103 posts categorized "Cancer"

Crabby Old Lady Tries to Manage Her Disease

TGB readers generate a lot of good ideas for blog posts, sometimes without knowing it. The latest that caught Crabby Old Lady's attention is pretty much a perfect fit with one of the tenets of TimeGoesBy – that we talk about old age things here that nobody ever tells us will happen. We discover them the hard way.

About a week ago, Patty-in-New-York left, in part, this comment:

”Reading this post,” wrote Patty, “I was struck by how complicated it is, managing your illness.”

No kidding. As soon as Crabby read that, she realized such thoughts have been rolling around in her head for some time, just slightly out of reach. Patty's note made them manifest along with instant understanding that Crabby is far from the only old person doing this.

MEDICATIONS
Start with medications. It's not just the pills themselves, it's how and when they are taken. Crabby has one that she takes first thing in the morning. Another – a double dose of two pills - to take 30 minutes before breakfast.

There are five or six more she takes at the beginning of that meal, and another pill that she must take before every meal and every snack she eats; it is crucial to replacing the enzymes her body can no longer produce on its own.

Then there are the evening pills. Some related to the evening meal, others not. Oh, and one more – Crabby takes cannabis in a variety of forms an hour before she intends to go to sleep to relieve the insomnia she lived with for many years.

Crabby counts out all these into little pillbox containers every Saturday for the coming week. She's been doing this now for two years. It's boring. Really boring. Crabby sighs a lot on Saturday when she counts them out.

Since the breathing problem appeared, Crabby has been on an inhaler four times a day which is now plugged into her schedule with the pills and altogether, they go something like this: 6AM, 7AM, 10AM, noon, 2PM, 6PM and so on. It means being in almost constant communication with a clock all day every day.

About a year ago, Crabby needed to inject a solution into the fat in her belly twice a day for two months. This is not fun and the longer it went on the fewer “clean” places there were to stick the needle. Thank god she didn't need to find a vein.

WEIGHT
As Crabby has undoubtedly mentioned, cancer and chemotherapy eat up energy (calories) faster than a healthy body and weight loss can quickly lead to frailty. Crabby is regularly admonished by the nurses and doctors to eat lots of protein and animal fat and if she is not eating enough, weight slips off her body like water after a shower.

So first thing every morning Crabby weighs herself, marks the number on the chart she keeps and adjusts her eating for any given day on whether her weight is heading up or down.

NORMAL ACTIVITIES
Start with the aforementioned shower. For reasons Crabby doesn't understand, showering leaves her breathing hard before she's halfway done. She is completely baffled as to why standing mostly still while lovely hot water falls over her body should do this.

Making the bed since the breathing problem appeared is a long procedure; Crabby needs to sit and rest two or three times when straightening the covers, and don't even ask how many times she rests while changing the bed.

Even getting dressed sometimes requires a rest period to get her breathing back on course.

Carrying groceries in from the car? Crabby used to just grab all the bags, even six or seven of them, and walk them into the house. With the breathing problem now, that many bags requires at least three trips with a 10 minute rest between each one.

Further – again, associated with the breathing difficulty - even standing still can be exhausting. It still surprises Crabby every time she washes the few dishes one person generates that she's breathing hard before she's halfway through two plates, a cup, silverware and a pot or pan.

Often, just bending over to pick up a dropped pen or pencil results in a few minutes of heavy breathing.

In comparison, laundry is relatively easy. Throw it in the washer with the soap, then dump it in the dryer. Crabby can manage folding with only a couple of rest periods.

OUTSIDE ACTIVITIES
Mostly, Crabby can manage only one trip from the house per day (she has come to think of them as expeditions) to do the grocery shopping, a medical appointment, lunch with a friend, etc.

Nowadays, Crabby takes stairs slow and easy, trying to avoid them if at all possible. Even slight inclines in the pavement for a few feet leave her exhausted and breathing hard.

And it's more than just the physical activity and driving; there is a kind of psychic fatigue at being away from home that piles onto “normal” sluggishness resulting from what it takes to get through a day now.

TIME SLIPS AWAY
All of this, and more that she skipped over telling you, eats up hours from Crabby's day, especially when she's tired enough to need a nap. But she signed up for it and shouldn't complain – at least, not too much. She can ditch all the treatment at any time and let the disease take its course. No one is stopping her.

So far she is willing to live this way although what she lately misses most is personal time. She goes brain dead by about 3:30 in the afternoon which means that in addition to household maintenance for the day, she is done with books, magazines, the internet, email, writing the blog – anything that takes mental power.

Speaking of email, a goodly amount of it arrives daily with messages, questions, suggestions and other missives from readers that need at least a “thank you” if not a longer response.

But there comes a time in the afternoon – usually around that 3PM mark – when Crabby cannot sit at the computer for one more moment without crashing. Her body is done for the day.

When that happens, unanswered email is likely to go unanswered indefinitely as it gets mixed with all the new stuff that drops into the inbox and as Crabby just described, there are many fewer hours in her day than there once were. She tries, but she hopes you will understand if you don't get an answer.

YOUR TURN
One of the few things Crabby Old Lady has learned over time all by herself is that if it is happening to her, it is happening to a lot of other people.

Crabby isn't the only denizen of TGB who struggles with managing a chronic or deadly disease (or "just" getting older) and she wonders what you do to keep it all together. How do you deal with needs, limitations and surprises old age inflicts?




Dreaded Diseases and Attitude

You may think you were talking about ice cream last week on the post titled, An Unexpected Anniversary, but you also reinforced a thread that's been common here since I first wrote about my diagnosis of pancreatic cancer two years ago.

Readers use such words as “honesty,” “insight,” “inspiration,” “courage" to describe my attitude. They reference “Superwoman” sometimes. They admire my efforts to “beat” cancer (which I try not to do). And they have all kinds of other ways to praise how I deal with this serious predicament. You can imagine, I am sure, how I preen when I read them, even sitting alone at my desk.

Maybe my lack of anything more than a passing response - a "thank you" here and there - has been brought on by my inability to find an adequate group of words to express my pleasure and gratitude but that's not a good enough reason or even excuse.

Such kind thoughts and words as yours, especially uttered in obvious sincerity, should not go unacknowledged and certainly not for two whole years. Yet, here we are in that situation of which I hope to remedy at least a little bit today.

Let me start in my childhood, my parents. Both were orphans with no siblings who came of age in the middle of the Great Depression. There were times they went hungry. They had few material goods and not much love from the adults in their lives.

Sometimes they related stories about their childhoods but never, ever complained. To them, it was what it was and you were expected to observe, accept and carry on. My parents believed it is up to each of us personally to do the best with what life throws our way – you cannot expect others to help.

This came to them, I think, naturally from their early circumstances and both probably would have been surprised to know that their “observe, accept and carry on” attitude was closing in on being Buddhist-like.

I didn't realize that until I spent a year or two in my twenties studying Buddhism – not particularly to become an adherent but to understand something so different from what (little) I knew then of western philosophies.

No one much loved either one of my parents when they were children. They were not hugged or kissed often if at all, and I realized as an adult that neither were my brother and I because our parents didn't know how.

They found it mildly embarrassing to express loving emotion, as I still do to a degree these many years later, although I've tried to shed it.

In my parents' early lives, I'm pretty sure that when you are scrabbling for adequate food every day, emotional issues don't matter much. And I doubt you ever forget going to bed hungry.

All that baggage my mom and dad brought to parenthood teaches you, as their child, a great deal of independence at a young age; you realize that you must rely on yourself for whatever emotional sustenance and well-being you need.

I've tried to change this mindset in a variety of ways over many years but mostly I've done "it" – that is, living - my way all these 78 years much, I guess, as my parents did. (The apple falling not far from the tree, etc.)

How far have I gotten with this exercise? Well, I'm pretty good, finally, at accepting gifts but not so much gifts of personal time as I received so much of from friends and neighbors during my months' long recovery from the Whipple surgery.

One thing that gets in the way is that I always, always worry that I will not be able to repay the help and kindness, so I had better to do without than deal with the shame if I cannot reciprocate.

But blessings on those wonderful people who force their help on me when they see the need. They are saints to get past my resistance.

To those of you who would tell me I'm being foolish, I don't disagree. I just haven't been able to change these things in my 78 years.

Although I tried to sort out some of my issues in a couple of short bursts of therapy long ago, I don't much believe in psychology, at least not to get past such emotional problems as I inherited. I've tried to be self-aware day-to-day and monitor what's bothering and not bothering me. Sometimes it has helped and just as often not.

Life is what it is. Nobody ever promised you a rose garden. Or, as my mother often said, “Into every life some rain must fall.” Just as frequently, especially when I was whining over something that had gone wrong, she would recite, “I cried because I had no shoes until I met a man who had no feet.”

Maybe more than anything else in this post, that paragraph sums up the philosophy of life that was instilled in me way back when: Buck up, life isn't easy.Deal with it.

So. I am good at absorbing the slings and arrows life flings our way from time to time but quite practically, what else is there to do? I keep going without much thought about why. It is who I am and, as far as I can remember, always have been. I was born this way.

When tough things happen, I go off somewhere alone and wallow in it. I don't want to talk. I don't want advice or hand-holding. I want to be alone with whatever the current problem is. To wail and weep can be part of the process and you would be amazed at how well that works in brightening one's days.

By the time I crawl out from under the quilt – hours or days later – I've reached acceptance. I don't claim any Buddhist influence but my pattern seems to follow their “observe, accept, carry on” belief and it has worked that way for me.

What flowed from that routine this time is a deep curiosity about what the end-of-life is like when you know it is coming relatively soon. It has become a kind of purpose for me, to chronicle these weeks, months, years(?) and I would be doing it for myself alone if I did not keep this blog.

Now, apparently, I have been granted extra time beyond what statistics suggest which I see as a gift to learn even more about life and about death. I have come to believe in these two years and since my psylocybin session last December that life and death are one but that's another story.

If some of you who read and write all these lovely words like bravery and amazing or inspirational along with other kind words, I am so pleased if I can help you on your personal journeys. Thanking you for your messages seems too little for what you have come to mean to me so perhaps this explanation is a bit more I can offer to keep with my genuine gratitude.

On that ice cream post last week, reader Carol Leskin had this to say:

”What continues to amaze and inspire me is your ability to find some ray of sunshine even when it is almost dark. In this case, ice cream. Some say a positive attitude and hope are critical to successful outcomes and prolonging life. Others think that is malarkey. You have made a strong case for the former.”

Until recently, I had spent a lifetime living the “malarkey” end of that dyad. Without feeling any need or desire to give up my atheism, I'm admitting to myself these days that maybe, just maybe, there is a little piece of the ageless universe somewhere that I belong to and am part of.

Perhaps the extra time the good medical treatment I have been receiving is that universe's way of telling me I have a bit more to do before I go. (I cannot believe those sappy words came out of me just now but there you are – strange things can happen when they tell you you're dying.)

Or, as reader Cathy J quoted author, Thornton Wilder:

"My advice to you is not to inquire why or whither, but just enjoy your ice cream while it's on your plate."

Thank you all for the good words and kind wishes with which you enrich my life (and death).




An Unexpected Anniversary

This is a big-deal, important day for me. A time to celebrate: It is two years ago today that I was diagnosed with pancreatic cancer.

Let me explain how amazing that is. Only about 10 percent of pancreatic cancer patients are even eligible for the Whipple procedure, an extensive surgery that is the only treatment for this cancer. Of the patients who undergo the Whipple many, like me, follow up with chemotherapy and/or radiation.

According to several medical websites, the five-year survival rate after a Whipple procedure is about 20 to 25 percent. My surgery took place two years ago minus three weeks from today.

The downside is that for the past five or six weeks, I have had a terrible breathing problem. Sometimes I can't get to the mailbox or even from the back bedroom to the kitchen without needing to stop a couple of times to catch my breath.

I saw the oncologist earlier this week. It has been difficult for them to book a pulmonologist in a reasonable length of time (NOT September) so they are doubling down to find an earlier appointment for me to deal with this breathing difficulty.

Meanwhile, I'm on an inhaler which helps a little but I still can't walk more than a few feet without need to stop to catch my breath. Really irritating.

The oncologist has halted my chemotherapy for two months (four infusions) because it is affecting other organs including my heart. The pulmonologist will address these breathing issues.

So I'm on hold until a pulmonologist is found to see me soon but the oncologist, referring to my life-span, appears to think I'm not going anywhere anytime soon either.

One difficulty with cancer and chemo is that both of them eat up calories faster than a healthy body but it is important not to lose weight. This is not easy since the disease and chemo also steal the patient's appetite. I have a new pill now which improves my appetite – no more forcing food when I feel full.

But here's the best news. The particular kind of chemotherapy I've been taking precludes eating or drinking cold foods and drink because the chemo, in those instances, closes up the esophagus. But now, the next couple of months without chemo means I can – wait for it - EAT ICE CREAM AGAIN.

Ice cream's high calorie and high fat count will go a long way toward helping keep up my weight and even better, it's one of my two favorite foods.

So hurray for me. And hurray for all of you who have been supportive in so many ways since this disease interrupted my otherwise long and healthy life two years ago.

Thank you all for being there for me through these two years. Maybe you'll share some ice cream with me.




A Mini-Vacation

As I mentioned two Fridays ago, at the oncologist's suggestion I am skipping one chemotherapy treatment just to give myself a little break, a vacation if you will, from the effects of the chemo drugs.

That means four weeks between treatments instead of two and today (Tuesday), I am part way through the third week giving me about 10 more days before the next chemo session.

It feels like such a luxury to have this time. What the chemo is doing for me so far – reducing the size and number of visible cancer nodules – is more than I expected and I'm a little worried that interrupting the infusion schedule might change that. But not so worried that I'm not enjoying every minute of this time.

So this is just filler and there's no need to respond in the comments – unless you've got something you want to say. About anything.




Living with Cancer

Saul Friedman

Let me tell you about my friend, Saul Friedman. Born in 1929, he was a life-long political journalist, reporting for some of the major news outlets in the U.S. - the Houston Chronicle, Knight-Ridder, Newsday and more.

In 1968, he shared a Pulitzer Prize for team coverage of the 1967 Detroit riot, for the Detroit Free Press.

I was privileged and proud when, in November 2009, Saul chose to relocate his bi-weekly Reflections column from Newsday to Time Goes By and added a second weekly column just for us TGB older folks, Gray Matters.

His final column, titled “Gray Matters: Small Miracles”, was published on 18 December 2010, chronicling his years living with cancer.

Saul died of a type of stomach cancer on 24 December 2010. I think you might like that last column – this link will take you to it.

Here we are now these almost 10 years later and it is I who lives with cancer. As Saul well knew, even when chemo or other therapies are going well and even when you feel fine between treatment sessions, the word, the idea, the reality of cancer is always hanging around making a low buzz at the edges of one's consciousness.

Since early January, I have been taking bi-weekly chemo treatments that last all of one day at the chemo clinic and continue with a personal body pump strapped to me for two more days.

So far, these have been remarkably successful, having reduced the size of some of the cancer nodules and maintained that through all the treatments so far. They also make me extra tired so that I nap a lot for a few days, kill my appetite so I lose weight that I can't afford to do and give me a few other, minor side effects that fade within a few days.

The result is that I have about 10 days between the bi-weekly chemo treatments that are almost normal. And don't think I don't appreciate it.

When I met with my oncologist a couple of weeks ago, he suggested that I might want a bit of a rest from the chemo and that I could skip one treatment giving me four weeks between treatments instead of only two.

At first, I rejected the suggestion out of hand. The chemo has been working so well, I thought, why take a chance of disrupting its efficacy. But then, as chemo brain was lifting and other side effects from last week's infusion were fading, I kept thinking about what a nice, little, two-week respite it would be.

And so I have until the end of this month to be chemo-free for which I am grateful.

It is already a good-sized miracle that I am still here. About 90 percent of people diagnosed with pancreatic cancer die with a year.

When I recently realized that it has been almost two years since my diagnosis, I went back to re-read some of Saul's columns about life, death and cancer.

Here is a snippet from one titled, “Reflections: My Companion, Cancer” about how hardly any progress had been made toward curing cancer:

”The moon landing, accomplished in eight years, the Manhattan Project, successful in less than ten years, the eradication of malaria in the U.S., cures for tuberculosis and polio, were American accomplishments in the 20th century. I see no such effort focused on the most vicious killer, cancer.

“You might say I have a vested interest in this. That would be wrong. Unless someone comes up with a magic bullet tomorrow, I will have to live with my constant companion and take my chemo and hope. But too many people, and some of whom you know, are suffering and dying around us.

“I remember what it was like before and after Salk. I’d like my kids to experience that feeling, when the fear of a disease is lifted.”

And this from Saul's final column linked above is less about reporting and more about – well, small miracles. (The “both” he refers to in the first sentence is the brilliant author, political journalist and literary critic, Christopher Hitchens, who died in 2011 of esophageal cancer.)

”Both of us owe our cancers and/or the cures not to divine intervention, but to the miracles of illness and health. They are life affirming.

“Life, illness, happiness, good fortune and bad, even good and bad presidents (I have covered) are all part of what the 11th Century Persian poet Omar Khayyam had in mind when he wrote, 'Be happy for this moment. This moment is your life.' And,

”That inverted bowl they call the sky,
Where under crawling, cooped we live and die.
Lift not your hands to it for help,
For it impotently moves as you or I.”

If, as I sometimes wonder, I am making some small difference for others as I ruminate on and write about my cancer journey, Saul even had something to say to me about that - from the same column:

”The point of all this, in a season made for reflection, is to tell the story of how it feels to become and stay old for one very lucky older American, for most of us, despite and because of illness, embrace life more fully than ever.”



The Alex and Ronni Show Plus Medically Assisted Suicide

Yesterday, my former husband, Alex Bennett, and I recorded our biweekly video. We caught up on my condition with pancreatic cancer and talked a great deal about Jeopardy! host Alex Trebeck's recent diagnosis of the same disease.

We also spent some time on climate change, on both Trebeck's and my personal feelings of our great, good luck having so many people who send us much love, concern and care about our disease. We even managed to sneak in a short mention of “Jeopardy James” at the end. Have a look:

In the comments on Monday's post titled, High Rates of Suicide Among Elders, TGB reader Ellen asked,

”Are you, Ronni, considering suicide? I support whatever decision you make. Realize also that there is a suicide hotline phone number. Call them first.”

Not “considering suicide” it, Ellen. I have chosen it – medical aid in dying - when the time comes.

Although we have discussed this before on this blog, it has been awhile. I live in Oregon which more than 20 years ago passed the first “death with dignity law” - also known as “physician-assisted suicide” and “medical aid in dying” along with a few other names.

In April this year, New Jersey's governor signed a bill making that state the eighth to allow terminally ill patients to request prescriptions from their doctors for medication to end their lives. It will go into effect on 1 August.

Of course, using these laws is a bit more complicated than just saying, “Hey doc, I'm ready for those pills.”

All the states that allow medical aid in dying have similar restrictions in place. Among them:

The patient requesting the drugs must be mentally competent

He/she must have fewer than six months to live as diagnosed by a physician

The patient must initiate the request for the drugs

The request must be confirmed by two people who are not the patient's physician nor employed by the health care facility treating the patient

If the patient wishes to proceed, he/she must wait at least 15 days before making a second request

The patient must administer the drug him- or herself

Wikipedia has a good short overview of how the laws generally work.

The State of Oregon's website, About the Death With Dignity Act, has pretty much everything you would want to know about it. Here are links to the pages about the laws in the other states that allow it, where there are also links to more resources:

California
Colorado
District of Columbia
Hawaii
Vermont
Washington

I will do a more thorough post about medical aid in dying but if you are interested in knowing more now, this will get you started.




Cancer, Chemo or Old Age?

That's the question I spend some of my time trying to figure out. A new pain in my elbow. Nausea if I eat one more bite. A nose so runny I use up one-and-a-half boxes of Kleenex in a day.

I'll go with old age as the cause of a pain in an elbow. Nausea is probably from the chemo. And who knows (nose?) what's causing my constantly running nose.

I suppose it doesn't matter. Cancer, chemo or old age doesn't change the fact of whatever is bothering me. But it might be helpful to know which does what so that perhaps a medication can be adjusted - although I'm not pretending that symptoms at this simplistic level can in any way be compared to pancreatic cancer.

When I was first diagnosed two years ago, my idea was to follow the instructions of my various physicians and nurses while making preparations for my death. The statistics tell the irrefutable story: fewer than 10 percent of pancreatic cancer patients live beyond one year after diagnosis so I've already won this lottery.

Time went by. It took nearly a year to entirely recover from the 12-hour Whipple surgery. The pain I experienced then was anything but a mystery: 22 surgical staples along with the removal and/or rearrangement of several organs.

Some chemo followed but was stopped when it was deemed ineffective. Eventually, my current chemo regimen began and so far, as I have reported here, it is working well and – amazing – with each treatment the side effects have lightened or disappeared.

Just like not knowing what is responsible for my improved chemo side effects, I have no idea how long this situation of such a good response to the chemo will last. It will end at some point; I just don't know when.

The only thing I think I know about living a reasonably untroubled daily life with such a noose hanging over me is that I must find a way to make peace with it. Which is pretty much the same thing as making peace with dying.

The psilocybin session I underwent in December, the benefits of which so far are holding strong, get me partway there. The rest is one of the passages people in my predicament have to deal with several times.

It's doubtful that any of this is unique to me. I'm just surprised that no one I can find talks about it. Does anyone reading this know what I am not too clearly trying to say?




Crabby Old Lady, Sales People and Cancer

Earlier this week, in the mid-afternoon just as Crabby Old Lady's energy was beginning to wane for the day, there was a knock at the door. The conversation went something like this (paraphrased):

TALL YOUNG MAN WITH CLIPBOARD: I want to talk with you about renewable energy.

CRABBY OLD LADY: I could use some of that this time of day.

TYMWC: (blank look)

COL: Never mind. It was meant to be a joke but didn't turn out well.

TYMWC: Our records show that you have assigned only part of your electric bill to renewable energy and...

COL: (interrupting) Wait. Your “records”? Who are you? What company do you represent?

TYMWC: You wouldn't have heard of us but we've been hired to let electricity customers know...

COL: (interrupting) That's all? You could have phoned or sent an email, even a snailmail letter.

TYMWC: (word salad about how Crabby Old Lady could help save the planet just by changing her electric bill choices – sign right here, ma'am)

COL: Are you kidding? You won't even name the company you work for.

Varieties of people arrive at Crabby Old Lady's door with some regularity if not frequency. There are sales people like today's example, dubious charities and, at election time, political candidates.

Most try to make their point and they politely move on when Crabby gives them the brushoff. TYMWC was more determined than others and less polite too.

TYMWC: Are you sure you want to be left behind, to be part of the problem of climate change and not the solution?

Crabby isn't sure about this but perhaps desperate times require desperate means. If so, this still is not the way to do it.

Ticked off at TYMWC's attempt to shame her, Crabby pulled off the watch cap she keeps by the door to wear so that her bald head doesn't scare whomever is knocking.

“Let me tell you how it is with me,” she said. “Priorities change when they tell you you're dying of cancer and whatever it is you're selling doesn't interest me these days. So leave. Please leave. And take your self-righteous hubris with you.”

And without a word, he turned on his heel and walked away.

This is not to say that people with a deadly disease should use it as an emotional bludgeon. But there are some people who just deserve it. Crabby did that without any thought, on the spur of the moment and she's glad she did.




What Do You Do All Day in Retirement?

It's one of the most common questions we get in old age: what do you do all day? Working people who spend at least half of their waking hours trading expertise for money can't imagine how old people fill the time.

I don't recall specifically, but I probably wondered about that when I was working age. Now, after 15 years in retirement, I have a pretty good handle on how those former work hours (and more) easily get used up.

Cooking along with the accompanying shopping, storing, cleaning up, etc. fills a lot of time. I don't eat out as frequently as when I worked

Always a news junkie, I read it more thoroughly and carefully now – at least a couple of hours a day, often more

As the years pass, I've gradually become slower so it takes longer to do everything

These days, I tire more easily than when I was working and often indulge in an afternoon nap. An hour, sometimes two, disappear

Reading books and magazines I once had time only to skim. So do research and writing the blog, trying to keep up with email, and don't get me started on technology glitches that need attention

And so on.

A couple of facts about old people's health from the U.S. National Council on Aging (NCOA):

Approximately 80% of older adults have at least one chronic disease, and 77% have at least two. Four chronic diseases—heart disease, cancer, stroke, and diabetes—cause almost two-thirds of all deaths each year.

Every 11 seconds, an older adult is treated in the emergency room for a fall; every 19 minutes, an older adult dies from a fall.

The variety of federal, state and local agencies that deal with elder health issues have a lot of facts, some effective advice and thousands of pages of information on the internet.

What they don't mention is how busy those chronic diseases keep us, how much time they steal from our retirement.

In the two years since I was diagnosed with pancreatic cancer, the care and feeding of my remarkably decent health (I'm grateful every day) takes more time than I would ever have imagined. Some examples:

Counting those damned pills into their little boxes. Ten days ago or so I rebelled, didn't sort them for the coming week and therefore had to do it three times a day. Stupid of me. Obviously. But I needed the break from routine even if it did cause more work

As the nurses and physicians told me way back in 2017 following my Whipple surgery, I must eat a LOT of food – the point being not to fall into frailty

Both cancer and chemotherapy drugs use up energy (and therefore, calories) faster than a body without cancer so “eat, eat, eat” they old me

Eat lots of protein, lots of fat and don't worry about lack of green food. “Food is medicine,” they said to me, and “The cancer will kill you long before this diet will”

I spend huge amounts of time preparing food to try to eat when I've lost my appetite for three or four or five days after chemo.

Simple household chores take what seems like forever particularly for a few days after chemo. I need to sit down to rest twice during those days while making the bed. Changing the bed? Don't even ask

Let's not forget two full days a month are gone – seven or eight hours each – of chemotherapy. Sometimes I'm exhausted enough for bed all day for two or three days afterwards and sometimes not, with no way to predict

Another five or six appointments each month with half a dozen medical specialists who seem to be required to treat cancer. It's a good thing I've come to like all these people – and the others, nurses, medical assistants, schedulers, etc. - and in a certain sense they have become friends

I wear out for the day by mid-afternoon which means I must get all the blog work and everything else in my life done by then. By 3PM, I can't even focus long enough to read anything longer than a short magazine or newspaper story

Enough. Any of you who have your own chronic disease(s) to manage every day know all about this.

Given that I have lived longer than the doctors imagined I would and who are predicting even more healthy time for me, I feel like a churl when resentment of the hours and days the maintenance involves overtakes me.

I try my best to get past it quickly. I can't be the only old woman (or man) who sometimes longs for the carefree, healthy life I lived for so long. What about you?




Cancer Update Plus The Alex and Ronni Show

Thank you for all your lovely birthday messages over these past couple of days. Friends, my son, grandson and neighbors came by on Sunday with lots of wine and food and a good time was had by all.

My apologies for the emails I have not answered. I've been extra tired this time from the chemo infusion last Thursday and I just ran out of steam. Know that I appreciate every one of you and read every message.

I never believed I would make it to this birthday, number 78, and that's not hyperbole. I didn't think I would live this long but here I am and I'm going to stop predicting – what will be will be.

And now I have some cancer news.

Remember two months ago when the CT scan showed that cancer cells had shrunk and some were not visible at all?

This time, last week, the new scan was almost as good as that one – so much so that the oncologist ordered up the next scan to be done in three months rather than the two we've been doing. And he said this too: “You're going to be with us for a good while yet.”

Woo-hoo.

Okay, I don't know the definition of “good while” and, probably, the doctor doesn't either. But it's good to hear anyway.

My former husband and I recorded our bi-weekly chat, The Alex and Ronni Show yesterday. It says some of what we've talked about in this post, but here it is.

It was a nice little vacation from blog work but I'm happy to be back in the groove.




When Cancer Becomes the Norm

On Saturday, I woke as usual at about 6AM, worked my way through my customary personal hygiene routine, dressed for the day and went directly back to bed.

You can be forgiven for thinking that's hardly noteworthy but you might change your mind when I tell you that in my 78 years, I have never – not once - done that.

That's because there is no telling nowadays when I will get tired; I've learned to indulge myself when I need to.

I've had more time than I realized to slip into that frame of mind. It was a surprise when, a few days ago, I noticed that it has been nearly two years since I was diagnosed with pancreatic cancer. Twenty-two months to be exact.

Few people in my predicament live that long. Pancreatic cancer is one of the rarest and most deadly cancers - only 10-15 percent of patients are eligible for the Whipple surgery I underwent as soon as the disease was discovered. Even with that, only 25 percent of people who have the Whipple are alive five years later.

But here I am, grateful for the additional time granted me but wondering if I am using it wisely. (Dear god, as I lie dying on my last day, I do not want to be shouting, “Wait, wait, there's something I forgot to do...”)

If I believed in other-worldly things, this feeling that I may be neglecting an important task or obligation, even if only for myself, would exist in a different context.

But either way, death is one of the two biggest events in life. I can't recall the first and I don't want to make a hash of this last one.

While I've been working through all this, the care and maintenance of cancer has become my norm, taking up more time than I would have guessed before this happened to me.

I've become accustomed to being bald – I hardly notice my naked pate in the mirror anymore but it's a whole different thing to enjoy wearing hats versus needing one so you don't scare people..

Counting out 16 pills a day into their tiny, little boxes gets more boring and therefore irritating each week. Worse is remembering to take them at the right times.

Keeping daily records of weight, blood pressure and any pain takes time I resent and too often I forget to do.

A daily mental inventory of how my body is functioning helps me manage daily life and still get everything done.

For example, for a few days after chemotherapy, my breathing problem is at its most difficult so I now organize trash take-out, vacuuming and bed changing to better days when I don't need to stop and rest two or three times in the middle of each task.

Tracking my body's requirements – when to rest, when to eat, what to eat, when to contemplate my predicament, etc. - helps keep me as healthy as possible.

Lately, I've been thinking more frequently about when it will be time to let go of all this and say goodbye. I feel good enough most of the time not to need to decide that right now but I ask myself if I will know when the time comes. I used to believe I would know; now I'm not so sure. I'm working on it.

Until the past two years I never did any of this. Now it (and more) is burned into my routine as much as brushing my teeth. I'm not happy about it but it's the trade-off for wanting more quality time.

I know many people besides me live with cancer or a different chronic disease or condition, and having now been there myself for awhile, I have gained enormous respect and admiration for them.

This isn't easy but we are stuck with it, and we are all old enough to know that sharing these things helps a lot.

As for the popular admonition not to talk about our troubles – phooey. When you had babies, you talked about about babies. If you got divorced you talked about that. When your kid got married, we couldn't shut you up. All to the good.

Excuse me now while I have a nap.




Cancer Test Anticipation

Back in mid-February, after two months of treatment with my then-new chemotherapy regimen, I reported this news from my doctor:

“'The CT scan shows the size of the lesions in your lung have decreased by half and some are no longer detected at all,' said the doctor. 'The one lesion in your peritoneum is not visible.'”

Woo-hoo. I don't have words to describe my relief and pleasure when the doctor told me that. Until that moment arrives, you wait and wait and wait, rocketing back and forth from fear and despair to confidence, then suddenly the answer is right there, right now, and in this case, it was spectacular.

Now, an additional two months have passed and it is time for another CT scan next week. I thought the wait period, having been through it before, might be easier this time, but no. As the date gets closer, I worry. I don't seem to be able to control that, but I do my best to enjoy these good days I'm having.

In a week or so, I'll have the new CT scan results. On my best days I believe the new pictures will be a repeat of those in February. Meanwhile, however, excuse me while I go worry. (I know I'm being an idiot but there is a little part of me over in a corner of my brain who believes worry is a requirement for making good things happen.)




Robot Doctor Tells Man He Has Only Days to Live

Three medical professionals walked into the examination room where I was waiting for them late last year – my oncologist and a registered nurse, both of whom I knew, and a social worker.

The four of us sat close together as the oncologist told me my cancer, after a period of remission, had reappeared in a lung and in my peritoneum, and that it could not be cured.

Particularly after a period of several months when no cancer had been detected, the news was, if not entirely unexpected, a stunner. I was shaken and I cannot imagine getting through the ensuing conversation about treatment possibilities without the doctor holding my hand.

That simple human gesture, the warmth and reassurance of another person's touch, is what anyone needs when being confronted with terrible news.

Nevertheless, last week, a dying man and the granddaughter who was with him in a California hospital room was informed he had only a few days to live by a robot doctor. Take a look at the phone video recorded by the granddaughter:

Seventy-eight-year-old Ernest Quintana died two days later. As CBSnews.com reported:

”Granddaughter Annalisia Wilharm, 33, was alone with Quintana when a nurse popped in to say a doctor would be making his rounds. A robot rolled in and a doctor appeared on the video screen. Wilharm figured the visit was routine. She was astonished by what the doctor started saying.

"'This guy cannot breathe, and he's got this robot trying to talk to him,' she said. 'Meanwhile, this guy is telling him, “So we've got your results back, and there's no lung left. There's no lung to work with.”

“Wilharm said she had to repeat what the doctor said to her grandfather, because he was hard of hearing in his right ear and the machine couldn't get to the other side of the bed.”

A hospital spokesperson later apologized to the family for the insensitivity but went on to say that the characterization of the live video physician as a robot was inaccurate. According to CNN,

”Gaskill-Hames, the hospital spokeswoman, said the health care provider is 'continuously learning how best to integrate technology into patient interactions.'

"'In every aspect of our care, and especially when communicating difficult information, we do so with compassion in a personal manner,' she said, adding that the term 'robot' is 'inaccurate and inappropriate.'"

In what world, I wonder, is it good and right and compassionate to hear you'll be dead in a few days from a screen? I can't be sure but none of the reports I read of this incident made mention that the “robot” checked to see that the patient was not alone when this news was delivered.

Having my hand held by the doctor while she told me about the change in my condition made all the difference to me. I'm not sure I could even have parsed the new diagnosis if I had been alone with a robot when the words were said. And how would I have asked questions?

For the record, I'm not against telemedicine in general; I think there should be more of it.

Often enough when I see one of my physicians, it's not for an exam or painful-to-hear information; it's a discussion of how I'm doing, how my body is tolerating chemotherapy, what concerns me that day.

We could as easily have that conversation via video and make an in-person appointment if that became necessary.

But to repeat myself: In what world is it good and right and compassionate to hear you'll be dead in a few days from a screen? And why wouldn't hospital personnel, who work every day with ailing, vulnerable people, already know the answer to that?




Alex Trebek and Pancreatic Cancer

You can imagine, I'm guessing, that every time the words “pancreatic cancer” show up in front of me online, they grab my attention.

Even though pancreatic cancer is rare compared to such cancers as lung, breast and prostate, it has an outsized impact on me and seems to appear in media headlines more frequently than one would guess for its small numbers.

Or maybe it's just my personal heightened awareness and knowledge of how lethal it is.

Whatever, it was a shock early last week to see long-time Jeopardy! host, Alex Trebek, paired in headlines with those dreadful words.

Within a day of the announcement, Trebek had issued a short video statement via YouTube. Here it is with the transcript below:

"Hi everyone, I have some news to share with all of you and it’s in keeping with my longtime policy of being open and transparent with our Jeopardy! fan base. I also wanted to prevent you from reading or hearing some overblown or inaccurate reports regarding my health.

“So therefore, I wanted to be the one to pass along this information. Now, just like 50,000 other people in the United States each year, this week I was diagnosed with stage 4 pancreatic cancer.

“Now normally, the prognosis for this is not very encouraging, but I’m going to fight this, and I’m going to keep working. And with the love and support of my family and friends and with the help of your prayers also, I plan to beat the low survival rate statistics for this disease.

“Truth told, I have to! Because under the terms of my contract, I have to host Jeopardy! for three more years! So help me. Keep the faith and we’ll win. We’ll get it done. Thank you."

Did you note the part about “stage 4”? That means Trebek's cancer has spread to other organs and, like mine, is not curable although chemotherapy and some other treatments can manage symptoms and improve quality of life for awhile.

It feels to me that Alex Trebek has been at the helm of Jeopardy! forever. (Actually, he has been hosting since 1984.) A strong, steady, down-to-earth presence in Americans' lives. How could this happen?

Ken Jennings, who won 74 consecutive games of Jeopardy!, wrote this about Trebek last week in The New York Times:

”...we all think of Trebek as 'Alex,' that avuncular, Canadian-accented presence who has been in our homes every weeknight for 35 years. Whether we watch it regularly or not, we all rely on Jeopardy! always being there. It’s no longer an entertainment property; it’s an institution.”

So it is. And so is Alex Trebek.

I've watched Jeopardy! off and on pretty much all the years Alex Trebek has been hosting. Sometimes regularly, sometimes as a drop-in, and who can help but play along.

In his video announcement, Trebek invoked the commonly-used fight metaphor about “beating” cancer and I'm sorry he did. It is already exhausting to live with cancer and we should not be urged to use our remaining, precious time fighting the inevitable.

From my point of view, it is the doctors who do the battling; I just follow their instructions and am grateful for the extended life they have given me.

That quibble notwithstanding, it's a good thing that a beloved public figure as Trebek has made his diagnosis public. The small number of pancreatic cancer cases means that it gets little attention and few research dollars compared to the big-time cancers.

Although progress is being made, there still is not a diagnostic test for pancreatic cancer and it is extremely difficult to find before it has reached late-stage development. I was just luckier than many that mine was detected at stage 2.

So perhaps Alex Trebec's well-known public presence will light a fire under some people and some institutions who can afford to fund the research necessary to find a better treatment and even a cure for this terrible cancer.

Meanwhile, I'm sure that all of us and millions of others agree with Claire Sattler, a high-school student who won the 2018 Teen Jeopardy! competition:

“I hope he knows that he does have the whole support of every person who’s been on Jeopardy, every Jeopardy fan, along with his family and friends,” she [told The New York Times]. “Whether he’s around for 20 more years or whether he’s not, he’s made such an amazing mark on so many individuals.”



Living While Dying

Snoopy-cartoon

As much as I like the Snoopy cartoon - which is all the more admirable for its simplicity – dying is, nevertheless, more complicated than that.

Some people die quietly in their sleep, others die suddenly in, for example, a traffic accident, while another group of us slowly dies while being treated with drugs meant to extend of our lives even though we know the disease will eventually kill us.

Twenty-seven years ago, my mother chose no chemotherapy. She didn't want to be sick or drugged during her final months of life. I chose differently. So far the chemo side effects are minimal and the professional guesstimates of extended life sufficiently long to make the treatment worthwhile – at least, to me.

You might have guessed that I have put a lot of thought to this interim period. Back in June 2017, when I was first told I had pancreatic cancer, I made a bunch of decisions at least two of which have proved fruitful.

  1. Spend every day living to the fullest extent I desire

  2. Talk about my “predicament” as much as I want

For number 1, I have surrendered to life and living as fully as possible because what other choice is there? I don't have the first idea of other possibilities.

One thing that gets in the way is that I feel apologetic when the simple life I lead comes up in conversation, when someone asks about my bucket list (none) or fulfilling lifelong dreams, etc.

I don't know why I'm touchy about my life and I'm working on figuring it out. In addition to having cancer I'm old, nearly 78, and I'm slower than I used to be. There was a time when I tried to hide that.

Nowadays I have no difficulty behaving like an old person even though American culture recognizes (begrudgingly) only old people who act like younger adults.

The amazing plus side of number 2, talking openly and often about my cancer and about dying, is that when I do it, it is easier for the people I'm speaking with to do so too. And writing about my predicament on this blog has freed up readers and friends to leave messages that stick with me every day, long after they are said.

My friends Gail and Jim wished me “a safe and harmless journey.” Isn't that lovely. And not long ago, another friend, Wendl Kornfeld, signed off with “May you live long enough.” Both of these being beautifully inspiring.

But we need to talk more about dying until it becomes a normal part of life. It wasn't always hidden away, you know. Until 100 years ago or thereabouts, most people died at home among family and friends. Even the children were involved.

Personally, I am fascinated with these final weeks and months of my life, eager to let myself follow natural inclinations to wherever they take me.

Palliative care physician and author Kathryn Mannix also believes it is time to break the taboo surrounding death, as she explained in this March 2018 video from the BBC:




Cancer Update – 1 March 2019

I wrote about some of this last week, but I'm coming at it from a different direction today.

It was November 2018 the last time I wrote a cancer update. The good thing is that not much has changed in terms of the disease since then – but my behavior and attitude drift from here to there and back again.

Some of that is a result of chemo side effects. A difficult one is loss of appetite. It's important for my continuing health to keep up my weight but for several days after a chemo infusion, I can barely put a bite in my mouth without retching and in four or five days, I can lose that same number of pounds.

When my appetite returns I spend the next week stuffing myself with all the high calorie food I can eat to increase my weight before the next infusion. And then I start over again.

More difficult than the weight loss and gain, however, is fatigue. I feel fine for two days or so following the infusion; then I'm exhausted for two or three days, sometimes needing two naps and early bed each day for that period of time. After that, I feel like a normal, healthy person until the next infusion.

The most difficult thing that comes with loss of appetite and fatigue is a really bad mood. Terrible mood for two days or so during which it feels like it's time to bring this to an end as I run scenarios of my final day.

It doesn't matter that I've experienced this often enough now to know that it lifts entirely within two days. Knowing that doesn't make getting through it easier.

And yet. And yet.

With all that, what a remarkable series of events I'm living through, especially for a short-timer whose life is unwinding now during a period I had expected to become slower and quieter until time to go.

Instead, some of the most extraordinary events of my life have been taking place:

Meeting the son (and his family) I gave up for adoption 56 years ago

Fulfilling my long-held intention to have a magic mushroom experience in the face of impending death

And, a near dispensation from chemotherapy side effects

No, I didn't forget the appetite problem, fatigue and horrible mood. But compared to the long list of those and other potential side effects I was given to expect when I began this chemotherapy (some of them quite icky), I been lucky beyond measure.

The side effects I have are short-lived – about three days every two weeks – and astonishingly, they have become lighter and easier to tolerate with each infusion.

No one can tell me how much time I have left. It depends on how long this chemo is effective and how the cancer develops from here. My stamina and energy are down; it takes about twice as long to do almost anything I once did faster but I don't dislike the slower pace.

I seem to want more time alone than before and spend some of it digging around for a deeper understanding of myself and of the meaning of life. Fat chance I'll get anywhere with that second one but why not try.

This blog is important to me. I write it as least as much for myself – to figure out what I think and believe – as for you, dear readers.

Living is easier now without ambition, worldly goals and urges to compete. The worst that can happen (“you have incurable cancer”) has happened now and I've become accustomed to knowing that. It's all right.

In fact, this simple, little life I have may be the most contented I have known in my near 78 years. How did I get so lucky.

I know there are a goodly number of TGB readers who have and/or are living through similar circumstances. Does any of this resonate with you?




On Living With Health and Ill Health

Thank You: You guys are amazing. This year's donation drive ended on Monday and your generosity is stunning. There will be no problem in securing the services necessary to keep TimeGoesBy open online and available for at least five years after I've died.

You are a terrific group of readers that any blogger would envy. Thank you so much.

* * *

As most of you know, my most recent cancer test reported remarkably good news. The radiologist's review of the CT scan stated in part that

”Since 11/28/2018, markedly improved appearance of the lungs with decrease/absence of multiple new and enlarging nodules from the most recent study. Appearance is similar to 10/5/2018 staging CT. No definite new nodules.

Wow. We all rejoiced. It doesn't mean the cancer is being cured. This chemo can't do that. But it is doing what it is meant to do – slow the growth of the cancer so that I will have a longer healthy period of time than I would have without the chemo.

One of the strangest things (to me) associated with this cancer is that if not for chemo side effects, I would not know I have a deadly disease.

Do away with chemo brain, loss of appetite and general fatigue that plague me for three, sometimes four days following the chemo infusion every two weeks and I would feel like I did before I was diagnosed with pancreatic cancer – healthy.

Which is how I feel for 10 or 11 days at a time after those side effects subside, until the next infusion starts the process again.

It's as though I live a double life now - about 25 percent of my time as a sick person; the rest of it as a healthy person.

The intensity of the fatigue (the worst of my side effects) is hard to predict – sometimes I am tired but mostly functional, other times barely capable of crawling out of bed.

The contrast between healthy days and not healthy days has given me a new perspective on how I (and, I suspect, many other people) differentiate between those of us who are healthy and those who are not.

Until I was diagnosed with pancreatic cancer in May 2017, I had lived 76 years in good health, nothing much more serious than a bad flu now and then. I smoked cigarettes for many years but beyond that I paid a reasonable amount of attention to healthy behavior – eating well, exercising regularly.

I hardly ever thought about my overall health and always assumed most people were as healthy as I had been. Now that I have reached old age – a period of time when, as we here all know, a large number of health issues, minor and deadly serious, can upend our lives – I have gained a new perspective.

These days, I look at healthy people of all ages with wonder. They wear their health so easily, as if it will always be there, and until recently I was a member of their tribe, unaware that my health status would ever change.

Now, on the days when I feel as normal as before the cancer and I can almost pretend that I can ignore the cancer, there's an itch in the back of my (saner) mind repeating something like, “Don't get too cocky, honey. You know how quickly this can change.”

And, eventually, will change.

I don't have any conclusion to this rumination. I'm just surprised how, for so many years, I took my good health for granted.




Cancer Tests and Magic Mushrooms

Wow oh wow oh wow oh wow.

After all your wonderful well-wishes on Friday's post, I wish you could have been there on the telephone with me and my new oncologist Friday. As we were getting through the preliminary niceties, he interrupted us saying, “Let me get to the point first.”

The thing about that is you wait and wait and wait, rocketing back and forth between fear and confidence, and suddenly the answer is right there, right now.

Sharp intake of my breath on my part and then he says – this is close to verbatim:

“The CT scan shows the size of the lesions in your lung have decreased by half and some are no longer detected at all. The one lesion in your peritoneum is not visible.”

This does not mean the cancer is curing itself. It means the chemotherapy is doing what it is supposed to do – slow the growth of the cancer to give me longer healthy time to live.

The doctor is so encouraged that if the news is as positive when the next scan takes place in two months, he will extend the scan interval to three months.

For now, however, Wow oh wow oh wow oh wow.

Chemo continues every two weeks until it doesn't work anymore. No one knows how long that is – it's different for every patient. But I'm encouraged now that I will still be here for my 78th birthday in April. For a long time I didn't believe that.

MAGIC MUSHROOMS
A couple of comments last week are of some concern to me. In one of them, the writer says that since I was fearfully anticipating the test results, my psilocybin session that freed me from my paralyzing fear of dying, must have failed.

Perhaps the writer doesn't understand that humans can't live with two and more emotional conditions, even strong ones, at once. I thought everyone knew this.

I can be, and was simultaneously, scared of test results and not afraid to die.

He also suggested that to maintain the results, I would probably have to have regular psilocybin trips. I don't suppose it would hurt and I have supplies for micro-doses but it certainly hasn't failed for me although I don't know about other people.

Speaking of psilocybin and other psychedelics used as therapy for depression, anxiety and PTSD among other conditions, I was surprised and pleased to see that in at least one survey, a majority of Americans support the use of these drugs for treatment.

As reported at YouGov that conducted the survey in 2018,

”Despite the stigma surrounding these controlled substances, new data from YouGov shows that many Americans are ready to embrace psychedelic therapies.

“What’s more, a relationship appears to exist between higher levels of education and increased support for psychedelic research and treatments. At each increasing level of education, there's a corresponding increase in support for medical research into the potential benefits of psychedelic substances, such as psilocybin mushrooms, MDMA, and ketamine.

“53% of all respondents support medical research into psychedelic drugs, and this number increases to 69% for respondents with graduate degrees.”

Here is the YouGov chart on support for psychedelic therapies among education levels:

Psilocybenchart

Both the state of Oregon and the city of Denver already have ballot measures approving such use of these drugs ready for a vote in the 2020 election.

You can read more at YouGov.

Again and from my heart, thank you for your many words of love and support through not just this latest test scare, but for the entire 20 months so far since my original diagnosis of pancreatic cancer. I love you all.




Oops. Sorry About My Wednesday Mistake

On Wednesday, I told you I would get the results of my latest CT scan yesterday, Thursday. Wrong.

Right here on the desk in the notebook where I keep important information from meetings with doctors and nurses, in big, black letters, it says:

“Dr. will call Friday with scan results.”

I would like to blame chemo brain for my mistake but it had been two weeks since my last treatment so that is probably not the cause. Chemo brain can make you stupid for a few days but it had subsided by the time I was screwing up the Wednesday post.

So, assuming I do hear the results sometime today and to spare you, kind and gentle readers, any test-results-wait-anxiety I may have infected you with on Wednesday, I will slip in the salient information on the Interesting Stuff post tomorrow.

Meanwhile, I ran across a recent BBC story about “cancer cliches” - words and phrases that many cancer patients reject.

We discussed this a bit last August when I explained why I dislike phrases like “battling cancer” and “fighting cancer”. BBC cites a survey of 2000 people who have or have had cancer, reporting that I'm not alone.

”Calling a person's cancer diagnosis a 'war' or a 'battle' and saying they had 'lost their battle' or 'lost their fight' when they died, were other unpopular descriptions, according to the poll carried out by YouGov.

“Articles in the media and posts on social networks were found to be the worst offenders for using such language.

“Mandy Mahoney, 47, has incurable metastatic breast cancer...Mandy said it was not necessary for people to 'swallow a textbook and come up with all of the key phrases' to talk to someone with cancer, and it is fine to not always know what to say.

"'If you tell me it's awkward and you don't know what to say I will find a way to make that right for you, and actually on some occasions I might say 'we don't have to talk about it'.

"'But just be real.'"

There is more detail and a different opinion from a body builder at the BBC site.

I know there are a number of TGB readers who have or have had cancer. How you do you feel about these words and phrases?




A Week of Worry

While some of you are reading this today, I am at the medical center to drop off a couple of vials of blood with the phlebotomists (wonderful word), meet with my new oncologist and then undergo an ultrasound scan to (gulp) determine if the chemo I've been taking for two months is doing what it is meant to do.

What that is, is to slow the growth of the cancer – it cannot cure the cancer - thereby giving me some number of extra months of healthy life.

Because the scan happens every two months, it is easy to forget about it for six or seven weeks and get on with everyday life.

But not this week.

My previous chemotherapy regimen failed at its job so I know what that conversation with the doctor is like.

This is my first scan since the new chemo began and I'm nervous. You might even say scared. How about frightened, terrified and unnerved?

They all apply and sometimes, this week, it had been hard not to cry. Anticipation is a bitch.

There is no dearth of advice on coping with what a couple of websites call “scanxiety” - itself a grossly inept attempt to make light of a serious health predicament.

Worse, the advice itself doesn't improve things. It ranges from surrounding oneself with positive people and thinking of scans as maintenance (clearly written by someone who never had cancer) to this deeply misleading nonsense:

”Even when we do find that cancer has spread, we can usually craft a plan to control the disease so it doesn’t continue to spread and cause more problems.”

Not true.

Which leaves me exactly nowhere except to tough it out. I wish it were not so but I'm pretty sure that a not small percentage of you, dear readers, have been exactly where I am right now. Somehow we survive the anticipation.

I'll let you know what the scan reveals.