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 beΒ 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. Β 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’tΒ quite the same. The individual pieces look okay, though — if you don’t look too closely. And I keep my clothing on.

36 thoughts on “MEMORIZING NORMAL … WHAT WAS THAT?

    • I don’t even remember what “good” felt like. These days, a good day is one on which I can do stuff. I try not to let it get to me … but I have very mixed emotions about more serious medical encounters. I don’t know if I’ve got another “bounce back” left in me. I’m pretty worn out.

      Do they know what’s wrong with you yet? I think all that testing is actually the worst part because it never stops. They just keep at it with poking and scraping and chipping away until you are ready to just scream. Let me know if they find sometime and have some idea what to do about it as we keep going and going.

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      • No… I’m still waiting for more tests and exploratory stuff. Should have been in surgery Tuesday but ended up down with another ruddy virus so they wouldn’t have me in. Sometimes ANY answer would be a relief…

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        • I waited three months for my heart surgery because I got pneumonia. All that hacking and coughing was just not the right “fit” for that surgery, but they still had to pump the gunk out of my lungs when I finally got there. Try not to fret. Being sick AND waiting for surgery totally sucks, but until they advance to the Star Trek level of medicine, we’re just stuck with it.

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  1. You must be the prototype for the bionic woman, but I am glad that things did not go too badly. There is always a nigging thought somewhere in the back of the brain that somewhere something is not as it should be. I think the more we understand medical problems, the more worried we can get that it could be this or that.
    I am lucky not to belong to a pro cancer family, but our problems seemt to lay in the digestive system. Both Mr. Swiss and I have decided no more endoscopy, viewing the insides of your digestive tract on a TV and who knows what might be discovered. We have both had about 5-6 of them and the torture the day before we are no longer willing to partake in. My great grandmother lived to be 92 years old in 1911 and my dad passed away last year with 100 and 6 months, so let’s hope. Mr. Swiss has permanent back ache and I never know really what I have, but life goes on. Wishing you all the best and we can talk about it all again after the next big examination in a year online.

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    • I think this is getting to be true for most of us. Garry avoids the doctor by telling the doctor he’s fine, then complaining to me all the time. He’s very manly at the doctor, though. VERY manly.

      I don’t even know how many endoscopies I’ve had. I can’t remember them anymore. There were a couple of years when they were pretty much every time I saw the doctor. Now, I just say NO NO NO. They KNOW what’s wrong with me. They don’t know why it’s wrong and they can’t fix it, so to keep testing it is stupid. Sometime went wrong in an early surgery and they can’t fix it. But they CAN medicate it, so let’s just let its alone, please.

      As for cancer, well … My father died of heart failure at 92. My mother’s side had all the cancer. I seem to have managed to inherit from both sides. Yay me. But meanwhile, I’d like to putter about my little life. I don’t know if I’m ready to let anyone chop me up any further. I have been thoroughly chopped.

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  2. You are quite remarkable I think. You have weathered many storms, it’s time for good stuff. Universe here this plea. Simply because Marylin deserves this. I’m sincerely hoping it’s only a concern and nothing more. xoxoxo

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  3. There was no cancer in my family that anyone knows about. Everyone has lived well into their 90’s or 100’s. I must be the genetic mutant. Or maybe it was the military, the drugs, or the nuclear reactors, perhaps it was the rock and roll music; who really knows. My oncologist tells me that I am currently cancer free, but I have no feeling in my feet or my fingers. The sense of humor and my loved ones make it tolerable. Keep the faith Marilyn. You know how to do this, you have a track record!
    I’m thinking about getting a new tattoo.

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    • From what I have read, cancer can be genetic — but it doesn’t need to be. My mother is the ONLY member of her 6 brothers and sisters who got cancer. Go figure.

      The feeling usually comes back. I lost the feeling in both feet for a few years, but eventually, it came back. Slowly, over time. I had no reflex in my ankles-to-feet … but it came back. Sometimes, it’s just the trauma of all the crap they do to you.

      So imagine my surprise when after all this, my HEART went. I thought after the cancer, you got a “get out of jail free” card for the rest of your organs. Hah. For all I know, it was the cancer drugs that did my heart in. I wouldn’t be surprised. Then again, it could be pure, unmitigated, shitty luck.

      I got my Phoenix tattoo after the cancer operation. It seemed appropriate. I must have been the oldest first time tattoo recipient ever.

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  4. I hear you, I really do, I had 10 operations/procedure in 9 years and I am loath the visit to the doctor, even when I know I should go. I went again recently only to be told that my hips are shot (I already knew that) and I will probably need a double hip implant, but I am still too young! Young? my god some days I feel 110! Still, we soldier on don’t we, as the alternative is not brilliant.

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    • Yup. That’s it. I think this is the first period of a whole year I haven’t had major surgery and been recovering. I thought my hips were gone, but it turns out, it’s my spine disintegrating. Thus we slog on.

      I keep telling people: it’s not brave. It’s surviving. Exactly what other choice is there? Throw your hands in the air and refuse to live? Last I heard, that doesn’t work well. Not that I haven’t considered it.

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        • Exactly what I said. It was amazing. If I get through 2017, that will be (gasp) TWO YEARS IN A ROW! Hard to believe. I’m hoping maybe I’m done until some of the implants start to fail. But I’ve got a few years until batteries need replacing. Batteries. I run on batteries.

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            • I still have the cardiologist to go, but I think I may be home free for this year. Good luck with yours. I think there isn’t much left for them to do to me. Unless some of the stuff they already did fails, or that “it’s nothing” turns out to be something, from here on, maybe I just get to fall apart in the usual way.

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                • I still have a broken chest. It was supposed to heal, but didn’t. It’s pretty uncomfortable and is getting looser with time. I know they want to take me in and rewire it, but what is the point? They can’t make the bone and cartilage heal. Nothing can make that happen, so rewiring me would just be another temporary fix. But one of these days, they will talk me into it. I’ve been saying “no no no no” …. but eventually, Garry will push me into getting fixed. I don’t want to and will fight to the end on this one.

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                    • I’ve got a lot of “no wins” that need fixing. The arthritis in my hands — a minor operation, but another operation. Two lipomas that need to be removed. But the chest is major surgery that won’t truly fix anything. The cartilage is probably the problem. I’m old enough that cartilage doesn’t heal well and on me, never did heal well even when I was a lot younger. I’ve torn cartilage in knees and shoulder and just left them that way because fixing them was more effort than the results would make worth it, though I’ve had some removed from one knee. Getting rid of it was easy. But your chest isn’t a solid bone. It can knit only if the cartilage that lets it move when you breathe also heals and in 2-1/2 years, this hasn’t happened. It may never heal. There is NOTHING they can do to make it heal, either. Super glue in extremis? So IF they wire me tighter, it will still loosen with time, regardless and I don’t see me going in for major chest surgery every couple of years.

                      My back is not repairable. It will just keep getting worse, but if I’m lucky, not MUCH worse. So … do something? I don’t see the point. Even though it is painful — sometimes very — and more than that, there’s something about the grinding of the bones that’s hard to deal with. We’ll see how it goes. But I want more than being wired tighter before I go through another cutting open of my chest!

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