have to suffer extreme hardships just to care for a loved one who is ill. People should not have to choose between their job and their own financial security and caring for a family member.

This situation is outrageous in as rich and sophisticated a country as America. It’s not an issue in most other democracies in the western world. Hopefully, the movement towards universal healthcare here will eventually solve this problem. If we’re all lucky, I’ll live to see enlightened healthcare for everyone in my country. If not, shame on us!

NOT ORIGINAL ISSUE – CANCER ISN’T “A DISEASE”

Anyone who has had cancer, no matter how many years have passed, knows you are never “cured.” The best anyone can say is “so far, so good.” Cancer isn’t a “disease.” It is many diseases characterized by a common thread, that they are a group of diseases involving abnormal cell growth with the potential to invade or spread to other parts of the body. But cancers are different for each organ they invade … which is why I doubt there will never be “a cure” for cancer. There may be a cure for this or that cancer, but a cure for all cancers? For every part of the body? Not likely.

Moreover, there is no test to tell you if  your body is free of cancer cells.

This is, of course, true of everyone from birth till death, but when you’ve had a run in with cancer, it stops being theoretical and morphs into something more sinister and personal. In 2010, I had a double mastectomy, losing both breasts to cancer. It wasn’t a prophylactic double mastectomy. I had cancer in both breasts. Two unrelated tumors at the same time. The odds against getting breast cancer in both breasts simultaneously are incredibly small. I seem to be one of the those people who manages to beat normal odds.

After the mastectomies, I got instant reconstruction. Two silicon implants replaced my breasts. They do not, as people imagine, look like real breasts. When you are in the tunnel through breast cancer to (hopefully) recovery, you find yourself answering weird questions. Like “how large do you want them to be?” Do you want nipples? Saline or silicon?

Beth Israel Hospital in Boston.

I went with smallish and no nipples (they require two extra surgeries and they are entirely for appearance), and silicon, which feels more “real” than saline. I suppose it’s all for appearance, really. It is the appearance of womanhood which matters when the original parts have been replaced. And yet, appearance matters more than we might think and in ways we never imagined.

Everything went well — or as well as these things ever go. I hoped I was done with cancer. Imagine my surprise when I realized there was something hard underneath the scar across my right implant. Flat, hard. My first reaction was “What the hell?” Could I get breast cancer without breasts?

I hit the Internet to discover it is probably scar tissue. Or (unlikely but not impossible) a very rare form of skin cancer that grows directly under the mastectomy scar. Rare isn’t impossible. Not in my world, so reluctantly, I made an appointment at the Dana-Farber. It is the only dedicated cancer facility in Worcester County and has been where I’ve done all my follow-up since the surgery.

I had my surgery and reconstruction at the Faulkner Hospital in Boston. My surgeon and plastic reconstruction surgeon were the best. Anywhere. Literally described by my local oncologist as “the dream team,” If you have breast cancer, this is as good as it gets and if life throws this at you, I strongly advise you to find the best surgeons, even if they aren’t convenient. This is something you want to get right the first time.

My oncologist thinks, as I do, that it’s nothing to get excited about, but we’ll watch it. I had been on an annual checkup, but now I’m back on a 3-month schedule. It may not be a big deal, but you don’t fool around with cancer. And you never, ever take for granted that you are fine, no matter what anyone tells you — including your doctors.


As all this was going on, I have been reading. Most of the books have been lackluster, but this one: Life and Other Near-Death Experiences: A Novel by Camille Pagan, grabbed me from the first page and kept me engaged to the end. I wished it wouldn’t end which is unusual for me to say, especially because it’s a book is about a young woman who discovers she has a rare, aggressive form of cancer while simultaneously discovering her marriage has come unglued. Literally, both things hitting her on the same day within a couple of hours.

life-and-other-near-death-experiences-coverWhat makes this book different from other books that deal with life and death, is it never takes the easy way out. There are no cheap, easy fixes for life’s ugly problems. It confronts real decisions people have to make and does so with humor, wit, and realism.

The main character of the story freaks out when her life falls apart. She doesn’t take it calmly. She completely loses it. She needs time to think — plus a huge amount of support from family and friends to face her new reality. It was the most realistic story about dealing with cancer I’ve read and it wasn’t depressing.

Not a light-hearted romp or a vale of tears, it reminded me that how we react to appalling news varies, but we all react. You cannot fail to be changed by facing death, especially when you know there’s no surety you’ll beat it.

Once you’ve had any medical crisis that will kill you left untreated and might kill you anyway, even with treatment, you never look at life the same way. You don’t take life as a given. None of us should take life for granted, but we do. Until we come upon our dark angel — and he’s holding our number.

What made this one special was its lack of sentimentality. No mawkishness. Not a cliché in sight … you I cannot tell you how grateful I was for that. I’ve had cancer. I have (had) (still have) (will have) heart disease. If there is a cliché about disease I haven’t heard, I’d be surprised.

This is a good book. I hope it will get some attention. It got lumped into the category of “humor” where it doesn’t exactly fit. I’m not sure where it would fit, so maybe humor is as good as any other placement. Occasionally, it made me laugh or at least chuckle in recognition.

Regardless, any book that can make you laugh in the face of death is worth a read.

MEMORIZING NORMAL … WHAT WAS THAT?

It was another trip to the oncologist. About 3 months ago, I was checking out my fake breasts and found something that hadn’t been there before. Now, before everyone starts to worry, don’t. I felt it in the right breast — like a hard, flat piece of scar tissue. It was located directly below the scar line on that breast. I didn’t find anything like it on the left breast. I did a little check on the internet and discovered that yes, there is a kind of cancer that can feel like hardened scar tissue in an implanted breast. It is rare and usually what you are feel is exactly what it is: a hardened piece of scar tissue.

I thought about it for a few weeks. Finally, I decided to see my oncologist. I’m seven years past my original cancer. Anyone who has had cancer knows you are never “cured” of cancer. You can be in remittance for a lifetime, but it can come back. Anytime, anywhere in your body.

If you come from a cancer-prone family, you could get an entirely new type of cancer in some other organ. If I’ve learned nothing else, it’s that successfully dealing with one disease doesn’t stop you from getting another.

I’ve also learned to not trust how I feel. I always think I’m fine. This is probably a survival mechanism. I will probably die while being convinced I’m suffering a mild and temporary setback or maybe a weather-related allergy.

So, I wasn’t worried about this turn of events. I hadn’t been concerned about what turned out to be bi-lateral cancer. Back then, I was sure it was just a benign cyst. It turned out to be cancer in both breasts.

Essentially, my prior record on guessing what’s wrong with me (I was also sure my heart was fine) has proven 100% wrong, so I went to see Dr. Tahir in May. He agreed it’s probably nothing more than hardened scar tissue. If I want to be absolutely sure, we could run a CT scan.  I’ve gotten so much radiation over the years, I’m hesitant to allow more radiation. Also, the co-pay for a CT scan is $450 which I don’t have. So I declined. He suggested I come back in a couple of months and see if anything had changed.

This was that followup visit.

Waiting at the Dana-Farber

Nothing had changed as far as I could tell … or as far as he could tell. He did encourage me to call him if anything bothers me at all, no matter where or what. I know this is for my benefit because he doesn’t believe I will call unless I think I’m actually about to croak. Still, the urgency of his tone — CALL ME ABOUT ANYTHING ANYWHERE, ANYTIME — made me edgy.

Some of this is probably about money. For want of $450, am I putting my health at risk?

I’m fairly sure (probably, maybe, or at least I think so) that if I thought this was life-or-death, I’d get the scan and figure out how to pay for it later. But, it’s also possible I want to avoid more surgery — even if it is life or death. I’ve had far too much surgery. Far too many hospitalizations. Far too many close calls with death. It’s not that I want to die. I vastly prefer life to the alternative, but I’m tired of being sliced and diced. I’m tired of years of recovery and being told how great I’m going to feel … later. I’m still waiting to feel great.

Meanwhile, all the blood work came back normal. Normal, normal, normal with a slight elevation in liver enzymes,. But that was true last time, so maybe that’s the new normal. Blood pressure normal. Weight up a little. No one except me seems worried about it. The blood levels are a pretty good indicator that nothing major is going wrong. Something would show in all those tests … right?


Sometimes I feel like a potato being slowly grated.

Every year or two, doctors remove a piece of me. Sometimes a little piece — a couple of bad heart valves, for example. Sometimes a couple of breasts. Once, a piece of bone in my leg and they added two implanted breasts, two replacement valves and a pacemaker. I believe that makes me two new pieces above my initial out-of-the-factory model.

Approximately 75% of me works almost as well as the original bits. That’s what my memories tell me, but normal is so distant in mental time, I have to work from memorized tidbits of what “normal” felt like. Of course, the rebuilt me isn’t quite the same. The individual pieces look okay, though — if you don’t look too closely. And I keep my clothing on.

BUSY DAY AND FLOWERS

We are not busy bees, buzzing from activity to activity. So much stuff gets done online, many of the busy things we used to do are no longer necessary. But — and there’s always a but — there are some things which require a personal touch. This was one of those days.

My final activity of the day was visiting the oncologist — never my favorite activity on any day. I was supposed to do it a month ago, but I wasn’t up to it and deferred it to today.

I needed to go to the post office and mail a small package and, we sold the yellow car. It hasn’t left home yet, but it’s merely waiting to be picked up. Since the new insurance policy came through at the end of last week, this seemed the right time to deal with officially removing the old car.

Yesterday, I went online yesterday and cancelled the plates. Today, I took the paper to the agent and changed our insurance policy to just one car. In our lives together, this is the first time we’ve only had one car. When we were both working, there was no question about needing two vehicles. These days, we rarely need two. I suppose there will be times when we need a second car, at which time we’ll just have to rent one, should it come to that.

I was surprised that our insurance dropped by half. I didn’t think one little old car was costing that much. So I guess it was a good thing and now, we don’t have to replace the tires, the brakes, and the dead battery.

The oncologist is another story. Anyone who has had cancer, now or previously, knows that the periodic visit to the oncologist makes you edgy. The long scar on my right breast has developed a hard piece of scar tissue underneath it. I have been working hard at ignoring it, but it kept bugging me. Last January, I went and saw the nurse practitioner (the doctor was on vacation) and we agreed it didn’t seem to be more than what I thought it was — a hard piece of scar tissue.

Today, at the doctor, we reached the same conclusion … with a proviso. If it seems to be growing or getting harder, back I go. And instead of my usually year between visits, I’m back in three months. It could be something. It probably isn’t. But … it could be. This is why cancer is not a lot of fun. A lot of things could be nothing, but then again, they could be something. And that something is not good.

I’m good at forgetting and with a little luck, I’ll have forgotten this entirely by tomorrow morning. If Medicare didn’t charge $450 for an ultrasound, I’d probably have sprung for the test. I don’t know about other retirees, but I don’t happen to have that hunk of money, so unless I think it’s life or death — it will wait.

Still, a lot got done. I finally got to see my doctor and a lens is on its way to Arizona. Our insurance dropped to as low as insurance ever gets.

For a few minutes when we got out of the hospital, it was sunny and I could see that spring really has come. Most places, anyway. It is less apparent here because our trees are all oak and they have no leaves yet. Other places where they have ornamental trees or maples, there are some small leaves and many flowers.

Since a few days ago, we gained two gorgeous yellow tulips and hillside of Solomon’s Seal has sprung up. It is amazing. In the middle of last week, I saw no evidence they were growing at all. Oh, and the Columbine are starting to bloom. It has been cold and rainy … but finally, spring is coming.

STAYING ALIVE

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 have a little ID card for my breasts, like they have their own personae. Maybe they do. Thus, a little more than seven years after the siege began, I’m officially a survivor. Almost but not quite.

My mother died of metastasized breast cancer. My brother died of pancreatic cancer 10 years ago, having never gotten as old as I am. 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 is growing somewhere in your body and you won’t know it’s there until it’s too late, 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 diagnosis 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 the issue than anything physical.

They are being polite. So, I give them what they want. I smile brightly and say “Just fine thank you.”

I have no idea how I am. All I know — 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.  Six-and-a-half years after a double mastectomy, I am in remission. That’s as good as it gets.

The real 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 anyone wants to hear. We are supposed to be positive. Upbeat. You are not supposed to suffer from emotional 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. It’s their version of a vaccine.

Since cancer, I’ve gone through major heart surgery and having survived that, I figure I’m good to go for a while. None of us are forever, but I’m alive. Presumably I’ll continue to stay that way.

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

SYMPTOM | THE DAILY PROMPT

ONCOLOGY AND AN INTERESTING BOOK

REPLACEMENT BREASTS – NOT QUITE ORIGINAL ISSUE


Anyone who has had cancer, no matter how many years have passed, knows you are never “cured.” The best anyone can say is “so far, so good.” Cancer isn’t a single disease. There is no test to tell you your body is free of cancer cells.

This is, of course, true of everyone from birth till death, but when you have had a run in with cancer, it stops being theoretical and morphs into something more sinister and personal. In 2010, I had a double mastectomy, losing both breasts to cancer. It wasn’t a prophylactic double mastectomy. I actually had cancer in both breasts. Two unrelated tumors at the same time. The odds against getting breast cancer in both breasts simultaneously are incredibly small. I seem to be one of the those people who manages to beat normal odds — not in a good way.

180-view-dana-farber-270117_04

After the mastectomies, I got instant reconstruction. Two silicon implants replaced my breasts. They do not, as people imagine, look like real breasts. When you are in the tunnel through breast cancer to (hopefully) recovery, you find yourself answering weird questions. Like “how large do you want them to be?” Do you want nipples? Saline or silicon?

I went with smallish and no nipples (they require two extra surgeries and they are entirely for appearance), and silicon, which feels more real. I suppose it’s all for appearance, really — the appearance of womanhood matters when the parts have been replaced with something that isn’t real flesh.

Everything went well — or as well as these things ever go. I hoped I was done with cancer. Imagine my surprise when I realized there was something hard underneath the scar across my right implant. Flat, hard. My first reaction was “What the hell?” Can I get breast cancer without breasts?

180-exam-room-dana-farber-270117_23

I hit the Internet to discover it is probably scar tissue. Or (unlikely but not impossible) a very rare form of skin cancer that grows directly under the mastectomy scar. Rare isn’t impossible. Not in my world, so reluctantly, I made an appointment at the Dana-Farber. It is the only dedicated cancer facility in Worcester County and has been where I’ve done all my follow-up since the surgery.

I had my surgery and reconstruction at the Faulkner Hospital in Boston. My surgeon and plastic reconstruction surgeon are the best. Anywhere. Literally described by my local oncologist calls “the dream team,” If you have breast cancer, this is as good as it gets and if life throws this at you, I strongly advise you to find the best surgeons, even if they aren’t convenient. You want to get this right the first time.

My oncologist thinks, as I do, that it’s nothing to get excited about, but we’ll watch it. If it seems to be growing, or starts hurting, we’ll move on to testing. In the meantime, I take a deep breath and can return to worrying about the lunatic pretending to be President who seems intent on making my personal angst irrelevant by blowing up the world.


As this was going on, I have been reading. A lot. Most of the books have been lackluster, to put it kindly. Life and Other Near-Death Experiences: A Novel by Camille Pagan grabbed me from the first page and kept me engaged to the end, wishing that it wouldn’t end. Which is a pretty unusual thing to say considering the book is about a young woman who discovers she has a very rare, aggressive form of cancer and her marriage comes unglued — at the same time. Literally, both things hitting her on the same day.

life-and-other-near-death-experiences-coverWhat takes the book out of the ordinary from other books that deal with life and death, is it never takes the easy way out. No cheap or easy solutions. It confronts real-life decisions that people in major life crises are forced to make. It does so with humor, wit, and realism.

The main character of the story freaks out when her life falls apart and needs time plus substantial support from family and friends to face her new reality. It’s the most realistic story about dealing with cancer I’ve read and it wasn’t depressing. Not a guffaw filled romp or a vale of tears. It reminded me that how we react to appalling news varies, but we all react. You cannot fail to be changed by facing death while realizing there’s no guarantee you’ll beat it, no matter what you do.

Once you’ve had any medical crisis that will kill you left untreated and might kill you anyway, even with treatment, you never look at life the same way. You don’t take life as a given. None of us should ever take life for granted, but most of us do. Until we come face to face with the dark angel and he’s holding our number.

This is a good book. A surprisingly good book. I hope it will get some attention. It is lumped into the category of “humor” where it doesn’t exactly fit … but I’m not sure where it would fit. Maybe humor is as good as any other placement.

Regardless, any book that can make you laugh in the face of death is worth a read.