57 posts categorized "Cancer"

Thank You All

Following Friday's post, janinsanfran sent this note:

”A friend whose partner has just advanced into hospice care (spinal cancers) wrote this to their friends: 'There is no good way to die. But if we must die, and we all must, may it be with a community as loving, as present, as kind as you.'”

Oh my god, yes. How can I possibly thank this community that has responded to Friday's post about my new cancer with such an outpouring of love and care and concern and humor.

I've always believed you are, each and every one of you, the most special blog readers on the planet and you proved it on Friday and over and over again through the weekend.

You have had me weeping for all the best reasons.

I read each of the hundreds of responses in the comments and dozens of others that arrived via email and Facebook. And then I read them all again.

So let's do this together and see what happens. I made a few notes from all your comments on TGB, Facebook and emails.

In just the third comment to arrive, Genie wrote:

”This morning I imagine you as the captain for this journey. I only hope the ship is large because there are so many of us coming aboard.”

And the rest of you ran with the boat metaphor, adopting it as our preferred means of travel.

Deborah May wishes for the next phase be “full of sunshine and serenity - with calm waters given the number of us on this boat (ocean liner) with you.”

Tarzana thinks we should hold a contest to name this boat we're on:

”I can already think of many possibilities,” she wrote. “Courageous, Hope, Gratitude, Fortitude, Journey's End and so forth. Your loving readers are much cleverer than I so I'd expect some real stunning, even humorous entries.”

Do take a shot at it if you are so inclined (yes, definitely even humorous entries). I'll select four or five and then we can vote.

I learned that there are more of you than I guessed who are cancer survivors or in the throes of treatment or living with the aftermath of this awful disease – or another terrible “disease of age.” I wish with all my might we did not share this.

Of course, I recognize many names in those Friday comments but there are a lot, too, that I've never seen before, first-time commenters. Quite a few of you mentioned that you've been reading TGB since the beginning or near enough – did you know that's 15 years ago now?

I was amazed to read that for some of you, the blog is the first thing you check online each morning. If I'd known that, I would have worked harder at it all these years.

Daria tells us that “a friend nearing the end of her life smiled and said, 'Now I can eat bacon anytime I want!'” Yes! Me too.

I mentioned that I instantly gave up my daily workout and am relieved to not need to worry about dementia anymore. I've since added Facebook. I use FB only as a secondary distribution channel for TGB and I have not the first clue about how to use it. To me, it's functionality appears to be a holy mess and now I have the best reason in the world not to learn it. You guys came up with some other things I don't need to do anymore.

Kathy Zachary said she won't miss flossing when she's dead. Yes. That too. Mary noted that I “won’t see the horror and dismantling of our democracy if trump is re-elected in 2020.”

Good thought but I've been saying since 2015 that I will be pissed off big time if I die before I find out what the demise of the Trump era will be like. Color me pissed.

Marilyn Dalton noted that I don't have to worry about outliving my money. Good point. And Carol Girgis gave me a smile that nearly broke my face, first quoting me, "Now I don't have to worry about dementia" and responding, “Best line I've ever read, written in these circumstances.”

Moving along, poet Tom Delmore sent a short video by Leonard Cohen who died in 2016 at the age of 81. It is supposed to be about finding his voice but it is also deeply pertinent to what I face now.

May I live up to Cohen's conclusion in these coming final days.

Apparently Leonard Cohen is on others' minds too. Faith sent a Cohen poem about courage which you will find here.

John Brayton left this quotation from Donald Hall's final book, A Carnival of Losses: Notes on Nearing Ninety - new this year and an instant favorite of mine. Hall died earlier this year at age 89:

"I feel the circles grow smaller, and old age is a ceremony of losses, which is on the whole preferable to dying at forty-seven or fifty-two. When I lament and darken over my diminishments, I accomplish nothing. It's better to sit at the window all day, pleased to watch birds, barns, and flowers."

I agree, and thank you Mr. Hall for saying it so well.

What a gift and honor to have so many of you on this new journey with me. With all you here, I think I can get through just about anything.




Into the Great Unknown

”...progressive disease,” says the CT scan report, “with new and enlarging multiple metastatic lung nodules and new peritoneal nodules.”

It was Monday morning this week when I heard that statement paraphrased in a meeting with my oncology physician, my nurse and a social worker at the Oregon Health & Sciences University (OHSU), following up on a CT scan from the previous Friday.

Although I was hoping to be wrong, it's not like I wasn't expecting this outcome. Ten days or so earlier, I had seen the chart of a blood test for “tumor markers”. It looks like this:

Cancer Tumor Marker

I don't know what is being measured and we don't need to know. What matters is that the high number on the far left was reported just before my Whipple surgery for pancreatic cancer in June 2017. The next one – at zero – was following the surgery and you can see what has transpired since then, triggering the conclusive CT scan at the end of last week.

The only treatment is chemotherapy which, they tell me, cannot kill the cancer but can slow the growth enough that I might have six or eight months of healthy living before symptoms begin.

The awful irony is that right now I feel terrific, in as excellent health as I was before I was diagnosed with cancer in mid-2017. Even so, the first decision I made about the rest of my life is to stop my daily workout routine. Immediately.

Because I know that regular and fairly heavy exercise goes a long way toward staying healthy in old age, I've been doing that (with the exception of the months of recovery after the surgery) five mornings out of seven for six or seven years - and I despised every moment of it. Now there is no reason and I am relieved.

Another upside is that I don't have to worry about dementia anymore. No more of those little online tests about what are normal memory problems and what are not. Whew. I'm glad to be done with that too.

I'm sure that in the coming days and weeks I'll find some other things I can happily leave behind.

So what should I do with the time left to me? Yeah, yeah, I know – everyone is dying every day but believe me, I now know that it is quite a different thing from that abstract platitude to a closely defined period of time.

I never had a plan for my life. Beyond being a professional ballet dancer for which I turned out to be physically unsuited, I didn't know what I wanted to do when I grew up. I followed my nose as things came into view and had a wonderful career in media production – radio, television, internet - for nearly 50 years.

Only recently did I discover a quotation from entertainer Elton John that well describes how I have lived: “If you let things happen, that is a magical life.”

And so it has been. I've mostly “let things happen” and have rarely been disappointed.

So no bucket list for me – in fact, I actively dislike the entire idea. I already have plenty of memories to recall and anyway, I really like this life I have now.

A young person would certainly find it boring. Each morning, I commute from the bedroom to my computer. As we all can do now, I follow the news and its commentary and other kinds of writing, too, from wonderful writers all over the world online.

There are friends to have lunch and spend time with. Lots of good books to read along with many good movies and TV shows if I want. Not to mention, my current affairs discussion group which has become more important to me than I would have guessed when it began two years ago.

My main daily occupation is this blog and its subject – what it is like to grow old. I've been doing this for about 15 years and still am not tired of it. It feels a lot like the years I was employed – going to work every day doing something that I enjoy.

Five days into my new circumstance now, I have decided to keep doing these things as if I had all the time in the world. That may change in the weeks and months to come and if so, I'll figure out then what is next.

For now, from time to time I will write here about this final journey hoping that what could be taken as overly self-indulgent might, for some readers, be of possible value as another person's way of approaching the end of life.

Another quotation that has helped drive my life is from the British writer, E.M. Forster. I discovered it when I was in my twenties realizing then that it describes perfectly how my mind worked and still works:

”How do I know what I think until I see what I say.”

For me, it takes writing it down (on paper or, these days, on a screen) to know with any clarity what I think and believe. So writing for you is also for me and will help me work out this frightening last mile or two.

I have sometimes said to myself and to others, how hard could dying be? Everyone who has ever lived has done it – even the really dumb ones. But of course, it's not anywhere near that simple, is it?

For the near future, nothing will change here at Time Goes By except that I will more frequently write about heading into the great unknown. If you want to join me, I will be so happy to have you here.




The Joy of Surviving Pancreatic Cancer Plus The Alex and Ronni Show

[NOTE: On Tuesday, my former husband Alex Bennett and I, recorded a new episode of The Alex and Ronni Show. It is posted at the bottom of this story.

* * *

As I begin writing this on Thursday morning, everything is fine. It's a normal summer morning - the sun is shining (it will be a scorcher this afternoon), I've had breakfast, am working on another cup of coffee and looking forward to lunch with a friend.

Nothing remarkable is going on.

And that is the point.

There have been a lot of new subscribers to TGB in the past couple of weeks so here is a short recap to bring you up to date:

In June 2017, I was diagnosed with pancreatic cancer, endured a 12-hour Whipple surgery from which it took most of a year to recover including three months of chemotherapy.

An internal bleed developed leading, over months, to many blood transfusions and, eventually, two (much less invasive) surgeries in April that were successful. There has been no bleeding since then but thanks to the chemo and the blood loss, I became severely anemic.

That led to five, weekly, liquid iron infusions that ended three weeks ago.

Okay. That is the bare bones history. It is the hardest thing I have ever been through in my 77 years, and although I went for the treatment, deep down I believed I would be dead by now.

Personal health reporter Jane Brody pointed out in The New York Times earlier this week that pancreatic cancer is rare, accounting for just three percent of all cancers, but is one of the deadliest:

”Although 55,440 cases, affecting 29,200 men and 26,240 women,” writes Brody, “are expected to be diagnosed this year in the United States, 44,330 people will die of it, often within months of diagnosis, making it the fourth leading cause of cancer deaths in this country (after lung, colorectal and breast cancer).”

I ran those numbers. They mean that only 20 percent will survive beyond a few months.

Back in mid-January, after the chemotherapy ended, my Whipple surgeon told me that blood tests had revealed “no current evidence of cancer.” (They are always so meticulously careful with their wording, these cancer doctors.) “Go,” he said waving me toward the door, “and enjoy your life.”

God knows I tried but I didn't feel much like celebrating. Certainly I was relieved but it was tempered with the knowledge that blood tests are not conclusive.

Three weeks later, after reviewing other tests including a CT scan which is more definitive, my oncologist said to me, “There is no sign of the cancer at this time.” (They are always so meticulously careful with their wording, these cancer doctors.)

But I still wasn't ready to throw a party. Smiles on the faces of friends when I told them the scan results were hugely encouraging prompting my own smiles in return. But facts interfered with the joy I believed I should be feeling.

Undoubtedly that reticence was due at least in part to the fact that I knew – and know - pancreatic cancer is resistant to most therapies and it often recurs following surgery either in the pancreas again or another body part.

And even if I had been dancing in the street, there was still the anemia plaguing me which, weeks later, led to the iron infusions.

Thursday morning (today, as I write this), I woke to an email message linking to my online medical records where there were results of blood tests taken on Wednesday. There was also a note from my primary care physician:

”Your lab work looks great!” he wrote. “No signs of anemia and looks like your iron stores are all tanked up.”

And then, THEN – even though the anemia was due to blood loss and chemotherapy, not cancer – I finally felt free to celebrate. I thought my heart might burst as tears of joy spilled into my coffee.

It seems nuts to me that overcoming anemia makes more difference to my sense of good health than cancer-free test results earlier this year. I felt the gradual return to more normal energy levels during the five weeks of iron infusions but there had been poor test results for so long I don't think I trusted my own senses.

I haven't forgotten the high incidence of recurring cancer I face but now I can set that aside. That's what I have wanted more than anything – to feel like I did before all this happened.

And now I do. Yes, some bits and pieces are missing. I'm short a gall bladder, a duodenum, part of my stomach and half my pancreas. There are three or four pills I need to take several times a day for the rest of my life to make up for those losses.

But that is nothing compared to this marvelous feeling of well-being and most of all, ordinariness I have now.

U.S. Supreme Court Justice Ruth Bader Ginsburg – “Notorious RBG” – has been a hero of mine for a long time. What I did not know until sometime after my initial diagnosis is, as Jane Brody explains in The Times, Ginsburg

”...had part of her pancreas removed after a routine CT scan revealed a one-centimeter lesion. While that lesion was benign, a smaller tumor the surgeon found was malignant and had not yet spread beyond the pancreas.”

That happened in 2009, when she was – as I was last year – age 76. Justice Ginsburg gives this old woman hope she too can make it at least another nine years cancer-free and even resurrect her pre-cancer goal to live as long as her great aunt Edith, 89.

But it doesn't matter if I don't. The universe gave me this extra time that 80 percent of pancreatic cancer patients don't get. Most of all, right now, I want to wallow in the joy of my return to ordinary health.

* * *

Here is latest episode of The Alex and Ronni Show.

If you would like to see Alex's entire two-hour show with other guests after me, you can do that at Facebook or Gabnet on Facebook or on YouTube.




Pancreatic Cancer One Year Later, Plus The Alex and Ronni Show

At the bottom of today's story is the latest episode of The Alex and Ronni Show. Some of the conversation relates to this post and - god help us, there's more kitty talk.

* * *

On this date a year ago, I spent 12 hours under anesthesia while a surgeon and his many associates in that room poked around in my wide-open torso removing and/or rearranging several organs or parts thereof with the goal of saving my life.

Here is what I looked like directly after they stapled me back together and then carefully watched over me until I was allowed to go home 11 days later.

WhippleRecoveryCU2017_07_21680IMG_4246

My friend and health care proxy Autumn Schoen, who traveled from New Jersey to be with me that week, took the photo at my request – I wanted to know what I looked like after such a formidable and frightening procedure. (Thank god they put you to sleep.)

If you recall, Autumn also did an terrific job of keeping you up to date on my progress with her blog posts (here, here and here) until I could write them again myself.

What the surgeons did that day is called the Whipple Procedure, also known as a pancreaticoduodenectomy. (Yeah, just try to pronounce that.)

Although the surgeon had pulled no punches explaining how difficult it would be for me, particularly the recovery, I still was not prepared for how awful the first couple of months turned out to be.

Getting through that period is the hardest thing I've ever done. Nothing in my life comes close. Many mornings I seriously wished I had rejected the surgery and just let myself die.

Slowly, however, it got better. Before the surgery, I had stocked up on frozen foods since I knew I wouldn't be able to cook for awhile. Friends and neighbors generously shopped for me, cleaned Ollie the cat's litter box, took out the trash, drove me to medical appointments and that's just the daily, practical stuff.

They also were there with moral support through those first couple of hard months and the entire year following, too, as I gradually improved. Except for a couple of remaining small issues, I have designated myself 95 percent recovered.

Even better, several tests over the past five months show I am free of cancer, the doctors say. Since it's pancreatic cancer we're talking about and hardly anyone survives even a year, I must have been Mother Teresa in a past life to have gotten this far.

As I said in a previous post,

“This definitely is a grace – defined by Christians as an unearned, unmerited, undeserved favor from god. If like me, god is a tricky concept for you, think of it as the same kind of gift but from the universe.”

It is impossible for me to properly express my gratitude not only to those friends and neighbors who helped at home but to the dozens of doctors, nurses, technicians and the many other kinds of care givers and helpers at Oregon Health & Science University (OHSU) who have been there every step of the way with their unfailing knowledge, expertise, compassion, understanding, encouragement and kindness.

Getting to where I am, however, is not like healing a broken leg - finished and done with after six weeks or so. I am acutely aware that the cancer can return and often does, and that's not easy to live with.

Until a year ago, even with my long-term annoyance at television and radio commercials for prescription drugs, I had no idea how frequent and frightening cancer “cure” commercials are. I don't suppose it occurred to me, pre-diagnosis, that they could apply to my circumstance. That's different now.

These days, I am incapable of ignoring them and cannot bear to hear them. As a result, I have become masterly swift at hitting the mute button when those adverts appear.

Surely I've mentioned several times over this past year that the last thing I have wanted is to become a professional patient. Ha! How naive of me.

Nobody can take up to 20 pills a day, count them out weekly into their little container compartments, keep up with refills so not to run out (somehow, they never need replenishing on the same day or week) and not be reminded several times a day that you will always be a patient now.

I've tried to make jokes about how my doctors, lab attendants, nurses and others at OHSU are now the major part of my social life but it's actually not a joke – I see some of them more frequently than friends and in fact, some have become friends of a kind I don't have a word for. But it is a good thing.

So I've had to make peace with being a professional patient. And I'm getting good at it. When I gave a doctor the daily notes I had made over several weeks tracking the internal bleed (now fixed), he said, “I wish all our patients made lists like this for us.”

Until the cancer diagnosis, I had lived a remarkably healthy life for 75-odd years. The worst that happened was a bad flu every few years and I didn't give my well-being much thought beyond keeping up with exercise fairly regularly and relatively healthy food.

But I'm a different person now. I am not as comfortable in my skin, nor in my mind and I no longer trust my body. Too often a minor pain or twitch leaves me asking myself if it's cancer-related. I need to gird myself before checking each new set of test results online.

When I'm tired toward the end of each day – which is still much earlier in the afternoon than before all this happened - my thoughts turn dark. My more rational self tells me to let it go, just live, enjoy this extra time I've been given and I'm usually able to do that. Until next time, and then I start over.

I don't yet understand the consequences of the changes that have come over me. So much of this year has been – and still is - taken up with the busy-ness of having – or, having had - a terrible disease that there is not always time for usual tasks, let alone complex reflection.

But now that I am better, maybe I can devote some thought to how I am different and what, if anything, it means.

You're reading all this today because so many of you have been here throughout this long, strange trip and because today is a milestone, an anniversary of consequence in my life.

Before writing today's post, I re-read every “cancer post” I've written along with every comment from you, dear readers. You, collectively, have been my daily rock with your constant and continuing support, encouragement and kind responses.

I thank you from the bottom of my heart.

Now, on to the second anniversary.

* * *

Here is latest episode of The Alex and Ronni Show.

If you would like to see Alex's entire two-hour show with other guests after me, you can do that at Facebook or Gabnet on Facebook or on YouTube.




A Newly Uncertain Life

Any of you who have been hanging out here, even irregularly, over the past nine months knows that last June I was given one damned, big deal, scary medical diagnosis: pancreatic cancer.

So few people can even be treated for it that survival is almost a fantasy. From time to time over my life, I had wondered what it feels like to be handed a death sentence - particularly so when my parents, several years apart, were each given such news.

When my turn arrived, I still didn't know how it feels. Unreal? Like a mistake had been made? Why don't I feel sick? In the ensuing days, there were undercurrents of fear but mostly, my imagination failed me.

Is it, do you suppose, that we are incapable of imagining our own deaths? Or more to the point, imagining not being here in this world any longer? I have no idea about that.

In the months since then, my body has healed from the extensive surgery, I've gotten through the followup chemotherapy and in an announcement as momentous as the original diagnosis, a month ago, the doctors told me I am cancer free. “Go and live your life,” my surgeon said.

And so I have. Happily. But it is not the life I had before.

There is a shadow now that follows me around. I sense it right behind me, leaning up against me. It is not painful, it doesn't get in my way of moving around and doing what I want and it's not there all the time. Just often enough to be a reminder that I am no longer the healthy woman I was once lucky enough to be.

What I have come to see is that the shadow is a tentativeness, an uncertainty. And it didn't help when the oncologist said the other day that she is adding a “tumor marker” to the list of blood tests I regularly undergo.

Don't get me wrong. The shadow, reinforced now with my knowledge of the tumor marker, is not debilitating and I am certainly not sad or distressed or gloomy. But it does have an effect almost daily. I don't mean to make more of this than is there but it is a regular reminder than the cancer might recur - in my pancreas again or somewhere else.

Or it might not. But I don't seem to be able to ignore the possibility and I sure would like to. Isn't there an old saying about not buying trouble?

All of you were so wonderfully supportive during my surgical recovery and following treatment.

As so many of you mentioned about others' comments here, it helped me a lot to know what you have gone through and how you have handled your own serious health issues. Now I wonder if you can help again.

Do you understand what I'm trying to explain about the shadow? Have you experienced it? Did you want to set it aside as much as I do and enjoy the time you have been granted free of care and concern?

If so, how did you make peace with that shadow of uncertainty?




When You are Well Again

”...the thing is, once something goes wrong, forever after you know that something CAN go wrong. Up until then, we're all blessed with kind of an ignorant sense of invincibility...

“None of us know what's going to hit us out of the blue, or when, but once we get winged by something, I think, we are all a little bit more fearful...

“The passage of time helps, and with enough time, we regain some of that feeling of invincibility.

Think of today's post as an extension, a follow-up to Wednesday's which was little more than a jump-start for the many thoughtful, useful and inspiring reader comments about what comes after recovery from a serious disease.

The quotation above is one of them, left by TGB reader Patty-in-New-York who nailed my pre-cancer sense of invincibility. Until that diagnosis last June, I thought I understood what it is like to face a life-threatening illness.

Wrong. I didn't have a clue.

The long weeks of recovery from surgery taught me about disability. About giving over my independence to the kind people who helped me during that time with the everyday, ordinary necessities of living. About constraints on the physical things I could do. And about how those new limitations gave me a smaller world view than I had before or want to have.

Isn't it interesting how, when the doctor hands you a terrible diagnosis or an outside force, an accident for example, leaves you with a broken hip or worse, you are plunged into the world of the sick in no more than a minute, but it can take weeks and months after you have healed to recover your place in the world of the healthy.

Or, as Patty-in-New-York suggests, you arrive at a different kind of normal. I doubt I will ever feel invincible again but since I wrote Wednesday's post (on Tuesday), I received an unexpected boost toward whatever my new normal will be.

On Wednesday morning, I met with the surgeon who performed the Whipple Procedure on me in June. As regular readers know, on Monday this week, a CT scan had matched earlier blood tests in showing my body to be clean of cancer.

A good-sized part of me had never expected that and as I mentioned on Wednesday, I wanted to celebrate but somehow wasn't feeling it. That changed when the surgeon told me in person, face-to-face, that there is no cancer, “Go live your life,” he said.

Although I didn't know it until that moment, it was important to me to hear that sentence out loud, not in a written scan analysis. To be reminded again that the remarkable doctor who, with his great knowledge of pancreatic cancer and his excellent surgical team, spent 12 hours on his feet last June, 12 hours that saved my life.

After meeting with him, I wept and I rejoiced and I had lunch with a friend and then I went home and celebrated by dancing to Joe Cocker singing live in a 1992 concert, Cry Me a River.

It will take a little more time but now I know I'm going to be just fine.




Cancer and an Altered Self-Image

We don't much think about – or, perhaps, it is I who has not done so – who we are. What descriptions we have of ourselves accumulate, I think, over our lifetimes and we hardly notice it happening: doctor, lawyer, Indian chief, mother, father, brother, sister, fat, skinny, young, old, married, single and so on.

For example, since in the United States we mostly identify ourselves with what we are paid money to do, I am a former radio producer, TV producer, internet news managing editor, New Yorker morphed now into a retiree who blogs about what it's like to be old and who, way near the top of the list, thinks of herself as healthy.

No more. Last June, “cancer patient” was added to my list of personal descriptors, something I see in retrospect was an easier change to make than I would have thought.

All it takes is a massive surgery and lengthy recovery period accompanied by pain, pills and doctor visits to self-identify as a sick person Or, at minimum, no longer healthy.

I didn't see it coming, didn't even notice, consciously, that the switch had happened until this week. One way I suspect that happens is the medical checklist.

When you have a serious ongoing disease, you are asked to fill out a lot of forms. They are mostly identical and involve checking yes or no on long, long lists of diseases, conditions and symptoms. I've checked off no in all of them all my life. And then eight months ago, I had to check yes on cancer.

I was not healthy anymore. As I may have related to you in the past, a more light-hearted take on the issue was spoken by my primary care physician: “Ronni,” he said, “except for the cancer, you're very healthy.”

Riiiiight – and other than that, Mrs. Lincoln, how did you enjoy the play. That doctor and I have had several good laughs about his bon mot gone awry.

Who we are in our minds, in our bones, affects how we understand ourselves, present ourselves to the world and informs many of the choices we make. Cancer patient is not what I want to be part of my self-image but it happened.

Then, this week, another change took place. On Monday, I had a CT scan, a more definitive test for cancer cells than the test I told you about a couple of weeks ago. Like that first test, this one came back with the best news any cancer patient can hope for:

“CT looks good,” wrote my medical oncologist in her test results analysis. “There is no sign of the cancer at this time.”

That's two tests two weeks apart with the same great, good news. Only a tiny minority of pancreatic cancer patients get this far so I should be ecstatic.

How come I'm not, then?

Intellectually, I'm over the moon but the the thought lacks the emotional joy I expected, the urge to dance around the house, for example, to Joe Cocker's Cry Me a River at full volume.

Instead, even if I am not shrugging off the news, my mind slipped straight into anticipation of the apprehension I felt this time as I waited for the test results that will be repeated every four months or so when they continue to check for cancer. What is the matter with me?

Here's what I think happened:

That added definition of sickly person crept up on me so quietly I hardly noticed it these past months. Even as I have felt increasingly better physically, the daily pills, the chemo treatments, the blood tests, the transfusions along with the many doctors, nurses and other healthcare providers all became silent markers of my new status which I internalized without any thought, made part of my self-image.

While I wasn't paying attention, I became a different person than I have known for my 76 years, someone identified by a terrible disease, and I suspect I am not alone in this phenomenon.

Major life events, good and bad, are stressors that can alter our self-image. There is even a scale for it called the Holmes-Rahe Life Stress Inventory on which my recent life event, “Major personal injury or illness,” is listed at number six out of 43 items.

Since Monday when I received the good test news and recognized that I wasn't feeling like a kid on Christmas morning, I realized I need another change in self-image – from sickly to healthy again or, perhaps, in the more familiar vernacular of the cancer world, survivor.

It may take awhile to make the switch back, but at least I am doing it consciously this time instead of it sneaking up on me while I wasn't paying attention.

Does this resonate with you? Have major life events changed your sense of yourself? For better or worse?




Great Big Fat Good News About Cancer

At first, I wrote this post with a long and winding introduction to the news – this great big fat good news - but that doesn't seem fair so I'm redoing it and adding what had been intro material as an addendum below. Here is the news:

On Friday, my Whipple Procedure surgeon said that the many tests given during my hospital stay 10 days ago showed – and I quote - “no current evidence of cancer”.

Just for fun, let's repeat that: no current evidence of cancer. Isn't that amazing.

One of the surgeon's nurses who I've come to know a bit relayed his statement to me via phone message and added, “so go celebrate.”

I started with a good cry. When I tapped the phone off, the tears just flowed on their own. There turns out to be a nice symmetry too: the day after this overwhelming and unexpected news was given to me – that is, 20 January – was the seven-month anniversary of the Whipple surgery last June.

This definitely is a grace – defined by Christians as an unearned, unmerited, undeserved favor from god. If like me, god is a tricky concept for you, think of it as the same kind of gift but from the universe.

It is a grace because it's a big deal and I certainly did nothing to cause it. The doctors and nurses and other healthcare people at OHSU did all the work – the surgery, help with recovery, chemotherapy, hand-holding, question answering, etc.

All I did was follow their instructions to the best of my ability.

And then there are all of you – the wonderful TGB readers who every day have left encouraging notes, stories, prayers and thoughts. Can anyone prove they don't work? I can't, and they helped keep me going especially on the most difficult days.

Friends and neighbors belong on this list too – the people who have served as chauffeurs to and from the doctors, shoppers before I could drive again after the surgery, cat care when I couldn't bend to clean the litter box, among so much more including unending moral support.

Thank you seems too puny but it is deeply heartfelt.

Even with this great good news, however, there is more medical stuff to come. As I mentioned last Monday, I have a small, internal bleed that, if it does not heal on its own, will require surgery which will be extensive enough to result in a recovery period almost as difficult as the Whipple. What helps make it tolerable for me is that it is a mechanical problem – sort of a loose connection – unrelated to pancreatic cancer.

The decision about the surgery will be made in early February.

Unfortunately, I can't just relegate this bout of cancer to a minor interruption in life and get on with everything else. Tests will be needed every few months for as long as I live to check for any recurrence or new cancer. Too bad about that but after these past seven months, I'm pretty sure I can manage it without too much anxiety.

As the old song says, “whatever will be, will be,” but for today, let's imagine I've shipped off a bottle of champagne to every one of you and together let's toast the universe, its occasional gifts and my incredible, great, good luck.

Champagne

Thank you all so much for helping me through this ordeal. You are the best.




Encouraging News: U.S. Cancer Death Rate Has Dropped. Again.

Here's something I didn't know about cancer and I'll bet you didn't know either until now:

”...the lifetime probability of being diagnosed with the disease is slightly higher for men than for women, with adult height accounting for about a third of the difference. Studies have shown that taller people have a greater risk of cancer.

Hmmph. Being only 5 feet, two inches tall didn't help me.

It's still a great little factoid to have and it is from a story in the Washington Post about the annual report from the American Cancer Society - this year titled Cancer Facts and Figures 2018.

You're probably not surprised to know that since I was diagnosed with pancreatic cancer last June, I've become more interested in cancer generally so I've been looking at news stories more carefully.

The disease, in its many forms, has been frustratingly difficult to treat, let alone cure – physicians have been trying to do so since at least 2500 BC. In the four-plus millennia that have followed, science has been able to reduce the incidences of many childhood diseases, of tuberculosis and of small pox, for example, to almost none.

But cancer, the number two killer in the United States, continues to be intractable.

Even so and as excruciatingly slow as it is, there has been positive change. The Post again:

”Overall, the cancer death rate has dropped from 215.1 per 100,000 population in 1991 to 158.6 per 100,000 in 2015.

“The nation's overall cancer death rate declined 1.7 percent in 2015, the latest indication of steady, long-term progress against the disease, according to a new report by the American Cancer Society.

“Over nearly a quarter-century, the mortality rate has fallen 26 percent, resulting in almost 2.4 million fewer deaths than if peak rates had continued...

“Even so, an estimated 609,000 people are expected to die of the ailment this year, while 1.74 million will be diagnosed with it.

Here is a chart of the number deaths from certain cancers expected during 2018:

CancerDeathsChart

After heart disease, cancer is the second leading cause of death overall in the U.S. but there are disparities of varying degrees among racial and age groups. As the Post notes, the 2015 mortality rate was 14 percent higher in blacks than white, but was 33 percent at its peak in 1993. However,

”...that trend masks significant disparities among age groups. Among people 65 and older, the death rate for blacks was 7 percent higher than for whites, a smaller disparity that likely reflects the effects of Medicare's universal health-care access.

“Among Americans younger than 65, the mortality rate was almost a third higher among blacks than whites — with even larger disparities in many states.”

Eventually, cancer affects just about everyone in the United States. Forty percent of Americans will, in their lifetimes, be diagnosed with one form of the disease or another making it almost impossible for anyone but a hermit to not have a relative, friend or neighbor who is afflicted.

In my case, both my parents died of cancer – breast and liver for my mother; liver and pancreatic for my father. Although I'm grateful to have been extraordinarily healthy throughout my 76 years until the diagnosis, it's hard to see how I could escape the family fate especially since I smoked for many years.

When I underwent a simultaneous endoscopy and colonoscopy last week to determine the details of an internal bleed, I was asked – as I had been just prior to my Whipple surgery in June – to give permission for the doctors to remove some small pieces of tissue for study.

Of course, I agreed both times. It's the least I can do to help researchers coax this “emperor of all maladies” to give up its horrible secrets.

The full report from the American Cancer Society, Cancer Facts and Figures 2018, is available here.




Cancer Treatment: It's Always Something (and a Book Giveaway)

In a repeat from last November, I appeared at the clinic for my Wednesday chemotherapy infusion last week but when the usual blood tests came back, my red cell count was too low for treatment.

The infusion was canceled and like last time, the tram took me from the waterfront campus to the OHSU hospital up on the hill for an overnight transfusion of blood. Two units this time instead of four.

And because I now have an internal bleed, a whole lot of tests:

  • Repeated vitals: blood pressure, temperature, heart rate

  • The usual bloodlettings for the lab

  • EKG

  • X-ray

  • rectal exam

  • combined colonoscopy (including the infamous prep)/endoscopy

There were probably other tests I've overlooked. Later, to help combat the anemia, an infusion of liquid iron which, the doctor informed me, looks pretty much like motor oil – and so it does.

I've been home since Friday evening, mostly sleeping due to the truth of the old hospital joke about it being nowhere to get any rest.

As I've mentioned here before, the staff at every level at OHSU is excellent. This time there were more doctors than in the past – maybe eight or ten or more - each with his/her area of expertise in regard to the internal bleed that needs to be dealt with.

All of them and the nurses, the CNAs and everyone else who attends to patients, are smart, knowledgeable in their areas of expertise, kind, caring and just plain nice people.

Next steps are that this week, I have a bunch of medical appointments to see what the decisions or choices may be.

Meanwhile, I have some new medications to take and what an awkward schedule they require. There is one I must take an hour before each meal, another to take 30 minutes before breakfast and dinner but not lunch, a couple that cannot be taken in combination with certain others and so on.

I'm working off a brand-new, home-made chart to keep it all straight.

Remember way back when I said I would not allow myself to become a professional patient? What a crock. The pill schedule alone ensures that I need to be aware of time and medications all day every day.

The doctors tell me the bleed, small that it is, is at the site of a connection between hoses (or whatever other body part) made during the Whipple precedure in June. If my interpretation is correct this is, essentially, a mechanical problem not a cancer issue. I'll know more later this week.

This all came out of nowhere for me. You see, I thought for the time-being, my job was, to the degree possible, to withstand the side effects of chemo until it was done in March.

I didn't count on an all new, out-of-the-blue medical event. There is not much difference at my end (as opposed to the doctors') between this and being hit by a truck in terms of how it interrupts my life.

But that thought also is a reminder that to extent possible, I must go on living as I choose. I can complain about the pill schedule, about being tired too much, about additional medical appointments and about the next unexpected medical intrusion but there is no point in letting them take over my life completely. That would be a terrible mistake.

As far as I know, pancreatic cancer is random. It might have been you, but this time it's me and there is no point in being miserable about something I can't change. Just live. And laugh. And make the best of what I have.

I know that sounds like I've gone all Pollyanna on you but is there another choice? I don't think so.

* * *

About two weeks ago here, I told you about a book of essays, No Time to Spare, by Ursula K. Le Guin. A few days later, TGB reader Lynn Lawrence emailed to ask for my snailmail address to send me a book.

NoTimeToSpare225It arrived within a couple of days - the Le Guin book. Lynn had missed my posting about it but had read an excerpt somewhere else and thought it was perfect for me. So we decided together via email, that I would offer another book giveaway – just one this time and do thank Lynn for it if you win..

We'll do it the same way as always with giveaways here:

Just tell me in the comments below that, “Yes, I want to win the book.” Or, you could say, “Me, me, me.” or anything else that indicates your interest.

The winner (you can live in any country) is selected by an online random number generator and I will have your email addresses from the comment form. I will then email the winner to get your snailmail addresses to send off the book.

The contest will remain open through 12 midnight Pacific Time on Tuesday 16 January 2018, and the winner will be announced on Friday morning's regular post, 19 January 2018.




Sorry: No Interesting Stuff Today

It's Friday evening as I write this and I'm just now home from the two nights in the hospital. Cancer related, of course.

It was due to a repeat performance of November when I had extremely low red blood cell count. This time, more blood transfusions, plus an internal bleed that involved the necessity of a couple of procedures to figure out where it is and the cause.

I'll explain more next week but now I just need to go to bed. As I'm sure any of you who have been there know that there is no such thing as sleep in a hospital.

One thing for Celia Andrews and Yvonne Behrens-Waldbaum who each won a copy of Malcolm Nance's book: Yvonne blogs at Aging Us.

I didn't get the books in the mail before going to the hospital and probably won't get to the post office until early next week but I'll mail them as soon as possible.

There is so much email piled up that I may not be able to respond to it all. My apologies but there is only so much time in life. Thank you for your patience. I'm fine and be back to my usual self on the blog by Monday.




Early January Cancer Update

When I began chemotherapy in September, six months of treatment sounded like an eternity, not something I needed to think about for a long time.

Instead, I reasoned, just show up once a week for the infusion, take the oral chemo at home daily as prescribed and find out in March 2018 what good, if any, it had done.

Like some other new experiences I have encountered since the June diagnosis of pancreatic cancer, things are not necessarily as easy or as obvious as they were BD (before diagnosis).

First, there was no forgetting. During the day or two leading up to each weekly visit to the chemo clinic, the questions rolled around in my head: Is this working? What will be the outcome in March? Is pancreatic cancer painful toward the end? Will I still be here at the end of 2018? Or not? And so on.

Generally, I have been able to, as they say, hold my shit together when I am with other people. Alone, however, I've been known to pull off the road or street I'm driving on to wipe away the tears at my unknown future.

According to different sources, between five and nine percent of people diagnosed with pancreatic cancer are still alive five years later.

(I am not unaware that at my age, 76, I could be dead of all sorts of other things by 2022, but pancreatic adenocarcinoma – the type I and about 85 percent of all pancreatic patients have – is one of the top four or five deadliest cancers so I cannot go around fooling myself about my predicament.)

But there have been questions I haven't asked, places I have not wanted to go or, more truthfully, have not be able to make myself face. One of those, through these three months of chemo so far, is to ask what is the range of possible outcomes from the surgery and now, chemo?

What is there, I have wondered between “Congratulations, no detectible cancer” and “Sorry, it didn't work”? I have not been able to say those words yet.

Until Wednesday this week.

It wasn't on my written list of topics for the medical oncologist. It just popped out toward the end after she had given my other four or five questions positive reponses.

As I felt tears welling up, I also managed to mention that I have a growing terror of what she will tell me in March, and I had only half jokingly been considering asking to keep up the weekly chemo sessions into an indefinite future so the question would never come up.

But my mouth had got ahead my fear and there was the question floating in large letters in the air between us.

The doctor repeated what she said a few minutes earlier, that even with my huge drop in red blood cells last month requiring an overnight stay in hospital to transfuse four units of blood, I am doing well with the treatment.

She believes, she said, based on knowledge and clinical experience, that there is an 85-to-90 percent chance of not finding detectible cancer in March.

Then my tears broke through. Tears of relief.

One of the things they don't teach you in life is what to do when, for example, you are presented with a terrible diagnosis and death looms. After many months of suffering uncomfortable sitting, I finally decided a few weeks ago to buy a new desk chair. But then, wondered I, what difference does it make if I'm not going to live much longer.

I wavered for a few weeks – go head and buy. No, don't bother. But my neck hurt at the end of each day at the desk so I reluctantly bought the chair.

Yesterday morning, after having slept happily on the doctor's prediction, I easily bought a pair of silk pants I've been putting off for months for the same reason as the desk chair. Now I know differently: so what if I die before wearing them more than once; it's not like the price broke my bank.

Yes, I know. Statistics cannot reveal individual outcome, and even the best professionals' predictions can be wrong for all kinds of reasons.

Nevertheless, I was cheered by her answer and more importantly, understood finally that I must go on living - in all ways - until I can't any more from whatever cause, and if that means a new pair of white silk pants, go for it.

After my meeting with the doctor, as the nurse was preparing my infusion, she told me the story of another patient, a man in his 70s, who was in the chemo clinic for treatment of lung cancer.

He told her that 10 years previously he had been successfully treated for melanoma and that 35 years ago he had had the Whipple Procedure. The nurse told me she couldn't figure out if he was lucky or incredibly unlucky.

To me, however, the man's 35-year-old Whipple is what stuck in my mind. I wonder if, even through fear and tears, we are all supreme optimists until the very end.

It was a magnificently clear day Wednesday so I could see Mt. Hood out the windows of my treatment room. That doesn't happen much in winter so I took it as an omen. Whether of good fortune or the black cat variety, we'll need to wait until March.

Mt.Hood2018_01_03fromChemoClinic




Existentialism of Pancreatic Cancer

It is not difficult to understand that a diagnosis of cancer – in my case, pancreatic – might produce an existential crisis or, at least, a renewed look at what you have supposed these many years is the meaning of your life, and of the choices you have made.

This struck me with force last week when one of my physicians suggested I take an antidepressant.

The doctor's idea was not without cause. It's not going too far to say that for several days I had found myself mired in a slough of despond, trying to wade through a bunch of negative thoughts that bubbled up unbidden.

The worst was the notion of my unprovable belief that the chemotherapy is not working. So what is the point, thought I, of struggling through it. I also spent some time wondering such things as how incapacitated I might become if/when the disease progresses and I tried out various scenarios of how I would die and...

Well, you get the idea.

The doctor recommended sertaline, generic Zoloft, that he said would help lift the evident depression I was experiencing. I told him I'd do some homework, think about it and get back to him.

It is not an easy drug. As all the reputable medical websites explain, it is used to treat depression, obsessive-compulsive disorder, panic disorder, anxiety disorders, post-traumatic stress disorder (PTSD), and premenstrual dysphoric disorder (PMDD).

The many potential side effects cannot be dismissed without serious consideration:

⚫ Skin rash or hives (with or without fever or joint pain); difficulty breathing; swelling of your face, lips, tongue, or throat require emergency attention.

⚫ Such symptoms as anxiety, panic attacks, trouble sleeping, or if you feel impulsive, irritable, agitated, hostile, aggressive, restless, hyperactive (mentally or physically), more depressed, or have thoughts about suicide or hurting yourself should be reported to one's physician right away.

⚫ Not to mention agitation, hallucinations, fever, sweating, shivering, fast heart rate, muscle stiffness, twitching, loss of coordination, nausea, vomiting, or diarrhea.

There are worse. I will spare you.

The thing about moods, I have noticed in my going-on eight decades, is that they change. Sometimes for obvious reasons, sometimes not so clear.

Mood is closely related to happiness or lack thereof and there have been a lot of books and magazine articles in the past few years about how to achieve happiness. My point of view has always been that one cannot know happiness and probably not even just a buoyant mood without having experienced negative feelings.

Happiness is not a goal in my world, it is a byproduct. The feeling arises when I've been doing something pleasurable or fulfilling or achieved something I have worked hard for.

Happiness cannot be forced any more than depression can be. To me, they are opposite sides of the same coin and I have often welcomed unhappiness or depression or melancholy because those feelings are as crucial to understanding one's self and one's world as discovering what gives you pleasure, i.e. happiness or contentment.

And so I do not want a false or drugged happiness. Especially with the possibility of those side effects; I already live with the same or similar ones from the chemotherapy.

For many years before I was confronted six months ago with the reality of an immanent death sentence, I have always thought – and still do - that I want to be lucid when I die and not in pain. I want to experience the process with as much attention and clarity as possible - the last great adventure of earthly life.

Only half joking, my plan had been to live as long as my great Aunt Edith did (89) or her sister, my grandmother, 92. That's probably not a good bet now. But that doesn't change what I have always intended in the waning years of my life, particularly, the final weeks and months:

I want to feel all the emotions that go with the winding down, that go with knowing that death is no longer theoretical. I want to watch myself make peace – if that is what happens, or not - with existence as I experienced it, with its ending and with the single event that equalizes us all.

No matter how it feels to go through that final phase of life, I want to be certain they are my feelings and not imposed by a drug.




Six Months Into Cancer Treatment

It's been six months now, half a year since they told me I have pancreatic cancer. I've recovered from the huge Whipple Procedure surgery, made peace with the medications I need to take for the rest of life and am enduring chemotherapy which continues until March.

image

One of the things I mentioned in early notes here about this cancer is that I would not allow myself to become a professional patient. Oh, please – was I really that naive? My every day now is ordered by the needs of the disease.

MEDICATIONS
Most obvious are the meds. I count them out once a week into one of those little plastic containers divided into AM and PM. But that's not the full story. There is one pill I must take for before every meal, every snack, essentially every time I want to put even a bite of food or cookie or a piece of candy in my mouth. Hard to remember sometimes.

Two others that are each prescribed for morning and for evening cannot be taken together. And of course, these and all the others never need refills all the same time. It's an ongoing daily chore to be sure each med is being taken correctly at its time of day with the proper accoutrement. I screw up now and then even with a chart taped to a kitchen cabinet.

MEAL PLANNING
Because part of my stomach was removed in the Whipple Procedure, I now eat several small meals a day. It takes a lot of planning, shopping, organizing before I even get around to cooking and I'm still learning that I cannot eat nearly as much as I once did at a single meal.

I think about food a lot – what to have for the mid-morning snack (don't forget the pill), the need to prep vegetables for the lunch-time meal, the midday snack (don't forget that pill). And clean up the kitchen after each meal.

None of this is nearly as much fun as having regular three meals a day that I used to enjoy cooking. Not so much now.

CHEMO SIDE-EFFECT PREVENTION
There are all kinds of potential side effects that come with the territory of chemotherapy. Fatigue is the most common affliction but the list is way longer than that, although no one gets all of them.

So I rinse my mouth several times a day to prevent sores there. I rub a special cream into my feet and hands four times a day in hope of preventing a really gruesome side effect.

To help prevent infection due to what is called a “compromised immune system” during chemo, I always use medical gloves to clean Ollie the cat's litter box twice a day and I wash my hands constantly which, of course, requires more lotion after each washing.

At my monthly meeting with the oncologist yesterday, the oral chemo pills of which I have been taking two twice a day since the infusion chemo began was removed from my regimen. It caused the sudden, dramatic drop in my red cell count that required four units of blood a couple of weeks ago. It also has contributed to the ongoing anemia.

These are much more serious than the hand-and-foot syndrome that the same oral chemo probably helped cause to turn up in the past few weeks. Fortunately, it's not progressed to that gruesome effect So if all goes during December as the doctors expect, I'll be relieved of these difficulties.

The downside is that European studies over several years have shown that combining this oral chemo with the kind of infusion I get weekly extends three-year survival rate of pancreatic Whipple and chemo patients by about 15 percent to 70 or so percent.

But the doctors believe that the extraordinarily sudden drop in red blood cells is serious enough that preventing it happening again is crucial and this move should do that. I have gone along with them.

MANAGING FATIGUE
When I remember to use the tincture of cannabis, I sleep much better – “better” meaning longer than three hours. Even up to seven sometimes and then the fatigue, which builds during the three weeks of chemo before a week off, is more manageable.

MEDICAL APPOINTMENTS
Interspersed with all the daily cancer responsibilities are chemo infusion appointments, occasional tests doctors want, check-in with my primary care physician every few weeks not to mention surprises like the overnight hospital stay for the recent blood transfusions and endoscopy (which came out clean).

How come no one told me how futile it is, with a cancer diagnosis, to try not to become a professional patient? There are so many different things to do and to keep track of to treat this insidious enemy, it is a full-time job.

I try to get through these chores each day without thinking about the big, fat, ugly reason for them. I save that for when I'm worn out toward the end of the day – or, rather, that's when the thoughts none of us ever want to have erupt on their own. A few:

Will I be here at this time next year?
What will the prognosis be when chemotherapy ends?
What if the chemo doesn't work?
How will I die?
Do these negative thoughts affect how well treatment works?

And so on.

It's not always that bad. Sometimes I feel a close-to-joyful acceptance of what I believe is the natural and normal order of life: "Earth to earth, ashes to ashes, dust to dust.”

Just not yet, please. I still have a few things I want to do.

From the first day after diagnosis and for reasons I don't know, I abandoned my usual head-long, deep dive into research when something new happens. In this case, I have limited myself to just the basics of pancreatic cancer and its treatment but few details and no research studies.

Instead, I rely on the doctors, nurses and other healthcare professionals at OHSU who have been dealing with this disease and treatment plan to answer my questions and I do my best to follow what they advise and prescribe.

I know how lucky I am to have been eligible for the Whipple Procedure. When the surgeon first described it to me six months ago, I asked what would happen if I rejected it (it was as awful in his description as it is for real). “You'll be dead by the end of the year,” the surgeon said.

That certainly focuses one's attention. I did the surgery and I'm still here at the end of the year. But mostly I am both too busy with daily maintenance and personally indisposed to see this as a “battle” against cancer - unless the fight consists in this now-professional patient keeping track of all the cancer chores.

Which, apparently, leaves it to you and others to “battle” the cancer, to stay positive for me which you are doing in abundant numbers according to your comments and emails. And don't think that I am not impossibly grateful to you all.



The Amateur Cancer Patient

Aside from a flu now and then, and a mystery illness 40 years ago that was never diagnosed but involved 11 days in hospital, I have never had a serious disease or condition until now.

Throughout my adult years, when I felt sickly or was overly tired there was a reason: too little sleep, too much to drink (when I was young and stupid), too many social evenings back to back. In regard to the last one, I've always had a rule to not be out and about two nights in a row, but that wasn't always possible to keep.

Things are different nowadays. The evening schedule is easy to keep without as many social obligations as when I was working and I have hardly had a bad day in these 12 or 13 years since I retired.

That is, if you don't count a couple of colds. In my old age, a cold feels as bad as a flu did in my younger years and have required bed rest. But I haven't had one if five or six or more years.

Generally, I'm amazed at how good I feel – in fact, enough so to fantasize now and then that someone has made a terrible mistake and I don't have cancer. Of course, that's not true but my sense of it reinforces the point that until now I had no idea one can have a frightening disease and feel normally healthy.

But now I cannot count on that every day.

On Tuesday, I had a 9AM appointment for an interview with a local reporter. I'm at my best both physically and mentally early in the day. I'd had a restful night's sleep and should have felt as good as I do on my best days. But my ass was dragging and all I really wanted to do was go back to bed.

Why should be this be? Chemotherapy might be a reason: in addition to the infusions I undergo each week, I take oral chemo pills twice a day and this week was at the end of the 21 day cycle before a week off.

That's a guess although the nurses told me early on that fatigue would probably become a problem during the six months of chemo treatment and would increase as time passed. But aside from the short period of low red blood cell count a couple of weeks ago, I hadn't noticed.

Maybe the cancer itself causes me to be tired although I like to think that the chemo treatments are killing off those bad cells.

Or perhaps it's how busy having such a big-deal disease keeps me (which I wrote about here). And the daily cancer chores seem to increase as time passes – one of them being more nap time because the chores wear me down.

The fact is, I'm not just an amateur at cancer treatment, I'm also an amateur at anything less than good health, and not feeling entirely well is a new experience I have not integrated into my life yet.

I've always been able to count on feeling good enough to do whatever I have planned or comes up on a given day. No more. Learning has been my most trusted life-long companion – always a joy. What I hadn't counted was the need to learn some not-so-joyful lessons.



The Life of a Bear (and an Old Woman)

One of my oldest blog friends, Darlene Costner, sent this clip a couple of weeks ago. It is from a 1988 French film, The Bear (L'Ours), written by Gerard Brach from James Oliver Curwood's novel and directed by Jean-Jacques Annaud.

In the movie, an orphaned bear cub bonds with an adult male bear as they help one another avoid human hunters and other predators. Here is the scene:

Since I last mentioned my pancreatic cancer in these pages, I've been plagued with a mild version of a chemotherapy side effect known as hand-and-foot syndrome and tomorrow will undergo a short, minor surgery, an endoscopy to check for any internal bleeding.

In these circumstances, the film clip spoke to me more personally than it might have done a few months ago, the relentless mountain lion being my disease incarnate and the baby bear, me.

Within a few days of receiving the film clip from Darlene, another TGB reader, Marian Methner, sent a poem by Native American novelist, poet and Pulitzer Prize winner, N. Scott Momaday.

It is titled To an Aged Bear. Reading it, particularly after watching the clip of the cub and his adult companion, I felt like the old bear of the poem. And right now, at this moment in my life, that is a good thing:

Hold hard this infirmity.
It defines you. You are old.

Now fix yourself in summer,
In thickets of ripe berries,

And venture toward the ridge
Where you were born. Await there

The setting sun. Be alive
To that old conflagration

One more time. Mortality
Is your shadow and your shade.

Translate yourself to spirit;
Be present on your journey.

Keep to the trees and waters.
Be the singing of the soil.




A Cancer Surprise

Thank you all for your concern and suggestions on Wednesday's post about my fatigue. I wrote that post late on Tuesday anticipating my regular chemo session the next afternoon. It did not go exactly as planned.

First, you would not be wrong to say that I underplayed my fatigue in Wednesday's story. For two or three days I had been unable to walk from the bedroom to the kitchen, a distance of about 20 feet, without stopping halfway to catch my breath, nor could I carry the trash to the bin or do much of anything else that involved walking even on flat surfaces.

In addition, I had noticed for several days that my face had a white, almost waxy look. Dead might be an apt description - no pinkness at all.

Usually, the chemo clinic staff draws my blood, sends it off to the lab to analyze and prepare my infusion and then we get on with it. This time, they drew blood a second time because my red blood cell count was so low they believed there must have been an error.

But no. The count was way below normal and further, way below the point where they would order a transfusion.

With hardly a how-de-doo, they canceled the chemo and checked me into the hospital. The upside of this is that I finally got a trip on the OHSU tram that travels between the campus down by the river where the chemo clinic is to the the campus up on the hill where the medical school and several hospitals are.

OHSUTram

I'm not crazy about heights like that but it was kind of fun too.

The downside to the hospital stay is that I spent the next 12 hours overnight plugged into a variety of sensors and, before it was over, received four units of blood. If you're new to this procedure – as I was – here's how it goes.

It takes about two hours to infuse one unit of blood after which the empty bag is disconnected and another attached. In between, the nurse stops by three or four times to check blood pressure, body temperature, pulse, etc.

You can see that sleep is not a priority to any of the medical staff but strangely, in those many short increments, I slept more deeply than I usually do and easily fell back asleep after each interruption.

In the morning, my red blood cell count was way up (I've forgotten numbers) and pronounced to be “great.” My face was a normal pinkish color again

This drop in red blood cells is caused by chemotherapy, it is not an uncommon occurrence and there are no promises that transfusions won't be necessary again. But I am sure happy to know it is something that doctors and nurses are accustomed to dealing with. For me, cancer treatment is scary enough; I sure don't want anything to happen that the caregivers are unfamiliar with.

I'm tired now (on Thursday afternoon) but not fatigued. I can walk normally without need to stop to catch my breath and I have developed a growing appreciation for all the things that can and might go wrong. Or, perhaps, go right.

NOTE: I returned home to somewhere between 300 or 400 emails and even after deleting the spam and unimportant detritus, I don't think I'll be able to respond to all of you who emailed. My apologies.



The Reality of Cancer Treatment Sets In

As I sit here at my desk tapping out this first sentence, I'd rather be curled up in bed. I don't necessarily need to sleep; I just want to lie down. I am deeply weary.

This is not an unexpected condition. Before I started chemotherapy, the experts at the hematology clinic within the Oregon Health & Sciences University where I am being treated for cancer told me this would happen.

Cancer, they explained, uses up energy – that is, calories – faster than a healthy body and so does chemotherapy, thereby supplying a double dose of fatigue which will increase cumulatively during the six months of my planned treatment.

In addition, tests at the clinic last week revealed that I am “severely” anemic (another not unexpected side effect of treatment). So another source of fatigue, and another pill in my cupboard to treat the anemia.

Now into my third round of chemo, I'm tired all the time. Tired when I wake in the morning, tired getting out of the shower, tired after cooking breakfast or dinner or any one of the other several meals a day I prepare to try to keep up my weight, and tired sometimes just being vertical.

If you ignore the horrible first four or five weeks of recovery from surgery after the Whipple procedure, until now I've been interested, even fascinated by this cancer, the treatment, the reaction of my body, the boundless concern and kindness of the staff who care for me, and the almost daily changes in my sensibility toward life and death.

Certainly it is not easy knowing you have one of the worst cancers. Only lung, colo-rectal and breast cancer kill more people each year than pancreatic cancer.

But it's not something I have dwelled upon much and I suspect, until I find out in March how successful or not this chemotherapy has been, the ranking of “my” cancer will remain of little interest to me.

This, I have noticed, is also true now of having cancer in general. It's no longer a novelty and I'm ready to move on.

Except, of course, I cannot.

As I have said in the past, I am grateful for how lucky I have been: that I was eligible for the surgery, that my chemo is only once a week and takes only an hour, that fatigue is the worst side effect I've faced.

It makes me feel like a wimp to be complaining while knowing other patients have a much harder time than I have had.

It's ironic this week that just as fatigue is becoming difficult to deal with, I have been freed from my the post-op restrictive diet to eat anything I want. Don't go hog wild, the nurses and doctors advise, but there is nothing I need to avoid now.

Yeah. Right. Nice. Except that the more elaborate cooking I enjoyed before this unwanted interruption to my life appeared last June is more than I can usually find the energy for now.

The doctors and nurses at OHSU tell me that depending on my blood work today, they may give me a blood transfusion which, among other things, will temper my fatigue if not entirely relieve it. Hmmmph. Who has ever hoped to need a transfusion. The ironies abound.

A long time ago, I read somewhere that house cats (and maybe wild cats too - I don't recall) sleep about 17 hours a day. That seems a good estimate for Ollie the cat's daily routine and now he's got a companion to keep him company during all those hours he snoozes.



Chemo Brain and Bravery

[To be clear, I want to assure you that I don't intend to turn Time Goes By into a cancer blog - I have plenty of other interests in regard to aging.

But for the two weeks I was stuck on that prehistoric laptop with the speed of a slug, I could not bear to spend more than an hour at a time on it so it was less irritating and easier to write from current experience than about anything that needs backgrounding and research.

At last, on Saturday afternoon, my computer was returned to me in pristine condition, all my files intact and with normal computer speed restored, thanks to an ace tech guru a friend found for me.

I'm now in the process of putting my files in order, catching up on the real work of Time Goes By and I expect to be back to full production by the end of this week.

Meanwhile, I know that during the computer hoo-haw, I missed answering a lot of reader email and lost some of it due to the hinky email program I had to use. So if you were expecting a reply and didn't get one, my apologies.
]

* * *

CHEMO BRAIN
For three or four or five weeks after my cancer surgery in June, I was stuck with what hospital personnel called “anesthesia brain” which can apply after especially long surgery – mine was 12 hours. It was frustrating.

Just putting simple sentences together took more effort that I often had. There was a small hiccup of time between someone saying something to me and my understanding of it. And ordinary kinds of focus were almost impossible, in general and particularly on reading as I inexplicably lost interest after a sentence or two.

After that first month, the fog lifted rather swiftly over one weekend and until recently, I didn't notice any of those symptoms again.

Now, apparently, I have intermittent “chemo brain” which is defined differently in different medical circles. One of the nurses at my chemo clinic seemed thoroughly familiar with the phenomenon and implied that it does not necessarily disappear when chemotherapy treatments are done. Oh joy.

The Mayo Clinic, on the other hand, reports that little is known about chemo brain and seems to say that it occurs in cancer survivors, which I am not (yet).

”Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

“Though chemo brain is a widely used term, it's misleading. It's unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors. Researchers are working to understand the memory changes that people with cancer experience.”

In my case, it appears during the three weeks I am “on chemo” when I can tell my thinking gets fuzzy, although it is not as debilitating as it was after my surgery. On the week off from chemo the brain fog gradually lifts and then I start the routine over again.

There is no byline to the Mayo Clinic story, just “Mayo Clinic Staff” which can mean anything and anyone so there is no way to make a judgment about it. There are a lot of unanswered questions in the realm of cancer.

BRAVERY
I want to talk a bit about cancer and bravery. Last week, on my post about how busy cancer keeps patients, a reader named Barbara who blogs at Frugal Juice - Life Begins at 70, commented that

”...you are teaching me to be brave as you are so brave to meet each day.”

Barbara is far from the first or only reader, in these months since I was diagnosed, to mention how brave I am. It is not possible for me to express how much your repeated encouragement, love, concern and caring means to me as I tackle this new and unexpected journey.

But brave? We've discussed what it is or is not in these pages in the past and it was clear then that there are many definitions.

This time I am not so interested in what it is in the dictionary or philosophical senses. I care more about why (however many are the ways I might personally define bravery) I don't believe the word, the idea, the intention apply in my current situation.

Was it brave to undergo a 12-hour surgery that has required months of recovery to feel almost normal again? When I asked the surgeon what would happen if I refused such a dreadful-sounding intrusion of my body, he said I would be dead by the end of the year.

That's not bravery, that's survival, the inbred imperative of all animals to avoid death at nearly all cost.

Some readers have attached the notion of bravery to my willingness to write about my cancer experience. Well, here's one secret about that: whatever I said at the top of this post about other interests in life, cancer does tend to take up a lot of space in one's mind often leaving little room for much else so you get these missives.

I write as much to winnow out some meaning and understanding for myself while trying to find some universal significance for readers. That is not bravery and it embarrasses me to be included in the category.

I'm a fairly simplistic thinker and the first thing that comes to mind about bravery is, for example, the soldier who rushes into a hail of bullets to save his buddy – the kind of person to whom we award the Congressional Medal of Honor.

Or, that person who stood in front of a convoy of government tanks in Tienamen Square during the protests of 1989.

Or a parent who runs into a burning building to rescue their child. You know what I mean, and I say that even understanding other, less dramatic but equally stunning forms of bravery.

What I have chosen to do in this circumstance, as I see it, is to endure. To persist. To persevere. For as long as that may be possible.

And if you don't count the annoyances I have given full voice to here, it's not really a big deal what I'm doing because, as I often ask myself (more rhetorically now than otherwise) is what else am I going to do? What else is there to do?

The only answer I have is: just what I'm doing. Just what I did before this with the addition of those damned annoyances.

Oh my, this got much longer than I intended. See what happens when you give me back my working computer. I'll stop now.



Cancer Keeps You Busy

Chores have been piling up and I'm getting behind so this is really a day off for me but I thought I'd make quick mention of a couple of cancer-related surprises. Some of you who have greater experience with this “emperor of all maladies” (or other kinds of maladies) of which I am still an amateur, may have more to say about them than I do yet.

[Emperor of All Maladies is the title of a brilliant book by Siddhartha Mukherjee subtitled, “A Biography of Cancer” which won the Pulitzer Prize in 2011.]

BUSY
Among all the scary new stuff I learned after they told me I have cancer is how much time it would steal from me. I don't mean the years by which it may shorten my life. I mean the list of new items added to the normal daily routine. Here's a short list:

Counting out pills each week and putting them in those little daily box containers. (It takes two containers to accommodate all my pills.)

Remembering to take those pills and at the right times of day. (I have invented half a dozen ruses to remind myself.)

Keeping track of when those prescriptions need refilling.

Preparing six meals a day, shopping for them, cleaning up after them.

Drinking what feels like gallons of liquid a day.

Keeping up with side-effect prevention measures: hand and foot lotion, mouth rinses, etc.

Napping. I've never been a napper but the chemo makes me sleepy so I lose two or three hours a day to naps.

WEIGHT LOSS
This one's a joke, right? I've spent my entire life repeatedly losing the same 10-12 pounds (not to mention the ginormous 40 pounds I allowed to pile on and lost six years ago. Now I have the reverse problem – keeping weight on.

They weigh me every time I go to the chemo clinic and during the three weeks a month I'm having infusions, I lose weight. They told me early on that the disease requires more energy than a healthy body and now I know that chemo increases the use of energy too. So I am regularly admonished to eat more, eat more, eat more by the nurses and doctor.

I hereby offer my apologies to all the skinny people I've privately mocked over the years for complaining about how hard it is to keep their weight up. They were right - it's really hard to do.