Tracie Cone has always been a trailblazer. This award-winning journalist is the former California Newspaper Executive of the Year. She shares a Pulitzer Prize with fellow staff members at the Miami Herald for coverage of the aftermath of Hurricane Andrew and has twice been nominated individually. She has focused her writing on helping the underdog and empowering those without a strong voice of their own. Now she takes us on the fight of her life.
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Archive for August, 2010

Spacey Tracie

There is this effect called “Chemo Brain” that happens to people on chemotherapy. It causes the brain synapses to fire more slowly, leaving words just out of reach and witty comebacks a little late. It’s frustrating because those two things are my bread and, uh, something. Ah, butter! (just kidding).

I often spend time looking for the right word, or giving a long definition of it so that the person with whom I am conversing can fill in the blank. Just a while ago I completely forgot the name of the investment firm where my pension sits. As I go back and reread this before posting, I still can’t think of it.

In other words, it’s a little like getting older, only the effect is supposed to be temporary. Six months or so from now when the chemo leaves my body, my brain function should speed up.

It’s not that I can’t think complex thoughts; it’s just that my motor skills are a little off and I blank sometimes in the middle of sentences. Then I fire back up again. And it’s not all the time, just sometimes. Mostly when I’m not focusing hard.

So yesterday I was feeling pretty good. I walked a mile, quite an accomplishment since I’ve been confined to my cul-de-sac for nearly eight weeks. The sudden burst of energy at the end of this chemo round gave me confidence. So Michelle sent me to our neighborhood market.

Mind you, I haven’t really driven in the same eight weeks I’ve lacked energy. Driving takes a lot of concentration, and I’ve had friends around to do the job, so I just haven’t tackled it. But we needed a few things and the store is really close, so I decided I could do it.

I had no problem driving (slowly), found a handicapped parking place in front, and, armed with my list (because I possibly would have forgotten the two things on it), I found my items, paid, and left the store.

That’s where my problem began. I went out a door different from the one I went in, and there sat a car that was nearly the same color as mine. Believe me when I say that is where the similarities end. It was bigger, way bigger, and cleaner. It wasn’t even the same make or model. And it was a much darker shade of gray, but close enough for my Chemo Brain to say “There’s our car!” Psych.

I walked up to the driver’s door and pushed the button on my key fob to unlock the door. Then I tugged at the handle. Again and again and again. Nothing. I cursed my key fob. I figured the battery had run down. I tugged and tugged at the handle as I clutched a melting bag of ice in my arms.

It took a little while before I peered inside and realized it wasn’t my car at all. By that time a few people had paused in front of the store to watch the bald woman juggle her bag of ice, key fob and uncooperative door.

Oooops, I said aloud. Wrong car. My walk of shame was 10 stalls westward.

Later that day I was talking with Michelle’s mom, who offered consolation by saying that this, too, happens to her when she goes to the mall.

She’s 81. Sigh.

So my friends, I know that this particular state of mind, for me, is temporary. But this gives me a glimpse of what we have to look forward to – losing our cars in parking lots, losing our words in mid-sentence.

The rewards of a long life well lived. I’ll take it over the alternative.

But in the age of satellite radio our generation has an added degree of difficulty – no antennas to which we can tape a garish plastic flower, a beacon to discretely guide us on our walk of shame.

As I said, I feel pretty good heading into this round (that’s what chemo does. It allows a few good days so the patient will show up for the next round). I’m not as weak as last time, when I was still recovering from that drop in blood pressure and a 5-day hospital stay. This time my weakness started subsiding on Thursday, perhaps coincidentally with a break in Fresno’s plus-100 temperatures (I meant 100-plus temperatures). The other good news is that the side effects of the trial drug Lapatinib seem to have subsided. I do have some neuropathy (tingling in the hands), but my skin no longer is sloughing off my fingers. No nausea either (yay!). With urging from my life coach Lynn, I take the pills and visualize them leading the chemo to the rogue cells hiding in my body. I do feel like they are all under attack. My goal is to be the star patient who lifts the survival odds for everyone!

I’ll meet with an endocrinologist to talk about a benign “speck” an MRI found on my pituitary gland. Nobody is worried about this. Doctors told me that if everyone had a brain scan, perhaps 30 percent of us would have this “speck.” But maybe they’ll tell me what it is?

I’ll also meet with the plastic surgeon who eventually will do my reconstructive surgery. The plan is to use my body fat to build new breasts (yes, I’m leaning toward a double so I’ll start using the plural to see if it helps me get used to the idea). It means I’ll get a tummy tuck at the same time.

I’m also due an echocardiogram. The downside to both my chemo and the Lapatinib is possible heart damage, so it is being monitored closely and reported to the FDA. Last time my heart function was better than my initial baseline exam, so my fingers are crossed.

And I get to see Katie and Dr. Mollick!

Then, of course, chemo at 4 p.m. Pacific Time.

Think happy thoughts!!

READER REPORT: Thank you to the 511 people who visited my website last week, including readers from Madagascar, Chile and Mexico! I love this new feature that tells me how many people are following my story. As I said before, if you are a fellow traveler, I wish you good luck and a complete restoration of your healthy body. If you are a caretaker, I wish for you strength and patience.

Regrets? I have a few.

What causes cancer? That is the billion-dollar question.

What caused my breast cancer? That is something I ponder many times when my mind is left alone to wander.

I am not genetically predisposed to breast cancer, so heredity is out. I guess that leaves environmental causes and stress.

Who knows what I’ve been exposed to over the course of my lifetime? I grew up in the age of DDT, eating packaged foods with mercury-based fillings in my teeth. I’ve dyed my hair, took birth control pills for a while way back when, and even ate snail bait when I was a toddler. I’ve spent long hours soaking in chlorine pools (though I switched our home pool to salt three years ago to, ironically, avoid risking cancer) and spent too many hours in the sun. I’ve skied in the Catawba River in Belmont, N.C., and who knows what manner of pesticides and herbicides have run off into it, not to mention sewage from countless small towns along its banks? I haven’t always eaten organically. I’ve consumed more alcohol than is generally recommended, though my red wine consumption should have canceled it out.

On the other hand I’ve been a vegetarian for 28 years, eaten organically for 10, ridded my body regularly of parasites under the theory that they can compromise cell structure and lead to cancer.

Stress, however, is another matter. It is something I have never been able to manage (or even tried), until now. I have freaked at family illnesses and catastrophes, looming deadlines and lots of other things over which I have had no control, like traffic jams and tone-deaf editors. Stress was my caffeine. The more I had the harder I worked.

When I look back at the biggest source of stress over the past decade, it was owning my own business, a newspaper in Hollister CA. I worked hard and was the “bad cop” in the good cop, bad cop relationship that my then-partner and I had with the community. I took the hard stands, politically and editorially, while she stayed in the background making nice. I had the target on my back, a stressful position in a small town. Our editorials for slowing growth in the face of several environmental catastrophes earned us the ire of some pro-growth good ol’ boys, and one particular vicious attack attempting to drive us out of business landed us on the front pages of many newspapers, including the LA Times. That one got us a movie deal (never made). I wondered aloud often whether the stress would kill me, but worried about my heart more than cancer.

The idea was that we would work hard and build the business into something we could sell, then do something with a lifestyle that would be kinder to me. (Winemaking) During all those years I never had a vacation and hardly saw my friends or family. My health suffered, mentally and physically. I figured I could unwind when it was over.

Then at the end of the run there was the Big Deception. A complete and devastating violation of human decency by the person I trusted the most. It was the most stressful time of my life.

Two-and-a-half years later I have cancer. Was it stress upon stress? Snail poison? Birth control pills? Pesticides. A little bit of all of it? There is absolutely no way to know.

If I could go back and change anything, would I? That’s the question.

Life is full of good and bad experiences that shape us, and I’m all about collecting them. Everything I have experienced has brought me to where I am now, and I’ve never been in a better place, figuratively speaking.

My regret? That I did not do a better job of managing the stress when times were tough. I tell that now to one of my beautiful nieces, the one who possesses some of my personality traits, including high anxiety. No matter how terrible I thought something was then, no matter how many hours I lay awake worrying, I realize now that it was all a matter of perspective.

Because when it comes right down to it, no matter how impossible tasks seem, they either get done – or they don’t. Then life goes on. I can’t even remember now most of what kept me awake all of the nights I fretted away.

Today, with the benefit of a deadly disease to give me perspective, little bothers me. I’m more patient. Now I consider that the slow driver ahead might just have learned she has cancer. Perhaps she is trying to hold her shit together until she can get home and collapse. You never know what someone else is going through (even tho they still just may be a really bad driver).

A few weeks ago I was in San Francisco waiting with friends for a cab we had called that hadn’t showed. As I sat on the stoop contentedly watching tourists my friend, frustrated, warned me that an AWOL cab wasn’t worth stressing over.

Fresh out of the hospital from a chemo overdose, my bald head bundled against the blustery breeze, I heartily agreed.

What, me worry?


Being sick with a seemingly good company healthcare plan has left me plenty of time to worry about cancer patients who aren’t as fortunate. For good reason.

My friend Fran sent me a link to a study that says more than 2 million of the estimated 10-12 million cancer survivors in the U.S. did not get one or more follow-up medical treatments (or delayed treatment) because of financial concerns. Either they had lost their jobs and therefore their insurance coverage during their illness, they couldn’t afford their deductible, or they had reached the maximum amount their insurance company would pay for their illness. Of those 2 million, nearly 900,000 could not afford any follow-up care at all.

It bears stating right here that all of the respondents to the survey were younger than age 65 – the age at which they qualify for the government-run healthcare plan called MEDICARE. That’s the plan that got my mom out of a po-dunk hospital in Stuart, Florida that tried to kill her after she had suffered a rare type of heart attack and into the Taj Mahal of hospitals, the Mayo Clinic in Jacksonville.

Even more ominous for cancer survivors seeking to stay that way, the study used statistics from 2003-2006 – before the financial meltdown threw more people out of work and caused more employers to scale back their healthcare plans. The numbers are likely higher now.

Naturally, statistics were higher for women and minorities.

Before my treatment began, my doctor estimated that it would cost more than a half million dollars. That’s assuming everything went right, which it hasn’t. I’ve been to the ER and spent most of a week in Stanford Hospital getting all manner of outrageously expensive tests. It also just counts my treatment, not the breast reconstruction surgery I hope to have when this is over. I’ve said it before but it bears repeating, I am so grateful for my healthcare plan, and happy that I’ve been so scared of a catastrophic illness that I paid extra for my company’s premium plan.

That said, I received a notice two weeks ago from our company’s disability insurer that said my job protection had expired. It had been guaranteed for 12 weeks under the federal Family Medical Leave Act.

Is there any cancer that can be treated that quickly?

So now I can only hope that I’ve done a good enough job during my two years with AP that they will have a job for me when I am healthy, and all indications are that will happen. I can’t wait to get back to work.

But what about the others? In July the federal “high-risk pool” took effect. It’s for people who can’t afford insurance because of a pre-existing condition. In 2014, the Obamacare plan will forbid insurance companies from denying coverage to people like me with pre-existing conditions. And next month, according to an article in the AARP magazine, insurers have to cover annual expenses up to $750,000 – and up to $2 million by 2012. By 2014 there will be no limits. Insurance companies will not be able to increase their profits by denying clients the treatment they need to survive.

It’s hard to imagine that these are such gawdawful developments to those who have protested the early (and by far not perfect) legislation to help ensure that no U.S. citizen dies of cancer or anything else because they cannot afford the inflated cost of health care in this country.

To those who have opposed this legislation to force insurance companies to cover people with pre-existing conditions, and to forbid the companies from limiting the amount of life-saving treatment to which we can have access – I invite you to walk in my shoes for a week.

We’ll see then if you feel the same way.

Make A Wish

I have cancer; it does not have me. And because I have cancer, countless good things have been happening to me, seemingly to get me through this troubled time.

I joked with my friends the other day it seems my life lately has been one long Make-A-Wish.

This time I’m not talking about the love and acts of kindness coming my friends. I have chronicled that before, though it could never be enough.

When a person struggles with a debilitating illness there are kindnesses extended from all sorts of surprising places and strangers to make the go a little easier.

Isn't this sweet? And the sign is funny.

Let’s start with Pacific Gas & Electric, the boogeyman of the state, our power monopoly. The rate structure in California is set up so that the people who consume the most quickly climb a five-tiered ladder of rates so that ultimately they pay the most for each kilowatt hour used. It means that those who live in the hottest and coldest places (that would be those of us in Fresno and the Central Valley, where, not coincidentally, the state’s highest rate of poverty exists) pay the most for natural gas and electricity.

Well, heat is unbearable to people on chemo, and yesterday it was 110 degrees here. Going into this Michelle and I wondered how we would be able to afford our usual unaffordable $850 monthly summertime electric bill with me out of work. And we wondered how much higher the bill would be with me home fulltime blasting the AC all day.

Unbeknownst to most, PG&E offers a break to people suffering catastrophic illnesses. Those people stay on the first tier no matter how much electricity used. We applied and were accepted. So far we’ve received two electric bills this summer. The average? $120. Whew. Thanks PG&E! Very few know this benefit exists, so I’m sharing it with you. If you know someone who is sick, please share this with him or her.

Then a few weeks ago we went to Yosemite National Park. While sitting in a line of traffic, we noticed a sign that said people with disabilities are waived the $20 entry fee. At the gate, we showed my (temporary) disabled parking placard. The ranger looked at it, looked at me and asked for our paperwork. After a few awkward moments during which I felt compelled to hand over $20, she jotted something down then handed to us a wallet-sized card. Turns out disabled people get access to every national park in the country for FREE for LIFE. Even temporarily disabled people, I guess.

We hope to get up to see the giant redwoods this weekend. Can’t wait to see the inspiring beautiful trees that have endured for a thousand years no matter what Earth and man have thrown at them.

We also get our gas pumped for free (not that I drive anymore). And grocery stores open checkout lines for us. And strangers perform all manner of kind acts when they notice my bald head, like the young man to sprang to his feet to move a patio heater for us at a restaurant last weekend.

The moral of this story is not that sick people get things. It’s that in some informal way our society has evolved to make life a little easier for people who need a break.

And for now, for just a few months longer, I need a break.

PS: To answer a common question, yes, I’m bald. Completely all over, except for a few straggly eyebrows. Chemo kills fast-growing cells, and hair is fast growing. No I do not have to shave my head daily or weekly to keep my scalp shiny and smooth. Why would I go that? Wouldn’t I just let it grow and have hair again?

What Not To Say

This is the gang that went to Half Moon Bay. I love these guys, my former colleagues at the SJ Mercury News. We plan to retire to a commune together!

I’m taking a break from my personal travails to offer advice. When I mention to friends that I haven’t heard from someone close that I’ve expected to, they often reply: “People don’t know what to say to people with cancer.”

Seriously, that’s why you haven’t called or visited?

I can’t think back to the time that I might have thought of someone like me as a pariah. In fact, cancer has been such a part of my life (my mom, a survivor, diagnosed when I was 5; my dad succumbed four years ago after a 6-year ordeal) that I have a fully developed empathy gene for fellow sufferers. It’s even more developed now, and I’d like to figure out a way to use it for something good in the future.

But right now I want to offer suggestions to those of you afraid to reach out to someone with cancer — or any other disease. If you have avoided lending support to a friend because you don’t know what to say, here is something simple:

“I’m sorry for what you’re going through and I’m praying for you (or thinking of you or sending positive energy your way).”

Short and sweet. It can be used for many occasions. Kind of an all-purpose statement of empathy, either spiritual or secular. It means so much to someone on the receiving end to know we’re in your thoughts.

The bigger problem is what not to say. We do not want to hear about someone who had the same kind of cancer and didn’t survive. We do not want to hear about botched operations or life-altering complications. We are aware of the risks we face. Nor do we want to hear about someone’s bad experience with some test or drug that looms in our future. You probably mean well, but we are trying to remain positive. If you want to warn us, perhaps suggest that we read all we can before launching down that road. Just don’t give us a bad mental image of what might be to come. We are scared enough already.

As I lie in bed alone at home for weeks on end, I know that life goes on for people not directly affected by disease. I am both entertained and saddened by Facebook. I love seeing what friends are up to, and reading their smart takes on current events. Their adventures and musings keep me company all day. Likewise, it’s sometimes hard to see that life goes on in all of its excitement and normalcy while mine seems frozen in time.

You are traveling, going out to dinner, frustrated at work, embarking on new adventures, watching a beautiful sunset and I live vicariously through you. But sometimes I scream in my head “How can you be doing these things! Don’t you know I’m all-consumed with saving my life?” Was your frustrating day really that bad?

That said, I know in my heart that I’m fighting so that by next year I, too, will be able to again focus on a world that doesn’t involve my infusion schedule. FB connects me to normalcy and reminds me that my life, too, will one day be “normal” again – albeit with an insight into all manner of things I might have lacked before.

So while we cancer vixens know “life goes on,” my next tip is this: It’s not cool to use your busy schedule as an excuse for not being in contact. “Hi, I would have called you or visited you sometime over the past three months but I’ve been busy going on vacations (or working or fill in something else).” Ugh. Everyone is busy, OK. We know that.

Better not to make contact at all than to remind the person they are not worthy of your precious time.

Because truth is, the patient might not have even noticed your absence until you reminded them you were just too darned caught up in your own life to care about theirs.

So to my own friends, there is no reading between the lines here. You have been great. More than I could have ever expected or dreamed of.

But I realized this week when my administrator finally put a counter on this blog that there are more people reading my cancer ramblings in a week than people I know, and maybe they are looking for insight. I would love to know who is lurking in Russia, France and even Sri Lanka, as Google reported. If you’re a fellow traveler, I wish you well. If you’re a friend or caretaker, I wish you strength.

To the rest of you… Please don’t let not having words keep you from reaching out to a friend in need.

If you can’t find words, a hug works even better.

Single or double? (Not talkin’ lattes)

As the end of chemo nears, my thoughts have turned to surgery. Three weeks after my last round of chemo I’ll have a mastectomy that will include taking lymph nodes in my right arm, too.

The question is, whether to take the other – for now healthy – breast, too.

It’s not an easy decision. When I first was diagnosed, I wanted to have the mastectomy first. I was frightened and wanted the disease and tumors gone from my body as quickly as possible. In my view my right breast was trying to kill me. “Get it off of me. Now,” I said.

Doctors thought the prudent path was to first shrink the tumors, which is being done. So now here we are with all of these months to think about the Big Picture: the removal of a part of my body.

Despite the extra time to think, the deadline for me to decide whether I should have a single or double mastectomy seems like it’s coming at a rapid pace.

There is no question one breast has to go, but what are the odds the cancer will return on the left side later? Am I genetically predisposed to this despite the absence of breast cancer in my immediate family?

No one seems to have the answers I seek. And no one wants to tell me which decision is right for me.

So I’ve been reading, and reading and reading. The Internet is a wonderfully scary place. Generally speaking, it seems that the odds my cancer will metastasize elsewhere are greater than it will occur in my other breast. However, it also seems that with each passing year the chance of my having cancer in my left breast will increase by 1 percent. Assuming I have a 15 percent chance of recurrence (and I have no idea what that number really is) that means 25 percent in 10 years and 35 percent by the time I’m 70. I don’t really like those odds.

The problem is I have to decide pretty soon. If I opted for a single mastectomy now, but a year from now decided that the fear of a recurrence was too great for me to bear, it’s too late for insurance to pay.

I found a few surveys that said women who have doubles generally do not regret the decision – and they live with less fear than those who have singles. But those who have singles also generally are happy with that decision. But the survey did not address issues related to body image and intimacy. Will I feel incomplete? Unattractive? Undesirable?

How will I react intellectually and emotionally when I look to see a scar where my breast once was, or both once were? I wish I had the answers to these questions.

One thing I do know for sure is that I would never want to go through this again. But with chemo starting to appear in my rear view mirror, is that reason enough to cut off a supposedly healthy body part, and one so associated with my being?

Life was easier when our parents simply told us what to do.

All is well; modem fried. Will post asap

Holey Moley $8,275.42

Today Michelle opened the bill for my visit to the Fresno ER three weeks ago.

I received three bags of saline and some morphine over about six hours. And a chest Xray. Morphine must really be expensive because salty water isn’t.

This bill doesn’t even count the ambulance ride there. I wonder how much my 4-day stay at Stanford hospital will be? I went through some really expensive tests there.

Every day I’m grateful that I work for a company that provides excellent health insurance. I’m also glad I made a decision to pay a little extra for a better version of the plan.

I’ve always worried about people without health insurance, now more than ever. Getting sick should not be a reason for bankruptcy.

The Universe Said: Take The Pills….

Yes, I've been taking the Lapatinib... and I feel fine.

For all of you who have emailed, I should have said I’m taking the Lapatinib again. I only missed that one day I posted about. But I might not be taking them if not for a fortuitous alignment of the universe.

Sunday I decided I just could not stomach another pill. I was in pain and sick and had developed the idea that the pills – not the chemo – were poisoning me. Or at least pushing me over the edge.

And these are the pills that are supposed to save me down the road. They are the ones that allow the taxatere to go places it could not otherwise go, like my brain, to seek out and kill rogue cells. It’s the trial designed to help prevent a recurrence of my recurrent type of cancer. And yet….my immediate self was paralyzed by the inability to swallow another pill (on the required empty stomach. Ugh) Sunday morning.

So Monday morning I awoke with a start at 4 a.m. and started thinking about a webcast I had watched a few weeks earlier by Dr. William Li, a doctor who researches in angiogenesis, the science of starving tumors by denying them a blood supply. Well, that’s not exactly right. Actually in cancer patients tumors develop because for some reason our bodies have developed capillaries to clusters of deformed cell, feeding them until they become full-on tumors. The body is not supposed to do that unless we need blood to heal an injury. Cancer patients have excessive angiogenesis. Conversely, the function doesn’t work in people who have wounds that don’t heal.

Dr. Li says there are certain foods that can starve tumors of the blood supply. Coincidentally, they seem to be the same ones I am eating on my alkaline diet. I wanted to refresh my memory about his work and learn a little more.

So at 4 a.m. I grabbed the iPad my work colleagues so generously gave me and filled the time I otherwise would have fretted away alone in the dark. I found to learn more about Dr. Li. That led me to the lengthy section on breast cancer. As I read I came upon a short paragraph that referred to the trial I’m in and Lapatinib. Lapatinib is an antiogenesis inhibitor!!! I had no idea until that moment. The foundation called the trial “very promising” and said that the medical profession is “eagerly awaiting the results.”

My heart skipped a beat. That’s me, I thought! I’m a part of this. It can make a difference. People are awaiting the results! They think it will work! What the heck am I doing not taking that medicine!

I sat up, fumbled for my pills on the nightstand, counted out five giant red tablets and swallowed them down one by one.

I haven’t missed a day since.

ANOTHER CHANGE: My dear old friend from high school, Elaine, is on her way back to NC after 10 days of helping through my latest chemo round. Couldn’t have made it without her. She has been replaced by Fran Smith, my dear friend and former editor at the Mercury News, in from New York. Lucky me, again.

A new lease on life

I know some of you hate it as much as I do when I feel so awful and go into that dark chemo-induced place of despair. Today, with time, a good detox, an uplifting talk with Lynn and your help, I’m feeling better.

First, there’s a lot of satisfaction in just sitting upright again. If I were making a gratitude list, I would write at the top “on this day during my last round, I was in the ER.” And I’m not. So that alone is reason to celebrate today.

But it’s by far not the only reason, nor is it the most important. But feeling better gives me the emotional and psychological boost I need to look at this cancer experience of mine in a more positive light (and yes, that can and should be done.)

The old pre-C me somehow viewed life as some sort of drudge to be endured. I marked off days to the time some unspecified something was supposed to happen and make sense of my life.

Be careful what you wish for, my friends. My life is beginning to make sense.

I didn’t wish for this. But now that it’s here, there are things I have learned about life, love and the power of positive friendship that I might otherwise never have learned.

If I must experience chemo, radiation and a mastectomy now to be able to experience a lifetime of joy, love and gratitude, it seems like a fair trade. If I live every day of the next 50 years of my life as if it were my last, fully experiencing all the day has to offer to me, then this is a lesson worth learning.

Thanks to my temporary visitor, I’ve experienced a permanent emotional awakening of true love and friendship.

I only thought I’ve felt love before, but the powerful kind of love that carries a person from darkness and despair into loving light and hope is another thing altogether. I went from feeling utterly alone a few short years ago to believing now that I may be the most loved person on the planet.

It doesn’t take numbers. One person completely connecting because they want me to survive and thrive would be enough.

And that feeling is 1,000 times better than chemo is awful.

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Copyright 2010 by Tracie Cone. All rights reserved.