Saturday, November 15, 2008


So what's chemo really like, you ask? Well, dearly beloved, let me tell you at least of my own experience.

Kevin and I usually arrive around 9:30 am, although this is going to change. What I'm describing is a fairly typical regimen for breast cancer, although there are LOTS of different protocols, and other types of cancer have their own.

The first bit, which yesterday didn't go as smoothly as I'd hoped, is to access a vein. I had a port-a-cath installed a week ago, which is a little subdermal gizmo with a rubber top, that's attached to a tube running into my vena cava. That means generally they can get a blood sample for labs, and give me chemo and the associated drugs, through the port, rather than using a needle in my arm. I dislike getting poked with needles in the arm every single week, and I generally find an IV uncomfortable even though they are supposed to be painless, so I like having a port.

Alas, this week it was not to be. They tried to access the port, but since the surgery is only a week old, there's still some swelling, so they couldn't hit it. Three tries, and the nurses gave up. They don't like poking around any more than necessary. So the old IV it was. Always in my left arm, and I tell you, I'm running out of veins.

Then they give a passle of pre-meds, which decrease the risk and the discomfort of chemo. Notice I said decrease, not eliminiate.

Mine looks like this - tagamet, to decrease stomach acid. I sometimes ask for that first, since it's common to arrive with an upset stomach. Benadryl, to prevent a major allergic reaction - anaphalaxia - to the chemo drug or drugs. Dexamethazone, a steroid, also to prevent an allergic reaction, and to make the chemo more effective. Ativan, an anti-anxiety drug, both to offset a manic reaction to the dexametnazone, and also anti-nausera - most tranquilizers are also secondarily anto-nausea drugs.

These take about two hours - I try to eat lunch before the atavan and benadryl hit - in other words, when the room starts spinning. Yesterday it was a shrimp burrito, and it was heaven.

Then they start the taxol. First off, many chemo drugs are caustic, so the nurses don extra-heavy duty protective clothing. Imagine a hazmat outfit, but printed in happy happy pinks and blues, face mask with an eye shield, and heavy duty, elbow length rubber gloves. I want to steal one of these for next years' halloween costume.

The taxol takes 90 minutes, and generally I sleep through most of it. One of the nastier side effects of taxol is that it seems to have weird emotional side effects - I almost always cry about 30 minutes into it, and I'm typically weepy for about two to three days after, until it's back out of my bloodstream. Hard on my soul, and hard on the people taking care of me.

On this regimen, the next thing is Avastin. This is not a traditional chemo drug (poison - kills all fast dividing cells), but an antiangiogenic. Cancer cells, in order to become tumors, have to fool your body into believing that they are normal cells, and to grow a new blood supply. Avastin prevents new capillaries from forming, so new tumors get starved. Very nifty trick, that.

First time I had it, it took 90 minutes. This time they went to 60 minutes, next time I can go to 30, if i don't have a bad reaction. Again, generally sleep through it, but I have movies and books on CD just in case.

All told, takes around six hours. Then they unplug me, and I stagger home in a fog of drugs. One of these tends to wire me up, so I don't always sleep well the night after the chemo. Also makes me feel really hot and flushed - I look very pink and healthy, ironically.

It seems to take about three days to wash back out of my system. The second day after is usually the worst - energy level is lowest, nausea is highest. I've never ACTUALLY hurled from chemo, I take a VERY expensive anti-nausea drug called Zofran, but in some ways feeling like you are going to hul but never actually doing it is almost worse. At least when you have flu, and you DO hurl, you feel better for a little while after. This just goes on continuously. Bleagh.

Day four, Tuesday, so far I have felt miraculously better. Not 100%, but far better than the day before. I get two more good days, then back to the grind.

Thursday, November 13, 2008


Okay, no energy to write much tonight, but after juicing and talking about chemotherapy and nutrition and organic fud and health and my overpublicized digestive system and cancer and blahblahblah until the cows come home, I have to say that
Weight Watchers Recipe Cards, is my single most favorite web site EVAR.

I laugh SO hard every time I come back and read them. I try not to do it to often, so the text is fresh.

The soup is love, and we have an electrified fence.
grun o'doon

Monday, November 10, 2008

What does coping with grace look like?

My dear,

OK, this is really hard. I'm already tired and sick of this treatment, and it's barely begun. Yesterday one of the imps's friends had a gymnastics meet here in Davis, and I really, really wanted to go - and I didn't get out of bed. She qualified for state competition, and I MISSED it. Waves of nausea keeping me home. I don't really mind when something hurts, unless it hurts a LOT, but I fricking HATE being nauseous - and chemo is really all about nausea. Already have mouth sores. Nothing tastes good. Nasty metallic taste in my mouth. Feel like hurling all the time. It SUCKS, SUCKS, SUCKS.

I'm going to say this once, and then hopefully not say it again I'm really, really scared and angry. I'm told that the average survival for someone with this beastly disease at this stage is 2 to 3 years - 50 percent die within that time. Fuck average. Average sucks too, at this point.

I can't believe how unfair it feels. I know that I'm otherwise in good health, and will probably beat those statistics, and blah blah blah, but it creeps up on me in the middle of the night. My daughter is TEN for goodness' sake. I want to see her graduate from high school! From college! Thirteen! How can I croak on her when she's THIRTEEN? And it could be chemo or other treatment ALL the rest of the time. No break for me, no break for her, no break for wertperch. Just chronic disease, horrible, debilitating treatments, and misery.

I can retire at 55. 10 years, 11 years - how has it come to me praying that I get 10 more years? Do you have any idea how many things there are that I still want to DO? I'm already dragging myself around like an old rag bag - my body hurts from having the port-a-cath put in last week, and still bloody sick from the chemo. I have two new scars on my left breast, and that's the only tit I have left. I burst into tears on Kevin yesterday, because I feel so ugly and sliced up, and how could he possibly feel any attraction to me? I feel like a car that's ready for the junkyard. Yup, right bumper's gone, upholstery is worn out, sound like she's blown a head gasket - you should probably consider her totalled - it'd cost too much to fix her up, at this point.

I still have hope, but it's feeling like a long, hard road, with no guarantees that I ever get to feel good again. Cancer as a chronic disease is still an ugly proposition. Oral chemo - for the duration. Clinical trials. Monoclonal antibodies. Bone marrow transplants. It's not like diabetes, where if I manage it properly I can live my normal life span. I can go ahead and do every single thing RIGHT, and it's still all a gamble. It may make exactly NO difference, chemo may just make me miserable all the time I have left.

I apologize for this, people. There's really no reply, I just needed to get it out of my system. I'm trying to put on a fairly brave face for the imp, and even for wertperch, who is taking all of this pretty hard. I needed to have a place where some of the more painful stuff can leak out of the cracks. You don't have to do anything about it, just listen. (Read?)

In a way, I feel like I'm the Queen of Lies with the "brave face" I'm putting on. I want to cope with some sort of grace, and I feel like I'm missing the mark somehow.

What does coping with grace look like?

Thursday, November 06, 2008

The five stages of grief - sort of.

Dear cuzzes and others,

THRILLED beyond speech that Obama was elected. History in the making. I cannot tell you how joyous I am that a non-white person is in the white house. For the first time ever I can tell Tess that she could grow up to be president - and not actually lying.

Love his wife (altho WHAT was it with that red thing? Oy!), and that she doesn't pretend that everything, or her marriage, is perfect - Cindy McCain gave me the allovers - Stepford Wife from hell. Is she really an android?

TESSIE DANCED HER NUTCRACKER PART ON POINTE TODAY. First time EVAR. She's only been on pointe shoes for about 6 months. The kid is amazing, everyone - she is SO beautiful and expressive on stage, and she says "Mama! I love dancing on stage, and having people watching me dance!" (Ulterior motive - those of you here for thanksgiving, you can see her dance in it. hint, hint, hint, entice, entice, entice. And maybe even see ME dance in it! I'm practicing the part of a Party Parent in the first act - depends on chemo, though.)

I had a port-a-cath put in today, and it was a beeeyitch. Took FIVE doses of painkiller to get it down enough for me to go home. two pentathol, three vicodin. It goes like this - pain - narcotic - nausea, narcotic wears off, pain, narcotic, nausea from the narcotic, pain. Would someone PLEASE invent a painkiller that doesn't make me want to HURL?!?!? So I'm trying to find the exotic midpoint between pain low enough to handle, but without the hurling part. Tell me some good fifth grade barf jokes, I might need 'em.

OK, enough of that.

Chemo tomorrow, and they are going to give me the Steroid From Hell to me intravenously, instead of orally. Apparently this is far less likely to cause the manic jitters I had last week. So glad they THOUGHT OF IT. Wish they'd thought of it LAST week. I fricking hate hate HATE our medical system.

My cuz told me about a friend of hers they sent home the SAME DAY as her mastectomy. They tried to send me home the day AFTER the mastectomy, and I threw a fit. I was still not really handling the pain, and I was damned if I was going home, where I couldn't tell the nurse to crank up the fricking morphine. I had the surgery on a wednesday morning, and I went home on saturday. The treatment of your friend is totally, unutterably fucked. It enrages me. It boggles me. If Obama fixes exactly ONE thing, let it be our medical system. No, the war. No, energy and global warming. Fart. Ok, three?

Guess who we had a visit from last night. Wait for it.... Helen Anne! I had not seen her in something like 14 years - I think I last saw her when Nigel was FOUR. It was amazing, wonderful, fantastic - she looks exactly the same, and the two of us talked a double wide blue streak for three hours. It was SO much fun. She sends her love, and we traded much skuttlebutt about both extended families - were all of your ears burning?

I'm the walking personification of the five stages of grief right now, can you tell? Only she got it wrong. I can experience them all - denialgriefangerbargainingacceptance - in the length of one e-mail. Super Speedy Grief Queen!

However, Therese and I decided the process was missing two, especially in the grief after the loss of a boyfriend -
Denial, Grief, Anger, Bargaining, BITTERNESS, REVENGE.....and acceptance.

Remind me to post piccies of my fabulous new haircut!

Love you all tons, gobs, buckets!