50 posts categorized "Cancer"

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.


Crabby Old Lady and Cancer on TV

When something newly interests us, we naturally become more sensitized to it. We pay more attention, we notice it more and like Crabby Old Lady recently, may wonder if it is just her or is there a lot more on television these days about cancer?

Even if she's wrong, it feels that way and a lot of it is disturbing.

What comes to mind first are those commercials for the various cancer-only treatment centers in cities around the United States, some of them for-profit chains. They and others spend a lot of money chasing after new patients via TV commercials and not infrequently run half a dozen of the same commercial in a single one-hour program.

Crabby supposes there is nothing wrong with that in a capitalist economy where many lawmakers and citizens believe healthcare is a privilege and not a right. What she objects to is how the commercials try to make viewers believe that if you travel to their hospital, you will be cured of cancer.

Most of us, Crabby included, don't pay close attention to TV commercials – usually just enough to fit into the periphery of our minds while we think about something else and that's where the producers create their edge, counting on viewers to hear the music and not the lyric.

Of course, when you listen word-for-word, they don't use the word cure. But most of us get the general impression of becoming cancer-free that they intend us to hear.

You will have to trust Crabby on that or track down some commercials online for yourself because Crabby cannot bear to watch them anymore. She is all too aware these days, given her own cancer, how cruel it is to imply a cure when none can or should be promised.

A couple of facts: in the United States, according to the National Institutes of Health, cancer is the number two killer after heart disease; just under 600,000 people a year die of cancer. During their lifetimes, about 40 percent of Americans will be told they have cancer.

Those are large numbers but that doesn't mean progress in treatment isn't being made. As The Economist reported in September,

”Cancer has become more survivable over recent decades owing to a host of advances...The survival rate for leukemia in America has almost doubled, from 34% in the mid-1970s to 63% in 2006-12...

“Caught early, many cancers are now highly treatable. Three out of four British men who received a prostate-cancer diagnosis in the early 1970s did not live for another ten years; today four out of five do. Other cancers, such as those of the lung, pancreas and brain, are harder to find and treat.”

In her heightened state of awareness, Crabby has also wondered if more TV dramas aren't making cancer a plot point. She first noticed what appeared to be an uptick over the summer and only this week started making note of incidences. Just a few days ago she jotted down this line from a show whose name she doesn't recall:

“He had pancreatic cancer. The doc said he'd be dead in a few months.”

Oof. Dear god in heaven, do we have to say such things so starkly? Crabby wonders.

Well, of course we do. Writers should use whatever knowledge and information they have to move the story forward and not pull punches while they're doing it.

But here's the difference: The drama writer is stating a a well-known fact. It reinforces belief in the veracity of the story making it more immersive and, the producers hope, bring more viewers leading to larger profit.

The commercial writer, on the other hand, is trying to fool viewers by implying that there is a happy outcome to cancer treatment every time. Also for profit.

Many of the cancer centers – profit and non-profit – are involved in important research that over time moves the needle forward on cancer discoveries and treatment. It's their media approach that makes them, at best, unkind and makes Crabby Old Lady queasy to think some viewers might believe what is being implied.

On the other hand, all this could be that Crabby has enough cancer in her own life right now to be able to tolerate what seems to her to be an excess of media references, some of which make cancer seem like a day in the park. It is not.


Accepting the Idea of Death

Death, my own, has been a companion for all my life - or close enough. Such thoughts took up a good portion of my 21st birthday – the arrival of full adulthood for my generation - as I spent two or three hours alone along the seawall in Sausalito, where I then lived, trying to make sense of the idea that at sometime in the far, far future I would die.

As hard as I tried that day to accept what one part of my mind fully understood was the ultimate awful truth of life, I could not conceive of it. You and you and you would die but not me. I was, I almost believed, the one immortal.

Not infrequently through the ensuing half-century, I revisited those thoughts determined to make peace with my mortality or, possibly more important, to rid myself of the anxiety, dread and horror of non-existence.

I suppose I made some progress toward acceptance but mostly my death remained theoretical until a few months ago when the doctor pronounced the words, pancreatic cancer. It's not like many people survive that diagnosis for long.

Since then, I've spent even more time than in the past thinking about death. Not generic death, not death in the abstract, but my personal death. And what, be my time short or long, I can do with the indisputable knowledge that I have a life-ending disease.

Over the years of studying ageing, I have read dozens of books about death and dying – the clinical, the scientific, the medical, the metaphorical, the personal journals of caregivers, others who would make comedy of their own impending death along with “expert” advice on how to meet the inevitable.

Now that I am knocking on that door, none of it means much anymore but I have come to a simple answer that I can live with – until I come up with something better – which is this:

Go on living, whatever that may be each day. If you can't get rid of it, take the burden of fear with you – you've had decades of practice. Most of all, there is no point in being miserable over something that cannot be changed.

[ASIDE: And anyway, how hard it could be, this dying stuff: after all, everyone who ever lived has done it.]

It has helped that I have recalled a true story I told here some years ago but hadn't thought of since then:

Talking with a friend as we walked down Bleecker Street in New York City, I gestured widely with my arms to make a point as I stepped backward. Instead of solid pavement, there was the emptiness of an entrance to a store cellar - a large, square hole in the sidewalk.

As I fell backward, I managed to brace myself against the building wall with one arm and could see below that it was a deep cellar with many, steep concrete steps. I would surely die as my body crashed to the floor.

My friend caught my other arm and tried to pull but she was wearing new, smooth-soled sandals that kept slipping so that she couldn't get a purchase on the ground to help me up. My arm against the building was slipping too and I knew I couldn't hold myself there for long.

Then, in the span of no more than ten seconds, I went from blind, paralyzing fear (oh, shit, I'm going to die right here and now) to perfect calm and acceptance (it's okay, I can do this).

Then I deliberately let go of the wall to fall to my death.

But a miracle happened. Two strong hands caught my back in the middle of the fall and gently lowered me, unharmed except for a scraped elbow, to safety and continued life.

I am not religious. I do not believe in an afterlife. I don't believe in reincarnation. And I doubt the significance placed on all those near-death, white-light stories. I believe that when we are done with our one life, we're done.

What I hope for is what happened to me on the basement stairs of that Bleecker Street restaurant one day many years ago - that as death grows close, I can accept that it is my time to go. Meanwhile, I intend to carry on pretty much as I would have had this rude interruption not occurred.

ADDENDUM: (Cue Twilight Zone music.) We were both shaking, my friend and I, when I returned to solid ground and we sat on an adjoining stoop smoking cigarettes until I'd calmed down.

Without our having noticed as we sat there saying little, the metal doors to the basement had been closed and padlocked so I went into the restaurant to ask for the person in the basement who had saved my life. None of the waiters nor the cashier knew what or who I was talking about. They insisted none of them nor anyone else who worked there had been to the cellar yet that day.

I don't know what to say about that.


Cannabis and Chemo

When I mentioned last week that one of my physicians had recommended cannabis, especially the CBD part, to help me sleep through the night, we both laughed acknowledging that it still feels odd – even in a state where it is legal – to be discussing with a doctor how weed might improve my life.

Quite a few commenters on that post mentioned how they have been using versions of cannabis to treat a variety of ailments, especially pain, for a long time:

Reduce joint pain
Doubles sleep time
For pain
Aches and pains recede
Got me off opioids
Reduces lower back pain
Works for sleep

That was a week ago and you, dear readers, impressed me enough that I hied myself off to the closest cannabis dispensary, about five miles from my home.

One of the “bud tenders” behind the counter, who was obviously well informed and very helpful, listened carefully to my questions, then showed me a variety of edibles with CBD but also, at my request, others that combine both CBD and THC (I don't see any reason not to enjoy a nice, little high for awhile before sleep arrives).

My choice was a box of ten small chocolate candies each containing a hazelnut at the center that are half CBD, half THC. It was like the old-fashioned, illegal weed I smoked for most of my life in that what constitutes a dose is flexible from person to person. Some people need only one candy, the bud tender told me, others need two or, sometimes, three.

For me, he recommended trying two and then adjust up or down from there – which is what I did about an hour before I wanted to go to sleep.

Hallelujah – it is the first time I've slept more than two or three hours straight in a year or more – nearly seven hours this time. Since then I've used one candy and that works as well as the two on the first night.

So. Sleep problem solved. And unexpectedly, a second problem solved.

After the lab had analyzed the blood the nurse had drawn from me when I arrived for my weekly chemotherapy infusion last week, I was told that because the reading for one blood component was so low, I was at high risk for infection.

So, they said, I would have a week off – also from the oral chemo I take at home twice a day – and see if the reading improves enough next (this) week for the infusion.

Well, that's fairly alarming. During the surgery in June, some cancer cells were found in three lymph nodes in addition to the tumor that was removed from my pancreas. I doubt those cells or any others are disappearing on their own which is the reason for the chemotherapy.

When I asked if this – time off from chemo for awhile - is a common occurrence, the nurse did not sound encouraging, at least in my interpretation. “Sometimes,” she said. The treatment - that is, the kind of chemo drug - might be changed or reformulated.

Until now, my reports in these pages about the progression of my treatment have been upbeat because I've felt that way. Now that the effects of the surgery have healed, I have felt so healthy that sometimes I've half-assed wondered if maybe someone made a terrible mistake and I don't have pancreatic cancer.

Of course, that's stupid and I know it. It's just that I've been so pleasantly surprised to feel so normal.

But as I left the chemo clinic without having had my infusion, my mood was considerably darker. What if that blood test number doesn't increase enough for another treatment? What if there isn't a different treatment if I need that? What if they tell me there is nothing more to be done? And so on.

I hesitated before writing that paragraph. I seems so raw compared to how well everything else in this odyssey has worked out so far. These new thoughts cripple me particularly when I'm tired which is pretty much daily, especially from mid-afternoon onward.

This is the first news I've had about my condition that frightens me. Well, hold on. Let me restate that: stark, uncontrollable panic is a closer description to what I've been feeling and that is true even while understanding that I have no facts to back up my fear. Yet. But these thoughts above and worse go round and round in my head like ear worms especially when I'm tired.

Then, for an entirely different reason, I tried those little chocolate candies laced with cannabis and it's a bit of a miracle. They give me relief from the long, wide-awake hours when sleep had been impossible and in the morning, because I'm fully rested, I can beat back the frightful furies (until I wear out in the afternoon) that otherwise take over my brain with questions that are not answerable yet.

Serendipity is the only explanation - I tried something for one problem and it relieves a second one too. So thank you - those who commented about your experience with cannabis for medical and sleep problems. You encouraged me to do something I might have otherwise skipped past.

Also, a neighbor who has tried a variety of medical solutions for his back pain was impressed enough with your comments that he is going to try some cannabis to see if it will help him.

Meanwhile, in case any of you, dear readers, live somewhere with marijuana dispensaries but like me, have been hesitant to check them out – or you're just curious - here's a short video tour of the one I actually went to.

In maintaining this blog's position as an advertising-free zone on the internet, in no way do I mean this video as a promotion or endorsement for the shop which I chose for no reason than it is near home. The video turned up while I was looking for something else and it is a good representation of what appears to me to be a well-run store.


Things You Can Learn at the Chemo Clinic

When, on three Wednesdays out of four, I go to the Knight Cancer Institute at the Oregon Health & Science University (OHSU) for my weekly chemotherapy infusion, the view from my chair is this: (Photo credit: Kristian Foden-Vencil-OPB)

KnightCancer2l

On those days, I'm in the building to the right in this photo overlooking the construction project.

This new, state-of-the-art research facility exists thanks to Nike founder Phil Knight. In 2013, he and his wife pledged half a billion dollars to OHSU to fight cancer and to keep OHSU people like Brian Druker, the scientist who discovered the power of the cancer drug Gleevec, around to continue their research.

But, said Knight, he would do this only if OHSU could match the donation. Half a billion is a lot of money.

In what to me seems a lot like some kind of miracle, OHSU topped the goal. As the Kuni Foundation announced in July 2015:

"Gifts came in from all parts of the community, snowballing into an unstoppable movement against cancer...Children held craft sales and collected cans, sending in shoe boxes of change. Local businesses and labor unions [banded] together sending in funds. The state of Oregon agreed to invest $200 million in OHSU facilities needed to support the building expansion."

Twenty-two months later, with a $5 million donation from the Kuni Foundation, OHSU had met Phil Knight's challenge having raised a total of $508 million. Ground was broken for the new $160 million building in June 2016 and completion is scheduled for next summer.

I know this because doctors and nurses and others at the Knight Cancer Institute have told me the story and I'll get back to that in a moment. First, some smaller things I've learned there from the caregivers at OHSU.

WEIGHT LOSS
Following my Whipple procedure surgery for pancreatic cancer in June, I lost nearly 10 pounds. Well – I suppose some of that weight was half my pancreas, my entire gall bladder, all my duodenum and some smaller bits and pieces the surgeon removed. But most of it was a result of the surgery and recovery.

Plus – I hadn't known this before – cancer uses up more energy more quickly than a body without cancer. The same can be said for chemotherapy. A patient is expected to lose weight during treatment and therefore is encouraged to gain.

God knows I've worked at it. Before now, I spent a lifetime trying to keep off the same 10 or 15 pounds I repeatedly gained back. Even so, it was easier to lose that weight than to put it on this time.

Having at last reached my pre-surgery weight recently, I asked the RN at my chemo treatment last week if she could lay off the admonitions to gain more weight.

Apparently she thought I was kidding. She repeated the need to continue gaining to keep ahead of the chemo drugs' predilection to eat away at my weight.

WRINKLES
Unless one is very fat, wrinkles go hand-in-hand with growing old. I don't much mind them, especially since the cancer diagnosis: something like that strongly focuses one's attention on what is really important, and wrinkles are not.

Even so...

The wrinkles I've had until now came on slowly. A smile line. Increasing number of crinkles under my eyes. That sort of thing over time.

Since the surgery? Wow. I lost enough weight that overnight even my knees became wrinkled. My forearms are crepe-y. My belly is rippled with a long row of wrinkles. So is my butt. These are all new. (No, I'm not showing you photos.)

At the same time, however, it's weird that my waist is bigger than before. It bulges out and that brings me back to what the nurse told me.

Most of the weight I have gained is and will continue to be "unfortunately, fat," not muscle. That's just the way it is in this circumstance, she said.

My whole body has gone soft since I hadn't been able to work out for a long time following the surgery. I finally got back to my morning exercise routine two weeks ago and I'm determined to replace some of the lost muscle. We'll see, we'll see.

CANNABIS
I've been smoking weed since high school but not much in recent years because it makes me cough. The state of Oregon has allowed sale of medical marijuana for quite a while and about two years ago, they expanded to allow sale of recreational weed.

Still, as curious as I am about retail versus illegal sale, I haven't gotten around to visiting a dispensary yet. So at my chemo visit to OHSU last week, when I told the doctor that sleep is a sometime thing for me, instead of a prescription drug, I was surprised when he suggested cannabis, particularly CBD which is, apparently, the part of cannabis that, unlike THC, doesn't get you high.

"What fun is that?" I asked him and we both laughed at how strange it still sounds to hear weed recommended by a doctor.

He explained that CBD is an anti-inflammatory and has a calming effect too that could help me sleep.

Is it as weird to you as it is to me to hear a physician recommend weed? I know that Oregon doctors have issued medical marijuana cards to patients for many years but it still felt odd when it happened to me.

OHSU
Getting back to this, a couple of weeks ago, I posted a list of the many things that, even with a diagnosis as frightening as pancreatic cancer, I am grateful for. There is another I didn't mention then.

That I am being treated at the Knight Cancer Institute at OHSU. My surgeon is one of the world's leading pancreatic cancer researchers and now, with Phil Knight's donation, he is assured of continued resources.

As Nature reported, Brian Druker, who is now director of the Knight Cancer Institute,

"...aims to rapidly hire up to 30 principal investigators, and to provide researchers with a funding cushion intended to free them from the burden of constantly applying for grants...

"The institute will focus on detecting cancers early in their development, when treatments generally have a better chance of success. Druker also wants the institute to take advantage of emerging technologies to develop better tests that would reduce false diagnoses."

Just last week, the Institute hired

"Dr. Gordon B. Mills to lead precision oncology for the hospital. He will be charged with working with his team to try to figure out what combination of drugs is most effective on different kinds of tumors. And he told KXL that he can’t wait to get started in Portland, 'The opportunity to do this at a center that is innovative, flexible, and is really wanting to make a difference, is the reason why I came to Portland.'"

Toward the end of last year, the first time I visited a doctor at OHSU, I felt a sense of pride and dedication from every person I dealt with that wasn't present or, at least, not as apparent with other physicians I've known as it is at OHSU.

I can't help but think all that energy comes from knowing they are part of something big, something special they have been part of creating and know that it took so many other people who believed it them and their goals to donate all that money to make this new research facility possible.

It also helps explain why from the start all these people have made me feel safe in their hands.


Contest Winners and Cancer Update

SOCIAL SILVER SURFERS EBOOK WINNERS

EBook_SocialSilverSurfers2016-web150On Friday, I wrote about a new eBook reporting on a survey about how elders use the internet. One of the authors, Erin Read who is a friend of mine, offered to give away three copies to TGB readers.

Now, with the aid of a random number generator, we have the online names of the three winners:

Janet
Gloria MacKay
Cynthia Friedlob

Congratulations all. I have forwarded your email addresses to Erin who will contact you to arrange delivery of the eBooks.

Erin tells me that part of her company's mission is to support those who work to enhance the quality of elders' lives so she will also send a free copy of the eBook to Anita Franzione who teaches a public health and aging class and to Judith Levkoe of Seniors Across Canada both of whom entered the giveaway.

Those email addresses have also been sent to Erin who will be in contact with you soon.

That was fun and it generated a lot of conversation too. I'll see if I can find another good book to do this with soon.

CHEMOTHERAPY UPDATE
My friend Jan Adams, who blogs at Where is the Way Forward, has been walking the Camino de Santiago while visiting Spain this summer. She took the time to email this photo of a purple awareness ribbon at the Ministry of Health building in Madrid.

Purple ribbonMadridJan680

”I have been unable to confirm that this display of the purple ribbon on the Ministry of Health was really about pancreatic cancer,” she writes, “but as soon as I saw it, I wanted to capture it for you.”

And I'm thrilled to have it even if we don't know if it is meant to be for pancreatic cancer. That's because there seem to be more diseases than colors to go around and you can see the long list of them that use a purple awareness ribbon here.

Jan's photo gives me an excuse to update you, dear readers, who have emailed or left comments asking how I'm doing. I haven't written much about my cancer treatment lately because there is so little to say – which is, of course, good news.

I began chemotherapy infusions on Wednesday 13 September, repeated on each of the two subsequent Wednesdays. Also on those days and every other day of the week, I take two tablets in the morning and again in the evening of an oral chemo drug. This is my week off from infusion treatment, then I start another round of once a week for three weeks while continuing the daily oral chemo.

Did I mention how gruesome a few of the potential side effects can be? How about the dangers of infection due to a drop in the number of my red and white blood cells and platelets from the chemo? And other possible signs and symptoms that can even require an emergency room visit?

Many of you who have commented here about your cancer treatments are way ahead of me in knowing all about this stuff. Me? I'm still new at it, still learning.

But as I enter the third calendar week today of my six-month chemo treatment, I am – knock wood, cross fingers, light candles, etc. - side effect free. Whoo-eee! In fact, I have been feeling so good in general that sometimes I wonder how that can coexist with such a virulent cancer.

The hard part is how busy the chemo team keeps me even when I'm at home. I have pills timed 30 minutes before meals, with meals, 30 minutes after meals, some in the morning, some in the evening and one to take before every meal or snack I eat for the rest of my life along with two or three others I will need daily for as long as I live.

Here is a photo of what is, apparently, a permanent new feature of my kitchen:

MedicationTray

Also, there is lotion for my hands and feet throughout the day, mouth rinses, exercises to keep up my strength and those six meals a day. I haven't been able to do six, but I can usually manage four and sometimes five.

Don't even ask about the food restrictions. I'm experimenting carefully and have been able to add a few “new” foods but mostly, for the time being, meals are boring and repetitive.

But guess what? I'll take it. I'll take it all (with some whining) because compared to what others in my condition go through, I'm getting off easy.

GRATITUDE
Given how dangerous and aggressive this cancer is, I know how lucky I am, and my gratitude grows by the day. Here is partial a list of why:

Only ten percent of people diagnosed pancreatic cancer are eligible for the Whipple surgery which is pretty much the only thing that can help. I am one of those few.

Although it seemed to take forever, I healed relatively easily from the surgery and have been back to full physicial capacity for well more than a month.

My chemo treatment takes only an hour once a week. Some at the clinic sit there with an infusion going for eight or ten hours and/or do it several times a week.

So far side effects from the chemicals have passed me by.

I am old enough for Medicare which pays for all but a small amount of this expensive treatment.

I happen to live where there is a world-class cancer institute with renowned physicians, nurses and other healthcare professionals highly experienced in my kind of cancer.

And I have you, dear readers of this blog, who send greetings of good cheer and hugs and light candles and wish me well every day.

What makes me even more grateful in that regard is I'm not even all that likeable. Among other failings, I am short-tempered, cynical, cantankerous, impatient, judgmental and more.

Thank you all so very much for being on this journey with me.


Crabby Old Lady Writes About Her Cancer

Handwriting

You've read it here more than once – that Crabby Old Lady never wanted to become a professional patient, and in the time following her diagnosis of pancreatic cancer in June, she has fought against it mightily.

Well, phooey. It has been a futile effort from the get-go that Crabby should have known better than to try. This isn't a broken bone that will heal in a few weeks or a new knee.

So today we have another chapter in Crabby Old Lady's attempts to adjust to her new situation in life. Some in the news business would call it a thumbsucker but Crabby, as always, is helpless against E.M. Forster's dictum, “how do I know what I think until I see what I say”.

Don't take any of this too seriously yet. Some (many? a lot?) of these thoughts, complaints and feelings are new to Crabby and therefore, by definition, half-baked. No doubt there will be revisions.

In the three months since those terrifying words, pancreatic cancer, were said out loud, Crabby is only gradually realizing how much her life will be permanently different. It is much more than she expected or wanted.

Crabby will spare you the lists and just say the nuts and bolts of living with this disease and the results of the surgery average out to a couple of hours a day, every day – hours for which she had other plans. Certainly she has seen more doctors more frequently than all such previous encounters combined.

Six months of weekly chemotherapy begin a week from today and for the past 10 days or so Crabby been buried in reading matter about all the awful things it might do to her, how she can help prevent some of them and which of those side effects are medical emergencies to be addressed immediately.

Elsewhere, Crabby's life is now controlled by lists of what she can and can't eat, keeping medications straight, phone numbers she might need and more.

This stuff is exactly what she never wanted in life. But here's the thing: for all these years of studying ageing, being as healthy as she was until now, Crabby never really “got” what most old people live with. According to Kaiser Health News,

”The majority of adults 65 and over have multiple chronic conditions that contribute to frailty and disability, according to a 2013-14 report from the Centers for Disease Control and Prevention [pdf].

“The percentage of chronic conditions among people 65 and over has increased over time, too. The percentage of people reporting hypertension, asthma, cancer and diabetes was higher in 2013-14 than in 1997-98, reports the CDC...

“About 57 percent of women and 55 percent of men age 65 and up reported hypertension. Another 54 percent of women and 43 percent of men reported arthritis.”

Obviously, Crabby Old Lady was lucky for the first 76 years of her life and she never fully appreciated how much time chronic diseases and conditions steal from elders' lives nor the personal effort required day in and day out to maintain as much health and well-being as possible.

Having spent a great deal of time thinking over all this, Crabby has come up with a few new words to live by:

Get over being a professional patient. It is what you are now. Live with it.

Accept the changes the disease is placing on daily life. They are your new normal.

Focus on what is possible now, not how life was before.

Crabby suspects that many of you, dear readers, have already been there, done this and Crabby Old Lady is just now catching up with you.


Chemotherapy School

One day last week, I spent an hour and a half at chemotherapy school, given at the OHSU (Oregon Health & Science University) clinic where my chemo will be administered.

They handed out a large Powerpoint deck at the class and I already been given a giant binder the week before with pages and pages and pages of lists and commentary on what to expect, what to do and other instructions to follow during chemo treatments.

ChemoBinder

Huh? Why didn't you guys who've been through this (and according to your comments here, there are quite a few of you) tell me that chemo is a full time, 24/7 job for the next six months?

Until now, I thought it would make me tired and maybe sick for a couple of days after each treatment. But oh no. All kinds of terrible things can go wrong and there are a dozen or more preventive measures plus a lengthy list of side effects a few of which require immediate emergency attention.

For that last item, they prepared a page to post on the refrigerator door for easy reference. Oy. I had no idea.

RefrigeratorList

Of course, these are generalized documents meant for all chemotherapy patients and which side effects an individual is subject to varies with the chemo formula. Some people escape with none or hardly any difficulties. Nevertheless, it is daunting. Among the possibilities:

Decreased blood clotting ability
Irritation of the entire gastrointestinal tract
Nausea and vomiting
Constipation or diarrhea
Neuropathy
Chemobrain
And my personal favorite (that's snark, folks), Hand-foot syndrome

That's when the soles of your feet and the palms of your hands become red, can crack and develop blisters. The prevention, they tell me is to take tepid, not hot baths and showers, and to wash dishes in tepid water.

That goes with the admonition that chemo compromises the patient's immune system so to avoid infection, one must wash, wash, wash hands constantly.

All that washing, of course, exacerbates hand-foot syndrome so there is a specific kind of lotion to gently rub on hands and feet several times a day. I can't wait – recall what I said above about chemo being a 24/7 job.

All right, I know I'm whining and I shouldn't. For someone with one of the scariest of cancers, I'm incredibly lucky. I am among the only ten percent of pancreatic cancer patients eligible for the Whipple surgery I had.

And now that I am facing chemotherapy soon, they tell me my “dose” will take about an hour to administer. Some people need six or eight hours each time. I am so grateful for these two pieces of luck.

Plus, all these and many more additional instructions, warnings and admonitions come with the care and concern of the medical staff based on their collective years of experience with chemotherapy patients in one of the best cancer centers in the United States.

But still, you could have mentioned this stuff to me. Okay, I'll shut up now.