Boobs On Ice™

Sticks and Stones; the Quality of Life

When I woke up most days last week everything hurt. It got worse as the week went on and I rolled up more and more into myself, interacting less and feeling worse.

I'm an analyzer by nature. A looker, an observer.

So it was natural to ask myself a question. Given that waking up hurting is absolutely normal for me, what was it about this week that threw me so hard?

Glancing at a run-down of the week, Valentines day was coming up with its guarantee of chocolate and flowers. And I had on the schedule a visit with some really nice guys that I was looking forward to talking with, Jonny Goldstein and Scott Stead.  

What was hurting was something I couldn't point to on an anatomy chart. 

It goes back a few weeks to when someone I've known for more than a few years, before twitter, said to me:

Bet you're already tired of the phrase, "quality of life."

Um . . Actually I  wasn't tired of that phrase.

Because no one had said the words to me.  Or if they did I had not heard them; willingly or unwillingly I can't be sure of my ears' filtering ability.

It's possible that I could have put it out of my mind and had no memory of it. But I really don't believe that anyone had opined on how I was affected by the phrase quality of life.

And though these are only words, until your own life is an issue the words have little meaning.

So what did it mean?

I can't speculate beyond that it was careless and didn't mean much. But that said, it's just reality that some people must wonder why some of us chose to hang around with all this crap going on with our bodies.

Today I can put it in perspective. On February first apparently it struck a nerve.

Only words.

People say sometimes they don't know what words to use to talk to those with any illness, cancer or whatever it is. I understand that, truly I do. And we all want to be talked to.

But yes, there are some things that are better offered directly, in a note of support, surrounded with words of reassurance. For some things, the 140 characters twitter offers just won't do.

And it's true. No matter how we're taking it, or seem to be, there are emotions - sometimes even hormones connected with the cancer or the treatment - involved.  So a quip opining that anyone with a terminal illness is probably sick of hearing about their quality of life might not be the best idea.

Because how will you feel if they respond: "You are the first person who as talked about my Quality of Life."

Only words

Honestly, as sad as this is to think, it could happen that someone may decide that their quality of life is pretty lousy; that life was not worth living. Someone who is not lucky. Someone without my twitter community, my insurance, without my husband, my children, my granddaughters might not care if they didn't get up tomorrow, or next week, or next month - and take steps to hasten their departure.

Hair Today What Tomorrow?

I was coming down off the high of the birthday and woke up, hot, Sure enough this was the third day in a row I woke up with a fever for no reason that I could figure out, and just feeling yucky.

It was the beginning of the last week before chemo which I am dreading. Three or four months of hell depending on whether or not the white blood count dips and stays low and delays the next round of  infusions, aka planned poisonings.

Jeesh that sounds positive and it's exactly how I felt. Yup - really great all around. Something had to give. Apparently the something was my hair, I mean it's just a matter of time - I'm going to lose it anyhow.

 

And at the end of the day am I happy? Sure; it's fun. I started as a blonde I might as well be one for another four weeks or however long I have hair.

If I get sick of it a couple weeks in we'll do a pink rinse - I'm afraid if I did blue it would look greenish purple because this blonde turned out to have a strong red undertone.

Purple?  meh - it'd look like muddy wine with my luck.

Green? Seaweed . . . unless it was LIME green which could be fun! Connie Reece, fairy godmother of the Frozen Pea Fund wold be happy to see me go green.

Always the artist trying to figure out the angles of the color wheel.
Face it - this was a diversion.

Picnics aren't scheduled to start anytime soon.

 

My ooVoo Birth Day: From Pea Fun to Pea Fund

On Sunday February 10 I had the best birthday ever, using a cool new internet technology and talking face to face in groups of six with people I'd not ever imagined I'd meet in person. And the way ooVoo is set up I really did feel as if I was meeting them.

The MyOoVooDay events in which I tool part just happened to coincide with my birthday. What timing, I thought when Scott Monty, a contact from my twitter list, approached about hosting a couple of hours of interactive chat with members of my community - meaning people online who follow what I wrote about or are interested in my work or cancer struggle or whatever.

I 'd never heard of the event sponsor, Oovoo, but one of the first events I got involved in when I was learning about the interactive world Second Life was the Coke Virtual Thirst campaign and it too was arranged by Crayon, a new media marketing company. Oh and Scott works for Crayon.

The more I learned about the community centric focus of the Crayon ooVoo concept the more impressed I became with their approach to introducing this product/service. But I hadn't heard anything yet.

They had also decided to kick off this new technology by donating to charity in the name of the host who would interact and essentially try out the beta service with five other people at a time over the course of an afternoon.

That was way cool already. But on top of that - because of the community-based grassroots nature of the the Frozen Pea Fund and that our focus has from day one on stressing personal connections, OoVoo chose us to be the preferred recipient of their generosity.

This was right up my alley. Webcams I didn't know - people I did. And I knew that they would want to interact face to face if given an opportunity to chat in more than the 140 characters they normally get in twitter. It surpassed my wildest dreams as far as fun and learning the system with some very very nice people.

Testing a first day beta service with groups of 6 people who had never used the system before was gutsy - or insane - but side from a few glitches - especially for macs it was a fun experience, got people using the service, got us familiar with it to the point that we even used it for a family chat that night, during which they sang happy birthday to me.

So though there are a few glitches oovoo has to iron out, the concept of their service isn't one of them. I had an oovoolicious birthday and their donation to the frozen pea fund on the part of their hosts is our first corporate donation. They put their money where their mouth is and in this case they have very good taste, believing in Peas.

And to think that the pea fun started when I put a little baggie of peas in my camisole to soothe after multiple biopsies. In less than two months look how many conversations it's started. What a nice thing to be reminded of on my birthday.
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The Unexpected

Leroy Sievers, producer, reporter, podcaster, lecturer, Emmy winner, all around information guy tried to get up yesterday morning and wasn't strong enough to do it. But when he wrote about the situation it wasn't the increasing pain from cancer that was his focus. It was the unexpected weakness. Leroy says 

"Weakness can be a little scary. Especially when you're not used to it, or you don't expect it."

Today Leroy's in the hospital having tests. Tests aren't unexpected with cancer but this round of tests, stemming from the unremitting pain and sudden weakness, are a surprise too.

The unexpected may be the scariest part of life in general and of Cancer in particular.

I have had some surprises too. And I totally did not expect to see the numbers I saw on Monday, saying I had about the same chance of having cancer recur sometime in the next ten years (red area on top line of the graph shown here) as I had of being totally cancer free in ten years (green area on the top line of the chart).

If I'd have had any clue in advance that what I'd be seeing would be grim I would not have been a basket case Monday night or a washed out noodle napping in bed on and off yesterday and today.

OK, I recognize that we cant predict the future and we can't prepare for every possibility. But my view is that we can communicate what various situations we find ourselves in are like and that can serve the greater good.

It's the least we can do for someone who might be in that place in the future. If you know something about cancer or the processes surrounding it because one of us shared that information, something similar might not throw you for a loop if it happens to you or someone close to you.

Giving you a peek into my reactions to what's going on here is one of the things I can do that could perhaps help someone else not encounter such a case of *the Unexpecteds*. It may not always be pretty ; but it's honest.

And I'll keep sending Leroy my prayers and positive wishes too. And will continue to follow the story of his journey

Link to Leroy's Blog: My Cancer

Expanding My Chest & Rebuilding My Decorum

Talk about short; it was a short night after a very long hard day yesterday. I wasn't shining in this video I made to bring you up to date after yesterday's emotional wringer and last night's sob-athon.

I don't shine before noon in any case, but today I needed to at least be functional before eight to see my reconstructive surgeon Dr Chang at GW University Hospital. I'm won't lie and tell you that the injections he does to expand the reconstruction area in my chest wall aren't painful at all but overall they are mild by comparison.

Let's face it I look haggard so he asked how I was.

Being straightforward about my meeting with the oncologist was difficult. Somehow I was though, letting him know that those numbers that looked pretty much like a 50/50 shot that cancer would recur sometime in the next ten years if I wasn't in the nineteen percent in my age/health bracket that died of something else before that were pretty upsetting.

He nodded and said it was understandable - didn't pooh pooh the numbers. I respect that about him. He's not a touchy feely guy but he wasn't dismissing my concern.

He's a genuinely good guy.

If he wasn't so good at what he does I'd complain that Dr Chang is way too cheerful at 9AM. One of his other plusses it that he's so totally un-geek. Today he talked about being so behind the time that he can't send a text message. This is amazing to me because he can't be a day over 35 or so.

He knows that there are things such as blogs because he told today's assistant who hadn't met me that I was "famous" for blogging about breast cancer and frozen peas "that her husband came up with for her" nodding in my husband's direction.

Men. Ya gotta love em. Even the non-texters. It was nice being in the same room with two that clearly care about me.

Is Chemo My Safety Net? The Statistics of Recurrence

So here's what I saw today that really surprised me.

Had my first meeting with the oncologist - who has been here a year and was on the faculty at Penn for a couple of years before that. Nice woman with all the up to date data and warm but professional manner.

I expected chemotherapy to be an option. But I expected it to be like - well an option option - like something I didn't really need to have.

I was thinking of it like an insurance policy. A "just in case" a couple of those cells went on a little journey while they were hanging around waiting to have the primary tumor discovered.

Now after the probability studies and odds that seem to be on the table I'm thinking of chemo more like a safety net that I'll use while being forced to do high wire stunts.

Here's Why

When Doctor Kaltman plugged all the data from the pathologists into her uber technical computer analysis model the chart in front of me sprang to life and looked nothing like the seven percent recurrence rate my surgeon had thrown around.

The risks of recurrence with my particular kind of cancer - well - she didn't have great news.

I'm surprised.

I'm very very VERY surprised. I'll admit I've read a bit both before and after my mastectomy but I never went back to the start and rethought whether the surgeon was selling me some hooey the day we first met or just off his game that day.

I'm not saying I'm buying the casket. I'm just really really surprised at this.

So today I had a very calm very rational look at the numbers. Unfortunately I can analyze with the best of them. Without doing anything I've got a lousy forty two percent chance of being alive and cancer free ten years from tomorrow .

My grandparents all were born in the 1800s before the advent of modern medicine and lived in a small towns of Madison and Ashtabula Ohio to at least their mid eighties. One until she was over ninety five. I had expected to do the same.

It's just wrong. If I have chemo now followed by five years of hormone therapy I have about a sixty five percent chance of being cancer free in ten years. I'll be sixty nine then. Still behind the grandpops.

That's not the 90+ percent cancer-free number I'd been led to believe.

So I took a tour of their chemo facility, saw the comfy treatment lounge chairs that I cant really describe because I wasn't really looking and decided to increase my odds of staying cancer-free. I chose chemo on the spot. No doubts; no hesitation.

Not so predictably I had a verifiable sobbathon later.

More numbers - the sobbing started about five hours after I handled the news so well. It lasted four hours. That was three hours ago. One kleenex box has been replaced. I've taken one xanex and two ultram for headache, breast, pain, and general "I can't believe this" pain.

I'm not chatting it up and interacting much at this point but I'm semi-coherent again.

I see the reconstruction guy again in the morning. Another day; more boob prodding and poking. I don't promise not to cry this time.

Uncertainty Stinks: Quote

"When you're in the midst of the diagnosis and staging process, and the tumor information is coming back in bits and pieces, at many different times, it is an extremely stressful time in your life.

Uncertainty really stinks! But you will feel SO much better once you know what you're dealing with, when your treatment plan has been worked out, and you start your treatment. Only then does much of that dreadful uncertainty lift, and you finally feel that you are doing something to get rid of the problem."

—Marisa Weiss MD