Hmmm.

I'm not sure how I feel. Weird. Kinda like I've been poisoned (probably because I've been poisoned).

I'm at work. I worked part of the day on Wednesday. Thursday, yesterday, went by in a blur of fog and fever.

I've felt worse.

I assume that toxicity will build over time. If this is my life -- feeling at best vaguely bad -- then I don't know why I would continue this treatment. I'm not exactly sure why I started it.

I'll have to think about it, I guess.

One Down(downdown)

I had Unsolicited Advice Nurse today. I've seen her in action before. I once saw her tell a severely nauseated pregnant woman, who kept returning to the hospital for hydration and vitamins, that she should "enjoy this exciting time".

She gave me an earful today. This is what she said: Cancer is a road, and you don't know where it ends. You have to be flexible and just kind of go with it. Many woman tell her that cancer has been really good for them. They appreciate life more and really savor the good times. That's what I need to try to do.

And then she patted my leg.

I didn't tell her what I think of that nonsense. I'm accustomed to hearing it from sick, sick, woman who are desperately trying to make lemonade. I've heard the cancer-is-the-best-thing-that-ever-happened-to-me-before speech. I consider that attitude an illness.

I smiled and nodded at the nurse. I plastered a phony-ass smile on my face, because that was the path of least resistance. I didn't tell her that I KNOW where the fucking road leads. It leads to my death and my husband's sorrow. It leads away from Christmas trees, summers, vacations, dancing, dreaming, and vanilla ice cream. It leaves my brother Paul the last of the "little kids" to survive. It leaves my sister Jane the last living member of the RedHairFreckleFace Club. It leaves my sister Mary without her baby sister.

And I didn't need any life lessons about appreciating time. I appreciated time. I have a craft box full of glitter and pipe cleaners and popsicle sticks and crayons and pens and feathers and sequins and paints and papers and glue and I DON'T HAVE KIDS. I own three different disco balls. I've used a case of champagne to make punch for a party, I buy Mardi Gras beads by multiple gross, and I was Reno's highest ranking female craps player. I got married in a black mini dress and there's a camp named after me.

That nurse doesn't know my life. She doesn't know that I've already learned the lessons I needed to learn about mortality.

Fuck her.

And fuck me. It's my own fault. I started it by saying that I didn't want to lose all of my hair in two to six weeks.

She asked me if I'd been to the Look Good Feel Good Class. And then she launched into her Cancer Can Be Good bullshit.

The woman next to me has chemo every day, from 10:00 AM to 4:30 PM. She does that every day for a week, then has two weeks off, except that during that two weeks her blood counts tank and she usually has to come back to the hospital. Her spine was "double penetrated" with radiation, and now her stomach lining has thickened. She has a hiatal hernia. She has a rare cancer in her pelvis and lungs. She's in pain. She has bad side effects from chemo. At one point they had given her 6 months to live. She has a four year old and nine year old. Her husband is divorcing her.

Another woman in the Chemo Suite said, "oh, I'm sorry...." and the woman with the cancer, the all-day-for-a-week-chemo, the sickness, the pain, the asshole husband who's leaving her, and two kids to care for said: "Oh, it's not so bad".

Oh, it's not so bad.

I started laughing.

I think that we're mad. I think that the professionals who help us have to turn off some kind of compassion switch -- because being present to so much pain every day must be impossible for them. So they offer platitudes and Look Good Feel Good classes, and if they're sensitive by nature they probably have to work to stave off depression.

And the sick women -- well, some of them have hope of a cure, and that's cool. I was one of them once, and I wore that possibility as armor. I didn't spout platitudes, but I was generally upbeat. Being bald didn't phase me and I plowed through treatment the best I could.

But this is different. No one -- and I mean no one -- needs to be thinking that stage IV cancer is the best thing that ever happened to them. If people want to find dignity in accentuating their cheekbones and hope in pink t-shirts, then they can knock themselves out.

As for me... I'll never complain again. I'll suck it up. Because along with the cancer, the pep talks are killing me.

Morning

I have an 8:30 AM appointment in the Chemotherapy Suite this morning. I've been informed that this first round of chemo will take aaaall day. First they'll give me a few drugs to ward off allergic reactions -- Benadryl, Decadron (yes, the drug that made me ravenously hungry and crazy), and somethin' else I can't remember.

Then they'll give me the Taxol and the Avastin. Not sure of the order, but I know that the first time they'll infuse it slowly and watch my response. Each week they'll speed up the process so that eventualy it will just take a few hours (I think).

The area around my new port hurts some, but it's not bad. I have two small incisions. One runs diagonally, about an inch long, beneath my right clavicle. The second is just half an inch, high and toward my neck, in the area of my jugular vein. Both are held with just a few dissolvable sutures and then covered with large globs of superglue. I have small incisions within fields of dried glue. If I'd known I would've brought the doctor some glitter to sprinkle on it before it dried.

I'm in less pain than I was last week. I know that I should probably try to ramp up my attitude some. It's hard to be gung ho.

Eh.

The port was no big deal. I'm a bit bruised and sore. I woke up a few times during the procedure but it was all very pleasant and druggy. They brought me warm blankets.

The doctor, who was very young and had one of those idiosyncratic goatees, held my eyes for a moment, smiled sweetly, and said, "My mother was diagnosed with breast cancer when she was 41. That was 1980 and she's still alive." Clearly, he didn't know that I had mets. I didn't educate him.

Off for chemo tomorrow

How'd it get so late?

I'm going to tomorrow (today) to get have a port put in. It's a simple procedure. It's been a quiet weekend.

Now I'm tired.

It's decision making time in CancerLand, and there aren't any roads that lead to the Peppermint Stick Forest or Gumdrop Mountain.

It's nearly 3:00 AM and I'm wide awake. I'm experiencing a high level of discomfort, with pain radiating through my chest, rib cage, and mid to lower back. I can't lie down, and I can't sit upright. I'm taking shallow breathes on accounta it hurts too much to fill my lungs with air. I'm trying to relax. Being upset just makes my breathing worse.

That's an awfully kvetchy-sounding paragraph, but honestly I'm just reporting.

I'm in the recliner in the guest room, with the light on... waiting for the drugs to kick in, wondering how I'm going to be able to function at work in just a few hours. The true love of my life is sleeping in the bed next to this chair. He joined me here during the night... said he didn't want to be as far away from me as our bedroom. I feel bad that he's sleeping in a less comfy bed with a light on, but I'm selfishly glad he's here.

I had my infusion today, but I didn't have any shots. No giant needle in my abdomen, or narrow needles in my hips. I have failed that treatment -- you know, the one that was relatively easy, only once a month, and held the key to long term (several years) survival.

On Monday I'm having a port-a-cath inserted into my upper chest wall. It's minor surgery, and it will mean an end to the stressful search for a "good" vein. It's a metal disk, about the size of a quarter but thicker, that'll live under my skin as a "plug" for IV's and needles. It sounds weird and science fiction-y to me, but glad to be getting it.

On Tuesday I start chemotherapy. It wasn't an easy decision, and until Thursday norning I was still undecided. Bottom line is that liver mets aren't good. They can ramp up quickly and kill you fast.

I absolutely believe that there are worse things than dying, and that it's inevitable, anyway. There's a delicate balance here, and I want to pay attention to it, and do what I can reasonably do to live, without feeling worse from chemo than I do from cancer.

I have no interest in eeking out every last moment I can on this earth.

But starting Tuesday I'm going to try this, and hope for the best.

I'll be taking two drugs, Taxol and Avastin. I will receive treatment once a week for three weeks, and then have one week off. That is called one cycle. I will continue to do cycles of chemo until it stops working (or it's decided it never starated working), or I can no longer tolerate it (or choose not to tolerate it).

I'll lose all of my hair, and as long as I'm taking Taxol it won't grow back. I have very different feelings about this than I did the first time I lost my hair. It was a small matter to me, then. But then I knew there to be a reasonable chance that I could live to be old and grey with Eric. Now I know that I'm going to die -- too soon -- and probably without hair. It doesn't make me happy.

So, I'll be bald. There's not much nausea associated with this regimen. I'll likely have flu-like symptoms, bone pain, joint pin, and possibly neuropathy (pain or numbeness in hand and feet).

I don't if it'll work, or how I'm going to feel, or when or if I'll be able to work.

And that's my icky story in a brightly lit room at 3:30 in the morning.

It's Better Than Marconi Plays the Mamba

I did go to work today (yesterday, I suppose), and I had a nice day. I had lots o' work to do, and I laughed, too. I rarely thought about cancer.

I've had several songs stuck in my head tonight. One of them is "Jackie Blue". Now it's yours. Enjoy!

Decisions, Decisions

I'm torn this morning. Part of me wants to stay home from work after getting all of that icky news yesterday. I own the world's softest blanket. I found it on the guest room bed in Eric's parents' house, and let's just say that I came home with it. It's the nicest blanket ever, and I could sit under it and cry and feel sorry & lonesome. That sounds pretty good.

On the other hand, forty-one short years of living have taught me that going to work & getting stuff done is the road to a happier day (and less red eyes).

I know there's nothing really different between yesterday and today. I just have more information. The story's still the same.

Eric is worried and sad this morning. Now he has to go keep the attention of a roomful of teenagers. Soft blankets and a sniffley day aren't a realistic option for him.

Well... back from the oncologist.

It was actually a little bit worse than I expected, but it's nice to know that I can still be surprised. ;)

Highlights are that I now have mets to my liver. That's completely new. There's progression in my lungs, and LOTS of progression in my bones. After listing many new sites of bone mets the report concluded with words like extensive, widespread, and new.

I've been thinking about it, and really except for DEGREE, the only thing that could be worse would be hearing that I have mets in my brain, and to be frank they haven't checked for that yet.

They took some plain films today of my right hip and femur-- trying to ascertain the extent of the "hole" as the onc put it, so that we know if they should radiate me or put a pin in my leg before radiating me so that my leg doesn't fracture.

So, there it is. I plan on going to work tomorrow, but my mood comes with no warranties!

We meet again.

I guess it's a Monday, alright. I don't feel particularly well-rested, despite the quiet weekend I had with Eric. We went to the movies yesterday -- saw The Illusionist -- but that was about it.

I owe a few folks emails, and I apologize for being so bereft of yak yak yak.

Monday morning and I'm going to work. The odd political situation that made me an Innocent Bystander is NOT resolved, as previously posted. Now an official grievance and charges of harrassment have been filed. It has ratcheted up. Sigh.

I'm leaving work two hours early today to go meet with my oncologist. I'm hoping to be wrongwrongwrong. My "internal sense" of my situation (as the onc calls it -- I call it pain) has been on the money so far, but this could be the time that the pain is all in my head, and not in my bones. We shall see.

I saw an ad recently. A beautiful woman in her late fifties, early sixties... bald... gorgeous... looking up at the sky with a look of determination and almost joy. The copy: We can live without hair. We can live without (something other). We can't live without Hope for a Cure.

Oh?

Checking pulse. Wiping Brow.

Fuck them.

Phooey.

Eric and I have been planning to attend Earthdance for many months now (see Earthdance International and Earthdance Northern California). Earthdance has been one of our favorite annual events of the last few years -- music and camping at the Hog Farm, culminating in a simultaneous worldwide prayer for peace.

We're supposed to be leaving work early today and driving up north... picking up Lisa on the way.... meeting Leah there this evening and setting up a cute little camp. Leah was bringing her canopy, and I had a pretty purple sparkley hanging for it.

Eric was going to make us breakfast burritos in the mornings. Fast and yummy.

I was going to giggle with Lisa and Leah. Probably there'd be a few jokes that Lisa and Leah and I would have thought hilarious, and Eric wouldn't... then he'd look at us like "you guys are crazy" in his cute-Eric-way, and we'd have laughed even more. Then Eric would have smiled his big beautiful light up smile.

I knew I wasn't going to be able to dance. I was prepared to not dance. But I wanted to sit in my comfy camping chair -- we call it the Charlie Chair, on accounta Charlie gave it to me when my back hurt so much at Fair -- and listen to the music, and watch the people, and be with Eric, and be with my friends. I wanted to eat fried stuff and food on sticks.

It gets so cold there at night. I was going to bring all of my warm clothes. In previous years I've brought aaaallll of my warm clothes -- long underwear, gloves, hat, sweatshirts, flannels, fleece, coat, etc -- and I've wound up putting on every single item I'd brought.

I was going to pack my mini-mag-light and my LCD, my glow sticks and glow-in-the-dark tattoos, Roy and Special Sue and Special Ed, my purple fluffy boa, my madlibs, a gallon of cosmopolitans and my oldest, dirtiest, sneakers.

We had to cancel on accounta I can barely walk.

When I was telling a co-worker that we had to cancel, I was trying to do that look-on-the-bright-side thing, and I said, "But, oh well, there's always next year..."

And then my heart skipped a beat as I recognized that next year, which is an illusion for everybody, is an illusion and pipe dream for me. If I don't feel good enough now, I'll likely feel worse a year from now.

Have fun while you can, people. Do what you want to do now. Thank god I did, when I could.

As I am victorious, I can afford to be gracious.

For those of you who have been playing along at home: the weird/political/dramatic situation at work has been resolved in my favor. I'm not going to complain because I WON, but I do feel burnt that it ever went on as a long as it did.

Now I hope to go back to my nice, quiet, job.

Bedtime.

In just a few months I will be counted among those women who have survived five years following an initial diagnosis of breast cancer. The five year survival stastistic is commonly quoted. It includes plenty o' women like me, who will die from this disease, but not within five years.

I'm already feeling stiff necked and snipey about Breast Cancer Awareness Month. October -- once one of my favorite months -- is just around the corner. Oh, well.

I was 36 when diagnosed with cancer. It sounds so young to me now.

On the drive to work this morning I heard a song with lyrics that amazed me. It's a sweet accoustic-sounding song by Death Cab for Cutie, and the lyrics begin:


Love of mine some day you will die
But I'll be close behind
I'll follow you into the dark

It goes on in the same theme: he will follow her in death. It's supposed to be heartfelt and romantic, but to me it just sounded like a bad or misguided lie. The truth is so much harder than that -- that some people die, and others live. And they learn to be happy again.

I sound grouchier than I feel, I think. I'm on the right side of the five year numbers, and over a year with a stage 4 diagnosis. Here's the thing. I've been thinking of my life in years instead of decades (my 40's, 50's 60's). And some time... perhaps soon, because who really knows... I'll start thinking of my life in months instead of years. And then it's weeks instead of months, and days instead of weeks... then hours instead of days, and minutes instead of hours, and then there will just be moments. And at no time will any of it seem like enough.

CT scan in the morning, then it's off to work.

I wish it were Sunday. That's my Funday.

I edited the previous post... took out the name of my school district. It's not that there's anything a-non-e-mouse about this blog. I just don't want Special Sue and Special Ed held up to public ridicule when someone Google's the district.

I'm going to work this morning. Tomorrow I'm going for a CT Scan in the AM (with an IV infusion beforehand, dammit), and then I hope to go to work in the afternoon. I feel tired.

I did a whole heap o' nothing this weekend, 'cept going out to diner w/ Tom and Corinne -- celebrating two birthdays (one way late, one a little early) and Corinne's fancy new job.

They made me laugh, and that rocks.

pa·tri·ar·chy

1. A social system in which the father is the head of the family and men have authority over women and children.
2. A family, community, or society based on this system or governed by men.
   

The classrooms may be run by women, but the school district where I work is run by men -- MUCH more so than in any private sector job I've had.

It's gross.

Good morning.

Or maybe memories do help. I don't know.

I'm home from work today so that I can get a bone scan. Bone scans are a lengthy process, although much of it is sittin' 'round and waiting.

I'll walk down to Kaiser at 10:00 AM, and they'll inject a radioactive tracer in my arm. That'll likely be the worst part. Ah, for the plump, visible, pre-chemo, veins of my youth!

Then I'll go away for two or three hours. Then I'll return to Kaiser and wait (they are always backed up).

Then I'll have the scan, which will take about an hour. I can't remember if the table moves or the gamma camera moves.

I do remember that I'll tell the technicians that I have cancer RIGHT AWAY. And I'll make a big show of ouching as I climb up to the table (which won't be such a show today). They see many patients a day, for a broad range of reasons. More than once they've been "rough" with me and have hurt me -- but I think it's because I don't look like someone who requires extra special care.

Another one of the Nice Cancer Ladies died. She was 44 years old, and a pip. She kept a positive attitude and ate a vegan diet and took all the supplements and was known for saying things like: I wish they'd hurry up with that cure! I'm holding on until they do! Her name was Karin.

It's amazing how many women believe that a cure is just around the corner. Like, really believe it. Really believe it, and really believe that they're going to be able to be IN on it, when it comes.

What are their doctors telling them? And what happens to critical thinking in the face of deer-in-the-headlights fear?

I believe I only posted one picture from Alaska. I'll try to remedy that soon. Here's my favorite pic of the inside passage:

And I have to go to work tomorrow.

When I read blog entries from September a year ago, Eric and I were very, very, busy. We had plans -- dinner parties, concerts, plays. Every Friday-Saturday-Sunday in September was already booked, and I wrote that I wanted October to be a "no fun" month.

Now it feels like every month is a no fun month.

I don't have the energy for it. I don't the energy for FridaySaturdaySunday activities... for dinner parties and concerts and plays.

I look back at my Old Life -- even my the Old Life POST-fucked-up-prognosis -- with such longing. It makes me cry. It makes me feel like a small hard person with a small hard life. I look backward with jealousy and ahead with dread.

I don't know that memories help.