Going Once, Going Twice

I plan to delete the "Light the Night" widgets in the left column on Monday. If you click on the top icon you'll see we've raised a total of $1,835 ($335 over the goal). Do I hear $2,000?

This is my last plea and your last chance to donate to an organization that's funding blood cancer research and supporting and educating patients and families.

Then you can breathe a sigh of relief and mutter, "I thought she'd never leave."

Bits and Pieces

Today I chatted with Dr. Forman about my improved cough and life as a social pariah. He shared an old saying, "Better to have a bad headache than a mild cough" - meaning that it's easier to suffer in silence with a headache than to make others around you suffer with a cough. It's true, although I've known people who make everyone around them miserable when they have a headache.

I'm seeing improvement in other areas too. Even though we had thought that the left lung showed some clearing on my last visit two weeks ago, the radiologist had reported "no change." But this week, the x-ray definitely looks better. (I'm not just makin' that up.) And my weight is up to 120 pounds. I think that I have Trader Joe's and their new line of rise-overnight, bake-in-the-morning pastries (pecan sticky buns, croissants, chocolate croissants) to thank for the extra meat on my bones.

I'm gradually tapering off the Prednisone steroid from 60 mg to 40 mg to my new dosage of 30 mg/day for the next three weeks. As I've mentioned before, we're watching and waiting to see if those wacky eosinophils (EOS) creep up again after I'm off the steroids.

Since most of you know my brother Piper Robert through his comments on the blog, and I've mentioned several times that his wedding and reception were at our house, I wanted to share the photos. I have spent hours poring over these and reliving the wonderful wedding weekend.

http://www.skye.exposuremanager.com/g/
Click on photo "b&r."
Enter password "susan."

I fell in love with the black and white jacket I'm wearing, but now I think it makes me look like a Pasadena matron. That's not the look I'm going for. And I can see that I really need to get back to my workout regimen, including Pilates, to pull back my slouching shoulders.

But the point of the photos is not for you to critique my chemo curls or fashion choices or poor posture. Look at them to see pure love and joy on the faces of Robert and Bonnie on every single frame.

The Long Goodbye

After one week, no fewer than 12 phone calls, escalation to managers, 12.5 hours on hold and four broken promises to "call right back," my AT&T DSL service was finally restored last Thursday. (If my doctors and I had been this inept at diagnosing and treating my mantle cell lymphoma, I'd be pushing up daisies now.)

AT&T promised me Thursday morning that the DSL would be working by 8 pm. Like magic, it was up and running at 7:45. Of course, the "magic" involved 2.5 hours of my time on the phone with three different reps. My mantra, repeated at least 23 times, was, "My service was disconnected in error. I will stay on this line until it is fixed."

But do you want to hear the most painful part of this entire process? Saying goodbye to the reps. After I've been on hold with someone for an hour or two, I don't need a long, drawn-out goodbye. I just wanna' hang up. But, in the name of good customer service, AT&T has to keep me on the line for an additional five minutes.

AT&T: I will transfer you now to a customer specialist who will be able to help you.

Me: Thank you so much for your help. I really appreciate it.

AT&T: Thank you for choosing AT&T. We appreciate your business. Is there anything else I can do for you?

Me: No thank you.

AT&T: Do you have any questions?

Me: Just one. When are you going to transfer me?

AT&T: It's been a pleasure doing business with you.

Me: Yea, yea, yea

AT&T: You may receive a phone call asking you to rate your service experience. I hope that I have done everything possible to serve you.

Me: (Under breath - I do not have anything good to say about you or anyone at AT&T because you disconnected my service in error and can't get it reconnected and now could you PLEASE let me go.) Yes, thank you.

AT&T: Thank you for being a valued AT&T customer. Have a great day!

You say goodbye, I say hell(o).

Some Great News

My days as a hacking social pariah may be over. For some unknown reason (alternate therapy?), my coughing significantly subsided today. I can't believe how much more energy I have when I'm not consumed with coughing up a lung.

With a controllable cough and respectable energy levels, I actually enjoyed my day of non-stop activities. I had a long lunch with friends in Old Pasadena, volunteered at the A3M (Asians for Miracle Marrow Matches) office in Little Tokyo, ran errands, picked up a dresser I purchased from Craigslist, ran more errands and right now I'm capping the day off at the Coffee Gallery in Altadena for hot chocolate and free WiFi.

I even had time for a hearty breakfast of eggs Florentine at home. You can read about how I like to take one dish - ground beef with spinach and mushrooms - and stretch it into three meals at Open Mouth, Insert Fork.

Cough 'til you drop.

I marvel every day at my improved health. I don't take for granted that I can march from the second floor to the basement to throw a load of clothes in the washer, stop to feed the dog and cats on the first floor and still trek back to the second-floor bedroom without gasping for air. Just a month ago, I needed someone to serve me breakfast in bed.

But my cough - my deep, raspy hack - has not improved. It kicks into gear whether I'm lying still or walking or talking and leaves me feeling like a limp dishrag.

Worst of all, it's turned me into a social pariah. Most people, both friends and strangers, are kind and concerned, but I know I'm annoying. "Would a throat lozenge help?" strangers ask. "I wish it would," I reply, "but it doesn't, and I darned near choked on one." I do accept cups of water and snippets of advice. "I had pneumonia too, and I found that drinking the hottest liquid I could tolerate really helped." I'm willing to try anything.

I've discovered that a small percentage of the population can be downright mean. I left an 8-stop East LA Mexican food sampling event after the second venue because I was clearly agitating at least two other people in the group. And, of course, that made me so uncomfortable that I couldn't get out of the birrierias (goat restaurant) fast enough. Today I mouthed "I'm so sorry" to another library patron after a coughing jag, but she was as bitchy as a tough old goat.

I'm trying to balance consideration of others with my own needs to get out, but it's tricky, especially since I'm still without DSL service at home.

A Day Off

It seems I spent a big chunk of my summer in very un-summery activities (like trying to figure out how to get out of bed and to the bathroom without collapsing, for one). Inspired by Ronni and triple-digit temperatures, I decided to make up a little of the lost summer by heading up California's Pacific Coast Highway on a weekday afternoon.

Self portrait of foot (a footrait)

Bare feet in seaweed, algae, salt water and sand - I highly recommend it.

Coming to you from the beautiful Altadena Library

I'm sitting on an Eero Saarinen chair, but I'm disappointed that the iconic Sarineen white mushroom tables at my local library have been replaced with standard issue wooden versions with four boring legs.

Light is streaming in above me from a giant sky light and around me through floor to ceiling windows on one side and clerestory windows on three sides. I'm soaking in filtered sunlight and greenery while I type in this mid-century oasis.

And, thanks to an AT&T snafu, it looks like I'll be spending a lot of time here using the free WiFI service and writing, writing, writing. AT&T prematurely canceled my DSL service when I signed up for high-speed service connected with their new U-verse offering. (It's like cable using a fiber optic network.) I won't go into all of the details of this crazy, maddening affair, but the bottom line is that it may take "three to five business days" to get my DSL service back because "the floodgates have already opened." (Insert primal scream here.) Floodgates have opened?!? I think the AT&T reps have been listening to too much coverage of the economy.

I may call the California Public Utilities Commission, I may have AT&T give me free dial-up until the DSL is up and running again, I may do all of the above and, then again, I may do none of the above.

I love this library.

10-04 UPDATE: Today the library is hosting a reception and exhibiting three architectural renderings to potentially update this facility. I haven't yet studied the plans, but I wonder if they'll be able to "modernize" (and come into code compliance), still keep intact the things I love about this place and maintain the integrity of original architect Boyd Georgi (not to be confused with Boy George). I'm told that's the goal.

I found out that the Saarinen mushroom tables have been sold by the Friends of the Library because they weren't wheelchair friendly. I was hoping that they were being rehabbed and would eventually return. But they are keeping the Saarinen chairs. Hurrah! I won't have to chain myself to any furniture or wage a Sarrinen sit-in.

In other news, AT&T still sucks.