Friday at last!

I'm so glad it's Friday, and not a moment too soon.  It's a sunny breezy bright day out there, although the radio says that it'll rain all weekend.

 

I've had a punky week.   I haven't been in touch with folks, and it's nothing personal.

 

Yesterday, CN came and stood next to me... very, very, close to me... and called out "Miss Martha" until I stopped what I was doing and looked up at her, and held her gaze.  Then she said, "I don't like it when you don't feel good".  And I said that I didn't like it much either.  And then she said:

 

"But I REALLY don't like it when you don't feel good.  I don't talk about it because I don't want to rub it in."

 

Is that an odd choice of words?  I know what she meant to say, but not wanting to "rub it in"... that's just weird.  It's like:  bad enough I should have cancer, but to have Marilyn RUB IT IN on top of it!

 

Oh, well.

 

So, here I am.  I hope I have a nice, quiet, happy, pain free weekend.

 

That's my story!

Toozday

I stayed home from work today. I'm not sure why. I shoulda gone... there's plenty to do. I checked my work email a few times, which is rarely a good thing to do from home.

I'll go tomorrow. Next week there's another day of scoliosis screening, and then that infusion/fever combo that comes around once a month.

I once had a period of not working, which is quite different from having a period of unemployment. I loved it. I met my friends for mid-morning coffee, and improved my cooking skills considerably by cooking dinner for Eric most nights.

Not working was grand, and the fact that some of my bestest friends were available to hang out made it even better. Also: I was healthy. Good health may not make for guaranteed happiness, but ill-health can definately make it a challenge.

I'll go back to work tomorrow and it'll be ooooookay.

Day of Rest

Eric and I ran errands yesterday morning. We renewed our passports -- a fundamentally hopeful act, and also important if we should ever have need to flee the country. We wandered around a bookstore, and had a lovely little snack. Eric had a grilled chicken taco with tons of cilantro and salsa, and I had a spicy curry-ish samosa. Ain't California grand?

Jane joined us in the afternoon, and brought a yummy apple tart. We went to dinner, and Janis joined us for a movie (Thank You For Smoking). Then we came home and yakyakyaked until the wee hours.

Today I'm tired, and have parked myself on the couch. I'm eating cheesy poofs and surfing the channels.

That's all. Just a quiet day.

BTW, for those of you with On Demand (a cable television service that allows the viewer to watch selected programs and movies "on demand" rather than at a scheduled time), I recommend a documentary by Rosanna Arquette on Showtime. It's titled All We Are Saying, and it's her conversations with assorted rockstar buddies, on a wide range of subjects.

It's fluff, but it's entertaining fluff.

I am not always appreciative of these quiet, normal, days, but today I am.

Seasons and Stuff

It's Friday, which is a beautiful thing. I'm looking forward to this weekend. I consider it a do-over of last weekend, which was too grumpy, too sad & stilted, and left me feeling tired and unprepared for the work week.

This weekend is about loving up Eric, and enjoying leisure time.

I want to see wildflowers this spring. I want to see TONS of them... fields & fields of them... and I'm looking for wildflower-viewing recommendations.

(BTW... seasons should NOT be capitalized unless used in a title. I don't know why I had such a hard time remembering that.)

Wednesday

The metastatic cancer ladies are circling the wagons today. They're feeling isolated from what some of them call "the world of the living", or the "the world of the well". Their friends and family, their spouses and children, don't understand how unwell they feel. Their loved ones don't understand how tired they are.

I'm sure it's all true. I'm sure that some of their friends are avoiding them. I believe that some of their spouses just pretend that it's all okay. And I know that it's hard to listen to conversations about the future while carrying such uncertainty about what the future will be (or if it will be, really).

It just sucks.

We're in the middle of Daffodil Days. The American Cancer Society is selling daffodils to raise money, and cancer patients are being given gifts of daffodils. I call them cancer flowers, and I hate them.

Five years ago, when I was forging my way through chemotherapy with a stiff upper lip and the hope of a "cure", I was given a vase of daffodils while actually having the nasty nauseating koolaid colored chemoacid pumped in my veins. Cancer flowers. Blech.

Yesterday the administration at work gave me a bouquet of daffodils. I was crestfallen. At first I thought that they were just for me (the designated cancer lady), but then I noticed that all of the clerical staff had them.

I told NM about my disdain for the pretty yellow blossoms.

So... I've been sitting here, typing about the cancer ladies circling the wagons, and I looked over at the bouquet. It's the same vase, and the same white baby's breath... but the cancer flowers have been replaced with yellow chrysanthemums.

I think that some people are clueless and were always clueless and bad happenings & hard times makes the cluelessness apparent.

Other folks just don't know what to do, but want very much to help in some way.

I've been lucky. My husband rocks -- has rocked through good times and bad times, and most folks in my life have been with me through the ebb and flow of my response to this disease. They haven't always known what to say or do, and neither have I.

When we can get a few steps away from pain and exhaustion, or anger and disappointment (which is certainly not always, for me) then understanding runs both ways. For as long as I can, to the extent that I can, I want to be in "the world of the living". What that looks like down the road is still a mystery to me.

I'm just hanging out.

Waiting for summer. Waiting for work to slow down. Waiting for my next doctor's appointment, my next infusion, my next birthday. Hanging out with Eric, and waiting.

Brrrrr

This first day of spring and the 60th work day before summer vacation begins is cold, cold, cold. 

 

I came to work and did the task I was most dreading first.  What a relief that is!  Now it's on to the next item on my list...

 

It's monday, alright.

Just a Thursday

Today felt like Friday, which is good and bad, I s'pose.

There's so much to do at work. We're already planning for next year, and there's still plent to do for this year.

I've just been working, coming home... dabbling with mosaics and watching American Idol, which seems to be on four or five nights a week.

I'm feeling a bit better, although not much much better. I'd like to feel much much better soon.

We don't have plans for the weekend, which feels very wonderful and super-lux. So many hours and hours that are just ours.

I used to have such a hard time taking Eric to the airport. I'd cry and cry. Even after we were married -- I would be so sad to see him leave. I wanted him to go ... to play, or see his family, or have an adventure. I never wanted him to STAY because of me, but I would miss him so. And airports really did me in.

A whole lovely weekend with Eric. Yay!

Monday

I stepped outside this morning and it was such a bright, breezy, bee-buzzy, blue-sky-with-puffy-white-clouds day.  And then I descended the stairs like an 80 year old woman, one step at a time, wondering when the ibuprofen was going to kick in.

 

Monday morning at work, with bunches of stuff to do -- scoliosis testing tomorrow, Medi-cal adminstrative activity paperwork to process, six elementary schools and three jr. highs still to audit for immunizations, emails to write and phone calls to return -- and all I can do is take inventory of the places that hurt.

 

My left wrist, the base of my neck, the whole mid-back-range of my spine, my left humorus thobbing, my legs feeling like they're not connected correctly, and trouble brewing at the corner of sacrum and illiac.

 

What matters?  Blue skies and a nip in the air or this incessant creeping gaunch that replaces my bones with full on life-eating vascular-rich monster flesh?  Give me rainy days.  I'll follow darkness around the globe, just let me live with Eric. 

 

There's no reprieve, though.  I guess it's better to have a pretty morning than an icky one.  I guess it's better to have work to do than to have nothing to think about except what hurts.

Update w/ Bonus Links!

I didn't realize it had been so long since I've blogged. I assume that I've written about everything here, just like I assume that I've told Eric everything there is to tell. I'm always surprised when Eric doesn't know something (anything) about me. It feels like he inhabits me... what could he possibly not know?

The infusion was fine. It was icky, it was also fine. It hardly matters, as I'll keep doing it every month until I can no longer do it every month... and when that time comes, it will feel like a loss, even if it's "icky". So: it was fine. That's my story, and I'm sticking with it.

We're cruising along, making summer vacation plans. I would like someone to tell me the rule about the capitialization of seasons. I can never remember how it works 'tho I've looked it up a zillion times.

I have moments of something-like-panic. Panic's too strong a word. I have moments of panic's cousin when I feel twinges of pain here and there. I imagine that there's cancer in both femurs and throughout my spine... in my left scapula.... the proximal end of my left humerus. My left arm is heavy and weak. I believe that the cancer in my pelvis has grown, and that there's cancer throughout the fingers of both hands. I hope for artheritis. Weird, huh?

And THEN, I turn away from those thoughts. I'm just Waiting and Seeing. I'm not in any acute pain. It just comes and goes (and comes again, dammit).

We've had a nice weekend. We went to Eric's school's play, A MidSummer Night's Dream, with Tom and Corinne. It was fun... we always enjoy those plays. The kids there do so much with so few resources. I must be getting old, because sometimes I sit there and start tearing up, I'm so proud of them.

Saturday morning I got together with Janis, picked up a latte, and headed out to the Institute of Mosaic Art in Oakland's Jingletown arts district to absorb a little inspiration for my latest mosaic project. Then Saturday evening Eric, Corinne, and I went to a PAC for Change fundraiser in the city. I didn't really listen to the speeches... mostly yak yak yaked with NM from work, who was there with her husband. But the food was good, and I enjoyed several glasses of wine, and Eric looked very handsome.

Today, Sunday, I received an email from Luana, which made me very happy. Luana and Yoko have moved to Hawaii, and we miss them. It was a happy email for a Sunday morning. Now I'm drinking coffee, and soon Eric and I will go for a walk (before the rain starts). We'll probably go to the Berkeley Marina.

And now the blog's all caught up.

Plans

Tonight Eric and I are remembering last summer's trip to Washington, DC. What a wonderful, fascinating, vacation. I never expected to be so intrigued and moved by DC. Our location was perfect. We walked, and walked, and explored. The only aspect of our trip that was lacking, the food, was so laughably bad that we almost remember it fondly.

We're in the midst of planning our summer vacation now. I can't think of a single American city that would be as compelling as our trip to DC, other than New York City (which is a serious been-there-done-that even for me, never mind Eric).

Next summer, if we're able (fingers crossed and wishes cast)... next year perhaps we can explore a wonderful old European city.

This summer will be good. We're challenged to keep our plans flexible, and we're not sure that we'll be able to pull it all off, but we have some nice diversions planned.

Update from the Couch

It's not just about The Prom as an event anymore... it's about the entire Prom Shopping Season. On average, girls try on 24 dresses, and the average cost of the dresses they buy is two hundred and fifty dollars.

If a girl has her heart set on a dress that costs over three hundred dollars, she might consider balancing out that expense by choosing inexpensive shoes or doing her own hair and make up.

Tomorrow

Tomorrow afternoon I'll have my infusion and my injection -- those minimally icky procedures that Eric and I have been hoping will be effective.

I'll leave work shortly after lunch and go to the Chemotherapy Suite, where the nurses wear brightly colored uniforms and no one laughs.

I don't like the way it smells there.

I'll have a fever on Wednesday, and on Thursday I'll go to work.

I don't complain much about the weird hospital smell or the brightly colored uniforms or the nurses who speak to me in baby talk, or the hair I pull from my hairbrush not by two's and three's but by thirty's and forty's.

Actually, I'm oddly grateful for the weird hospital smell that doesn't make me nauseated, and the nurses who pat my leg, and the hair that I have left. It could be so much worse.

Oscar Night

Eric and I went to go see "Crash", the Academy Award winner for Best Picture, on May 28th of last year. I know this because I blogged about it. We liked the movie.

I've been blogging for nearly a year now. I'm thinking, maybe, that a year'll do 'er. That's one fifth of my post-diagnosis life expectancy ("hopefully four or five years," he said). I think that I've bored folks enough with my love love love and my ick ick ick.

I'm glad Crash won.

I'm scared at how fast time forges ahead.

23 plus 15 plus 22 plus 14 equals Yay!

March is the month with the greatest number of work days -- 23 of 'em, and not a single holiday or 3-day weekend.  March is the cruelest month.

 

April rocks.  April comes in at a cool 15 work days on accounta Spring Break.  I love having Spring Break.  Working a school year schedule is a trip down memory lane.  I should've started doing this years ago.  I'm not one to regret much of anything, really, but I regret not having the last 15 summers off with Eric.

 

On the other hand, if I'd worked in a school district all of those years I wouldn't have made some of my most wonderful friends.  I wouldn't have met (in order of appearance) Pennie, and Tom, and Lisa, and Corinne, and Janis, and Luana.  So... ixnay on the regrets.  I'm glad to have this schedule now, though.

 

Twenty-three work days in March, fifteen in April, and May weighs in with a bulky twenty-two work days, the second highest month but with summer so close that it hardly matters.

 

And then comes June -- lovely, lovely, June -- 14 more days o' work, and then summer... another summer with the cute boy I met in the park 18 years ago.  Days and days and days of waking up and knowing that all of the hours are OUR hours.  I breathe Eric in and I breathe Eric out.  Lucky, lucky, lucky, lucky, me.