Boobs On Ice™

I'm Awake And You're Here

Sometimes it feels like it would be easier to drift off in my sleep, unaware that a surgeon nicked something vital accidentally. Peaceful. Unless I'm feeling adventurous, that has more appeal than making a long drive down a dead-end road where in the end what takes me out is some bad-boy cell generated by my own body.

I'm not describing self pity. There are however flat grey cloud kind of days when I wake up not feeling any different than yesterday; when I'm still disinterested in things that would normally get my juices going; still unable to resist napping; not caring what's for dinner; passing on fudge. (what could that be about!)

Then I open my laptop and see the names of well wishers scrolling down the left side of my screen in twitter.

It's no longer the age of greeting cards through the mail - though there have been some. And it's even a few years post the heyday of email jokes and music for the most part (thank you God).

For me it's mostly a time of short quick notes that make me laugh, or smile, or encouraged to just get on with whatever. Twitter is immediate feedback. An IV instead of slow release capsules.

Emails, seesmic videos, utterz are kind and warm and supportive in their own way but your tweets are a quick jolt that do the trick.

I vote that you keep them coming. For my part, I'll be appreciative forever.

A Blogger Takes on Chemo Room Etiquette

I don't know what the story on chemo is in my case. At least I'm not scheduled for it right now.

But eventually - I mean this is cancer - so there's the word chemo that hangs out there in the air like some kind of boogeyman. It's going to appear in my life at some point. Whether that's in 6 weeks or in 6 years I expect it to show up.

I say "it" as if chemo is an entity. Like Hell or UFOs or Bigfoot - but scarier. Somehow it's taken on a personality of dread and uncertainty. For me the fear of chemo is nearly as great as the fear of cancer.

Not surprisingly I'm doing a lot of reading when I feel up to it - and I came across a cancer patient''s rule for behavior of the folks that accompany cancer patients when they show up to do their chemo visit. It was enough to give me a glimpse into the superficial part of the visits. I don't think I'm ready to know more. All in good time.

It made me smile too. So that's a good thing. You've got to be a little feisty to deal with cancer. I think the author, Kate, is certainly that.

Chemo Room Etiquette

Post on October 26th, 2007 by Kate

This is short list of general rules and guidelines that should be followed when you accompany a chemo patient to the chemo room. They are based on my observations over the past few months and I will add to them as need be.

1. If you aren’t a chemo patient, you don’t get a cushy chair. I don’t care if you have to pop a squat on the floor, we should never have to stand there waiting for a chair because your healthy butt is occupying one.

2. Eat your Big Mac before you step foot into the chemo room, even if that means cramming it down while standing in the elevator. Most chemo patients walk the line between nausea and hunger - the smell of french fries will usually send us running for the bathroom.

3. Don’t ask where a patient has been lately. Everyone has their own treatment routine and, often times that requires a few weeks of rest in between treatment. Don’t ask the nurses about a certain patient - they aren’t allowed to answer this question.

4. Speaking of nurses, they’re here to help me, not you. I know the water fountain is all the way on the other side of the room, but get up from the floor and get your water. Get me some while you’re up!

5. Never look cuter than the patients. That means no True Religion jeans, UGG boots, or Juicy shirts. The chemo room is not your runway and if you see us staring at you, it’s because we want your french fries.

6. Finally, the chemo room is all about us. Whatever we want, we get. So hand over the UGGs and no one gets hurt.

Read more at Kate's blog: I am strong. I am fighting. I am surviving. |.

It's Not Just About My Cancer

It's not just about my cancer. It's about other people's cancer. Leroy Sievers has cancer too and says

"After that day, your life is never the same. "That day" is the day the doctor tells you, "You have cancer." Every one of us knows someone who's had to face that news. It's scary, it's sad. But it's still life, and it's a life worth living.

Leroy Sievers has been a journalist for more than 25 years both at CBS News and at ABC News where he was the executive producer at Nightline. "My Cancer" is a daily account of his life and fight with cancer.

Sometimes I can't think about cancer any more but sometimes I want to understand every experience in some kind of odd fascination with understanding the process. It's at those moments  when I read Leroy's story through the My Cancer blog, or listen to his weekly podcast.

I honestly don't know if I'd be half the optimist Leory is if I walked in his shoes. But he gives me a role model.

We Can Talk About Cancer

There's nothing good about getting cancer. It helps start conversations though. And after you've said "I've got cancer" saying pretty much anything else is a lot easier.

I 'met' Duncan Riley of TechCrunch in a virtual sense a couple years ago - I think it was through LinkedIn bloggers though I can't swear to that. I've always thought he was down to earth & easy to interact with.

He wrote about the frozen pea fund and observed that Twitter has created new relationships and taken social networking to new levels. And he's right. It's because of twitter that Duncan knows I'm a night owl because I'm up at odd hours for a US East-coaster & we've tweeted about children and all sort of odd things in the wee hours of my day. It has let us communicate on a new level. I wasn't  so surprised that he was writing about my breast cancer, but appreciated the shot in the arm he gave the pea-fund my friends had so generously started.

Almost diametrically opposite from Duncan in how we met is Cliff Ravenscraft, the Podcast Answer Man He's a direct from twitter friend of a friend and a very new twitter friend.  So I was astounded when he did a podcast about New Media Peas and Boobs on Ice. And I don't even think it was so he could use the word *boobs* in his show title.

Casual acquaintances started tweeting and blogging about cancer. Loic Lemeur added Peas to his avatar. Frozen peas became a topic of the day for Mark Harrison and countless others who stepped up to promote breast cancer awareness.

Then come people I have no connection with at all.

Blogger and Podcaster magazine picked up the story Friday and twitter covered the change to pea avatars as well. I don't know the people there, or don't know that I know them if I do. So it's doubly nice that they'd chose to write about this. 

Katherine Druckman webmistress at LinuxJournal.com pointed to frozen pea Friday as illustrating the "age of information" at its best. IJustine blogged about frozen peas too.

But it's not all about peas. A lot of people are sending direct messages and commenting on my blog. Those kind of personal messages are surely special. I'm sure that there are others that I'm just too overwhelmed to see. People are sharing their feelings and fears and hopes with me, and I'm so appreciative for this kind of interaction. It's honestly what I believe will bring me through the long stretches of hard times.

Meanwhile back to what we're saying about peas and cancer. Dave Winer included an image of a package of peas in Scripting News, with a link to my blog, but apparently couldn't figure what to say about the whole thing.

I can see how that would happen even before I started with the boobs on ice thing.

Hobson and Holtz Talk Peas

Link: For Immediate Release: The Hobson and Holtz Report. Yes they did drop social media names and talk about the idea and the implementation of the Frozen Pea Fund. Very interesting.

Content summary: discussion: frozen peas and the power of grassroots support for a cause - December 24, 2007

The Hobson & Holtz Report, a 69-minute podcast recorded live from Concord, California, USA, and Wokingham, Berkshire, England.

Download the file here (MP3, 31.7MB), or sign up for the RSS feed to get it and future shows automatically.

To Know: Social Realities of Loss and Suffering Following Mastectomy

I came across this information that I thought was very interesting.

"A woman who has had a breast removed will concern herself, usually in isolation, with her secret unpredictable interior. This fear will be her very own preoccupation, not only because in our society death and disease are deemed threatening and ugly – but also because the uncertainty of the health-status of a woman following mastectomy is socially (as well as medically) veiled by discourse which assumes that she is ‘well’

Looking forward to reading more I clicked on the link Social Realities of Loss and Suffering Following Mastectomy -- Crouch and McKenzie 4 (2): 196  and found out that
I'd need a membership in any one of dozens of organizations in order to have access to the article.

Granted, the same information is probably included in other sources, but it's frustrating not to be able to get to it after being presented with a teaser which contains what I thought was relevant information.

And $15 for 24 hours of access seems a little unreasonable.

Perhaps the question is who knows someone who knows someone who I can get access through. And is this time to call on my social networks, to see how they work when needed. When one gets cancer shouldn't you also get a free pass into all the cancer support information that exists on the planet?

Maybe the Amercan Society of Clinical Oncology is the group to see about that.  If they're on the list they're a candidate to share the wealth.

Cross-Generational Cancer Chat

About 3:30 this afternoon I came upstairs after opening gifts with the family. Then did some resting after  percocet and a shower. I've got no energy left for sitting downstairs and being entertained this afternoon as much as I want to be part of Christmas.

But my 9 year old granddaughter visited me in the bedroom a little while ago and she's so funny. She says this stuff that her mom would be mortified to hear about but it's so genuine. She gets my vote for family member most surprising - and most fun to talk with about hard stuff.

Among stuff I now know:

She volunteered that she "really cried" after I was taken to the operating room on Friday. She said she thought I'd be scared to be alone after they wheeled me out. The kid's right more often than she's wrong.

On the other hand, she thinks them cutting the cancer out was a good idea because "cancer is a bad thing and you just don't want to have it in your body" even if that means I have a flat place where the boobie used to be.

I told her there should be more lab tests back on Wednesday & asked if she knew what chemo was. All she needed to hear was that one word and she skipped all the fluff and went directly to the most important part: I shouldn't wear a blue spikey wig if I have to have chemo. Because "You're this old lady and having blue spikey hair would be just weird."

Again on Ice

Friday was surgery day - so not surprising that it was a big blur.  First I got irradiated so the surgeon could see lymph nodes.

This was memorable because of how the material designed to make me glow with divine light was delivered via four shots around my right nipple at the noon, 3 o'clock, 6 o'clock and 9 o'clock positions. What can you do but shake your head and wonder why there isn't a more humane way.

But that happened at noon and yes it burned like hell but didn't kill me and by two I was in surgery where they were playing music that I didn't exactly recognize, but I didn't object to either. And then I was out.

Soon - it seemed from my perspective - there was no music but I was drinking ginger ale in recovery and back in a room on a post surgery floor by early evening. My breast was gone but my husband said my sentinel nodes were clear - which I though meant no chemotherapy  was needed.

I breathed a sigh of relief and dozed on and off - then ate half a turkey sandwich at ten or so.

Overnight it was hard to get the pain under control but it wasn't unbearable and I did get a couple of hours of sleep. Daughter 3 on one side and spouse on the other.

Around noon Saturday the reconstructive surgeon came into the room to check out his work and go over my progress sheet. At that point he grinned and gave me my Get out of Jail card. I could leave the hospital less than 24 hours after I checked in. So I did.

But as it turns out, there was a lot of action in that 24 hours and I don't know where Saturday and Sunday went. Flowers arrived, and cookies, and cute photos of kids I've become adoptive nana to, and beautiful baubles . . that I'm so appreciative for.

I've got bits and pieces of memories that don't quite fit together like a patchwork quilt but they form a big enclosing hug in my mind. 

I'm a bit of patchwork myself, as I've still got tubes draining out of my chest wall & negative pressure suction bulbs hanging from the tubes. A little like clear pink Jellyfish sucking at tentacles. Wish you were here.

It was an exciting idea to be allowed to take a shower whenever I wanted to  - and it surprised me when the surgeon said I could. But Sunday morning when I attempted it. I'm not sure any description can do justice  to the episode except to say that that in spite of all the wonderful support I've gotten I felt utterly alone.

There in the bathroom with my poor husband who's about as far from a nurse as humanly possible but who has been doing a boatload of nurturing, I had a significant breakdown complete with sobbing and inability to even begin to  put my camisole top over the gauze or otherwise deal with my chest. I was a wreck. I knew it. I apologized repeatedly. This is not the brave front wanted anyone to see - including myself.

By the end of the day both daughters #2 and #3 had helped with wound care and drainage and positioning ice packs and gauze. My son didn't wince or turn away. Apparently I have no functional modesty after this kind of surgery and these special people I love are somehow able to take it.

The day of falling apart turned into the evening from itchy hell and benadryl capsules and spray were added to the basket of supplies I keep nearby  The antibiotic was suspected of being the itchy culprit so today, Monday, Keflex got the boot and the pharmacy got paid yet another visit.

The more things change the more they stay the same. I'm on ice. Again. This seems to be a cyclical story. In bed, ice on chest, propped up as per surgeon's instructions, and trying to nap on and off. Too early to really put the story together cohesively.

Surgery Day - Before the Fact

I've set this up to autopost (God BlessTypepad) at 9AM so you'll know the The Plan for Friday December 21 in the VA suburbs of DC:

• pull myself together
• grab clothes and "the specified bra (what a pain and I'll detail more later) for an overnight bag
• while trying to pop into twitter one last time
• peek at the frozenpeafund.com 
• eventually check into Sibley Memorial by 10AM.  - ish -
• Get prodded and poked and given a dose of glow in the dark juice so the docs can find lymph nodes
• Get radioactively "mapped"
• Go into surgery with Dr Flax at 2;30 to have tumor and breast removed and nodes dissected and sent to lab

1. If all is clear we're on to part 2
2. If positive nodes, out come the axial nodes as well & chemotherapy is in my future

• Dr Flax hands baton to Dr Chang who begins the first episode in the new and improved reconstruction
• I wake up and get the good news, happy family cheers, someone gives me food!
• Husband Bill lets @conniereece or @pistachio or _somebody_ know something when he gets a minute. Meanwhile daughter @badwolf may or may not tweet blow by blow. it might be too much, so don't be surprised if she doesn't.
• I go back to sleep and try to make it last all night, only to become aware of what's going on sometime Saturday.
• Pass the drugs.

Let's see if we can make this thing happen!

2AM Is Getting To Be a Theme - But Oh What a Day

It's 2:30AM and I'm about to go to sleep. I can pack my bag in the AM, leaving one more way for me to be in denial. The cat threw up on the bed just now so I know things are normal in at least one way.

It generally takes a long time for my posts to come together. I'm not a blog and run type woman apparently. In fact, the last time I ran may have been in 1995.

Admittedly my 6'3"son was here today and after doing a great job of being in charge of logistics all day while daughter 3 played my emotional-sidekick, Sgt. Reynolds was now distracting me by playing his entertaining role, asking unanswerable questions like a perpetual five year old.

He knows how to make me sputter and smile at the same time.

"How do people explain alligators if there were none on the ark with Noah?"

By the time I even began to address that, he was onto "Shouldn't there be a home test to see if you have diabetes - like a home pregnancy kit?"

(This went on. And on. He thinks in strange and mysterious and prolific ways. Or maybe the apple doesn't fall far from the tree.)

Meanwhile I've gone back and forth thinking about another topic all through the evening.

After my hospital visit yesterday in preparation for the big day today - - after meeting with Jim Long (twitter's @NewMediaJim ) and talking about what Social Media means to me - -  after seeing the pea fund suddenly appear as a working breathing thing a minute ago - - what could I even begin to say here?

It's a harder question to answer than the one about the alligators.

How do I tell you about the week I've had and how stunned I am at the response to my sharing my cancer story?

• It's impossible to list the wonderful people who have put PEAvatars on their twitter pages or made seesmic videos.

• I don't have any idea who all the people are who have uttered or blogged about breast cancer, Boobs on Ice, the grassroots Frozen Pea fund.

• It's impossible to count the people who have done something small and meaningful for me or made big grand wonderful gestures.

• How can we show our gratitude to you who have been supportive or helped someone behind the scenes?

• What should I say that could possibly convey how heartening it has been to feel all of you with me?

I just can't. But at the same time I know that you know that I feel all of you out there pulling for me, making me smile.

I love each of you. Prepare to be hugged repeatedly when I see you.