27 posts categorized "Cancer"

Random Cancer Thoughts

Pancreaticcancerawareness160left
Several people have mentioned via email and in comments in these pages on their own experiences with cancer, that theirs is a small thing compared to my pancreatic cancer.

Are you guys kidding? It says something about the state of the science in regard to almost all cancers that it is just about the scariest diagnosis anyone can get. Not that there aren't other diseases of age that are equally fraught but we are culturally conditioned to more or less freak out when cancer is mentioned.

I recall thinking when I was quite young, in my twenties I suppose, that I wouldn't need to worry about cancer because it mostly affects old people and by the time I got there, surely science would have learned how to prevent or cure it.

Yes. Well. It didn't work out that way. But I wonder if people of our age expected it to have been so because science was so successful in the 20th century creating vaccines for most of the diseases of childhood: measles, mumps, chicken pox, small pox, diphtheria, whooping cough, polio, etc.

That happened in our lifetimes and is an astonishing achievement – moreso for those of us old enough to remember quarantine signs on homes of neighbors afflicted with one of those diseases before the vaccine was created.

4-early-20th-century-quarantine-sign-everett

My point, however, is that no one's life-threatening disease is better or worse than another person's. Besides the disease and the (sometimes awful) treatment, we bring our personal histories to these frightening events, our hopes and fears, our spiritual beliefs or lack thereof.

All these and more affect how we face frightening events which therefore cannot, nor should not be compared one to another.

CHEMOTHERAPY AND SOCIAL WORKERS
A social worker connected with the clinic where I will receive my chemotherapy treatments telephoned to discuss what her department can do for me.

She said that they are there to help with just about any practical or emotional issues that come up – that over the years, they have seen pretty much everything from something as simple (to them) as arranging transportation to prescriptions, often anti-anxiety medications.

Until she mentioned that last item, I hadn't realized how important it is to me to feel what I feel and how adamant I am about it.

As I mentioned last week, I have good days and bad days but I see both as learning opportunities and it has been my experience throughout my life that almost always the bad times, painful as they can be, are more enlightening than good times, as enjoyable and important as the latter kind are.

POST-WHIPPLE PROCEDURE DIET
Healthy eating is deeply embedded in my daily life. Not that I don't indulge in ice cream now and then but generally, I eat mounds of vegetables and fruit along with fish, seafood and very occasionally, lamb – my favorite of the red meats; I don't miss the others.

Then, along came the Whipple Procedure during which they removed a good portion of my pancreas. Since then, my pancreas does not create enough of the enzymes that are required to digest food properly and I must take a pill to replace those enzymes with every meal.

As it turns out, that's the easy part.

Almost all vegetables – at least for the time being – are verboten for their high fiber content. I'm making sandwiches with white bread now, no whole grains allowed.

I'd been worried about the lack of green things in my diet until I discovered that certain lettuces, cucumbers and zucchini among a few others are low fiber although I need to peel the latter two to keep the fiber content as low as possible.

Most fruit is okay as long as they are peeled too, except, as a nurse noted to me, for grapes and cherries (in high season now and at their best) should be avoided because they are damned hard to peel.

Protein is important so that foods I ate sparingly in the past because of their high calorie count are now essential: peanut butter, cheeses, pasta – but the white kind, not whole grain.

A danger with cancer and the Whipple is weight loss so I am also encouraged to eat anything that is high in calories – ice cream is no longer a no-no but here's the rub: I'm hardly ever hungry and have to force feed every meal. By the time I get to dessert, two or three spoons of ice cream is all I can handle. (This from a woman who, until two months ago, believed a serving of ice cream is a pint.)

There is more but you get the idea.

My entire way of eating has been upended. It is more important right now to allow foods high in calories and avoid those that are hard to digest. I'm still learning how to cook this new way and have not ventured out to a restaurant yet.


My Introduction to Chemotherapy

Pancreaticcancerawareness160leftWhat interesting, useful and fruitful discussions you - TGB readers - have been carrying on in the comments of posts about my pancreatic cancer. Some of you have been-there-done-that with a variety of cancers and I appreciate your generosity in sharing your experiences – it enriches our understanding.

On Wednesday, I met with the medical oncologist and her team to talk about my upcoming chemo. I had been dreading the meeting since it was booked a few weeks ago.

Despite what you think from my written reports here, my upbeat, optimistic days run parallel with dark, pessimistic, even frightening ones that include horrible images that appear unbidden as I am falling asleep at night or for an afternoon nap.

My mood worsened in the days leading up to Wednesday's meeting with memories of how chemo sickened my father and wasted his body 35 years ago, which I tried to counter with the success my friend Joyce Wadler had with chemo through three different cancers.

It didn't help much and even though I told myself that there was no point in having gone through the terrible recovery period from the Whipple procedure surgery and not follow up with the recommended chemo was just stupid, my gloom persisted.

“Stupid” is the word since, as the experts keep telling me, I am in better shape to beat this cancer than 90-plus percent of patients. To recap:

Because most pancreatic cancer is detected after it has spread, only ten percent of people diagnosed are eligible for the surgery.

The portion of my pancreas that was removed, including the tumor, was “clean at the margins” meaning it has not spread from that organ.

In addition, 17 lymph nodes touching the pancreas were removed and tested for cancer cells; three were positive.

Eighty percent of patients in my circumstance who take the chemotherapy are dead from the disease in five or fewer years.

And you wonder why I'm sometimes morose about this?

On the other hand, there is what my primary care physician said when I saw him a couple of weeks ago: “Ronni, you are very healthy - except for the cancer.” Maybe that is what made the medical oncologist on Wednesday more upbeat about my chemo outcome than some others: that it will be “curative” which means, like many other cancers, it is considered cured if the patient is cancer-free in five years.

To know that, there will need to be regular checkups, tests and scans to monitor the cancer (or – best case scenario – lack thereof) which, of course, leaves me with the life I have always wanted to avoid: being a professional patient.

But what other choice is there? So in mid-September I will begin chemotherapy with two drugs – one intravenous weekly through a port permanently embedded (for the duration) in my chest, and the second drug taken orally twice a day every day, each for three weeks in a row, then a week off before starting again.

For six months this goes on which will take me to March 2018. There are, of course, potential side effects – fatigue, various kinds of sores, peeling and cracking skin but not, in my case, hair loss, or not much they say.

With the intravenous drug alone, 55-60 percent of patients are alive after three years, the medical oncologist tells me. When the second, oral drug, which is relatively new, is included that number is increased by 15-plus percent.

That's the good news. The bad news is that the cancer might come back, usually in the liver or lungs and there is little treatment then.

Those of you who have discussed your chemotherapy in the comments undoubtedly know all about this with whatever differences apply to your kind of cancer.

To me, this is all new and in my gloom, I sometimes lean toward agreeing with those people who renounce these “poisons” in favor of herbs and other “natural” treatments.

My more rational self knows perfectly well that if flax seeds cured cancer we would have heard about it and they would cost $5000 an ounce.

Like me, you have probably noticed through the years, that people are remarkably adaptable to difficult even, sometimes, severe circumstances and once I get started with this new weekly routine in mid-September, I'm sure it won't feel as burdensome as it does now.

* * *

ABOUT THE PURPLE RIBBON: For readers who have commented or emailed objections to my use of the pancreatic cancer purple ribbon, I ask you to consider this advice Albus Dumbledore gives to Harry Potter in Harry Potter and the Philosopher's Stone, with which I heartily agree and applies to symbols as well as words:

"Call him Voldemort, Harry. Always use the proper name for things. Fear of a name increases fear of the thing itself."


What Others Say About Death

Virgildeathquote

Compared to how I felt in the first couple of weeks following surgery (which was awful), I am more than pleased with how my recovery is going. However, about once a week, I have a bad night without a wink of sleep.

That happened to me Monday and today (Tuesday as I write this for Wednesday), I'm left with a brain too low-functioning to tackle anything that requires much thought or organization. So I'll let others do the speaking.

A cancer diagnosis certainly does focus the mind on the far end of life and I have been checking out what some people – ancient and modern, well-known and not – have had to say about it. Here are a few I have enjoyed pondering:

“We cannot banish dangers, but we can banish fears. We must not demean life by standing in awe of death.” – David Sarnoff
”Death is more universal than life; everyone dies but not everyone lives.” - Andrew Sachs
“Don’t cry because it’s over. Smile because it happened.” – Theodore Geisel (Dr Seuss)
“A dying man needs to die, as a sleepy man needs to sleep, and there comes a time when it is wrong, as well as useless, to resist.” – Stewart Alsop
”No one wants to die. Even people who want to go to heaven don't want to die to get there. And yet death is the destination we all share. No one has ever escaped it. And that is as it should be, because Death is very likely the single best invention of Life.

"It is Life's change agent. It clears out the old to make way for the new.” - Steve Jobs (who died of pancreatic cancer in 2011, eight years after diagnosis)
”To fear death, my friends, is only to think ourselves wise, without being wise: for it is to think that we know what we do not know. For anything that men can tell, death may be the greatest good that can happen to them: but they fear it as if they knew quite well that it was the greatest of evils. And what is this but that shameful ignorance of thinking that we know what we do not know?” - Socrates
”Life does not cease to be funny when people die any more than it ceases to be serious when people laugh.” - George Bernard Shaw
“Now he has departed from this strange world a little ahead of me. That signifies nothing. For us believing physicists the distinction between past, present, and future is only a stubbornly persistent illusion.” – Albert Einstein
“I’ll bet in Heaven they have one single word that means ‘back when I was alive’. You know, to save time in meetings and stuff.” – Derek Littlefield

What about you? Do any of these speak to you? Do you have any you want to share with us?


Living on the Edge of Life

Pancreaticcancerawareness160leftTomorrow will mark six weeks since my surgery for pancreatic cancer and I think I am doing remarkably well. The long incision down the middle of my torso is healed. Hardly any pain related to the surgery remains.

Although I am still unwilling to lift anything heavier than six or seven pounds, I am doing everything else for myself now, if a little slowly, and I drove for the first time over the weekend. It went well.

The overwhelming fatigue has lifted but by late afternnoon, I'm done for anything more than lying around, and that gives me plenty of time to ponder my predicament: the malignant tumor was successfully removed from my pancreas but there are those three pesky lymph nodes (and more that were not tested?) where the pathologist found cancer cells.

In about ten days I will spend time with the medical oncologist to find out all about what chemotherapy can do about that. Having that treatment is, of course, my choice but recovering now from surgery that was the hardest thing I've ever done, I doubt I'll reject giving chemo a chance to work.

Meanwhile, I am living in a sort of twilight zone of an unknown precarious future. Sometimes I try to imagine what the cancer looks like and picture it gone, poof. Other times I think of it as an enemy, as I would any person who is trying to kill me, that I must fight with all my might.

Neither of those work for me, especially the second. I can't seem to rustle up a mental scenario of bodily war against cancer. Lack of imagination, I suppose.

Many people have told me I'm brave and courageous but I don't know about that either. Bravery, to me, means lack of fear in face of danger and that's certainly not true of me right now. I am definitely afraid of the future.

Having courage, on the other hand, is to take on a dangerous adversary while also feeling overwhelming fear.

You may think that, particularly in agreeing to chemotherapy to fight the cancer, I am being courageous and for me, chemo is as frightening as cancer itself.

But I see it differently: that I must live in the world as it is and what it is now - a cancer that can kill me - doesn't change whether I am afraid or not so courage doesn't enter into it.

The possibilities for my future are simple and obvious:

The chemotherapy works and with or without additional treatments, the cancer goes into remission and am granted some reasonable number of additional years

The chemotherapy doesn't work and I die sooner rather than later

It's such a mystery, death is. Our culture sees it as the ultimate adversary to be fought against relentlessly. My current fear notwithstanding, I believe death is the natural order of things – nothing else makes sense to me.

Further, I've always thought that as the time of my death approaches, I would gradually lose interest in the world around me – I watched that happen to my great aunt and several friends who died decades younger than she did. But the thing is, faced with this medical catastrophe, I haven't lost interest.

Well, maybe I have to a degree. As I have recovered from the surgery, I have lost interest in most non-news television, even many of my favorite shows. Suits, for example, seems much less compelling this season, less well written, more soap opera. Is it them or is it me? I can't tell.

And it's not just recovery that has slowed me down. I take time outs during the day to try to think about how I want to spend the time I have left, and about dying - what I need or want to do to be ready for it.

I don't get much further than the idea I hold that death is a normal, peaceful process and that I would like to be awake as I die – to experience it.

Mostly, however, I have not come to terms with dying yet, which leaves me living on the edge of life. It is impossible to imagine that the world will go on without me to keep an eye on it. Silly, of course, that. And so many other unresolved issues to work on. But just for today, I have places to go and things to do, fully engaged as though this hasn't happened to me.

"Life is pleasant. Death is peaceful. It's the transition that's troublesome." - Isaac Asimov


A Reverse Bucket List

Not many people with pancreatic cancer survive for long. As a reminder, here is how I explained my condition after surgery:

”The tumor was determined to be 'clean at the margins' - that is, cancer had not escaped the pancreas.

”In addition, 17 lymph nodes touching the pancreas were removed and tested for cancer cells; two were positive. Here is what that means for me.

”There are types of chemotherapy to treat this cancer and I will meet with a medical oncologist about that sometime in the next month or two. According to my surgeon and his team, a few people respond to this treatment and live up to ten more years.

”Sounds good except that 80 percent in my circumstance who take this treatment are dead from the disease in five or fewer years. Numbers may vary from other sources but not enough to talk about.”

Yes, as some TGB readers have noted, statistics are not destiny, but they can't be ignored and further, they can certainly be used as one kind of guide when life throws up such a devastating bump in the road as this.

For now, a month since surgery, I am seeing small improvements in daily life. I'm generally pain free now, am finally catching on to how I need to eat for the foreseeable future and I've learned not to scrimp on rest. The smallest exertions still deplete me of energy so I nap a lot.

The many rest and sleep periods have given me plenty of time consider what I want to do with the time remaining to me – whether a year or two or a decade.

I don't have anywhere near a complete answer, but I do have this: a strong suggestion of one's shortened mortality makes it easy to ditch projects you were not all that interested in to begin with while shedding guilt about not keeping up with the zeitgeist.

Most of what I have so far added to my list to ignore relate to technology.

ITEM: I have now absolved myself of learning to text. It's too hard to hit those itty-bitty letters on my phone and in general, I don't have anything to say in what's meant to be a short format. “Hi there – thinking of you” doesn't strike me as meaningful communication.

ITEM: Given the extraordinary number of videos, news reports, promotions, reviews, actor interviews and more, it is clear that Game of Thrones has become a cultural icon of enormous proportions, something anyone who pretends to knowledge of American pop culture must be familiar with.

Although I have deduced that GoT is a television program (are there books too?), I have zero knowledge of what makes it noteworthy and now I don't have to try to figure it out.

ITEM: “They” are now at it again, telling us in recent months that virtual reality and augmented reality are the next big thing. (I suppose that's why Google Glass failed so spectacularly and was pulled from the market two years ago.) This new iteration has yet to materialize and I'm ignoring it – happy to go to my grave steeped in the real world.

ITEM: And I've stopped feeling guilty about my deficiencies – based on dislike – in Facebook and Twitter. Yes, I know that a billion people on earth use FB. That doesn't mean I must and I use it minimally to accommodate readers of this blog. Beyond that, I'm done with thinking I really should put my mind to mastering it.

As for Twitter, there is nothing I have to say in 140 characters or fewer that is worth anyone's time. And I have blacklisted Twitter's daily emails telling me how to “get more people to pay attention to me.” That wasn't a goal in my life before my diagnosis and certainly not now.

It feels great to free myself of these “shoulds” and they are just the tech-related items. I've also made peace, for example, with the idea that I am unlikely to re-read all of Shakespeare before I die. And I have a tentative list of other items I'm considering adding to what I now think of as my reverse bucket list.

How about you?


Focus and Concentration Deficiency

It's really annoying. Since my surgery four weeks ago, I've lost focus. I can't concentrate long enough to get through an average news article or sift through a simple Google search results page and certainly not a book chapter.

Sometimes, when I read a sentence, there is a delay before I understand it. Not much; I've been describing it as the length of a slow finger-snap – just enough time so that the slippage is obvious to me.

When that happens with each sentence in succession, concentration drifts away and meaning is lost.

As it turns out, there is a name for this phenomenon as it occurs after general anesthesia. It's called Post-Operative Cognitive Disorder (POCD). TGB reader Linda commented about it here on 7 July.

She quotes from the American Society of Anesthesiologists:

"Confusion when waking up from surgery is common, but for some people – particularly those who are older – confusion can last for days or weeks..."

It's not exactly confusion for me. In fact, I never doubted that the gazillion bugs I saw crawling up the walls of my hospital room for a day or two following surgery were anything but hallucinations.

However, some other changes Linda tracked down that affect the process of cognition definitely apply to me:

”Cognition is defined as the mental process of knowing, including aspects such as awareness, perception, reasoning, and judgment. Typical complaints of those people reporting POCD are:

Easily tired

Inability to concentrate. For example, they cannot concentrate sufficiently to read a book or newspaper

Memory dysfunction. For example, they have a reduced ability to remember things recently said or done

Reduced ability to perform arithmetic. For example, they make mistakes with normal money transactions while shopping.”

I'm doing fine with arithmetic but the first three are definitely present in my life although I'm heartened to learn they are temporary. Meanwhile, I'm mostly annoyed by it but it does make napping and resting easier than it would be if I were eager to be reading.

ASIDE: Perhaps you have noticed in these blog posts since the surgery that they are all generated from my head alone - no research, no outside links, no facts and figures. That's unlikely to change until my brain fog (POCD) clears.

It is experience rather than reading and research that is making this months-long recovery period a sharp learning curve for me, and I expect there to be more of it.

For all the many years I've been studying ageing, I see now that I have never fully appreciated the difficulties old people face whether from a bodily assault such as my surgery, the natural progression of growing old or “just” managing a chronic disease or condition.

Only last Friday, after being home from the hospital for two weeks, did I finally get a usable grasp on my medications, their dosages, frequency and times of day. Food restrictions add another layer of complexity.

It took several hours to make a chart I can follow until my brain, out of daily practice, will finally know what meds to take when without consulting a list – and double-checking it to be sure I'm correct each time.

Fatigue requires daily management not only of one's own energy level but recognition of it by family members, friends and helpers. I tire so easily that I've given myself a routine of one hour up and about, one hour lying down or napping.

Even the normal activities of life are draining – the small amount of cooking I do, washing up the few dishes, paying bills, sorting the mail, answering email, etc. take their toll.

If there is an “event” in my day – a doctor visit, a physical therapist session at home, a friend stopping by, even phone calls with my medical team or friends – I need the next day to myself, to quietly regain my energy.

Until now, I did not realize how crucial the home assistance tools of recovery (see this post) are and it took a while longer for me to understand that for many elders, they are not temporary, that daily life without them can be nearly impossible.

It's hard to be old, something I've said in the past but did not know until experiencing it first hand how much effort goes into it every day.

That takes nothing away from the pleasures of life and it might be that the difficiulties make them even more precious.


First Post-Surgery Outing

JOURNAL ENTRY
The doctor removed my 20-odd surgical staples on Wednesday. For those of you who asked, it was no big deal, feeling something like a minor pin prick for each one.

Although I consider it a milestone, this, of course, does not end my recovery. The doctors and I discussed the eight or ten questions I'd brought with me, adjusted some medications and when I expressed my frustration with the slow return of energy and simple capabilities, the surgeon reminded me that this will take, overall, about six months before full normal activity resumes.

Not that there won't be noticeable progress toward that goal as the weeks go by.

If you don't count my ride home from the hospital on 29 June, until Wednesday I hadn't been outside since I checked in at the hospital on the morning of 20 June – more than three weeks ago.

That doesn't mean as much to me as it does to many people who like to be out and about every day. I like being home. Even so, I saw the trip to the doctor on Wednesday as my debut outing after this gigantic assault on my body, mind and spirit.

Among the extraordinarily kind friends and neighbors who are helping me out these days is Cathi Lutz who had volunteered to drive me to the doctor appointment on Wednesday.

She kept by my side as we walked to her car and was there in case I faltered as we navigated from the parking garage to the elevator and through halls to the doctor's office. I've been walking and balancing well at home so I did this without the walker and it went quite well. But I was happy to have Cathi for backup.

The doctor's office had phoned in a couple of new prescriptions so on our way home, Cathi offered to stop at the pharmacy to get them and I realized I was pleased to further extend the outing – excited to be out of the house and/or medical situation after so long.

When I said this to Cathi, we both laughed that the destination of choice (or, necessity for the medication) was – wait for it: Safeway. Go ahead, you can laugh too.

As always in these weeks since the surgery, I am paying for the change in routine today (Thursday) with a near complete collapse of energy. It happens this way every time.

According to the doctors, I am doing well but this is the way it is for awhile. I wish I could buy patience at the pharmacy as easily as a pill.


Post Surgery At-Home Assistance Tools

My 20-some staples come out today – three weeks and one day since the surgery and I'm glad for that. The incision looks nicely healed to me and it's time to move on.

Still, overall recovery will take much longer. A whole lot of stuff inside me was removed, relocated and reconnected in new ways so for several more weeks I am not allowed to bend over or twist my torso.

Until forbidden, you – like me – might not ever have noticed how often you bend every day. It can easily be dozens of times and as a result, I now have a reasonably large collection of special tools to help me do so many things I did without second thought before now.

You will be familiar with most of these but the last two might be a surprise for you.

WALKER
Of course, the ever-present walker. Lots of elders need this at some point – temporarily if not permanently. I navigate well on my own in the house but I'll take it with me just in case for awhile when I go outside.

Walker-folding

SHOWER STOOL
With the help of a home health aide, I took my first shower at home on Monday. It went well but no way, even with an industrial strength non-skid pad in the bathtub would I stand on one foot in the shower right now.

The shower stool is a steady, reliable solution.

Shower-stool

GRABBER
This tool is almost as ubiquitous as the walker. It is endlessly useful, as I found for laundry. I'd thought – hey, no big deal. I can drop the dirty clothes in the washer, put in the soap and then transfer it to the dryer.

Oh yeah? I have a stacked washer/dryer that would involve a major bend in the middle of my torso to get the wet laundry out of the washer. Not good. But then I remembered the grabber and all was well.

Grabber

NO-BEND BROOM AND DUSTPAN
Even if you've never used one, you've seen this a zillion times in your life. Custodians everywhere use them to keep floors in offices, schools and even ballparks clear of trash.

I've found it's also useful for all the things I manage to drop.

Longhandledbroomanddustpan

NO-BEND LITTER BOX SCOOP
Apologies that I don't recall the name of the TGB reader who recommended this to me. The image below is different from mine which includes a long-handled, small bucket to hold a plastic bag in addition to the long-handled litter scoop as shown in this photo.

It's slightly unwieldy to empty the litter box but it works fine.

Longhandledscooper

PROTECTING THE INCISION FROM THE CAT
Cats are unpredicatable and the last thing anyone just home from surgery needs is a cat landing on an incision.

A neighbor had told me that after her abdominal surgery several years ago, she turned a large cardboard box upside down, removed the flaps and cut holes at either end for her legs and chest.

She slept that way and was safe if the cat jumped on her - he'd land on the box, not her abdomen.

I thought this was a clever solution but I didn't have a big box. What I do have however, sitting unused in a bedroom corner for longer than I can remember, is a bed table. I place it over my mid-section when I'm in bed and sleep safely from the cat's potential errant ways.

Bedtable

CAT FOOD FUNNEL
As soon as I got home from the hospital I realized I had no idea how I would feed and water the cat. I couldn't bend over to get his bowls from the floor and he's too old and fat to jump onto the counter. What to do?

This is ingenious not to mention, the coolest thing: My neighbor, Lauri Lindquist, got a three-foot, cardboard tube. He then formed a plastic cup into a funnel and taped it to the top of the tube. Voila!

All I do now is place the bottom of the tube in the cat's food dish and pour his dry food through the tube. (Sorry the photo isn't better; you can barely see the plastic funnel at the top. I didn't have the energy to fool around to get it right.)

Catfoodfunnel

Lauri's wife, Judy Rossner, had the idea to use a watering can to carefully pour water in Ollie's water dish and that works too.

There are plenty of other useful tools for people coming out of surgery or who are disabled in other ways. They are all helpful and I'm grateful for every one of them. But my favorite is Lauri's homemade cat food funnel. Excellent.


There Was an Old Woman...

Pancreaticcancerawareness160left

...who was estranged from her only relative. A short, sad story.

They had adored one another as children – big sister, little brother. Then, the parents' divorce separated the two resulting in their living in different states, visiting on holidays and summers. The split came about thusly:

At age 15, big sister was allowed by law to choose the parent she lived with. Little brother was too young to be given the choice and further, government bureaucracy required that big sister go alone to a courthouse to answer questions from a judge about her homelife.

Sixty years ago, 15-year-olds were nowhere near as sophisticated as they are nowadays, big sister then being even more naive than many. She was frightened and nervous during the proceeding but did the best she could.

Life went on. In their adulthood, the sister and brother lived on opposite coasts of the United States. They hardly ever saw one another and then, mostly when sister traveled to the west because brother did not like to fly.

Time passed. At one point they developed a habit of spending an hour or so on the telephone together each Saturday and sister looked forward to that every week. It lasted quite a long time until brother's girlfriend announced she was now an orthodox Jew and brother could not talk on the telephone on the Sabbath anymore. No alternative seemed possible.

Thereafter, communication became a haphazard affair – neither regularly on nor entirely off.

Decades went by until circumstances brought big sister, now an old woman, to live in the vicinity of her brother. She thought, hoped they might be able to forge a new kind of sibling relationship in their dotage.

At their first holiday together, brother accused sister, who had taken on the caregiving their mother in her final months, of not equally sharing the small inheritance. Sister was shocked. It was nowhere near true; in fact, she had used her own money to clear up a few hundred dollars of extra bills that came in late.

Apparently, brother had been harboring his misbegotten belief for 20 years.

Next, brother refused a gift from sister because, he said, he could not afford to respond in kind – that is, monetary kind. Who, thought sister, tots up the price of gifts to make sure they come out even?

For those and some other disagreements, there was no resolution and for several years they each lived in their nearby towns without communicating.

Out of the blue, sister was hit with a life-threatening cancer diagnosis. As she prepared for surgery, she thought to inform her one and only relative, if only so that he had that family medical information for his own use if ever necessary. After vacillating, she sent a neutral, informational email.

Brother was terribly busy wrote his wife, but in several exchanges between the two women, there seemed to be some room for a rapprochement that sister welcomed even if something god-awful had brought it into being.

As she prepared to leave for the hospital at 5AM on the morning of her surgery, sister checked her email for what she surmised would be the last time in awhile. There, time-dated at 2:43AM on the morning of that frightening medical ordeal, was a note from brother.

There was something he wanted to clear up, he wrote. The gist was that because of sister's conversation with the judge 60 years previously, brother had “lost his family” and grew up with the wrong parent which had ruined his life.

But oh, he added in closing, sister was his one and only relative so she had better survive, signing off with “love.”

The ride to the hospital felt longer for the old woman than it really was and she couldn't get her brother's monstrously timed note out of her mind even as she was wheeled into the operating room.

Because neither brother nor his wife has followed up since then, the old woman assumes they have come to see that with such a grotesque message sent in the final hours prior to sister's surgery, an immutable line was crossed.

Even so, not a day has passed – nor a few nights - that the old woman has not been haunted by this sad, painful story in all its aspects, wondering again and again from whence such cruelty arises.

* * *

PERSONAL ADDENDUM: As just about every TGB commenter has mentioned over the past several weeks since this difficult new "adventure" in my life began, an optimistic outlook - within the context of reality - is crucial to a good recovery. With some effort, I am maintaining that and it is in no small part to the warm, loving support of this TimeGoesBy community.


Surgery Recovery – Day to Day

(NOTE: This is a report about my personal progress – no one else's. Maybe there are hints for others in a similar recovery, maybe not. Aside from the general path toward recovery, none of us can know another's needs or solutions. This is one person's journey to wellness that might - or not - have a little value for some others.)

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Nothing anyone told me prepared me for how hard this recovery is. I think that unless you are on a second or, god forbid, a third major surgery, you have no idea.

This is the hardest thing I have ever done.

Two weeks after the surgery, Wednesday, was my first pain-free day. The only discomfort was, and still is, where the 20-odd staples are in place down the middle of my torso. But that's only an irritation, not pain.

(If I were 40 years younger, I'd plan for a zipper tattoo when I am healed.)

The sorriest difficulty, which continues so far without improvement, is that the thing that most heartens and inspires me is also the most exhausting. Let me tell you about exhaustion, the kind I have never imagined:

A walk from the bedroom to the kitchen requires a sit-down rest. Scrambling an egg and washing up the pan and dish is equally tiring. Cleaning the cat's litter box – even with a special long-handled utensil (I'm not allowed to bend or twist) – requires a lie down.

But worse than that is how much a friend's telephone call or neighbor's visit depletes me while, ironically, also invigorating me – if only in my heart and not my body.

Any phone or in-person visit longer than about 15 minutes results in an hour's nap but I know they also make me feel better. So I try to balance but other forces get in the way.

On Tuesday, a woman from a home health care service came by and spent two hours taking my medical history, medications, inspecting my home and taking notes. She is smart, knowledgeable and spelled out a good course of help.

But after those two, long hours, it took all of Wednesday in bed to get back to my (admittedly, low) normal. A phone call that day with the pharmacy to sort out a prescription took more attention than I was capable of giving.

Eating is difficult. I'm almost never hungry so must force food in five or six small meals a day. Most of the time it feels as though I've just finished Thanksgiving dinner so I worry that I'm not getting enough calories and protein. I've not found a solution but to hope for improvement as healing continues.

There is a dreaminess to my days. I've made myself a schedule of one hour up and one hour in bed that I intend to expand to 90 minutes when I feel ready. The in-bed time expands and it's not that I sleep. Nor read. Nor watch television. Nor listen to music necessarily

I'm in a kind of stupor then, aware of what's around me if I care to pay attention but mostly drifting to head places I don't recall when I “come to” again.

Although it takes several sittings over two days to get one done, writing these blog posts keeps me focused for longer periods. I've decided that's good for me.

Recovery from something as big as this surgery is, I think, living in another world for awhile that I never imagined existed.

Watch this space for a story about the ingenious tools some neighbors and others have invented to help me through these weeks of recovery.

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FACEBOOK: For many years through Typepad, the company that hosts this blog, each post has automatically posted to Facebook. A week or so ago, Facebook, without announcement or notification to Typepad, stopped this connection so that TGB posts no longer show up on Facebook.

Typepad tells me that I can let TGB Facebook readers know about a new post by including a link to the blog in a "status update" on Facebook. I have no desire to learn any more about FB than I already know but apparently I am being forced into this much. Anyone who can explain what a status update is and how I do it, please let me know in the comments below. And thank you in advance.


My Pancreatic Cancer Prognosis

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According to my surgeon, only 10 percent of pancreatic cancer patients are eligible for surgery. Had I not been one of them, there would have been, essentially, no useful treatment.

Following surgery, it was a week before the pathology report on the bits and pieces taken from my body was ready. In words you and I can understand, here is what it said, the short version:

The mass in my pancreas was positive for pancreatic adenocarcinoma – pancreatic cancer to you and me.

During surgery, called the “Whipple Procedure,” the diseased part of the pancreas was removed along with my gall bladder and some other parts. The tumor was determined to be “clean at the margins” - that is, cancer had not escaped the pancreas.

In addition, 17 lymph nodes touching the pancreas were removed and tested for cancer cells; two were positive. Here is what that means for me.

There are types of chemotherapy to treat this cancer and I will meet with a medical oncologist about that sometime in the next month or two. According to my surgeon and his team, a few people respond to this treatment and live up to ten more years.

Sounds good except that 80 percent in my circumstance who take this treatment are dead from the disease in five or fewer years. Numbers may vary from other sources but not enough to talk about.

(Excuse me while I take a moment for another small weep.)

Well, that's a stunner. Even though I'm 76 years old and even though my parents and other relatives died of one cancer or another when they were younger than I am, I was aiming for my grandmother's lifetime (92) or my great aunt's (89).

Nonetheless, I find it hard to complain that 77 or 78 or 80 years is not a decent run at life. And I have no patience with “miracle” alternative cancer cures – believe me, if they were real we would all know about them. Nor do I place any hope in beating the odds – a foolish waste of time.

Beyond that, my thoughts are an unrelated jumble still fogged from the effects of surgery, anesthesia and follow-up drugs – not useful. It takes every bit of my physical and mental effort right now to work out my medication schedule, figure out this new way of eating and give my body time to recover from the trauma of the surgery.

Walk, they tell me, even short distances. Keep your feet above your heart to reduce the swelling in your feet, ankles and legs. Well, which is it? How do I balance that?

Not to mention nap time. For the short future, I'm doing one hour up and about, the next hour in bed and so on.

I want to answer your lovely email and snailmail cards but 30 minutes at the desk every couple of hours is my body's and mind's limit and there are also banking, bills, personal business items, etc. to deal with.

Thinking time too. How do I want to spend the months and years remaining to me? I don't expect to answer that now, all at once, but the thoughts bubble up and need attention or, at least, notation before they float away.

The most I've figured out so far is that I desperately do not want to become a professional patient but I don't even know yet how much of my time and effort will need to be devoted to being as healthy and active as possible.

There is a lot more to life than dying and I still want as much of it as I can get.

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Recovering at Home

This post has been the Saturday Interesting Stuff for many years but not today. I'm writing on Friday morning because I am too tired now to think that I can do any better later.

One day at a time. Up days. Down days. Certainly I overdid on Thursday so I'm taking a makeup rest day. No need to comment - you have all been wonderful keeping my spirits high.

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Homeward Bound

Just a fast note to tell you I am on my way home today. I'm writing this on Wednesday with loads to do to be ready for the short but welcome journey and I am sooooo slow at everything these days.

I don't know if I will write for Friday; just assume I'm getting settled in and I'll be back on the pages before long.

Thank you all for being the wonderful people I know you are. This would have been so much harder without you.

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Hospital Land for the Overworked Executive

Personal Note: I'll try to post regularly now, but it depends on how I feel each day. Also, I am still fuzzy in the head so I'll keep these relatively short so they don't veer off into the crazy, however much you might get a laugh from that. Little vignettes, let's call them, of hospital life and what I'm learning here.

It appears, too, that my hospital stay may be extended by a day or two. That's not a bad thing, just careful.

I'm a novice at being a hospital patient, still learning. Those of you who have been here/done that will be way ahead of me in understanding that in some ways I have never been busier than when lying on my back.

Pills for this, injections for that and now it's time for vitals again. One set of numbers goes up and that's good. The same range in another set is likely to mean an additional pill or a different patch. Oh, now let's unplug that drip, but not the one that's really irritating you. And who knew scooting up in bed could be such a pain.

You learn to “logroll” yourself in and out of bed. At first it seems impossible it will ever work right but comes more easily faster than you would think. I am now nearing the status of world class logroller.

Looked at from a certain perspective, being a hospital patient is like returning to kindergarten. The first conversation of each day becomes, “Good morning, have you pooped today?” I never expected to have this much discussion of bowels but I think there may be an entrepreneurial opportunity in it.

Someone should do a little market research on what I'm thinking. That a week's stint in a hospital-like setting could be just what the doctor ordered for overly stressed-out masters of the universe: they do absolutely everything for you here, take care of every personal and private need you might have including, quite literally, wiping your ass.

And they do it without ever letting you feel it is inappropriate or embarrassing. It's just how it is in hospital land.

Okay, I know this is silly – just a thought I had among the buggy hallucinations but it is almost – just almost a real idea.

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It's Ronni Here

I am not JUST sitting up in bed, anymore, folks. I'm typing, putting words on paper so to speak and my brain is working fairly well. That wasn't always so here in Hospital-Land.

The several days of hallucinations were odd and interesting.

Ant-like bugs were scooting up the walls of my room for a couple of days, little fishies swam upstream on a room divider curtain and at various times I saw people and cats and some other animals who were not really there.

My brain is still slower than I would like but after many hours of anesthesia during the surgery, they tell me, that is to be expected for awhile. For now, let's set that aside until later for something more important: hasn't Autumn been wonderful?

She was here when I woke up from surgery, although I don't remember much of that, if at all, and the next day I was so happy to wake up to her wonderful face again – this time with a real memory of it.

I've read all her posts and all your wonderful replies and comments now, and they are all the proof I need that this is the best blog community on earth.

I will never find the right words to thank each of you for your strength, constant support, good cheer and I am loving your black humor. You go, Cowtown Patti, with those Nwalins chicken feet.

Here's the big good news: maybe, MAYBE I will be able to go home on Wednesday. That's just a maybe for now; some additional test results need to come in so we'll wait and we'll see.

Thank you, every last one of you, for being there for me with so much love and so much kindness. You make me happy.

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A Room with a View

The good news keeps on coming! Ronni was moved out of The Unit and into a regular room this morning after her NG Tube was removed. She has been sitting in a chair and clearing her lungs out as the rest of her body starts to kick in and work on its own. I called to chat this afternoon and there was no answer as Ronni had gone for a walk!

Ronni's medical team continues to impress me. They are knowledgeable and compassionate. They are patient and are willing to take extra time to answer many questions that I spring on them.

Ollie is great and being loved on by many great friends. This experience has really brought to light the goodness in people. Thank you.

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Post-Op Day 2

Hello Friends, I hope there is beauty in your day today.

I just returned from visiting Ronni in the ICU. She continues to make great gains in her recovery. When I arrived this morning, I must admit my heart skipped a beat when I saw an empty bed. I was thrilled to see it was because Ronni was sitting in her chair! We spent a good part of the day chatting and laughing- her current medications make Ronni hallucinate which was a riot for both of us.

Ronni's spirits are up and her pain management seems to be under control. Ronni's central line was removed from her neck (they could have warned me on this one!) which made her a bit more comfortable. The biggest complaint today is the inability to drink anything as they have yet to remove the NG tube. We are hoping for this to occur this evening and then it is off to a room with a window and ice chips.

Thank you all for your on going support and love.

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Post-Op Day 1

Good evening to all on Team Ronni, I hope this finds you well. After yesterday's marathon of a day, it was nice to call Ronni's nurse this morning to find that Ronni was resting well as she had been all night.

I sat with Ronni for most of the day today. I talked to her while she slept and stalked monitors as if I knew what the blinking lights and beeps might mean. At about 3:30 this afternoon, Ronni was alert and very ready to get rid of the vent. After assessing her strength, it was successfully removed, and her first words were, "I can talk." That has to be the biggest under-statement of the decade.

It was as lovely of an afternoon as it could be when two friends find themselves chatting in an ICU. We laughed and I showed her pictures of Ollie that I had taken this morning, which made her smile. We talked about Team Ronni and how amazingly wonderful you all are and how very grateful we are to have you in our lives. We also discussed that I may run away with all of you when I start my very own blog upon Ronni's return to TGB.

Ronni's nurse is wonderful. She is empathetic, knowledgeable, confident and when needed, tough. She is very pleased with the progress Ronni is making and is confident that this will continue, as are the members of the Surgical Team.

I am off to enjoy a glass of Cabernet and cuddle with Ollie- he lets me do that now. Thank you all for your love and well wishes.

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Post-op

Hello Team Ronni- this is Autumn writing with an update. First and foremost, Ronni is out of surgery and headed to recovery. It took a bit longer than expected- most likely because The Good Doctor had to dance around all of you in the OR.

I do not know a lot at this time, other that Ronni is resting well and pain free for tonight. It was a very long day, starting with a coffee free wake-up at 3:30 AM, check-in at 6:00, and surgery at 8:30. (Crabby Old Lady only made ONE appearance the entire morning.) The surgery was 14 hours and Doctor sounded positive and confident that they were able to remove the tumor.

Yesterday,as Ronni and I tried to "play normal", fear, sadness, and anger crept in a few times. When this happened, we allowed one another to feel it and cry when needed. We would then summon the strength to move onto the next task on the List Of Things To Do Before Surgery. As we were running through the dry run to the hospital, I silently sat in the driver's seat wondering where Ronni was getting her strength. When we returned home last evening, my question was answered as Ronni checked her comments. Each and everyone of you. Every note, every thought, every devotion, novena, meditation, and chicken foot kiss was received and cherished.

I am sorry to you, the readers, as I am far from a writer but I am committed to making sure you all have regular updates. I will pass along any and all comments to Ronni. Her laptop is packed in her suitcase and I have a feeling you will hear from her sooner rather than later.

Oh, Ollie was thrilled to see me and is allowing me to rub his ears and tail.

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Surgery Tomorrow

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The day has finally arrived. After all this upending of my life, worry and fear, the surgery will be done tomorrow morning.

You know how we old people often talk about how time speeds up as we grow older? It's a common phenomenon among all of us. Whole books have been written about it.

That changed suddenly when my pancreatic cancer was diagnosed on 31 May. In the 20 days since then, time has moved like mud. Sometimes, when I've checked the day's date, my reaction was, “Is that all? Really? I thought it was at least two days later.”

But now the big day is here. My friend Autumn, who is also my health care proxy, has arrived from New Jersey. She will drive me to the hospital in the morning and be here through most of this week.

I've set up templates for her on my blog platform so she can easily update you on how things are going. I don't know how long it will be until I can post again but I'm taking a laptop to the hospital just in case.

I have no idea if I am being overly optimistic about that but indulge me anyway, okay? And we'll see how it goes.

Whatever comes of this, it will be hard to ever thank you, dear readers, in any way that matches my feelings. Every one of you has my deeply-felt gratitude.

Your concern, love, thoughtfulness, ideas, jokes, suggestions and support have carried me through these scary weeks and now, apparently, as one of you commented a few days ago, it's going to be crowded in the operating room with all of you crammed in there to cheer me and the doctors on. Isn't that a wonderful image to hold?

See you back here as soon as I am able.

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