The Big C

Lesson learned after trip to the ER

You know when you go into a crowded hospital emergency room and they take you first, something must really be wrong.

I call it a systemwide failure. Technically, my blood went whacky.

I'd been out two weeks before I finally decided to go to the hospital. I was weak, so weak I could barely get out of bed to go to the bathroom. I couldn't hold up a book to read in bed. I just laid there and stared, listening to my own breathing.

It started as fatigue from chemotherapy. I've been getting this chemo for a few months now and the effects can be cumulative. One of the side effects is that it can lower the level of red blood cells in your body, which affects energy levels. 

One Sunday I crashed. My reaction -- to just not do anything. My biggest foray would be to go downstairs to the couch to watch TV. I rarely ate anything. I was just too tired to be bothered.

After a week of this, I desperately went into the cancer center to get a blood transfusion. I couldn't drive myself. My brother had to get a wheelchair to wheel me into the infusion center.

The two units of blood seemed to help a bit, for a few days. Then, on Saturday, I starting urinating blood. It didn't stop. Yeah, big sign something was wrong.

I hoped it would go away. But I kept getting weaker and weaker. Finally, on Monday, after spending the morning barely lifting my head, I decided to go to the emergency room.

My brother had to help me down the stairs. I couldn't walk to the car. He got a chair with wheels on it to wheel me through the garage to his car. It was hard to sit up. I had to pause in the car to rest. I remember looking around wondering if I'd see my house again.

As my brother pushed me into the emergency room I looked around at the dozens of people waiting for help. Hunched over in the wheelchair, I explained why I was there and they had me fill out some paperwork. Immediately after the papers were signed, they took me back for an evaluation.

My pulse rate was through the roof. They immediately took me back to a room where I said I couldn't sit anymore and they got me into a bed. Lying down, I felt better. But the medical folks were rushing in and out, which was a bit daunting.

The pulse rate concerned them. They worked to get my heart rate down, giving me medications that didn't work. They then took my blood.

Aha. They found the culprit. I'd been on a blood thinner this whole time I hadn't been eating and it had thinned my blood to dangerous levels -- off the chart, the doctor said, the highest he'd ever seen. My hemoglobin was dangerously low, too. 

In other words, my blood was the consistency of water and my heart was killing itself trying to get oxygen to my body.

No wonder I was so tired.

So off to ICU I went. During the next 24 hours or so they gave me about eight or 10 units of blood and plasma, plus medication, plus shots, plus IV bags of things like potassium and magnesium, which I was also low in. I was basically low in everything. 

I got a full lube job, all new fluids. 

Now some folks might think I'd be concerned about phrases like 'dangerously low' or 'dangerously high.' Me, I was concerned about the phrase 'bed rest only.' In other words, no getting out of bed. And no getting out of bed meant no using the bathroom.

I've been at the other end of a bedpan. I wasn't looking forward to experiencing it firsthand. And my body wasn't either. It didn't work. Not at all. Finally, they brought a rickety potty seat I could use, which was heaven, by the way, but they freaked out because my heart rate would escalate every time I used it. 

But after a day that got better. By the third day I left ICU for the regular ward, still getting fluids and shots and pills but not in such dire circumstances. I left the hospital on Friday, still very weak but actually having hope I'd get better.

And I am. I'm back at work, sitting up all day and walking, although still weak at times. I'm eating. Hardly eating for two weeks nearly brought me down. All my life I've tried to lose weight. This wasn't a good way to do it.

The advice from the doctor when I left the hospital -- don't do that again. I've figured that out. I don't want to be first in line at the emergency roo

Cancer brings different thoughts for the future

The beginning of a new year often prompts people to think about the future, what they want to do in the next 12 months, where they want to be in their lives.

These days, for someone in my position, the perspective has changed a bit.

It will be two years this January since I was diagnosed with a recurrence of cancer. Statistically, most folks in my position would be dead by now. So nyah, nyah, nyah on that.

But it is a challenge. Every day is a battle. Every day means getting up and changing the bandages on my chest, trying to put the right food in my body to fight cancer, and trying to keep a positive attitude because everyone says that's so important.

The other morning, though, I woke up and a stray thought crossed my mind as I slowly got out of bed.

This sucks.

A simple sentence, fairly definitive, pretty clear.

This sucks.

Yeah, that about sums it up.

It's not like everything is terrible. Things seem to be on a bit of an upswing. This current treatment seems to be working, although it makes me tired at times. The cancer on my chest -- which at its worst looked like month-old hamburger rejected by hungry carrion-eaters -- is mostly gone and pink flesh remains, although there's no skin there right now. It's inching back, like a fire victim.

My brother is back living with me full time (although that's more about a parting of the ways with his girlfriend -- and no loss there, in my opinion). This means I have a body I can order around like, 'Please clean the cat boxes' or 'Please take out the trash.'

And work is looking up. Our new managing editor has seemed to settle in OK. And we seem to be surviving financially.

I do think the folks at work, though, are getting pretty tired of me dropping like a rock on the floor. The first time I did it, a year and a half ago, led to four days in the hospital. The most recent, and second time, was just an episode of extreme lightheadedness brought on by chemo-induced anemia and my hidden desire to get my boss' heart gallumping again. A few moments on the floor, a few minutes in a chair and taking off my shoes brought me right as rain.

But I want it all gone, now. I want to be done with it, now. I don't want to have to wake up and immediately change bandages. I don't want to worry about which way to turn my body in case something pulls the wrong way. I don't want to watch every little bump with concern. I don't want to keep getting stuck with needles and have blood drawn and have nasty chemicals dripped into my vein.

Wah, wah, wah, this sucks. Say it loud now. This sucks!

But as they say in cancertown, this is my new reality, my new normal. And most days, I'm fine with it. I mean, really now, what choice do I have? I continue to highlight the positive, downplay the negative and live my life as best I can whether that's for another few months, or few years, or few decades.

I remember thinking during the 2008 Summer Olympics it might be the last Olympics I'd ever see. And what's coming up in a few weeks? The Winter Olympics. So nyah, nyah, nyah there, too.

They say cancer isn't for sissies. And it isn't. It's for strong, positive people who just do the best they can and thumb their nose at statistics whenever possible. It can be a wondrous, life-changing adventure that heightens your appreciation for family, friends and faith -- and how funny life and cancer can be.

But that doesn't mean it doesn't suck.

Kathleen L'Ecluse is the online/projects/opinion page editor of the Daily Republic. Reach her at 427-6933 or [email protected]. 

Hanging In On the Cancer Front

Hi everyone,

I thought I'd post an update because I haven't been really good about keeping things up to date with me. Right now I'm battling a recurrence. I had my first breast cancer in 2002 then a second, different breast cancer in 2006, then a recurrence in 2008.

I've been going up and down with it. The first several months of 2008 were pretty good. Then I got a blood clot in my lung and ended up in the emergency room on Sept 11, 2008. But that was taken care of and I started taking Xeloda and Tykerb for the cancer (I was following some alternative options before that). Xeloda worked for several months but then last spring it started coming back. This summer it seemed to really grow and I was panicking a bit, trying to keep up the alternative stuff. We tried a couple of other things, first a hormonal drug I don't remember and then cytoxin pill form. Neither worked. 

Then, a few weeks ago, it became clear I needed to do something else. And that meant getting a new port put in. I had a port from the first time I had chemo but the cancer had overgrown it -- it was all over my chest -- so I had to have surgery and got a port put into my leg. I started Navelbine about a month ago.

So far so good. It seems to be working. My chest, which looked like rotten hamburger six weeks ago, is now clean and seems to be healing a bit although there's a ways to go. And some other areas with lumps are softening and smoothing out. It's not all gone yet but things seem to be moving in the right direction.

I do feel much better, not so tired and down. I'm still trying to do the alternative stuff, too, because I feel if I can get that down, get the discipline down, there's a bigger potential for a permanent solution. And it doesn't hurt at all. I mean, eating well can hurt you. Of course, for me and anyone who's seen me, they'd know that diet has never been my strong suit. So I'm still fighting it.

I still have other treatments to try if this stops working so I'm still hanging in and kicking. I'm still working full time and I'm baking cookies for the holidays. I told someone the other day if I didn't back Christmas cookies, well, I'd be dead then. And I'm nowhere near kicking the bucket yet. 

So hang in there everyone, there are so many possibilities and options out there, something is bound to work. Keep the faith.

A New Treatment For My Old Nemesis

I started a new treatment this week, one that we hope kicks cancer’s butt, at least for awhile.

Speaking of butt, this treatment is a shot in the hind end. I’m not too put off by shots these days. Used to be, I’d cringe, wrinkle up my nose and grit my teeth.

But ever since I had to give myself shots a few times, I’ve become an old hand with it.

But in the heinie? The worst shot I ever had was in the heinie, gamma globulin for malaria. It felt like someone was shoving Jello into my veins.

The shot this past Monday -- actually two, one on each side -- wasn’t nearly as bad. It took awhile -- lots of liquid to go in, I guess -- but it didn’t hurt. And it didn’t hurt later, either, although the folks at the medical office said it might.

This treatment has to do with hormones and shutting off hormone receptors in my hormone-positive cancer. Simply, it helps starve the cancer.

This is my second treatment since I had a recurrence 18 months ago. Recurrences are a bad thing. They mean the regular treatment didn’t work, that the cancer is a tough one and mutates to escape succumbing to treatments.

So I entered a new phase of cancer patienthood then. We’re in the maintaining quality of life period, not trying for a cure period. There is no cure, they say, not at this point.

Well, me, I’m not so sure. I’m still pursuing alternative treatments, too, diet and detoxing, all that stuff. There’s hope there for a more permanent solution. The conventional treatments just offer time, extending my life with cancer, not eliminating the cancer. So I’m trying to find the best of both worlds and figure out what works for me.

That’s the tough part with cancer. Cancer isn’t just one thing. They can tell you you have breast cancer but there are all kinds of breast cancer, differentiated by hormones and other characteristics. So there isn’t just one silver bullet that kills all cancer. You can take one thing and it works on some stuff, another thing works on other stuff, etc.

And a lot of times the treatments stop working, or they finish off the cancer that responds to that type of treatment, leaving the cancer that doesn’t respond to grow. The treatment I started last fall did that -- worked for several months, getting rid of a lot of the cancer. But then it started coming back, in a few different places, so now I start something new, hoping it will attack the cancer I have left and knock it back for a long time.

It’s all about time these days. The alternative treatments I have hopes for take a lot of time to establish themselves. They’re based on science but it has to do with strengthening your immune system and balancing your body, putting good food in and getting toxics out. It’s a constant, relentless effort. I slip some but you have to keep at it.

It reminds me of this mountain I climbed back when I was in high school. It was a pass over the Sierra -- Baxter Pass. We were backpacking and had to cross this pass to get to the east side of the Sierra where people waited to take us home. We started out early in the morning and the hike seemed to go on forever.

We climbed one mountain, thinking we’d made the pass, but, no, there was another. We climbed the second, panting as the sun rose to heat the day, staring at the crest, seeing the pass there.

But it wasn’t there. It was yet another hummock and down we went again, into the valley and up again, on a trail covered with shale, slipping, grasping the ground with our hands as we plodded up the hill. I can still hear the creaks of the backpacks, feel the wind on my sweaty arms, taste the dust in my mouth.

It was daunting, that climb. There were moments we didn’t think we’d make it. But we did. We just kept walking, despite the heat, despite the shale, and crested the pass, finding the wide, open valley before us, pungent with the promise of home.

I’m walking through the shale right now. I slip at times and grab hold to steady myself. But I keep going. I know success is ahead if I just keep putting one foot in front of the other.

Kathleen L’Ecluse is the online/projects/opinion page editor of the Daily Republic. Reach her at 427-6933 or [email protected].

Playing with the future -- but at least I have a future

Yes, yes, it's been a while since I posted. It's hard, frankly, to write about these days because I live it so much and I don't want cancer to consume more of my life than it has to.

And yet things are going fairly well.

I collapsed in September with a blood clot in my lung. It was pretty funny, actually, passing out at work and people running around yelling, call 911, call 911. Well, it was funny to picture in my mind. I wasn't awake.

I spent four days in the hospital including one in ICU, a regular event for folks with a pulmonary embolism, which I had. ICU was pretty nice, actually. Expensive. But nice.

The whole thing was a bit of a blessing in disguise. It led to me taking some chemo again, xeloda and tykerb, which kicked back the cancer quite a bit. I'm still on it and while it's not working as well as it did, it is keeping things relatively at bay.

And I'm back on the alternative protocal -- or as Marla says, my nuts and bark diet. I feel good, I have energy, my chest doesn't look as lumpy as it did six months ago, I can breath. All in all, I'm doing OK.

I've never thought this would actually kill me but I've had my moments of despair. Thankfully, they're not as bad now as they were. I just have to deal with the stress of pay cuts and being treated like crap at work. But that's nothing unusual these days in the news business. I try to let it all slide off my back and look for other ways to get out stress. I sit in the sun and take deep breaths, enjoy the birds singing and the cats running through the grass. I look forward to the future and believe I will have one. And that's what you have to do. As my father always said, play 'em like you got 'em. Of course, he was talking about card games but it goes for life, too, I think.

Ask and ye shall receive

It might sound a bit weird but I found out I have pneumonia today and I couldn't be happier.

Yes, I have a touch of pneumonia and that's causing my cough. More importantly, I don't have a mass in my chest, in my lungs, in my heart, etc. Nothing, nada, nertz. And that is such a relief.

I do have a few prescriptions to take, however, which aren't on the protocol but I think it's important to take something for a short while to clear something up rather than have to try to deal with it for months. And that's what I've been doing.

I'm tired and worn out but I so needed something good to hear. Thank you, Dr. Gillespie, for calling me with this news tonight. He fit me into his crammed schedule today, took lots of time to talk to me, calmed my fears and then called me at the end of the day with results. I love my doctor.

And the other bit of good news, a big bit. I get to keep my doctor. A month or so ago my insurance company and my doc's medical group failed to reach a contract agreement so I was going to have to switch doctors come the first of the year. I've had my doc for 20 years now and I can't tell you the penic I felt. I was looking at buying other insurance to keep seeing him, in addition to what I have through work.

But just yesterday he signed a new contract and will be able to continue taking my insurance.

Good day all around. I still feel crappy but at least I now know why I feel crappy and the possibilities in my head have quieted for awhile.

I'm crying again. But for a different reason.

Reality checks

I'm so tired and scared right now of this whole cancer thing I don't know what to do about it. I know it's the right course but I feel so alone doing it. I feel so alone and things aren't changing or working and I don't know how long I can do this.

It's so hard to admit, to say. I'm so tired of being strong and upbeat and positive. I'm so tired of being independent and self-supporting. And I'm so tired of being tired of this, of having to do this every day, every waking moment thinking of this.

Everything I do, everything I think, is filtered through it. I watch the Olympics and wonder if they're the last Olympics I'll see. My cat comes to me to comfort me while I'm crying and I wonder who will care for him and my other cats. I wonder who will care for my brother.

I think of my future and I don't know what's there. I remember my mother telling me about six months before she died that she didn't have to worry about having money to live on as she got older. Is that me, too?

I go along to work and I talk and type and read and meet and do everything I'm supposed to do, and I cough and think I have lung cancer, or I get a bug bit and think the cancer has spread to my hand. I look at my hand now and find such hope in the fact that this bug bite healed and is gone, and I feel the sadness and desperation that I have to look to a bug bite for hope.

I know this path I've chosen is hard. I know it takes time. I know it is the right course. But, please, God, please let something good happen soon. Please let something good happen soon. I don't know how much faith I have left. I don't know.

I wonder sometimes how much of this was me. What did I do to cause this? Did I not forgive people enough, hurt people too much, waste too much energy being mad or frustrated or irritated. Do I hold my emotions back too much, letting them fester and poison me? Was I so self-contained that no one could see me hurting, so I turned away and turned into myself and let nothing in, and nothing out. And now I can't admit how scared and tired I am because I'm afraid to start crying because I'm afraid I won't stop.

And when will it end? Will I die soon? I keep fighting and fighting and fighting. When will it end? Will it end?

And now I have a bunch of snot coming out of my nose and the cats are freaking out because they've never heard me sob before.

Hibernating with porn carrots in Fairfield

I'm sorry I haven't posted in such a long time. Things haven't been going well for me and this cancer thing.
Oh, I'm still kicking, still getting on, but I'd had hopes that things would be improving by now. And they aren't.
I'm impatient, I guess. Doing things the alternative way can take time. I'm trying to regain balance in my system after decades of living out of balance. It takes time.
But, boy, it's hard as I watch things grow on my chest and I continue to try to follow the protocol with little headway.
So it's a downer. And I try to be uplifting and all that here. So I just haven't written.
But I did come across something funny today and wanted to share.
I'm trying to juice more. One of the problems I've had on this protocol is getting enough vegetables into my system. I do fine not eating things. Not so great eating what I'm supposed to.
I've been buying carrots, celery, beets and other stuff to juice at the local supermarket. But recently I visited a health food store and bought some carrots from them.
I got home and these were Superman carrots. I mean, they were huge, porn star huge. One carrot made the same amount of juice three supermarket carrots did.
I was trying to come up with a name for these carrots, you know, like a porn star, Paul Poundsalot or Big Bob Banger. But couldn't really come up with one.
I had the last of those carrots this morning. I have to hit the market tonight to get some more carrots but I can't make it to the health food store.
So I will have to lust for my porn star carrots from afar. At least until the weekend when I'll make my rabid way up the freeway in search of Sammy Schlong the Carrot.
Tee hee!!

A Pink Tinge to 'Sex and the City'

I read this in another group and just had to share. Great attitudes. I haven't seen the movie yet. My friend Marla and I planned to go, her in her Manolo Blaniks purchased on sale for $200 and me in my Birkenstock sandles (you couldn't pay me $200 to wear heels to a movie... well, maybe). But she had to work unexpectedly and I had to work so... Maybe next week.

"Sex' and the Pink Ribbon
By RUTH PENNEBAKER

All right, we admit it. We're not traditional "Sex and the City"
types.

We're five women from Austin, Tex. (wrong number, right sex, wrong
city), who range from our late 40s to early 60s (wrong demographics;
too old). Our shoes are conservative and our politics are liberal
(wrong, right).

Four of us are mothers, two are married, two are divorced, and one is
single. We've led quieter, more traditional lives than Carrie
Bradshaw and her friends. If there's a sex-siren Samantha among us,
she's been pretty discreet about it.

But we went to a sneak preview of the movie version of "Sex and the
City," which ran for six seasons on HBO, because it was a benefit for
Austin's Breast Cancer Resource Center — and four of the five of us
are breast cancer survivors. We'd met one another in support groups
and at talks and other benefits. Among us, we've had two single and
two bilateral mastectomies, nine regimens of chemotherapy, two series
of radiation treatments and one metastasis. We've been to too many of
our friends' funerals, spoken too many eulogies and written too many
obituaries.

All of which sounds noble and dreary. But I should tell you: We were
also there because we wanted to see the clothes. The stilettos, the
gossamer dresses, the floral splashes, the tight jackets, the outré
hats, the clutch purses, the hair, the makeup, the dazzling jewelry.
If half of "Sex and the City" is about sex, the other half is about
what you're wearing before and after you have sex and when you're
walking around the streets, heartbroken, certain you'll never have
sex again. Men come and men go, they die, they disappoint, they're
unavailable, they're too available. But at least you've still got
your three female sidekicks and a killer wardrobe to remind you life
is worth living.

So the five of us joined a raucous audience of women and a few
patient, saintly men, drinking stiff Cosmopolitans and catching up on
one another's lives after months and years of not being together. On
the big screen, weddings were canceled and relationships sputtered
and seasons blossomed and died and blossomed again, as women teetered
on impossible shoes and even more impossible assumptions about love
and perfect futures. Out in the audience, before and after, we
swapped stories about lives that weren't quite as Technicolor or
cinematic — an adopted daughter going to grade school; children
graduating from college; a new house; a mother who'd moved closer;
friends who hadn't lived to grow old with us; our own impossible
assumptions about life.

We sat and we laughed, recounting the story of one of our group
members, Betsy, who had called earlier in the day to announce that we
all needed to be dressed in a certain way to go to the "Sex and the
City" premiere. "High heels — and we've got to show lots of
cleavage," she'd screamed into the phone.

Lots of cleavage? Surely she was joking.

"You're going to this premiere with four breast cancer survivors,"
I'd reminded her. "You're the only nonsurvivor. You're bringing the
cleavage for the rest of us."

"Oops," Betsy had said.

But that's kind of the basic spirit of "Sex and the City," when you
get right down to it. Sure, maybe the movie was too long and
overwrought, but it had a warm female heart to it. Carrie, Miranda,
Charlotte and Samantha were always showing up to save one another
from a lonely New Year's Eve or a botched honeymoon or a shattering
disappointment, always bringing comfort and filling in for whatever's
lacking, making up for cads who leave and forget.

In our small group of friends, Betsy had to bring the cleavage to the
premiere of "Sex and the City." Our job, for years to come, will be
to remind her of her offer and never let her live it down. Because
good women friends, on screen and off, never forget.

Wrong city, wrong demographics, wrong shoes, but — what the hell —
right attitude.

Ruth Pennebaker is an author of young adult novels and a public radio
commentator.

Doctors can make a huge difference

Some days I have to wonder about doctors. Some of the ones I hear about are, well, atrocious.
Which makes me even more thankful for the doctors I have.
I've said before how much I appreciate my general practitioner Craig Gillespie. The day I was first diagnosed with cancer he told me something I'll never forget:
"Some times in someone's life they have to come first. This is your time. If you need to see me just come by, you don't need an appointment. If you need to talk to me, just call and tell them I told you to call."
What a comfort.
But even more important was the reaction of my current oncologist when I told him I wanted to follow the Budwig Protocol to fight cancer this time.
Others have told me when they told their doctors they planned to pursue an alternative course, the doctors have said my way or the highway and kicked them to the curb. So not only are these people scared, they're now on their own.
My doc, James Long, did exactly the opposite. Not only did he tell me he was there to support me and do whatever he can for me, no matter what I do, he'd spent the time to look into the Budwig protocol and told me the science was sound.
"There are a lot of things in this world that fight cancer," he said. Some don't have the money or can't pursue FDA approval but that doesn't mean they can't work, he said.
Can you imagine how comforting that felt? I'll be forever grateful for that.
Now these weren't the only two doctors I've dealt with on this cancer journey. My first oncologist was a good guy and my surgeon, well, he was good, funny and cute. I had a friend pick me up after surgery and she couldn't quite talk enough about how cute he was. But I'll give her that.
But Dr. Gillespie and Dr. Long, they're two special people. No matter what happens, I'm grateful to them.