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.

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.

Prompts for the Promptless – Ep. 9 – Gallows Humor: Dying Is Easy (Comedy Is Hard)

After I was told I had cancer in not one, but both breasts — they were having a two-for-one special at the Dana-Farber — I had them removed and replaced by silicon Hollywood quality implants. I stopped short of adding the fake nipples. Previous surgeries had left me with no naval, so now lacking both naval and nipples, I think maybe I’m an alien walking the earth.

I have a tee-shirt that says “Yes, they are FAKE. My real ones tried to kill me.” It makes people laugh. It’s the high point of my cancer experience.

Unfortunately, cancer tends to enter your life and like a guest that long over-stays his or her welcome, you just can’t get rid of it. After I gave up my Medigap policy and signed on with Fallon Senior Medicare Advantage plan, it took me five months to get an appointment with an oncologist. It began last November and isn’t over yet.

Dying is easy 1

To get started on the wrong foot, the customer service person who signed me up in the beginning gave me incorrect information, having assured me Dana-Farber in Milford was covered by Fallon. This turned out to be untrue and left me without an oncologist. I was annoyed, but they said I could see my Dana-Farber oncologist once more and I figured I’d get a referral from him.

My oncologist didn’t know anyone at UMass in Worcester which is Fallon’s only cancer care facility in Worcester County. I remained calm. I’m past surgery and chemo, in the maintenance phase of care, the part where they do their best to ignore you. Failing that, they do the least they can. Unless you obviously grow a new cancer in a location they can see and feel, they tell you you’re fine. Not to worry. Smile. It’s just cancer.

At Dana-Farber, I had been going for quarterly check-ups, feeling for lumps, taking blood, checking for weird symptoms that could indicate something growing somewhere it shouldn’t. Annually they run a scan to take a look around the property, aka my body. I’d had to go to war for the scan. Their plan was to do nothing at all unless I had symptoms. Does death count? I felt their plan was insufficient while they felt running a scan was a frivolous waste of taxpayer’s money. My life didn’t come into the equation.

My former oncologist couldn’t help me find a new doctor. He suggested I call the HMO and ask them to refer me to a medical oncologist with a speciality in breast cancer. I knew my PCP wouldn’t be able to refer me because she had already said so. She had suggested I get the referral from my oncologist. Full circle.

I called Fallon Senior Heath Plan.

CustomerSvcFallonQuote

The customer service rep sounded about 12-years-old, but knew even less than her years suggested. She didn’t understand the concept of different kinds of oncologists. After explaining for perhaps the dozenth time, I began to sink into the slough of despond. It was like talking to a smiling plastic doll who will recite one of 3 pre-recorded phrases. Pull the string, get an answer.

I got transferred to a supervisor and retold the story. She said she would “research the problem” and get back to me. Research the problem? Sounded like a kiss-off to me.

I called my doctor’s office, explained I hadn’t been able to get a referral from my oncologist or from Fallon where they kept saying my family doctor should send me to the right doctor even though I told them Dr. S. didn’t know the doctors in oncology at UMass, Worcester.

HELP, I said. Please!

I did my little song and dance, explaining I needed a Medical Oncologist with a specialty in Breast Cancer. Since breast cancer is frightfully common, it shouldn’t be that hard to find someone.

A few hours later, my doctor’s office called back, gave me a name, an appointment, a phone number. The appointment was for a few days hence, also my birthday. I didn’t want an oncology appointment on my birthday. Nor did I need an appointment immediately. I had just had my annual scan. So I called the doctor’s number to change the appointment to something more sensible.

I got transferred, transferred, and wound up talking to Lisa, the administrator for the Breast Care department. The doctor with whom I’d was booked is a surgeon and they need my medical records before they can continue. The records are all over the Commonwealth, scattered between 4 hospitals.

Lisa said not to worry, she would take care of it. She did. She changed the appointment, booked me with an appropriate doctor, called the various offices and ordered my records. Said if I had any kind of problem, give her a call and she’d fix it because women with cancer shouldn’t have additional problems because they already had quite enough. My feeling precisely!

Shortly thereafter, my doctor’s assistant called asking why I’d cancelled the appointment she had made for me. She was furious. After all the effort she’d made making that phone call on my behalf, I’d had the gall to CANCEL the appointment. I explained she’d booked me with a surgeon — pointless since I’ve already been thoroughly surged. I needed a different doctor.

She was pissed because it hadn’t been easy to get that wrong appointment and seemed unable to grasp the difference between a medical oncologist and a surgeon. I explained — again — that a surgeon would not be able to help me because I don’t need breast surgery. I have no breasts. But I do need my medical records sent to UMass. She said Lisa from UMass had called about it but she wasn’t sure where to send them.

“Did Lisa tell you where to send them?” I asked.

“Yes,” she said.

“Then … why don’t you send them there?” Duh.

“But you cancelled the appointment I made!” she whined, still pissed off.

“I changed the appointment. To be accurate, Lisa changed it because the doctor to which you were sending me was the wrong doctor. NOW I have an appointment with the right doctor.” We went back and forth for a while until she grudgingly accepted my apology for not needing a breast surgeon. I assured her that I truly appreciated her futile efforts.

“I’m so sorry to upset you,” I repeated.

Yesterday I got a note in the mail (not email, the regular mail) from UMass cancelling my appointment with the oncologist and suggesting I call to make a new one.

Maybe I don’t really need an oncologist. Dying is easy; comedy is hard.

Dying is easy

Weekly Writing Challenge: The State of the State: Dying of Laughter

It took me five months to get a new oncologist from Fallon, the HMO that runs my Medicare Advantage plan. It began last November when, in a necessary cost-cutting move, I gave up my Medigap policy and signed on with Fallon Senior Medicare Advantage plan.

Dana Farber lobby

To get started on the wrong foot, the customer service person who signed me up gave me incorrect information. She had assured me Dana-Farber in Milford was covered by Fallon. This turned out to be untrue and left me without an oncologist. I was annoyed, but not wildly upset. They said I could see my Dana-Farber oncologist once more and I figured I’d get a referral from him.

custSVC

That turned out to be overly optimistic. My oncologist didn’t know anyone at UMass in Worcester — Fallon’s only cancer care facility in Worcester County. Like many satellite facilities  for larger institutions, it’s hard for them to keep ambitious young doctors on staff. They stay a while, then move to better paying jobs at bigger more, prestigious hospitals. A few doctors stay, usually those who live locally, but most move on. It’s a bit of a revolving door, personnel-wise, though it really isn’t their fault.

Even this didn’t faze me. I’m past surgery and chemo. I’m in the maintenance phase. I go for checkups and blood tests. Once a year they scan me to make sure nothing is growing someplace it shouldn’t. Nonetheless, I’m only 2 years from the initial discovery of two separate tumors and there have been a lot of cancer deaths in my family. Mother. Brother. Both maternal grandparents and I’ve had cancer twice, so there’s no reason to assume I’ll ever be entirely safe. I’m not acting crazy because I feel it’s a bit soon to stop monitoring me.

My doctor assured me that the facility is good, but he couldn’t help me find a new doctor. He suggested I call the HMO and ask them who do they have in medical oncology with a speciality in breast cancer.  I already knew my PCP couldn’t give me a referral because she said so. She had suggested I get the referral from my oncologist. Back to square one.

I called Fallon.

She said — this is a quote: “We do not list our doctors by specialty.”

“What,” I asked, “Do you list them by? Alphabetically?”

I mean, seriously, if you don’t list doctors by specialty, how in the world can anyone get an appropriate referral? This is supposed to be senior health care organization. It’s not as if cancer is a rare event. There’s a lot of it going around. I patiently — really patiently — explained I needed a medical oncologist specializing in breast cancer. That yes indeed, cancer doctors are highly specialized and it really did make a difference and no, there’s no such thing as “just an oncologist.” If ignorance was bliss, this was one deliriously happy young woman.

After I explained for the dozenth time it would not be okay to send me to “just any” oncologist, that I wanted someone who knew about my kind of cancer and moreover, I want a doctor who has been out of medical school for at least 5 years. I’m not ready to put my life in the hands of a baby doctor. My life, my choice.

I spent over an hour trying to make some progress, being repeatedly told I needed to go to my primary care doctor and get a referral from her. Despite my explaining she had already told me she didn’t know the doctors at UMass Oncology, it was like talking to a doll who only has three or four recorded phrases. By now, my good nature was gone and my fangs were showing.

It took another 45 minutes and further reiterations of the same information to get transferred to a supervisor. I told the story again. Finally, she said she would “research the problem” and get back to me.

I called my doctor’s office, explained that I hadn’t been able to get a referral from the oncologist at the Dana-Farber, nor could I get a referral from Fallon and they seemed to be of the opinion my family doctor should send me to the right doctor even though I had told them that Dr. S. didn’t know the doctors in Oncology at UMass in Worcester. I needed someone to step up to the plate and help me.

A few hours later, my doctor’s office called back and gave me a name, an appointment, and a phone number. The appointment was for just a few days hence, also my birthday. I didn’t want an oncology appointment on my birthday. Nor did I need an appointment immediately. I had just had my big annual scan and wouldn’t need to be seen again for six months, so I called the doctor’s number to change the appointment to something sensible.

I got transferred then transferred again and wound up talking to Lisa, the administrator for the Breast Cancer Care department. It turned out that the doctor with whom I’d been booked was a surgeon, not a medical oncologist and that in any case, they couldn’t do anything without my medical records which were scattered through three hospitals and a doctor’s office — each located in a different town.

Lisa said not to worry, she would take care of it. Remarkably she did. She changed the appointment and booked me with a doctor who specialized in my type of cancer, called all the various offices and ordered my medical records send to UMass. Said if I had any kind of problem, give her a call and she’d fix it because women with cancer shouldn’t have additional problems because they already had quite enough. My opinion precisely. But wow. What a difference a woman with intelligence and a willingness to actually provide customer service can make!

Shortly thereafter, my doctor’s assistant called asking why I’d cancelled the appointment she had made for me. I explained that she had booked me with a surgeon. I’d already been surged so I needed a different kind of doctor. She was pissed off because it hadn’t been easy to get that appointment and seemed impervious to the difference between a medical oncologist and a breast cancer surgeon. I explained — again — that a surgeon would not be able to help me because I don’t need a surgeon. I have no breasts, but I really do need my medical records … and she said yes, Lisa from UMass had called about that but she wasn’t sure where to send them.

“Didn’t Lisa tell you where to send them?” I asked.

“Yes,” she said.

“Then … why don’t you send them where she told you to send them? What am I missing?”

“But you cancelled the appointment I made!” she said, still angry.

“I changed the appointment. Really Lisa changed it because the doctor to which you were sending me was the wrong doctor. Now I have an appointment with the right kind of doctor. I’m not blaming you, so why are you mad at me?”

And so we went back and forth for a while until she finally accepted she had booked the wrong doctor, but I assured her that I truly appreciated her efforts. Since this is my life, getting the right doctor was my goal regardless. Sorry to upset you.

“Oh,” she said. Not a “sorry” in the batch.

“Right,” I said.

I’ve gotten a lot of calls from Fallon since then, all of them wanting me to explain again why I wasn’t happy with their customer service. I said a patient should be able to call and get names of appropriate doctors and at least some basic information about the doctor, like how long he/she has been in practice, their specialty, from what medical school he or she graduated and on which boards he or she is certified. And this information is fundamental to medical care and I am entitled to this information and they are obligated to provide it. Nor, I pointed out, is this such a difficult thing to accomplish. I could produce an appropriate data base in a couple of days using the internet and making a few phone calls. The problem could be solved with a memo sent to all customer service personnel in an email. Lives could be saved and it wasn’t an insurmountable problem. It just needed someone to recognize they had to do something and just do it. Although everyone agreed with me, I had the definite impression that no one would do anything about it. Inertia always seems to win over doing the right thing.

The day was only half over and I was not done with medical misinformation.

When I finally finished the marathon calls to Fallon, I got a call from Humana Insurance to remind me I hadn’t made a  payment this month.

I hadn’t made the payment because I cancelled the insurance when I switched to a Medicare Advantage (HMO) program. I didn’t want to switch but I couldn’t keep paying the almost $200 a month for my Humana policy.  When, at the end of November, I signed up with Fallon, I called Humana and explained I was changing to an advantage plan and needed to cancel my Humana policy as of the first of the year. I was told that as soon as my new program kicked in, the policy would automatically be cancelled and there was nothing more I needed to do.

“Are you sure?” I asked.

“Absolutely,” I was assured.

So, there it was, the middle of March and Humana is harassing me for money I don’t owe. When they called again, I finally got a person on the phone and pointed out I had called and cancelled at the end of November 2012.

Western Digital 3TB My Book Essential External Desktop Hard DriveThe representative said that he could see in his records I’d called to cancel, but I’d been given incorrect information. I was required to send them a letter; I could not cancel by phone or on-line. I pointed out that I signed up on-line and on the phone, so why did I have to write a letter to cancel? “Those are the rules,” he said.

“I want to speak to your manager,” I said. He explained that the manager would tell me the same thing. I pointed out that I didn’t care, I wanted to talk to a manager, and I don’t owe them any money. He said I’d have to file a dispute to not pay them because although it was their fault and they have it in their own records that I called in advance to cancel the policy, it didn’t matter. I was going to have to fix the problem, even though they were the ones who had caused it.

I thought my head was going to explode.

The manager reiterated that indeed they had given me incorrect information, but now it is my problem. Tough luck lady.

I hung up before I said something really rude. I believe there was steam coming out of my ears.

I took a slow, deep, cleansing breath, then called the other customer service department, the one whose number is printed on back of the membership card.

The lady I spoke to looked it up, agreed they had given me erroneous information, contacted the cancellation department and assured me it was fixed. I have a name and a number in case it isn’t. I pointed out that until this snafu, I’d had positive feelings about Humana and would have recommended them.

They had handled my claims promptly without haggling, but they had burned a whole year of good will in about an hour. I pointed out that I was not going to pay them any money because I didn’t owe them any money and they know it. I wasn’t going to send any letters or dispute any charges. They could put it all where the sun doesn’t shine. And thanks for everything. Have a good day.

File:Humana.jpg

The Humana Building

It had grown dark while all this was going on and as the day had gone from morning to evening, my hard drive had been doing a full system back up. It was, I was glad to see, nearly complete.

As I hung up the phone, panting with exertion though I hadn’t gotten up from the office chair, the backup announced itself finished. I registered the hardware, did whatever I thought I was supposed to do. Garry got back from the grocery store and I put the stuff away. The dogs started howling for dinner. Life closed around me. The dog’s dinner was half an hour late and they were telling us they were so hungry they were going to fall over from weakness, poor darlings. They lie like dogs. Of course, they are dogs, which accounts for it.

So passed my day. Now, it’s eight in the evening. Either everything is fixed or it’s not, but I’m done. Totally and completely out of gas, I am ready for some mindless entertainment. Please,  do not give me anything to think about for at least 24 hours.

How come so  many blatantly incompetent people have jobs? Why are they working when so many others are unemployed?

Something is terribly wrong. I just don’t have enough strength to figure out what it is, much less fix it.

Blood, Gore, High-Tech and Architecture

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I knew it was going to be one of those days from the moment I got up this morning. There was no guesswork involved. It was all arranged, scheduled.

  1. Drop terriers off for grooming.
  2. Come home, drink coffee.
  3. Drive to Dana-Farber for a day of tests.
  4. Be reassured I’m not dying of cancer.
  5. Drive back home.
  6. Pick up terriers.
  7. Eat!

Those of you who suffer from serious medical problems that don’t go away and can kill you, know what I mean. Regular checkups are high stress events until you (hopefully) get the word that all is well.

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Even though you have no immediate evidence that anything is wrong above and beyond the “usual” which is something like a Chinese menu of interrelated ailments and conditions, you always harbor a not-so-secret belief that something ugly is going on and you just haven’t found it … or it hasn’t yet announced its presence.

There are people — Woody Allen leaps to mind — who feel this way through most of their lives with no evidence that anything is wrong. The good part of this approach is when something ugly actually does show up, they can say “See? I told you! I KNEW it!”

Pessimism saves you from a lot of disappointment. It also keeps you from enjoying the good stuff that happens along the way. I guess for the hard-core pessimists, it’s a small price to pay. Fear of fear, fear of bad news, fear of being too happy then being let down? I can almost (but not really) understand.

Days like this always starts at the lab. This is the scene of my first battle of the day, as I try to convince them to treat my one working vein with gentleness and subtlety. Do not attack it with a spear. Cajole it with a tiny pediatric butterfly needle because if you blow it, finding another live one will consume half the staff of the labs of two hospitals. They got blood, but it took two nurses and a lot of jiggling that needle around to find the magic spot.

“You think maybe it’s deeper?”

“Let’s try going deeper.”

“Ouch”

“Sorry”

“Ouch”

“Hey,, I think I see a flash … ”

“Grab it before it rolls”

“Ouch”

“Blood!”

Phew.

I frequently slice pieces of my fingers off while preparing food. I bleed like mad — blood on counters, floor — blood everywhere. I suggested to the nurses that next time, I bring a kitchen knife and slash myself, like I do at home. There’d be more than enough blood and it would be quicker than all this probing with needles. For some reason, they didn’t think it was such a good idea, but I thought it was brilliant.

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I had brought the little Canon Powershot S100, my Kindle, and more importantly, Garry. They are my defense against losing my mind. This is how I avoid excessive cranial activity, i.e., thinking. Usually I’m in favor of thinking, but under this particular circumstance, nothing good can come of it.

As you can see, I shot a few pictures, some of which turned out rather interestingly.

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Blood having been taken, it was time for the long wait for the CT scan. I was originally supposed to drink some kind of dye solution, but I can’t because I have no stomach and I’m not up for massive nausea today. I’ve gotten to the point where they say you have to do “this” and I say “No, I don’t.” We go back and forth and eventually, they acknowledge that no, I actually don’t have to do it. But they really wish I would.

They were determined to get dye into me one way or the other. After taking a look at my so-called veins, the CT tech sent me to the chemo people who presumably can put an IV into a turnip. The lab had already mutilated my good vein, so it was now a retired vein. Even using the newest, grooviest high-tech equipment, they couldn’t find a live vein. An electronic vein finder is totally cool. It looks like a flashlight, but when they point it at you, you can see all your veins like a blue network under your skin.

If you want to distract me from pain and misery, give me a high-tech toy to play with. I’m like a kid at Christmas. So they let me point the light and together we hunted the elusive usable vein.

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High tech tools notwithstanding, my veins defeated the chemotherapy staff. No small achievement. After a full hour and three nurses poking holes wherever they thought a vein big enough to take an infusion might be hiding, they gave up.

The CT scan was performed sans dye.

Then, off to the oncologist. He looked sympathetic. He always looks sympathetic. Only psychiatrists and oncologists ever perfect that look of total sympathy. I often suspect it covers a deep ennui. Best not look too closely.

Mine also looks sad, perhaps slightly troubled, but deeply sympathetic. Oncologists are always very nice.They speak softly, gently, kindly, not wishing to upset you since they figure (true) that you are upset anyhow. He looks at my labs, tells me everything is absolutely normal. (Yay!)

He looks at the CT scan, which was a big one, chest to hips. He says nothing is there that shouldn’t be. Lungs clear, everything clear. Except my spine. Which even Garry and I can see is so encased in arthritis it doesn’t look like a human spine. No wonder it hurts.

The dogs weren’t finished at the groomer when we arrived at home, so we had to make a separate trip to get them. Worth it. They look so much better and incredibly cute. More importantly, they smell better. They had gotten seriously stinky.

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Eventually, I get my reward: a big family dinner featuring a roast leg of lamb. This doesn’t happen very often. Even when we weren’t quite so poor, it was a rare event, but these days? It’s an “almost never” event.

We, the couple who traveled the world and hung out with stars mostly now hang out with doctors and sit, waiting in sterile rooms. What’s wrong with this picture?

Oh, right. It’s the getting old thing.

Have a nice day, y’all.

Visiting the oncologist if you forgot the Kindle but brought a camera …

A visit to one’s oncologist … the routine kind of visit when you haven’t got any deeply disturbing new symptoms and your best hope is that nobody finds anything the least bit interesting and you get to go home with all the same pieces you had on arrival. A visit after which no one calls to say you need to come back for more tests. The “normal” visits everyone who survives cancer hates, but figure as long as they stay boring, that’s good. “Survivor” as we all know, means “not dead yet,” and that’s the way we want it to remain. Whatever else is wrong with us, as long as the bottom line is “I’m alive!!” we are happy campers, or as close to happy as you can be when one of your primary doctors is an oncologist.

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Yesterday was a deferred, re-scheduled quarterly visit.

And wouldn’t you know it, I forgot to stuff my Kindle into my bag. The lab took forever and the only tech they have who can find my good vein was off. I have only one usable vein. If you miss it, good luck finding another that will yield enough blood to run the tests.

The day had gotten off to a roaring start, as it so often does, because we got stuck behind one of the areas super slow drivers. Being as our roads are one lane in each direction, stuck is stuck. Naturally, whoever they were, they were going exactly where we were going … the Milford Medical complex — Milford Hospital and our local Dana Farber outpost. We  tried not to start honking the horn or acting  crazy.

It happens every time we have to go somewhere and need to be there at a particular time. I’m not sure how they know we’re coming, but that 25 mph driver is waiting and will always be immediately in front of us as we try to get wherever we are going, almost always a doctor or hospital. Oddly, we never have any trouble getting home quickly … when we aren’t on a schedule.

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We got there more or less on time anyhow, but the lab took a long time. She needed to keep hunting for that vein. She finally found it and I tried not to act as surly as I felt. Probably I failed. I was surly. They never listen to me.  You’d think, having been the owner/operator of this body for 65 long, painful years, they’d figure I might know a thing or two about it, but they always assume I’m either senile or retarded. Maybe both.

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We had to wait for the lab. We had to wait for the doctor. Then, we had to wait some more because I needed a chest X-ray and the X-ray tech was in the other building (the hospital across the street) and when he showed up, the software that runs the X-ray machine was on the fritz. I suggested he reboot. He said the last time he did that, it totally died. I pointed out he had nothing to lose: it wasn’t working anyhow.

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He rebooted. It died completely. Another tech joined him and they concluded that the machine was (again because this is apparently a regular event) broken. I could have told them that. The reason that there happened to be a second tech right on the spot was because my patient husband, who was sitting there reading his newspaper had realized that his paper was getting wet. That it was raining outside was one issue, but we were in the lobby of the relatively new Dana Farber almost-but-not-quite state-of-the-art cancer facility. Less than 5 years old, anyhow.

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So they called the guy to fix the leak (again) because this too was a regular event. They had yet to figure out where the water was coming from. They thought maybe it was coming through the electrical system and leaking out through a lightbulb, leading me to suggest that they could put a lot of people out of their misery by upping the voltage and electrocuting people in the waiting room. The administrative nurse says “Nah, we’d need an electrical upgrade to get the voltage high enough to do anyone in, but maybe they could fix it on the next remodel.”  I love nurses.

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I had nothing to do through most of this. Lacking my Kindle, I dug around and found my little Canon Powershot 260, which I carry all the time to handle photographic emergencies. After exploring the contents of the chip, deleting some really bad pictures, I figured I might as well try to see if there’s anything to photograph in the various waiting areas of Dana Farber Cancer Treatment Center in Milford, Massachusetts. That’s what happens when you forget to bring something to read.

Why they have a grand piano in the lobby is anybody’s guess. I’m afraid to ask.