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