Boobs On Ice™

From Tiny Bits Come Connection and Community

Tuesday when it became obvious that this was not going to be the week I'd start chemotherapy I was relieved. I didn't have the throwing up to wonder how I'd get through. But I had yet another week - maybe more - of uncertainty.

Considering the kinds of stuff that's been happening surrounding testing, it's not all that surprising that the stars were not aligning for chemo.

And honestly - I don't want them to if I'm telling the truth. I keep thinking that something will happen that will change my equation in a way that means I get to keep my dignity, my hair, and my lunch.

Next week more tests, more doctors. more stress, more overwhelm.

In the meantime, I look for the silver lining in my situation. I'm blessed and don't have to look far for good in the bad.  I run right smack into the Pea Fund.

This tiny idea of asking people to take time out of their Fridays to donate the cost of two packs of frozen peas to help fund cancer research began as a tiny spark during conversations between a handful of internet friends who wanted to reach out and do something in my name after my breast cancer diagnosis. 

And today - two months after my surgery date and the first Frozen Pea Friday, there's no denying that the Frozen Pea Fund is growing into something more than anyone ever anticipated.

It's a story of bit by bit.

And it happened because of some remarkable people who see what one to one connections and commitment to conversation and community have achieved in a very few weeks AND who see the potential in helping us achieve more.

Earlier this month the developers of ooVoo and their advisers at Crayon took what I thought was a remarkable step.

Without being asked to help, they recognized the power and potential of the connecting and community building that the Frozen Pea Fund by providing our first corporate sponsorship. It came as both an overwhelming honor and a great surprise.

Since then their personal interest in my well being and willingness to work with my limitations have demonstrated that there is kindness in the world that surpasses my experience.

So the frozen pea fund has gone from a handfull of internet friends gathering around to add avatars to cheer me up to an entity that is finding support from more people and more groups every day. It's appropriate to be in awe of people who have the foresight to know that this is the kind of support for patients that can also turn into something powerful in the research world. Count me in that column.

Testing: A Fish Story

Another day, another test. This one was an MRI of my head, with and without contrast materials. I was having a little anticipatory anxiety - MRIs are like being inside a jet engine as far as noise level. It's just intimidating. But I sucked it up and went. It's all part of staging where we might be with where else the cancer might have run off to. It might explain my headaches.

My daughter drove me, We showed up at 11AM after going over the river and through the woods, literally.

In fact, I got all the way to the little dressing room where you leave your bag locked in a locker. . . . . and then the tech looked at the form I'd filled out, checking YES in the tissue expanders column.

Them: Nope - no MRIs for you. Me: but why would a doctor order it if she knows I have tissue expanders and one breast is being rebuilt?  Let's phone her. Them: No we don't do that. Me: but aren't they just saline? Can we at least ask the reconstructive surgeon? Them: No.

Sigh. I came back home disappointed that I wasn't one test closer to chemotherapy. Now that's just crazy. I called the oncologist. She was going to call me back when she got done with a patient. It was a loooong patient visit because I fell asleep before that happened. And when I woke up it was after six PM. OK, so maybe I'm a little strung out by all this.

BUT there's a silver lining. They have a really cute fish at the radiologists and of course I had to share him with you.

February is Full Body Nuclear Bone Scan Month - for me

Before chemo starts my oncologist, being the smartest cog in the wheel as far as looking at the big picture since I saw my General Practitioner, ordered a bevy of tests. Assuming that it's good to rule out other issues before we get rolling, this sounds workable to me - as long as nothing turns up.

If something does show up I'm not so good, but let's take this one step at a time. In the meantime, being smarter now after the test than before they started, I recorded some thought on the process and also made notes to pass along.

Wait - Susan - you went nuclear?

OK, it's true, a nuclear bone scan process uses tiny amounts of radioactive materials called tracers which are injected in a vein. These tracers then accumulate in certain organs and tissues, such as bones. I'm not any crazier about it than you are reading it but we do what we need to do.

I was a little hesitant to walk around the streets of Washington DC with  gamma waves radiating from my bones but apparently I didn't glow and they only could be detected by a special camera that produces images that will be gone over sometime today or tomorrow by the radiologists and nuclear medicine specialists at Sibley Hospital.

In the meantime, I'm OK - and here's what I recorded to share when I got home. Maybe it'll help someone else  .......

So tomorrow hopefully they wil have some news for my oncologist. No funky spots will mean I'm clean for now.

I mean lets be realistic. This is an invasive form of breast cancer and it could have sent little emissaries out to hide or grow anywhere in the past 10 years or so. I'm pretty positive most days but still I understand that anything other than a squeaky clean scan means I start worrying - and everyone else will then know to send goodies because I'll be a basket case if that happens - and with good reason.

Do I wish I'd gotten some quick tips before I went today? Sure. But face it people don't like to talk about this stuff. Plus who remembers little details like not wearing something with a tag that will bug you for however long you're lying there.

And I don't want fact sheets from some cold clinical cancer clearinghouse nor someone who wants to sell me a bracelet and a hat and a pin and a a sweatshirt and a . . .  well you know; sometimes the commercialism is just too much and I start avoiding some cancer websites.

Just give me a human face telling me like it is. I hope this might be what you're looking for too.

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.

 

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.

WUSA tv Meets My Frozen Pea Supporters

Video best viewed with Firefox browser

For more information about the frozen pea phenomenon and the wonderful pea supporters see the Frozen Pea Fund Blog which includes a link to help to the American Cancer Society via the Frozen Pea Fund, links to images of the wonderful supportive PEAple who sport PEA themed images online, and ways you can get involved.

For information about breast cancer resources see the right columns of this blog.

Thanks to

• Channel 9 WUSA for seeing the merit of this story and keeping at me until I did it;
• anchor Anita Brikman and producer Lauren Vance who were fun to work with and easy to entertain;
• Connie Reece, Cathleen Rittereiser, Chel Pixie, Ryan Karpeles and all the others who I don't even know about who work to make the peafund not only a surprise to me but an amazing success that is just gaining momentum;
• Kate Reynolds and Erin Kotecki Vest who run interference for me, answer questions about and for me, make sure bases are covered and try to read my mind every day of the week;
• Kathy Jacobs who worked to get permission to post the video and create the code to get it on the page (totally beyond my ability)
• and to all the PEAple who upload their PEAvatars, knit for me, bake for me and send cards and goodies to show their support

Last, and often left out, thanks to Bill Reynolds who not only works hard managing Legum and Norman's DC area Community Management department so he can buy the peas, but came home and put them in a baggie for me in the first place.