27 posts categorized "Cancer"

Fear and Loathing of Pancreatic Cancer

Pancreaticcancerawareness160leftEarlier this week, a surgical aide explained some of the things I will need to do when I get home from the hospital. It's a long list, some of them being relatively big changes in daily life.

Without putting any thought to what I was saying, I responded to one item with, “I have to do THAT for the rest of my life?” It took only a moment for me to laugh at myself.

There comes a time when using the phrase “the rest of of my life” to indicate “forever” needs to come to a halt. I'm 76 for god's sake and I've got pancreatic cancer. That phrase should have reached the end of its shelf life for me a long time ago.

As the days until surgery dwindle down now and most of the chores and preparations are finished, I've had more empty moments to let the actuality and seriousness of my condition sink in.

In short, it sucks.

In further short, I am afraid. There is so much to be afraid of:

I might, even unrelated to the cancer, die in surgery and the details of my life are not in good order at all for cleanup

Maybe something will prevent removal of the malignant tumor

Potential complications following surgery are not uncommon nor minor

With or without all that, recovery is long and arduous. Am I up to it? I don't know

From what I've read, I can write off the rest of this year; complete recovery from surgery will take that long

In terms of health, I've led a charmed life. I've hardly had to think about my body – just feed it reasonably well and move around a bit to keep it in good working order. I'm deeply unprepared for the difficulty of this journey

Mostly, I just want my life each day to be normal. Ordinary. Unremarkable. But that's not going to be anymore – at least not by my definition. Can I do this with a modicum of grace? It doesn't feel like it right now.

Okay. I'm having a bad day. So many of you, in comments and private email, have remarked on my good attitude and strength. It is nice to be perceived that way and maybe it's true.

But so is what I'm writing now, in this moment as I try to see the computer screen through tears. I am afraid, maybe the most afraid I have ever been.

And I am furious: why, with so much fantastic science in the realm of technology just in our lifetimes haven't we applied that much energy, money and innovation to finding a way to cure – or at least successfully treat – all the hateful cancers that make miserable the lives and deaths of so many millions of people?

Do we really need one more fancy cell phone or shiny auto model?

How about, at the very least, cleaning up the environment. That would prevent some goodly number of cancers. We know that but we do next to nothing. And not to point fingers, but we now have an administration in Washington whose members are actively reversing the few steps we have taken in the right direction. "So sad," as one of the perpetrators is wont to tweet.

There is, I have discovered, a not-so-subtle pressure on patients of dreadful diseases to put on a face of bravery and fortitude and grit and spunk. Some of the time that's easy. I actually feel that way - no effort involved.

And then are days like now when I am so frightened I can hardly breathe and unanticipated tears spring forth. I know I'm not the only one but someone needs to say it out loud, that it happens.

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Bucket Lists and Telling Our Stories

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It was the 2007 movie starring Jack Nicholson and Morgan Freeman that gave us the phrase – and title of the film - The Bucket List.

Since then, bucket lists are a common meme among most Americans - I don't know about other countries – and some people take them quite seriously.

If ever there is a time for a bucket list, it is when you are diagnosed with something as serious as pancreatic cancer.

In off moments since my diagnosis, I've been running the idea through my mind to see if there is something I want to do. An experience I've missed. A place I long to visit. A do-over maybe. Or something.

And nothing comes to mind.

The thing is, I've had a terrific life. Nothing spectacular, some disappointments, a bunch of terrific jobs that introduced me to ideas and people and places in the world I would never have done on my own. And taught me or led me to pretty much everything I know.

Most of my friends and acquaintances over the years have been smart, interesting, good people that I love spending time with even, these days, at a long distance. Too many I love died too young. I miss them but I hold them close in my heart still.

Further, in doing this blog, I've found how many people are unprepared for retirement and flounder around for a long time without a place to go every day, without a job or title by which to define themselves.

It was different and so much easier for me. In no way did I plan it; I just got lucky. I started this blog before the end of my career, segued with it to full time and now, after about 14 years, it is who I am and what I do: I write and produce a blog about what it is really like to get old.

And people actually read it. How good is that.

I would like to keep doing it for – oh, how about another 14 years or so. May the gods - and modern medicine - grant that wish.

MY BUCKET LIST
But just in case, isn't there something I can come up with for a bucket list? Well, yes - if it is about longings. Two items but only one is doable.

Bucket list items, by their nature, are one-time things so this doesn't fit exactly but I think about it all the time: I wish I could live in New York City again. Not just visit. Live there. It is where I belong. The ground that I love. It is my home.

That's the undoable one. Here's the other:

There is a small, unpretentious restaurant in the coastal town of Cannon Beach, Oregon. I don't know its name but I know how to get there and they make the best fried razor clams I've ever eaten. As plain as the restaurant is, their razor clams dish is a world-class.

It's been awhile since I've been to the coast (it's only a two-hour drive) and a good friend has already signed on to take us there for lunch as soon after the surgery as I can do that.

TELLING OUR STORIES
On Monday this week, I came to see that there is something else, not a bucket list item, that is the best thing ever to get me through this “trial” and, after the surgery, to carry me forward for as long or short as it will be.

Two neighbors, a couple, came by my apartment that day. They are heading the little “committee” that will take care of necessities (like the cat) while I'm in hospital.

We finished that business and then spent the next 20 minutes or so telling funny stories about the pets (they had just adopted a new cat to replace one who died a few months ago) and other animals we've known and loved. We laughed so hard and I am still smiling from that as I write today, Tuesday.

Later that day, I had a phone conversation with an old friend on the east coast, telling him about my new predicament. We got through that and then we talked politics (we're both addicted) and comedians we like and some movies and TV shows and we laughed a lot about all kinds of things.

About life. Not death.

That's what I want from everyone right now. I'm not even in the hospital yet or in recovery yet but what energizes me and makes me happy and makes me feel alive is being with people, telling our stories and laughing together.

What's on your bucket list?

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From Mystery Malady to Pancreatic Cancer

Pancreaticcancerawareness160leftAs I mentioned on Friday, TGB reader dkzody last week commented that she had believed pancreatic cancer is hard to diagnose and wondered what my “mystery malady” was.

Today, I'll tell you my experience with that mystery and my eventual diagnoses of pancreatic cancer. Keep in mind – no foolin' around – that my story applies only to me. I have no idea how this works out with other people.

MYSTERY MALADY SYMPTOMS
Last October, after some unaccounted-for symptoms prevailed over two or three weeks, I visited my then-physician who brushed me off after seven minutes saying it was probably a virus that would go away soon.

The symptoms were painful or irritating or alarming enough (to me if not the doctor) that it was obvious I needed a different physician. If you really care, you can read about my difficult search for a new primary care doctor here.

After my many failed attempts to find a doctor who would take me, a friend intervened at a major teaching and research hospital here and I got an appointment right away.

The mystery malady had begun in October 2016 and has continued until 31 May 2017 when, finally, the diagnosis was determined. As terrible as it is, there is a kind of relief in knowing the malady has a name.

In between those dates, there was a collection of 12 to 15 symptoms that came and went mostly independently of one another, usually several at a time in various combinations over the months. Here's a list that is as close to complete as I can make it:

  1. Random pains rotating through sides, stomach area, chest and back

  2. Sick headaches a couple of times a week

  3. Malaise

  4. Vertigo

  5. Weird dark spots on skin that come and go

  6. Weight gain early on

  7. Weight loss later (once, 11 pounds in two weeks)

  8. Extreme tiredness – stopped daily workouts

  9. Hard to sleep more than three or four hours

  10. Bright orange urine

  11. Unbearable itching on every inch of skin

  12. Abdominal pain following meals

  13. Deep, horribly aching pains in upper arms

  14. Worst leg cramps I've ever experienced

  15. Jaundice

Usually, there were “only” two or three or maybe four of these symptoms at a time. The orange urine was so bright you could have lit up the whole bathroom with it. That happened for a week or two in February, subsided and again for a few days just before the diagnosis.

The itching occurred concurrently with the orange urine, was terrible all day and ten times worse at night. No anti-itch creams like those for mosquito bites worked. The pain of scratching too hard, even if I drew blood, was preferable to the itching.

If it were not so awful, it would have been funny: at one point I twisted a paper towel to pull back and forth between my toes because I couldn't effectively scratch there.

The deep-yellow jaundice appeared a couple of days before the diagnosis.

As I said, I never had all these symptoms at once. It was a mix-and-match mystery malady over seven months. A few continue as I await surgery.

DIAGNOSIS
Through all this, I was seeing the doctor regularly. He tested for just about everything and it seemed, over the months, that they took a gallon of blood from me. All the tests came back in the normal range. All the various kinds of scans and a colonoscopy returned normal readings.

Then, on 31 May, I returned home from that latest appointment to a phone call from the doctor I had just left: Get to the hospital immediately, he said. A bed is waiting. I'll meet you there.

I forced him to tell me why. The words “pancreatic cancer” were said but that's not something that sinks in at first. It takes awhile. If I found out what had alerted him to the diagnosis, I don't recall now.

It's also hard to recall what they did to me in the hospital, but before long the itching and most of the pain were gone. Lots more tests were performed and the endoscopy during which a temporary stent was placed to redirect some effluviant(?) of the body.

If you try to find out online why it is so difficult to diagnose pancreatic cancer, you won't get far. Most pages – even from some of the highly respected health organizations – go straight from “it is difficult to diagnose” to “once it is diagnosed, treatment is...”

If I tried, I might find some better information but mostly I don't have time and I'm not all that interested right now. Maybe someday.

So, there you go, dkzody. That's the mystery malady and the diagnosis.

As I said before, they – healthcare people – are keeping me busy. There is another test or consult almost every workday. There is much to arrange for Ollie the cat while I'm gone, for what I need to take to the hospital, for care when I get home and to arrange the house for what I can and cannot do on my own when I return.

I've tried to keep up with email from all you wonderful readers but I know some have slipped through the cracks and I run out of steam with a need to lie down to rest or nap several times a day. I had no idea how much there is to do to prepare for surgery. I thought the hard work is afterwards.

Oh, one more thing: Throughout this odyssey, I used the phrase "mystery malady" as kind of joke to myself about all the disparate symptoms. It has turned out not to be much of a joke but it served me just fine until there was a real name.

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Some Reason for Hope

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Although I could argue the point, it is possible there is always reason for hope and I found that on Wednesday during my consult with the surgeon and his team.

Having decided that formality is a good posture to adopt while facing the news of one's mortality, I dressed up for the occasion. I have never been able to get comfortable with suburban (and even urban) Oregon casual anyway, so I wore a pair of my best pants, dressy shoes with a small high heel and a velvet shirt worn loose (my concession to casual) with a big, fancy sun hat. (It was a gorgeous spring day.)

I was apprehensive, frightened too, but equally eager to know my future and, maybe ghoulishly, how long I can expect it to be.

Tests in the hospital last week and more in followup examinations since then show that I have a malignant tumor in my pancreas. The surgeon has a handy, multi-colored rendering on the wall of the inside of the human body and he pointed out the pancreas, showed me where exactly within it my tumor is located, the nearby gall bladder, duodenum and other body parts I had hoped never to know about.

Then he said this: my pancreatic cancer is “potentially curable” and this: patients with a tumor similar to mine wholly contained within the pancreas and in my otherwise healthy physical condition have a 25-30 percent “cure rate.”

Now I wouldn't take those odds to Las Vegas but considering that only about five-to-seven percent of people in the whole universe of pancreatic cancer survive, I'll go with it.

And in case you were wondering (I was), what would happen if I reject the surgery and do nothing (the only real alternative in this case), “you'll be dead within a year,” he said.

The surgeon will perform a Whipple procedure (look it up) in which the diseased part of my pancreas will be removed along with my gall bladder and some other bits and pieces.

It's a long, complex surgery, he said, about eight hours. I'll spend a day afterward in the ICU and another seven to 10 days in hospital. If I'm strong enough by then, I can continue recovery at home instead of rehab. His goal, the surgeon told me, is to return me to a normal quality of life (See Wednesday's post).

As with all surgery, there are risks and there are, sometimes, post-operative complications to deal with. Even without those, recovery is difficult and will pretty much take up the rest of this year.

The surgery date is 20 June. I asked what I can do in these next two weeks to best prepare my body for what I think of as an assault. Exercise and good nutrition, the team said. Eat, eat, eat. Exercise, exercise, exercise.

Obviously, there are many more details but be honest, can you stand even this much?

My surgeon and his team are world-class - he is a well-known pancreas researcher and I am in excellent hands. And this kind of prognosis, small percentage as it is, gives me huge incentive to work hard at helping my body prepare and afterwards, to heal.

Now, two TGB items. First, your support is wonderful. I hadn't given any thought to how this announcement would be received so the outpouring was a surprise and shock – in the best sense of the word. You have no idea how much you all mean to me.

Second, on Wednesday, reader dkzody commented that she thought pancreatic cancer is difficult to diagnosis and wondered what the “mystery malady” I mentioned was.

She is right about the difficulty and I'll tell you about my experience with that on Monday. But then I think that even though my current personal circumstance is uppermost in my mind every day, it's probably not in yours and we can get back to the real goal of this blog – what growing old is really like – for awhile.

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The Joy of the Ordinary


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Nobody tells you – well, nobody told me - how busy they keep you when you're sick. And these aren't things you can blow off.

Except for the weekend when I was fairly well wiped out from all the “work” I had done in the hospital the previous three days (and so it had seemed to be), I have had at least one medical appointment a day and there are more booked.

Okay, I lied. Monday there were no visits but there might as well have been: there were five telephone conversations with doctors and other medical professionals, some lengthy, and a lot of new information to absorb.

During the calls, I was a crazed note taker, scribbling as fast as I could. Most of this is new information about which I have no previous useful knowledge and therefore no past references to call on to make the information my own.

So after the calls I spent a lot of time rereading and organizing the notes to be sure they will make sense later.

All this does not account for phone tag and then the wait time on return calls – sometimes up to 30 minutes. I understand there are a lot of other patients whose conditions are at least as serious as mine and I don't begrudge that kind of wait. I just get tired from it.

And now, thanks to those health care people, I have checkups and followups, appointments, tests, etc. scheduled well into August. And they haven't even done anything to me yet. Whatever the outcome of treatment, this kind of busy-ness isn't going away soon.

Then there are the household chores. Enough kitty litter and cat food to last through a long hospital and, possibly, rehab stay so the helpers have what they need. A list of what to take to the hospital: The internet is fabulous for this kind of minutiae but it can't find the small travel hair brush I KNOW is here somewhere.

There are banking issues to arrange, usually in person, automatic bill pays to set up for my absence because god knows credit card companies and utilities don't care if you're sick when the payment is late.

Meanwhile, the electricity in half the kitchen outlets is suddenly dead – that's annoying - but no way to have the electrician here until I know my upcoming schedule. Plus, unrelatedly, my bedroom clock broke.

When I complained about some of that to a friend via email (hopefully with some self-mocking in my “voice”), it was a surprise to be told that I should lay those chores off on helpers, and that I am not doing “this” well.

Maybe so but I'm a beginner at "this" and here is the thing: I have just a few days before treatment begins, probably with surgery, and then my life changes to something completely new. It is a long surgery, a long hospital stay, a long rehab. And, I assume, chemo after that.

Maybe it will be successful. Wouldn't that be wonderful? But maybe it won't.

Either way, during these frightfully few days I have left before signing on to be a patient for god knows how long – maybe forever in terms of my personal life span – I am relishing the mundane errand.

While I can still do them - the chat with the bank manager, making the lists I need, buying a new clock and all the rest of the things I have been doing every day for my whole life and not appreciating until now - they feel important and comfortable and real and even almost miraculous in the current circumstance.

How wonderful it is to have just an ordinary day. How deeply I want more of them. And more after that. For as long as I can.

Today is a big day. After months of my “mystery malady”, what seems like a gallon of blood given for tests during that time, more different kinds of scans than I can recall, while some of you read this I am meeting with the surgeon and will learn about my immediate future and, maybe, beyond.

Thank you for all your kind wishes. I am enjoying them and appreciate every one of you so much.

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The Disease Begins to Come Into Focus

Wow. You are, each and every one of you, wonderful people. Regarding the number of comments and seeing the latest of them, I never noticed before that after 100 comments there is a "more comments" link. You can follow that to see the additional comments.

The weird thing with this not-so-good diagnosis is I feel a bit like that old joke about how Mrs. Lincoln enjoyed the play: except for the cancer, I'm quite healthy so what could be wrong.

I've wakened each morning since the diagnosis on Thursday with, as has always been, thoughts about what I will do that day. Then I recall the new world I live in. Oooph.

And no matter how long I have slept I am, first thing now, already exhausted. Okay, I had an endoscopy and even if it doesn't show on the outside, it is surgery. I get that. Plus, here's an interesting medical tidbit one of the doctors gave me:

Cancer, he says, is high energy. It uses up energy at a faster rate than a cancer-free body, and he admonished me to watch for unexpected weight loss. Ha. It's the first time in my life I've been urged to eat more. Ice cream here I come.

Some of you wrote to ask, similarly, what a husband-and-wife set of TGB readers wondered:

”Would you be willing to share your ongoing story to the TGB audience? Only to express your current (at the time) situation as well as the symptoms that lead you up to the doctor's appointment. This may help thousands of us be watchful and more careful with habits like smoking, diet, and exercise.”

Since, for the duration, little else will be on my mind, that could be a useful idea and I'll give it a shot. I promise I'll do better than just an organ recital and that shouldn't be too hard since already I can see that having a frightful disease is more about dealing with it intellectually and emotionally than the day-to-day treatment.

Well, it is for now – until I'm in pain and and sick from chemotherapy. That's a different problem I've decided not to think about until the time comes.

My father died of this disease, pancreatic cancer, so I harbor no illusions about how awful it is. But that was 35 years ago. Maybe doctors know more about it now. Or maybe not.

Thank you all for being there. I knew we had created a special community at TGB over the years. But I didn't know until now how extra special it is.

Thank you for all the email too. If I haven't answered, it's only that I can't keep up (a good thing) and still do what is needed to be ready for what is coming. Please understand.

A lot of you seem to think I'm a brave person. I've never thought about that one way or the other but I sure hope you're right.


INTERESTING STUFF – 3 June 2017

UPDATE: 4PM PDT: I am overwhelmed with your love and good wishes. I so appreciate them and all of you. There is a rule, apparently, at Typepad that there can be no more than 100 comments which we have now surpassed. I have written to them and asked if they could forgo the rule for this blog post but will probably not have an answer yes or no for awhile. Meanwhile, know that I can read the additional comments offline. I'm so sorry - I apologize for this inconvenience.

* * *

Believe me, this is not what you were expecting today.

Not your normal Saturday Interesting Stuff column. And it is something I never imagined dealing with on TGB. But there you are – shit happens in life. No one ever promised you a rose garden. And all of that.

Yesterday afternoon, I returned home following three nights in hospital, a bunch of tests, an endoscopy procedure to set a stent and having met more new people – professional caregivers of many stripes - in that short time than I've ever met in a whole year before. Diagnosis: pancreatic cancer.

Oooph. That's a kick in the gut. I can't pretend otherwise.

So I wasn't home to write today's Interesting Stuff and Peter Tibbles, the author of the weekly Sunday music column agreed that it's best to “tell readers what's going on,” he said. “They're a smart bunch.” And so you are.

Next Wednesday I'll meet with the surgeon again. He's in his mid-50s, I'm guessing, and get this: his entire specialty his whole career has been the pancreas and only the pancreas. It makes me wonder if there are physicians who treat only one leg or the other, one arm at a time, etc. (That's a weak joke, folks.)

Surgery will follow soon after that meeting – a week or more in hospital and then rehab for a week or two, they say. Of course, details are subject to change but now you know why posting may be spotty for awhile.

Anyone who has sent an email, please forgive me for not answering. I arrived home from the hospital to more than 800 new messages and just hit delete – too tired to sort them.

This isn't going to be easy and I could probably benefit from a crash course in patience about now. Is that an oxymoron, do you think?