October is the Cruelest Month

A reasonable alternative to the omnipresent pink ribbon. Why not put this on your sassy scarves and cotton candy colored stand mixers?

It's Breast Cancer Awareness month, complete with beribboned water bottles, lipsticks, vacuum cleaners, ankle socks, cupcakes, underwear, teapots and cell phone accessories.

I've already talked about it. You know how I feel. My post from last year pretty much says it all.

MegaYak

The jury's still out on whether or not the chemotherapy's working, but the Decadron is as effective as ever! It's 3:30 in the morning and I'm wide awake.

Chemotherapy today went smoothly. NurseLisa is among my favorites -- clearly, as she's allowed a real name, unlike UnsolicitedAdviceNurse and FrogNurse and NurseBubbles. Here's why we like NurseLisa:

1. She knows how to -- and does -- maintain a sterile environment on all occasions that call for a sterile environment. You'd be surprised by how often this doesn't happen.

2. She can find a vein. She doesn't always find a vein on the first try, but she finds one, and she does so with a confident manner. I occasionally call her The Vein Whisperer.

3. She makes Eric laugh.

So, I spent many hours in the blue plastic recliner, just a few feet from my darling Eric, and then I came home & played silly computer games and searched YouTube for music. We ate pizza. Eric went to his book club. That was that.

I think I already mentioned that Eric and I missed quite a few planned activities in September. Two plays, an evening of drinks w/ old friends, and a 3-day music festival come readily to mind. We missed a lot, and a lot happened.

For instance: I found myself unable to effectively walk. For the first time in my life (other than checking out of a hospital) I was wheeled about in a wheelchair, because the pain was simply too intense for me to walk. And then two weeks later I danced (for a few songs, anyway) at a Phil & Friends concert at the Greek.

The juxtaposition can make my head spin, as can the rift in the space time continuum which makes my work day so madly paced and most everything else so oddly slow.

My hair is everywhere. It had grown to 4 or so inches, but I cut it down to an inch today. I learned from my two past experiences with hair loss that the process of losing my hair is more difficult than actually living with the loss.

The process is upsetting. It's distinctly ouchy, and the falling hair goes everywhere, everywhere.... clogging the sinks and shower, clinging to shoulders and back, making it's scritchyscratchy way down my collar, into my coffee cup, aaaalll over the pillow and sheets.

It's clumped in corners and stuck to mirrors.

It's upsetting and embarrassing and omnipresent. If I touch my hair, it falls out. I've accidentally pulled out entire... I don't know what to call it .... locks of hair. With my hair so short, and so much more thin than it was in my bright-red-thick-haired youth, how can I possibly be producing so much distressing hair debris?

I need to shave it. And I would have, already, except I'm smarting from one person's insensitive comment.

I prepped a few folks at work about my impending baldness. There's a woman who sits next-ish to me, who's new this year -- thought it would be easier on both of us if she had advance warning. And there were a handful of others who I felt might need a little extra head's up to the hair off.

One of them -- Anger Management Nurse -- who, by the way, once told me that she knew I must be praying for a quick death (yes, and those were her exact words), listened to my story, and then told me (with a bit of a knowing smile) that my hair was quite adequate. She certainly couldn't tell that it was coming out, and she didn't think anyone else could tell either. And then she added something.... some bit of smirky something.... that indicated that my only reason to shave my head would be to draw attention to myself. She implied that I wanted the attention.

I think it's absurd for her uninformed commentary to impact my actions, but there you have it. I didn't strangle her or cry or look at her mean. I'm not going to hold a grudge and I'll shave my head soon. But for now, for whatever reason -- although I know it shouldn't -- her words have stuck in my craw.

I'll get over it soon. And then I'll just be a bald woman. The SF Bay Area is as fine a place as any to be a bald woman, and I'll handle the daily trickle of people at work who come to me with looks of horror or sadness or tears and offer me hugs & condolences & prayers & stories of miraculous recoveries or tortured deaths because they think my cancer has "come back".

I'll let the grocery store clerks and the new barristas at starbucks try to figure out if I'm a man or a middle aged lesbian, or a poster child for the Stop Smoking movement.

All of this fun awaits. And sleep, too. Sleep awaits me. Hopefully soon.

Just Stuff

I wrote about my will, but I don't have that sort of control. I can't control this disease, and I can't control my nature, and I can't control my desires. In the end I think I'm just grateful that things aren't worse. That gratitude is genuine, and doesn't keep me from shaking an occasional angry fist at the sky.

My scalp hurts. You may not have had occasion to learn that it hurts to have your hair fall out from chemotherapy. It does. (If you've had occasion to learn this, I'm sorry.)

I missed an appointment with my oncologist today. I was tied up at work -- busy, busy, and I had planned poorly. I didn't mind missing the appointment. There's nothing for my oncologist to say. It's all about waiting and seeing.

Tomas da Silva dropped by this afternoon, bearing gifts -- a new novel to read and a fine stack of his exceptionally delicous shortbread. I love Mr. Silva's shortbread, and only share them grudgingly. I even limit my own consumption, trying to maintain a ready supply for morning coffee.

Tomorrow's another busy day at work, and then Friday I have chemotherapy.

That's all.

Toozday

I enjoyed the concert on Sunday... enjoyed the opportunity to dance, even if it was just a little bit of dancing... and to be drawn, again & as always, into the collective consciousness that is created by that music, those people, that scene. It's a challenge to describe. It was good.

It was also a difficult weekend. The symptoms associated with chemotherapy seem to advance at a rapid pace. My fingers and toes are numb. My hair is coming out in clumps. My nose bleeds & bleeds & bleeds & bleeds. And I've only had two treatments. What will life be like after eight? Or ten?

And will the treatments "work" at all?

Honestly, I usually don't even conjecture that much. I just go through my days and focus on having as good a time as possible. Sadlysadly, I know many women who share this disease, and prognosis, and symptoms. I don't know any women in my position who have been able to maintain the quality of life I've maintained. So far. Knock wood.

I am very, very, fortunate in that -- it's good fortune, and an amazing, wonderful, handsome, smart, funny, husband, and it's also my will. It's what I've chosen to do, for both myself and my adorable husband.

I'm just rambling now.

I should really get back to work and try to write about this stuff later.

Maybe. We'll see.

Halloween, Easter... Candy Holidays Are Good, Too

It's Yom Kippur and there are four Yahrzeit candles burning in our home -- one for my father, my mother, my brother, and Eric's father. The candles burn for 24 hours while we're supposed to be fasting and atoning for our sins.

I've fasted with Eric before, but not this year. And, frankly, I've never known Eric to do anything that required atonement.

I prefer holidays with pretty decorations and good food. Still, the candles are nice. It's good to be home, it's good that it's the weekend.

I stayed home from work yesterday although I really could have (perhaps should have) gone. I felt more or less okay, but decided to stay home and make Eric a nice pre-fast dinner instead of going to work.

It required all of my energy. I'm just not that spry. But I made a nice, traditional, Arroz con Pollo (which was started by rendering the fat from chorizo to use for the sofrito). And I made a yummy, buttery, brown sugarish, cream cheesey pastry thing for dessert.

He was happy, and I was happy and our friend, who's in town for the Phil show tomorrow, was happy.

Today I'm tired and taking it slow.

True Story

It was a chemotherapy day -- a pleasant enough experience in the blue plastic recliner. We laughed a lot ... enjoyed speaking with the student nurse who "interviewed" me.

I'm working tomorrow. I don't typically work the day after chemo, but there are things to do & meetings to facilitate. It's a stretch.

We'll see.

Something happened on the way home from work yesterday. It had been a typical sort of day in the vaguely disgruntled mode. I didn't feel terrible, but I wasn't turning back flips. I was busy and distracted and irritated-around-the-edges by Anger Management Nurse.

I was still reeling from the news I received of the sad condition of my liver. Oy vey. My liver.

Anyway, that was my day. And then I was in the car -- reducing my carbon footprint -- and I turned on the radio.

The song that was playing instantly took me to a (literal) hundred concerts I'd attended with Eric, that I'd attended with my friends. In that moment, I remembered something about myself. I thought about dancing and laughing and silliness. Stupid crafts and cocktail parties and mix tapes. Sparkles and glitter and travels and collages.

I thought about Eric, and how he introduced me to a world I didn't even know to imagine; how he took the ability I'd always had -- even in the darkest of my years -- to experience joy, and spun it into the stratosphere. Eric turned the lights on and showed me something fun, and real, and loving, and without irony.

And so there I was, driving home, grinning ear to ear. Which makes me very, very, happy for the radio, and other stuff, too.

Ugh.

I read Elie Wiesel's Night this summer. I read it on the beach in Hawaii -- on that gorgeous, perfect, beach. I was looking for the answer to a question that the book really doesn't address. It was an odd choice for a summer read. It was an odd choice for that perfect, breezy, beach.

Here's what I wanted to know, which the book doesn't address: What's it like to be Elie Wiesel, and to have seen living babies thrown into a furnace, and to hear people complain about the price of gas?

I don't want to complain about the price of gas.

I'm afraid.

I'm not much of a scairdy kinda person. I can disassociate from most of it -- ignore it, or look at it, depending on my relationship to boo duh in the moment.

But I received the results of my ct scan today, and the results weren't good. Chemotherapy can still work... things can get better...

But for right now? I'm feeling pretty fucked. And I don't like it. And that's about all I can say about that.

Sigh

John McCain and John Kerry on Meet the Press this morning, debating the direction of the war in Iraq.

In a word: depressing.

I'd like to take a Craftsman tool set and tweak John Kerry -- reset, recalibrate....

Sabado

Even with the queasiness and chemically chemo haze, I can still make Eric laugh. It delights me to do so. It was a foggy slow-paced day, but there was Eric's smile.

Another day of rest tomorrow, thank goodness.

I need more.

What you ask for.

Pain was intense and primal -- it left me ragged, but it didn't isolate me from the world. At least, not once the narcotics kicked in. I was dozy and fogged, and still uncomfortable, but I loved my friends. I talked to people. Eric was with me, and I loved feeling him there and squeezing his hand.

If it hurt so bad that I screamed, I was still human... a person in pain.

I wanted to start the chemo. Amazingly, I was anxious for chemotherapy, wanted to get it going... knew that it would take the pain away.

And I started chemo, and I it took the pain away.

And then I thought: Oh. That's right. I remember.

I'm sick. Not in pain, but sick -- queasy, and icky, and isolated. More than pain, more than cancer, chemotherapy places me on the other side of the chasm. I have less to say, and and less desire to share it.

Even Eric is farther away. The saddest thing I can imagine, and through no fault of his or mine. I love him absolutely, completely, always, all ways... but not even my Eric can reach me here. It's so sad.

And now I wait for my fingers to blister (they're already peeling), and the mouth sores to appear (they are starting) and to find my eyelashes on my cheeks. So many wishes as I blow them away. One wish after another, and my wish is always the same. More... happiness for Eric and with Eric. More.

I don't know anymore... about much of anything.

Swoosh

I'm at work.

Just.... wow.

It's a crazy world, and that's all I can say!

Monday

It's an odd-not-haha-funny world when chemotherapy is the good news, but my good news today is chemotherapy. I spent nearly seven hours in the blue plastic recliner, hooked up to an IV and receiving all of the drugs in my regimen - taxol, avastin, aredia, benadryl, and decadron. I also continued to take narcotics every three hours and an anti-nausea medication to offset the ickiness that arrives two days after completing chemotherapy.

The plain films showed no immediate risk of fracture. Here's what they say:

Radiology Examination Report: L Femur, AP & Lateral; R Femur, AP & Lateral

Findings - There are sclerotic foci in the proximal femoral shafts and necks bilaterally. Sclerotic foci particularly in the left pubic ramus and ischium are also seen. There is a sclerotic focus at the base of the Rt acetabulum near the foves.

More ditally, on the left, there may be a few tiny clerotic foci which could be metastases also.

Impression - Sclerotic bony metastases, greatest in the area of the left hip.



Radiology Examination Report: Hip Bilateral

Findings - Numerous Sclerotic foci are seen in the pelvic, including both illiac spines areas, the left illium near the SI joint, the lower lumbar spine and sacrum. The left and right ischii, the proximal femurs, and the pubic rami on the left side have disproportionate sclertotic metastases also.

Impression - Numerous bony sclerotic metastases.


That's about enough thinking for me for one day -- even the typing is more taxing than I'd like. I've fallen sleep twice & have had to erase stuff like kkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkkk. So I think I'll sign off now.

More of same.

No chemo on Friday -- had plain films taken of left hip. May need pin in hip to prevent fracture... should learn more on Monday.

Nausea and pain -- had nice visits w/ sister Jane, Leah, and Taylor though.

That's all I've got for now

Hmm.

I don't know how to describe it, or if I should. Do I even have the words? I'm feeling pretty upbeat -- feeling like relief will come, in some form, and relatively soon. I'm not despairing. But sheesh!

I just wrote a paragraph describing this pain, and then deleted it. It sounded scary. I kinda scared myself. Odd.

Simple

Pain. That's all.

In brief

It's hot and the fan is blowing, but I'm still beneath the comfiest blanket ever. Time is funny -- odd funny, and ha ha funny. Pain is persistent, but tomorrow's another day.

Map

Pain makes up the southern and western boarders of my world. Eric to the north, and to the west lies a series of mindless computer games.

I'm walking with such difficulty that it's hardly worth it. I went for a scan yesterday morning and found myself trapped there. I could have called Eric, but he had a class room full of teenagers. I called my friends, but no one answered their phones.

I don't know if I have a fracture or if I'm at risk of a fracture or what.... I just know that I'll be commencing some sort of treatment soon.

How quickly the wheel of fortune turns!

I'm not upset, for the most part -- I may sound it but I'm really not -- I'm just ping ponging between agony and stupor. I've been worse places, but most places are better.