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The Bastard

Sunday, December 12th, 2010

Cancer really is a bastard.  If one of the definitions of “bastard” conveys illegitimacy, our cancers are our very own bastards.  It is formed from our own cells, run amok, and their presence informs us that our bodies have turned against us, to the point of trying to kill us.

The Bastard toys with us, too.   ‘I’m was stage 1, it was caught early, is it gone for good?’…Or how about, ‘I was stage 4, I was treated and it’s been gone for a long time, I’m told it will definitely come back, is that written in stone?’  Lots of questions, not nearly enough answers.

When you’ve lived with The Bastard, you know first-hand that it’s wily.  Unpredictable.  Difficult to control.  And maybe worst of all, you can never be sure you killed all of it.

I’m not being facile when I say, it is what it is.  But in The War Against Cancer, it’s disappointing that people with any type of advanced cancers have trouble getting into clinical trials, or that the dollars for research for advanced cancer are minuscule, compared to the drugs in the pipeline for those with earlier diagnoses.  It’s as though the research community has decided those folks are dead already, so why bother.

That suggests The War Against Cancer is being waged badly.  Any strategist knows you can’t blow off your flanks.  Those doomed to the back of the room with stage 4 are in no less of a purgatory than the stage 1, who’s blown away when the cancer comes back.  Everybody who has, or had cancer has a seat on this bus.

Where have you been, girl?

Monday, August 2nd, 2010

Good question.  Clearly, I haven’t been blogging, even though I had some terrific news to announce.  The kind of news that, if it can happen to me, then it can happen to anyone who hears the somber diagnosis of “stage 4″.

Last month, my oncologist told me that I need to come in for blood work every 4 months, instead of 2, as it has been…and the PET/CT follow-up is now scheduled for once a year, instead of every 3 to 6 months (depending on what freaking thing showed up on the last test).  That point is, no freaking things have showed up for long enough that …

Here’s how my word processing dictionary defines “remission”:

1) A lessening of  symptoms of a disease, or their temporary reduction or disappearance;

2) A lessening or reduction in the severity of something;

3) A release from a debt, penalty or obligation;

4) Pardon or forgiveness;

5) An instance or the action of remitting something.

Out of the box, 2 through 5 are out.  Don’t apply at all.  And 1 doesn’t fit, either.  This isn’t a “lessening” of symptoms, nor is it a “temporary reduction” of anything.   I totally reject the idea that the disappearance of stage 4 cancer is inevitably temporary.  What, because statistics say so?

I’ve covered statistics in this forum before.  It’s worth reading that entry, if you can scroll down a bit.  If not, at least know they are riddled with flaws.

So listen up!  Stage 4 is not an automatic death sentence.  In many cases – far more than we, as patients, realize – it may not be a death sentence, at all.

However the healthcare industry defines it, I know one thing for sure: it’s gone.  Right here, right now, I don’t have cancer.  And I have never felt better in my life, mentally or physically.

The chickens have something to do with my current beatific state.  They’re cute and industrious and never stop eating, and they each give me an egg, every day.  I used to complain because I had a period once a month; these girls have one every day.  No wonder chickens are jittery!

I’ve got a farm going up here, in the mountains about a mile from Sunset Boulevard.  The chickens, the dogs and the cats remind me constantly that something other than me requires my attention.

Let me put it this way: if you’re stage 4 and thinking of raising chickens, you may very well have the time.

Pissed off yet again

Wednesday, June 30th, 2010

One more woman has virtually been dumped by her oncologist, because she insisted on participating in her treatment.  Another example of doctor-as-god.  What is it with these people?  Cancer treatment isn’t a one-size-fits-all situation.  So why wouldn’t a healer bend over backwards to accommodate a patient WITH STAGE 4 CANCER?

Well, there’s always arrogance.  And fear: what if it turns out that the patient is right and the doctor was…wrong.  Oooo, no.  How can that be?  So what if the patient’s life is on the line?

Whenever I hear a story like this, I thank my amazing luck that I have the doctor from whom all other doctors could learn a thing or two about caring.  Because giving the right meds isn’t anywhere near enough.  A doctor can either boost your spirit, or break it.  There’s no malice involved.  Just arrogance.

If you have one of those doctors — you know which kind I mean, the ones who sit behind their desks and even if you’re eye to eye, they’re looking down, clearly doing you a favor by bestowing their talent upon you, in return for which you are expected to acquiesce to their every decision — if you have one of those, I beg you, dump them before they dump you.  Or break you.  In the battle to save your life, you can’t afford to suffer fools.

More about Breaking a Sweat

Monday, May 24th, 2010

I talked about “extreme exercise”, Jesmer version, awhile ago, but the topic is important enough to revisit.  Again, this may not work for everybody, but it’s been working for me – and it will continue to work, because it’s my Own Personal no-fail system.

It started even before I was thinking of exercise, when I got rid of my car.  It wasn’t my decision – a hateful neighbor had the car towed because it offended his eyes, when I was too preoccupied to have it fixed because I was going through chemo at the time – but it turned out the bastard did me a favor.  For a couple of years I had a close relationship with Enterprise Rent-a-Car, but that started getting too costly to maintain.  I began to investigate the mass transit system.

Los Angeles mass transit is a joke, especially when you’ve been spoiled by the systems that work so beautifully in New York and Chicago.  I used to take public transportation for granted; not anymore.  And anyway, my house is a mile up a mountain from any kind of public transportation.  So, my choices were either break down and get another car, or I learn the bus system.

It was less of a trauma than one would expect, because I hate owning a car.  I used to love driving when it involved speed, but the only time I could put the pedal to the metal in recent history was the one day every month when I went to have my hair color done.  Cars need gas, brakes changed, tune-ups, whatever.  It wasn’t worth it.

I don’t know how long any of the services for physically challenged people will last in California – another hateful guy, our governor, is threatening to cut all social services for the elderly and disabled to balance his budget (could he maybe put a few million of his own dollars into helping out?…nah…) – but at the moment, a program exists that allows me to ride the trains and busses, for free.  Once I walk down from my house on the mountain, I can get anywhere in the city on public transportation.

So that’s what I do.  I have schedules for all the bus lines I take, I can get anywhere in the city without much trouble.  Getting home is where the “extreme” comes into the exercise equation.  My house is a mile straight up a mountain from the last bus stop.  Trader Joe’s is right there, so I can count on carrying a few groceries, besides my travel bag.

The mountain is steep.  I don’t kill myself getting home – I stop and talk to friends pretty much every day.  But I don’t take the rides that are so frequently offered.  It usually takes about 45 minutes to get to the steps, but those final 75 steps up the mountain to my home, seem easy.

I started out thinking “I can’t do this.”  But I did it.  I started out doing it once or twice a week.  Now, it’s almost every day.  And I feel great.  I know my body is appreciating what I’m doing for it.

Here’s the special goodie that comes with this routine of mine: I find money.  One day, there was a $20 by the side of the road.  About a week later, I saw another bill and picked it up.  A dollar.  What?!  Not a $50?  Bummer.  But seriously, I figure that with those bills and the coins I find almost every day, I’ve made about $30 since the first of the year.

I’m getting paid to stay healthy!  What’s better than that?

A good tip from a pharmacist

Thursday, May 13th, 2010

Last time I picked up my prescription for tamoxifen, I happened to examine the pills.  I don’t usually do that until I get home, but this time I did, and it was a good thing, because they looked different.

I asked the pharmacist what was going on.  It turned out that the contents was tamoxifen, but it was made by a different company.  She said “Good thing you noticed.  You shouldn’t switch manufacturers.  It’s important to keep continuity in your medications, especially one as important as this.”

So…When you take your meds, look them over before you start a new prescription.  Especially if you’re getting generic drugs, as mine usually are.  Pharmacies often order the same drug from different manufacturers.  You want to make sure yours are the same every time you refill.

What you can’t do

Tuesday, May 11th, 2010

You can’t make people do what’s best for them.  You can’t make people do anything, really.  But if you have any influence in the lives of people you care about, I believe that you have to speak your mind, even if they break contact with you as a result.

My mom found a small lump in her breast.  She and my dad had planned a trip to Europe that she didn’t want to spoil.  So she didn’t say anything, until 2 months later, when she came back.  By then, the lump was bigger.  The cancer had spread.  Maybe it was already metastatic when she first noticed it, but maybe not.  She made the worst decision of her life, and it may have cost her her life.

Now my friend has decided that it’s more important to pack up her house, then it is to drop everything and go across country, where she’ll be treated for cancer.  She told her mother, who happens to be my best friend since 7th grade, that she didn’t want other people to pack her stuff…or something equally bizarre.

When people make decisions that are so obviously irrational, you have to ask yourself what’s really behind it.  Fear?  That certainly has to be one of the ingredients, maybe the biggest.  My mother’s behavior, coupled with some of the things she said before she died, tells me that she had decided she was going to die.  She really believed there was nothing she could do to change her fate, so she just gave in and stopped trying.  She diminished her fear by deciding there was nothing she could do.

My friend and I both know the numbers aren’t in our favor.  But life is about standing strong and taking what it dishes out.  It’s not about evading tough choices, or deciding, like my mother did, that it’s not worth fighting for.  My friend and I are both fighters.  To the bone.  I can’t change her mind, but I can hope that she’ll recognize what course of action she has to take, sooner than later.

A One-Question Survey

Monday, May 10th, 2010

I need your help to make my site work.  If you came to the blog after visiting www.elainejesmer.com, could you please write an honest evaluation of it?  Does it help?  Give good info about chemotherapy?  What could make it better?

If you’re out there, I want to hear you!

A little spaced out

Monday, May 10th, 2010

For awhile there, I was blogging almost every day.  I thought I’d never run out of things to talk about.  But guess what, not every thought that goes through my mind is important enough to post.

Then Tracy’s cancer came back.  We knew it would, but geez… 

Like she says, it’s surreal.  She feels fine.  No symptoms.  Just an MRI that says the tumor’s back.  One of the side effects of this news is that she has to pack up her life again and move back to the city she had left to live with her lover.  But her lover is coming back with her, and her family is in the city where she’s being treated.  It’s not like she doesn’t like that city, it’s just that she was building a life somewhere else, and now she has to change her plans.  Once again, cancer moves to the front burner.

She has committed to whole year of chemo.  A year during which the rest of her life, the life she’s living now, becomes background noise.  She already resents that.  She’s angry and scared and sad.  She hates this.  I hate her cancer, too, almost as much as she does.  I hate it with a passion.

What this news has done is to remind me of what I’m trying to do here.  If www.elainejesmer.com can make any contribution, no matter how small, to the easing of stress experienced by anyone going through, or living with the effects of chemo, my life will be serving a purpose.  If I can do that, I won’t just be taking up space.

Those of you who’ve read “I’m Hot!…and I’m Bald!”: CHEMOTHERAPY FOR WINNERS, know that I wasn’t a happy girl when I was diagnosed.  I had had a fabulous life for most of my years, but for almost 10 years before I was diagnosed, I had been drinking.  What started out as a few drinks every day escalated to downing a quart of tequila every 2 or 3 days.  I knew why I was doing that to myself, I had no goals or reasons for living.  I had done everything I wanted to do, and then some.  I was bored, angry at myself and out of plans for the future — a pain in the butt, probably, although my friends wouldn’t have put it quite that way.  Essentially, I was killing myself with alcohol, repeating the same destructive scenario my beloved father did with tobacco, after my mother died.

Then I was diagnosed with stage 4 cancer.  All of a sudden, literally overnight, a switch flipped in my head.  In all the confusion about beginning treatment, I didn’t figure it out right away, but not too long afterward I realized that cancer had given me a deadline.

I always did very well with deadlines.  I mobilized.  I used my strengths and faced my weaknesses.  I cleaned house of everything in my life that wasn’t good for me.  Alcohol went first.  My neighbor took me out for my last drink the day before I started chemo.  I also eliminated anyone in my life whose presence created stress.  These choices were easy.  My life was on the line.

It wasn’t long after I finished treatment that Tracy’s cancer was discovered.  And it seemed to me that she was doing a version of the same thing I was doing.  She changed course completely, because when cancer happens, at any stage, happiness isn’t something you put off for later.  

Cancer will not take Tracy’s life.  She won’t let it.  And I believe her.  For both of us, it’s just life happening.  I think in a way, we’re both lucky.  I can’t explain it, but if she reads this, I know she’ll understand.  And probably agree.

A piece of publishing business

Sunday, May 2nd, 2010

If anybody out there is a writer trying to get published, I published my own book and I couldn’t be happier.  I would do it again, no matter who the publisher might be, wanting to take that job off my hands.

Here’s why: I worked in the publishing field, doing public relations and marketing.  My former partner, who came out of a major publishing house, would dispute my qualifications as a publishing marketer – and she has a point, I wasn’t steeped in the culture the way she was.  That’s what I brought to the table that works for me.  I have no problem trying sales tactics that haven’t been tried before.

I learned a lot from her, though.  One thing she knew from personal experience was how long book stores kept books around before pulling them off the shelves (which, by the way, renders them both useless and expensive).

I knew exactly who would want to read it.  The audience for my book were NOT people who had the time, inclination, or strength to run to a bookstore.  They needed that information instantly, delivered as painlessly and accurately as possible.

I designed the marketing plan for “I’m Hot!…and I’m Bald!”: CHEMOTHERAPY FOR WINNERS so chemo patients could get the book from the people who were pumping the drugs into their veins.  It’s available at some hospital gift shops – every store I was able to visit took copies and sold them out.  And it’s available at Amazon and Kindle, for people who hear about it and are inclined to buy it.  But the thrust of my marketing model hasn’t been tried before, at least not by someone who wears both hats: writer and publisher.

My marketing plan puts this book into patients’ hands free of charge.  If I can pull this off, I won’t make a load of money, but I never intended to get rich on this book, anyway.  If the plan succeeds, I’ll be selling it in quantity, at a deep discount, to the facilities who are, in all fairness, making a lot of money treating us.  Selling the book “on demand” on Amazon means I get only 1/3 of the retail price.  But it also means I don’t have to ship the book and I don’t have to warehouse copies.  Kindle has a flat sale rate; I don’t remember what the author gets, but if the book ever starts selling in quantity, you can bet I’ll find out.  Most of all, it means patients and their caretakers don’t have to hunt the book down through a book store.

The point is, if you have a book in you, don’t automatically think if you can’t hook up with a publisher, it isn’t worth writing the book.  If your book is a novel, then yeah, it would be hard to get anywhere self-publishing.  But if you know your market, and if you’re persistent, you may just find that being your own publisher is something you can do better than anyone.  Best of all, if you know your audience, you’ll be motivated more than any publisher, to find the best way to reach them.

Support Groups

Tuesday, April 20th, 2010

I don’t join groups.  At work, I thrive on grouping, but in social situations,  I fare much better one-on-one.  So when I got cancer, I didn’t go looking for a support group, I reached out instinctively to my friend.

I found the tumor myself, in the shower.  I dried off and reached for the phone, at the same time.  There was no question in my mind, the only person I wanted to talk to was Lisa.  I’ve looked up to her and loved her since I was 15 years old, and she’s never not been there for me.  That’s the support I needed.  That’s the degree of love and commitment all of us need when we’re looking death in the teeth.

Maybe I’m wrong, but I believe everybody has at least one Lisa in his or her life.  It’s the first person we think of, in an emergency.  It’s not the person we’re supposed to reach out to, it’s the one we can’t stop ourselves from reaching for.

I envy anyone who can plunge into a group and get sustenance, with all those people looking on.  It’s so intimate an experience that I’m not comfortable with an audience.  So I support the all the support groups out there, with all my heart.  But from a distance.