Friday, December 31, 2010


There are days when this is how cancer feels and cancer treatment feel. The world is out there, and is gorgeous, but I can't get at it. I'm trapped in the cancer cage.

The road to hell is paved with good intentions.

Expectations are getting to me. The feeling of expectations placed upon me, about how I'm expected to be. Be brave. Be on top of everything. Don't be angry. Be supportive. Don't make mistakes. Be clairvoyant about what everyone else around you needs, even when you are exhausted, strung out, have been running errands all day, worrying about money, and have just had a PET scan. Alone. Because apparently your regular cancer buddy is angry with you, and everyone else has conflicts. Even when you are terrified that you are going to get results that you don't want.

Well, the truth is I feel sad, angry, overwhelmed, and hassled. Sorry I'm not living up to everyone's expectations, but more to the point, frustrated that I'm not, and wishing everyone would cut me some more slack. I'm exhausted, very down, and fighting depression. And yes, I have some pretty weird ways of trying to cover it up.

If the lymph nodes are larger, we probably will start chemo again in January. Sounds like I have three choices at least. Continue paclitaxel, which has worked fairly effectively in the past. Try an oral, maintenance chemo, like Gemzar. Up side, not as much hair loss. Down side, probably more neuropathy in my hands and feet, and that is one of the side effects that tends to bug me the most, after only GI symptoms and nausea.

Another possibility would be to repeat Adriamycin in combo with some stronger stuff like cytoxin. I'm sort of tempted by this. A much stronger drug, possibly with the potential to knock the cancer out for longer, since it's been five years since I've had it. Down side, neuropathy, and the possibility of heart damage. I would need to talk through it with Dr L. Also, I don't really know if Kevin and Tess would be up for this. It would knock me out much more thoroughly for about four months, a lot more couch time, a lot less energy. Still, spring is looking fairly mellow from the work end, and we just have PODS to empty and sort in the next few weeks.

Bones ache. Not enough exercise over the break, so the steroid symptoms are worse. Right hand and feet are swollen, and I can't seem to get the lymphedema to go down, so my elbow aches all the time. Puffy face and collarbones.

(I do try not to whine.)

Still, New Year's Eve dance party to enjoy this evening. Dancing may break me out of the cage, at least temporarily.

I don't know. I don't think I can be a badass this week.

Thursday, December 30, 2010

Nothing left.

PET Scan.
Pierced ear that's infected.
Neuropathy. Tingling in fingers and toes.

Bills. Bills, bills, bills.
Kevin has caregiver's syndrome.

cancer patient
Working part time. (Work is good...)

Fighting depression.
Trying to start a garden.
A little bit of dancing.

Ballet is brilliant.
Ballet moms are brilliant.

Zazen and breathing help.

Friday, December 10, 2010

The question nobody asks

Helen, are you going to die?
Because if you are going to die, I'm going to come see you first.
- Alice Sims -

What's the prognosis?
Jennifer and Karen

No. I'm not. Actively anyhow. Any more than you are.
And I'm often annoyed that you don't have the guts to ask me this, when I can see it in your eyes.

As you all know, I talk about cancer, breast cancer, boobies, cancer statistics..a LOT. I am immersed in the culture of cancer and cancer care, and the bigger argument about health care (EPIC FAIL!) which is still raging in this country.

Sometimes I wish I'd shut up. Sometimes I'm sure you wish I'd shut up. But this one, PLEASE let me answer it for you.

I am not actively dying any more than you are.

Cancer these days, including metastatic cancers, GI cancers, all those nasty things that your parents either whispered about or hid when you are a kid, are now much closer to a chronic disease than the mostly fatal disease that they were back then.

Yes, I'm more likely to die of cancer than you are. But I'm not much more likely than your friend who has diabetes to die of it within, oh, say the next two to five years.

OK. Statistics. If you are an American, you are most likely to die of heart disease. One in two. Fifty percent of deaths, flat across the board. If you've been told you have a heart issue, or high cholesterol, guess what? Your disease is just as likely to kill you as mine is to kill me. Uncontrolled, you may be worse off.

Number two killer of everyone is cancer, all types. Memory is that it's about one in three. Number three is diabetes and diabetes related problems.

But why doesn't a diagnosis of heart disease get the response that cancer does?

My favorite written cancer story is called Grace and Grit. Written by Ken Wilbur but about half authored by Treya Killam Wilbur, it's about their lives, and the five years where they lived with breast cancer, and eventually diabetes as well. She was diagnosed right before their honeymoon, and the two of them lived with it during their entire marriage. This sound familiar to anyone? Its authored by Wilbur, using a large number of quotations from Treya's diaries. Wilbur has been writing for years about the perennial philosophy, and so their story is woven in with his own early philosophy. But they also went through it in the 80's, when breast cancer was killing more and more women.

One of the things Wilbur nails is the difference between the disease and the illness . The disease is what is happening physically in my body, and what that does to me. I have some cells that won't behave, that have learned NOT to stop growing and dying, and sometimes their growth interferes with other stuff, so I have to try and control them.

The ILLNESS is the vast cloud of cultural beliefs, myths, and gobbledygook that surrounds the disease. Pink ribbons, for fuck's sake. (Gag me!) The idea that it's always a fatal disease. Pity, fear, misunderstanding, the fear that it's contageous. Asshattery. Sympathy, support. Misunderstanding. Judgement.

One difference from heart disease or diabetes is that often cancer patients look like shit. Chemotherapy can be fairly obvious, and believe me, we don't just look half dead, we feel half dead. And that's pretty much now it works. Chemo kills you part of the way, killing the cancer at the same time, and then we hope that your body and immune system can rebuild itself over time from half dead back to mostly alive, without the cancer. The basic structure of this has not changed since the 1950's, and it's how almost all western cancer treatments work - chemo and radiation in particular.

Radiation for the chest for me was worse that chemotherapy, but gamma knife surgery was a piece of cake, other than taking steroids. Right now, I look in the mirror, and it bugs the shit out of me. My face is puffed up from steroids, and I joke with wertperch. The last chemo I had, strangely attached to, yes, HAMSTER protein (Nanoparticle Albumen Bound paclitaxel, an experimental drug, for those of you who like the fancy stuff) must have backfired, and I am slowly turning into a hamster. Steroids make you puffy, and over time they can make you grow more hair, so no whisker jokes, please....)

I know, I know, I'm rambling, but I'm trying to get there.

I. Am. Not. Dying. Any more than you are. I am living with a disease that to some extent can take over your life, but truly not dying.

There are about 120 women with metastatic breast cancer who talk on a a popular web site, and one of the things we constantly bump up again is that people have trouble coping with the question they can't ask. How long have you got? What is the prognosis? HOW SOON ARE YOU GOING TO CROAK? In the four years that my mother was dealing with ovarian cancer, exactly one person asked her that, and in the almost six that I have, exactly no one, until last week. Clever Jennifer, a nurse, asked what IS the prognosis? Thank the STARS! And wertperch once in a while gets the pitiful "How long does she have?" Sometimes he answers, sometimes he walks away, depends on the particular social graces and timing

But you know what? I can see it in your eyes, the moment when you want to ask me that. And geez, go for it. What's the prognosis?

Fifty percent of people with metastatic breast cancer die within two years. (pre 2002 - 22 months.)
Forty percent of people SURVIVE for five years.
Eighteen and a half percent of people are alive after fifteen years. (pre 2002 - 3 percent.)

Now stop. And think VERY carefully about the bell curve that this forms.

Half of patients die within two years. All the rest, except ten percent, go at least five. Why?

That is what statistically is called a long tail. The top of the bell curve ramps up really fast, and then the slope down is long and gradual. WHY? The ILLNESS, not the disease. My friends, I am GOING for the long tail. Fifteen years, just stay out of my Amazon freight train way.

My oncologist says he can pretty much tell how someone is going to do in the first few months of treatment. Or the first time he meets someone. About half the patients give up at the moment of diagnosis. They think Cancer = Fatal =I'm going to croak.. and they proceed to croak, treatment or no treatment. The other half say, Right. I'm going to fight. What you got for me? And a sensible physician, like Dr. Rosenberg, says we are going to take a big bat, and we are going to hit that sucker HARD. (And man, did they.) And the fighters tend to go on and on. They repeat chemotherapy. They repeat radiation. They do hormone therapy. They do clinical trials. And in the most recent study, which ran from 2005 to 2010, proves that it works, people routinely live with breast cancer for 15 to 20 years, or longer.

Breast cancer, unlike, say, ovarian cancer is typically extremely responsive. With ovarian cancer or stomach cancer, still, if you have it, and then it RECURS, you are probably going to have a tough time. They are resistant to a lot of chemotherapy drugs, with only a five to ten percent response rate. So they stack them up, and still only 30 or 40% of patients get their cancer croaking instead of saying, HAH, I am in your base, ignoring your chemo! Whereas breast cancer has a ton of good chemo agents, and you can stack those suckers up. Gemzar. Cisplatinum, and all the other heavy metals. Thalidomide. Now, as you go down the line, the side effects get nastier, but still. THEN you can do clinical trials. Right now there's one trial, for 30 women, where they will CUSTOM design a drug for the particular protein in your PERSONAL tumors! Designer drugs! I don't qualify, but man, how cool is that? We could get Ralph Lauren to sign on and design the hospital gowns, and people would beat a path to the door. If I qualified, I'd sign up right now.

The down side is, no one knows this side of the story. So we often get, shall we say, a misguided reaction? More and more, the blog I'm writing is about the story, and the fact that NO ONE has done what we are doing, which is living with this stuff as a chronic disease, rather than a fatal one. AIDS is similar. It is no longer considered a fatal disease, because of amazing treatment developments. Some of the side affects of the treatment are nasty, and the sociocultulural illness structure is undoubtedly even worse than cancer. A stigma within a stigma. "What's the hardest part of telling your parents you have AIDS?" "Explaining to them that you are Haitian." Did you know your jammies don't go with your lesions? Well, at least I don't have CANCER. (It's possible those jokes are way out of date, and no one else will get them. From when AIDS was first appearing, about 30 years ago.)

We are, none of us, dying of cancer. We are living with it, our families are living with it, our children are living with it. Some days we cope with grace, sometimes we just cope. Elizabeth Edwards' death was hard on us. It was a reminder that in spite of how groovy we are, and our good attitudes (SMILE OR DIE) and our juicers and our raw food diets and our gin and margaritas on the sly, that this could get us, eventually. That we could do everything right, and still croak. And these gals are the tough ones - they are, like me, living with lesions in their chests, heads, livers, bones...pain, side effects, loss of function, etc. They have trouble getting in and out of their bathtubs. They might walk with a cane. But they are badasses, to a dame.

And man, do they have GUTS. Grace, AND grit.

But truly? There is nothing worse than no response. If you want to know, ask the question. A stupid question, or a silly one, in my book, is far better than nothing. And really, that is a polite way to do it - "What is the prognosis?" is just FINE. Just think about your timing, I'd sort of prefer you don't ask me in the grocery store. Two other useful questions - "How are you TODAY?" Is far better than "How are you?" You might illicit far more info than you want with the latter..and, "What's new?" Is great.

So there you go. Prognosis - good. Side effects, sort of gnarly at the moment, but whatever. I won't look like a hamster PERMANENTLY. Family drama, a little over the top, but winding down. Work, fantastic. Weather, lovely. Fine, thank you, how are you?

Love, grundoon

Wednesday, December 08, 2010

I has a bucket.

Physical -
cracked lips
mouth sores
sore throat
upset stomach
puffy face
bloody noses
GI stuff
hellish weird appetite
swollen ankles

Emotional -
Mood swings
Did I mention insomnia?

Other stressors -
All three of us with local creeping crud
Garage sale planning
Me going out of town
Nutcracker - fun, but stressful!
Oh wait - gamma knife radiation?
Doctor's appointments
Bank account with fraud issue
Fake cashier's check
Caregiver's syndrome
Close friends with a death in the family - brain cancer, glioblastoma

Other than that...Doin' dandy.


This one really creeps Kevin out, he hates praying mantids.  I may change her, I love the merperson top half.   And seahorses.  But Is It Art?

Wednesday, December 01, 2010

Grief again

So lately I just seem to wake up crying.

It happened a few days ago, and again this morning, after one bout of being up. I managed fall asleep a second time, which doesn't always work, but the had an extremely odd dream.

I'm really grieving. This last round of no cancer/cancer feels like whiplash, and also has given me a real emotional smackdown. We had ten days. Ten days where we were told, and we got to hope, that I would be cancer free (or at least between treatments, and No Evidence of Disease). Then brain metastasis number two popped up.

And I wonder. Is this the new pattern? After the first round of breast cancer, and all the nasty treatment, I went on tamoxifen, and went three years almost to the day before a rediagnosis. That bumped me up to Stage 4, and metastatic breast cancer. Meaning we can treat it, but the odds of it going away all the way are slim.

I did chemotherapy again, and went another 9 months, and then the third round - and the cancer had travelled from chest, breast and lymph system over the blood brain barrier, and we faced up to brain mets and gamma knife surgery. I also repeated chemo for the third time, to treat cancerous lymph nodes in my shoulder, chest and along the trachea.

Since that surgery and chemo, chest appears to be stable, but the second bratty little brain squid reared it's little pointy head - approximately eight months after the first. HOWEVER - it appears to have popped up visibly on the MRIs in the space of about 6-8 weeks. Slowly, creepingy, it speeds up. It sneaks in, and takes over. Sooner or later, I stop hoping for a break, and start imagining continuous chemotherapy, more rounds of gamma knife, being on the steroid for the rest of my life...

Dearly beloved, I'm TIRED. And grieving. I'm grieving for my family, who never get to have NORMAL. They have me wired on steroids and irritable, exhausted from treatments and too many doctor's appointments, worrying about money all the time...

Denial, grief, anger, bargaining, acceptance. It's not once, but over and over that you recycle these emotions. I feel as though all my fuses are blown. The only two that are operative right now are grief and anger. I cry in the car. I cry in the shower. I cry over silly dramas that people create around me, and hurt feelings, and feeling misunderstood.

And I cry about letting go.

I don't think I get to see Tess dance the Nutcracker 10 years from now.

Most of the time, I am an optimist, a fighter, a person who is taking this on as a chronic disease. Who will handle the treatments they throw at me, try new stuff, do clinical trials, inject hamster proteins into my veins to fight this disease. But at best it's a stalemate. I no longer believe I can win.

And at what point is enough enough? Do I say, I can't take this any more, please let me stop? No more treatment. No more radiation, no more chemo. Now I just get to be comfortable, and enjoy the time I have left. It's not now. It's probably not soon. But it's coming.

I see the question that no one ever asks in their eyes. They ask about the prognosis, the treatment, the timing. What they really want to ask is, how soon are you going to die? Do you know? But no one asks, it's way too socially incorrect.

No, I don't. I know the stats. I know the pattern. Nobody knows when they are going to die, your doctor doesn't know when HE is going to die. But the part I know that most people don't, is that with metastatic breast cancer, there's a choice. Most women do not exhaust all the options they have for treatment. With ovarian cancer, if it comes back, it's usually as refractory disease - in english that's cancer that does not respond to most or any chemotherapy. Breast cancer has dozens, and it is generally considered "responsive". But women..just run out of steam. Choose to stop treatment. And having seen two people through it, I know what happens next.

So it's possible that I have a much clearer idea of when and how I might die than most people.

And it is making me cry.