Sunday, March 18, 2018

Waiting

You know that feeling when you’re waiting for something? You know it’s coming, but you don’t know when.

Multiply that by a billion and you’ve got something approaching the response to a terminal illness diagnosis. The doctors may give you a prognosis, but it’s vague, and could be way off.

Unless you’re actually in your deathbed … and why is it always a bed? Why not a death chair? Or sitting at a death table? What happens if you’re in the bathroom, on the death toilet, when that final moment comes?

Can you manage it so you die in a dignified manner? You don’t want to be discovered on the bathroom floor with your pants half down. Someone should make a device that pulls up your pants if you fall off the seat. Is that so much to ask?

Or maybe it’s not that sudden. Maybe you get a chance to pull your pants up when the grim reaper approaches. You should be able to sign up for text message alerts. Of course then you’ll start getting tons of casket ads in your Facebook feed.

And what about that final Tweet or Facebook post? That’s kind of like what last words used to be. People attach some great significance to last words, as though a dying person suddenly understands and can sum up the secrets of the universe in 280 characters or less.

“Moving 2 the light its beautiful had breakfast burrito today”

And there’s the whole nagging uncertainty about when to start something. Unless you’re a great writer or composer or mathematician, you don’t want to leave some unfinished work lying around. I mean, Mozart left a requiem for someone else to finish, and Dickens left The Mystery of Edwin Drood unsolved. Mathematicians spent over 300 years trying to prove Fermat’s Last Theorem because he left a note in the margin that said “There’s a nifty proof of this.” Whole new branches of mathematics were invented in trying to come up with the proof (which someone finally did.)

But it doesn’t seem likely that anyone will spend that kind of time on an unfinished blog post.

Anyway, that’s the kind of crap I think about while waiting.

Friday, March 16, 2018

Saturday, March 3, 2018

Am I Weird?

As a victim of advanced prostate cancer, I see a lot of doctors. For about a year and a quarter, my care was overseen by a very highly regarded oncologist at the Dana-Farber Cancer Institute. Late in 2017, however, she apparently concluded that there was little or nothing more they could do for me. She said I could expect to live another three months or less … six if I was lucky … and she recommended I sign up for hospice care.

Now I’m sure hospice is extremely beneficial and comforting to many, many terminally ill patients and their loved ones. However, the concept of hospice is that you are in the final stages of illness, and essentially give up on the idea of treatment. From that point, you can expect interventions only to relieve pain and discomfort.

There is no way I was ready for that!

I’m still quite independent. I shower and dress myself, get my own food when necessary, and maintain a limited but fulfilling lifestyle. I go for walks. I host friends and family (though my wife is stuck with most of the work.) Writing for this blog actually gives me a sense of purpose. And then, of course, there’s the all important watching of TV. Somehow, I can not see myself just sitting at home waiting for the grim reaper (especially not if he or she comes during “Jeopardy.”)

But this seems to be what most oncologists expect.

Most of the doctors I’ve spoken with since seem to regard the “3 to 6 months” as a prescription rather than a prognosis. (“Kick two buckets and don’t call us in the morning.”)

It’s a mystery to them why I would waste their time and resources (drugs, blood for transfusions, etc.) when I’m clearly just biding my time. Several doctors have told me how much respect they have for my Dana-Farber oncologist, implying that I’m somehow defying her expertise by trying to live like … well, like a living person.

Fortunately, over the course of a number of doctor’s appointments and hospital stays, I have encountered a very few doctors who get it. These select few seem to understand that, despite my bleak prognosis, I’m trying to conduct my life like a life … to pursue any avenue that might delay the cancer’s progression, and to stay as comfortable and even energetic as possible while doing it. These are the doctors I want on my team.

Tuesday, February 27, 2018

I'm Still Here

(Based on “I’m Still Here,” from the musical Follies, with apologies to Stephen Sondheim.)

I’ve had my prostate wholly removed;
Margins clear. I’m still here.
Two months of radiation approved
The next year. But I’m here.
I’ve schlepped to clinics on my own.
Had drugs to lower my testosterone
Till that’s coming out of my ear. But I’m here.

I’m always eager to sign up for clinical trials. Hope that’s clear.
Lengthy consent forms line my whole house in great piles. Please sign here.
I’ll try whatever comes my way
With or without the F.D.A.
Seems there’s a new one every day, so I hear.
Helping science while getting clear, and I’m here.

I’ve been through Provenge immunotherapy, and I’m here.
Hope as we go henceforth, more biochemistry keeps me here.
I’ve been through countless blood tests, sometimes I just need a rest.
Not ready for “rest in peace”, no, my dear.
I’ve got a portacath now, and I’m here.

I’ve had Zytiga, Xtandi, Seviteronel.
So far they’ve had no effect.
When you’ve had Zytiga, Xtandi, Seviteronel
No other drug is suspect.

I’ve had Xofigo (Radium-two-twenty-three), and I’m here.
Where else can we go? Not many options for me, but I’m here.
I need a complete, durable remission. That would be sweet, but I’m just wishin’.
Dodging a more realistic vision, that’s clear.
Time for hospice may be near, but I’m here.

Walking ’round one day, next day can’t get out of bed, but I’m here.
For every fun day, I pay with days exhausted, but I’m here.
For any day I miss my nap,
Stiffness and pain and other crap.
Need to learn from my cats how to endear
Even while I am sleeping, and I’m here.

I’ve seen radiation and medical oncologists,
Not to mention the pee doc.
I’m sure there are more and more specialized -ologists,
Each holding a Ph.D. doc.

Good times and bum times, I’ve seen ’em all
And, my dear, I’m still here.
Appetite sometimes, sometimes just drinks that are clear. But I’m here

I’ve run the gamut, A to Z
Three cheers and dammit, C’est la vie
I got through all of last year, and I’m here
Lord knows, at least I was there, and I’m here
Look who’s here, I’m still here

Tuesday, February 13, 2018

Love

Love

Love

Much of what follows is repeated from earlier posts. However, in light of what I’m going through, and the impending Valentine’s Day, I thought it was worth dusting off some of these thoughts and polishing them up again.
Love is the answer to everything. Unfortunately, the word love has become a worn out cliché.
We’re not talking here about couples finding sunsets to stand in front of while they gaze wistfully into each other’s eyes.
What we mean by love is the sense of being a part of something larger than your individual self. I thought long and hard about whether the feeling of being a part of some larger thing was enough, or whether you have to actually be a part of something larger.
I finally realized that it makes no difference. The sense of being part of something makes you a part of something.
This occurs at many levels, just as there are different types of loving relationships. You can be in love with someone, meaning that the relationship between you is itself a thing … an entity that deserves respect and attention. You can nurture or hurt that relationship.
A family shares a different kind of love, but it nonetheless stems from being part of the family.
There are larger groupings, like communities, schools, churches, clubs, etc. When someone loves his or her country, they identify with that country, and take pride in the connection with others who feel the same.
And being in love is the most fulfilling state we can be in. As individuals, we are all condemned to live in our own world of thoughts and feelings all day. We move around, observing each other, sometimes with envy or disdain. But actually relating to other people, sharing a few minutes or a joke or a conversation, or even just enjoying being together, gives us a sense of contentment.
You can love the environment, aware of earth as offering many resources and pleasures, but also needing care and nurturing.
Unfortunately, there is also hate … wanting to exclude others. There are whole groups devoted to hate of others for this or that insignificant difference among people.
Yes, there are a million cliches about love … hearts and chocolates and flowers … that suggest it is something sentimental and artificial. But real love is the only way to live successfully.
Because real love gives you a kind of immortality. The people who survive you carry a part of you with them. Once you have been part of a relationship, or a family or a community, you will be perpetually a character in those other lives.

Monday, January 29, 2018

Reincarnation Wish List

In the process of re-examining my life and paring down my possessions, I’m coming to realize that certain choices I could have made would have simplified things greatly. So I want to record some of these decisions, just in case whoever’s in charge of reincarnation is paying attention.

Bicycle
Brompton folding bike (brushed nickel finish, maybe electric assist)

Art medium
Oil pastels (but open to others too)

Locale
Hmmm. Love New York and Boston, but wouldn’t argue about someplace with milder winters.

Career
Writing and illustrating children’s books … not huge money, but rewarding to get read and looked at by generations of kids, (if you can ignore their parents asking why you don’t become a real writer.)
Politics
Maybe a tiny bit privileged, but definitely with a conscience! (Hey, if you have a choice …)

Spirituality/Faith
I’ll let you know.

Friday, January 26, 2018

The Best Things About Cancer

Most people think of cancer as a devastating disease that shatters lives and scars families. Well, I guess it kind of is, but there’s always another side to everything. I want to put in a few words for the few (VERY few!) positive effects of cancer.

Easy way to lose weight.

You can drop pounds and tens of pounds without even trying. In fact, you’ll probably have to work at keeping your weight high enough, as chemotherapy and other treatments rob you of your appetite.

Friends and family seem willing to indulge you.

In their efforts to lighten your mood and lift your sprits, friends and family will offer to get you ice cream, cookies, cake … whatever you want. People genuinely want to improve your quality of life. If you tell them that means junk food, trashy movies or whatever, you’ll be surprised.

Legit use of Opioids.

Woooo. Woo-ooooo. Woooooooo. Wooo. Wooooooooooooooo. Woooo. Woo-ooooo. Woooooooo. Wooo.

People always tell you how great you look.

It’s true. You could be in the middle of chemotherapy, hair fallen out, skin turned grey, and people will make you feel like a prom queen (or king). Enjoy it! Hey, who are we to argue?

Treated with respect at the hospital.

Cancer still carries a certain mystique as an illness. It is “the emperor of all maladies,” in the words of Siddartha Mukherjee, who practically wrote the book on the subject.

Ok, he did write the book called The Emperor of All Maladies.

So in many hospitals, cancer patients are treated with special care and attention. Volunteers bake cookies, cakes and brownies for waiting areas. Sometimes volunteers make knit wool caps or scarves during colder weather. And there always seem to be people around to help you get a beverage, get in or out of a  wheelchair, etc.

The exception, of course, is the cancer hospital. There you’re just one of the gang.

Develop a deep love and appreciation for all humankind.

One consequence of facing your own death is the growing appreciation of how fragile and precious life is. We all have the same fate, whether we realize it or not, whether we resist it or not. All we can do is try to bond with each other, and to empathize and appreciate each other’s struggles … to hold each other up and acknowledge our common humanity.

And yes, that goes for the jerks too.

Wednesday, January 17, 2018

What to Expect When You're Expiring, 2nd ed.

Introduction

The acclaim for the first edition of What to Expect When You’re Expiring was so great, we decided to release a second edition, this time with some actual content between the title and “The end,” though in a strange way, that kind of sums it up.

There’s a very good chance that the text you’re now reading is unfinished. That’s because we’re trying to write this from personal experience, and there’s a limit to just how far we can go with that. Nevertheless, we’ll plunge in and see what turns up.

Stages

In the late 1960’s, psychiatrist Elizabeth Kübler-Ross figured out that terminally ill patients usually react to news of their impending deaths in five stages:

  1. Denial
  2. Anger
  3. Bargaining
  4. Depression
  5. Acceptance
Never mind that these are also the stages of Christmas shopping, they are a useful guide to understanding our feelings about death. Specifically, we don’t like it.

But what can be done about it? As it turns out, not much.

Religion

Many people, facing imminent death, turn to religion, even if they’ve led secular lives up to now. Of course, if you want to join a religion, you should choose one with simple entrance requirements, so you can have a shot at salvation even this late in life.

You want a religion that will fast-track your path to absolution. The main point is that you want to be readily accepted into the fold. The customary approach to this is similar to choosing colleges when you’re in high school. You want to be sure to include a couple of safety religions, a couple of reach faiths, and perhaps a few match sects. With each of these, you want to make sure your level of penitence and contrition matches the incoming class averages.

Withdrawing from the world

This is a time you’re entitled to focus on your own needs, and ignore politics and world events. Everyone will forgive you.

  1. Don’t worry about politics.
  2. Throw away plastic bottles.
  3. No longer listen when E.F. Hutton speaks.
  4. Forget about watching all those British period dramas on public television. Just watch whatever crap helps pass the time.

Questions and Answers

Each case is different, I’m sure there are many readers who still have unanswered questions. We’ll try to address some of the more common ones below.

I’m dying of an incurable disease. Is it possible my doctors are wrong about how long I’ve got?
Not really. No.
After I die, will I still be able to communicate with people, like in “Ghost?”
Uh … no.
I have cancer, but I’m too young to die. Does that make a difference?
No.
I’ve led an honorable, altruistic life. Will that save me?
Congratulations. And no.
If I come back as someone else, can I be sure to learn Twitter at an early age?
No.
They say “you can’t take it with you,” but can I sneak a little something along?
Nope.

Euphemisms

People seem to feel uncomfortable using words like “death” and “dying,” especially if it applies to themselves. We hope this little list of euphemisms may help overcome this problem.

  • Bought the farm (or, more delicately, “Purchased agricultural real estate”)
  • Kicked the bucket
  • Pushing up daisies
  • Lost in cyberspace
  • Gone to that big <whatever-you-like>
  • Gone to a better place
  • Emptied his/her “to do” list
  • Took the D train
  • Closed out the accounts
  • Played his/her finale
  • Drained the keg

Further expressions are left as an exercise for the reader.


The end

Wednesday, January 3, 2018

What to Expect When You’re Expiring




The end.