What's the status of chemo? What am I waiting for? Are the test results back yet? How am I feeling? What's happening?
I wish I could tell you.
It was a very quick diagnosis process and I sped headlong into mastectomy which I don't regret, and into beginning the first phase of reconstruction - a step that I seem to rethink more and more. And then there's the question: What's next?
So shocked when I saw the 10 year prognosis from the oncologist that I said YES to chemotherapy within minutes, I was lucky enough to need further testing and clearance from other specialists and that slowed the process down. Considering my general health and preexisting conditions maybe it needs to come to a dead stop for longer than an hour or a day and the options versus the issues involved thought through in a less emotional manner.
So I've called my own time out.
I'm in a holding pattern. Treading water. Thinking. Waiting.
Maybe I'm looking for a sign or a bit of insight or something I will recognize when I see it. While I'm waiting I made a video to talk about it.
When she insisted that I absolutely MUST have a flipcam, my friend and partner in what can we think up next, Connie Reece, was sure that I needed to do it to show people what it was really like to live with cancer.
Holy cats, Connie, I was thinking. This is just not something I'm comfortable doing. But do it I did, and am, and now it's not so strange anymore. I'll get better with it.
One of the reasons why I'll get better at it is reading people's reactions. They make me know I need to keep on keeping on.
"I now consider someone like Susan Reynolds. . . . totally appreciate her willingness to share her "hard" times, as well as those days when she is full of energy and hope. I can handle a hard day, just like she can. It gives me strength to face the "strange" and "sad" stuff just watching her whip out her new video cam and have the sheer guts to look us in the face and say: "I'm not doing so well today...". Girl, you give me a gift, every time you do that!
I don't really know the blogger who calls herself CyberGal except via a few conversations on twitter or her Blog. But I hear what she's saying when she wrote that because I could say the same thing about other people at different stages of my life.
So if what I do is helpful to one person I'll try to get better at it by doing it more often.
It feels silly sometimes. Like I'm taking it all too seriously. But I'll have to find a way that works for me and might be helpful to someone else along the way. That seems to be a hard path for me to find comfortable.
What's worse than coming back from the warm atmosphere, big hearted people and blue skies of Austin Texas; landing hard at Dulles outside DC; standing in snowy sleety weather to get picked up; having the next two days stay grey and dismal dawn to dusk; then blowing off all your appointments for the week because you're just so overwhelmed that you cant see ground level?
I've found out the answer. It's learning that a beautiful, smart, loving young woman who I sat next on on Saturday night, who I have known for only weeks through twitter but who acts and feels like family, suddenly is very ill and the doctors don't know why.
Granted, I've got cancer, but I've had a while to get used to that. Now what's more upsetting than me is that someone young like Lani is so violently sick with no notice whatsoever. The one bright light in this is that her husband Benn's with her at every step of the process. Did you see those images of him right there as the CAT scan got done?
And no I haven't got a lesson to share from this yet - it's far too soon. No wisdom; no platitudes; no insights; no talking about community and connectedness. Somehow I don't have anything to say; I'm feeling too much.
Just stunned silence, prayers and messages of support for her and her family.
Most readers of the blog know that I spent the end of last week in beautiful sunny Austin Texas, meeting with representatives from the American Cancer Society along with my husband and partner in all things Bill along with good friend, the Frozen Pea Fund fairy godmother, Connie Reece.
I appreciate the confidence in the Frozen Pea movement that the national ACS office showed in sending a reresentative to meet with us to discuss how what we do could benefit them. At the end of the day however, being tied into a Frozen Pea Fund season and the other suggestions we were presented with didn't seem to fit in with the innovative personality of the forward thinking early adopters who have grown the pea fund so quickly over the period of ten weeks.
So before close of business on Friday we filed incorporation papers for the Frozen Pea Fund in order to continue to do the kind of communicating, outreach, funding and community building
that my friends and family agreed were
important.
Too tired from flights, meetings, decision making and paper-filing to go out and celebrate, we did manage to put together a quick frozen pea fund video, propped up in bed as if we had spent a relaxing day there. That was the furthest thing from the truth but it took my mind off being so exhausted, and communicated to our friends at least the highlights of what was happening.
The next hurdle was ever leaving that bed. Eventually hunger won out and my husband and I decided to take a walk down memory lane with a visit to Black Eyed Pea for a late dinner. And while it isn't the same in 2008 in Austin as it was when the kids were
growing up and we used to go to one in Herndon VA sometime in the late
1980s I had a good salad and didn't have to do the drive-through burger
thing.
As in all things however, we do move on and changes happen in both people and institutions as well as restaurants. We are learning that in the Pea Fund as we learn it in other life experiences. There are up-sides and down-sides in cancer, in life, in where we eat and in decisions we make about the future.
I'm now a green pea person perhaps. But I hope our Black Eyed Pea video makes you smile.
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.
When I read information that shows how much community and a sense of connectedness can decrease recurrence of cancer, I start to think of all those cute little pea avatars I see online every Friday. When I had my biopsies those cool little peas stuck in a baggie in my camisole all huddled together in my cleavage, conforming to the shape of my breast, protecting it and bringing me cool comfort.
Face it - there's an analogy here
Just like those comforting, calming frozen peas in my bodice, what the pea avatars have come to represent are hundreds of virtual strangers who have come together to help me keep my cool on my walk through the cancer maze. It's a beautiful thing
Over the weeks since that day in December 2007, I've discovered more and more amazing caring people in the virtual community who don their pea avatars on Fridays - and increasingly I glimpse them on other days too.
More than words or gestures
These people have nothing to gain, but they provide me and other patients with a sense of community, of virtual support, that is absolutely invaluable to us.
We may not be able to measure how long we stay cancer free because of the support of our all those cool frozen peas surrounding us in our communities. We may not be able to measure our love for those people who have never met us and still reach out in many ways to us every day of the week.
But I can point out that I recognize that they help in real, identifiable ways, every single day.
And I thank them from the bottom of my heart.
graphic representation of connections in online communities above from orgnet community where you can learn more about community
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.
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.
Invasive Lobular Carcinoma My form of breast cancer is less common than others. In fact only about 6 to 8% of cases of breast cancer are the invasive form that is based in the lobules, not in the milk ducts.
Invasive, sometimes called Infiltrating, is a scary word. In most cases this form of breast cancer has been present for 8–10 years when detected by a mammogram or physical exam.
In my case there was clearly an area that felt thickened or dense on December 6, 2007. A mammogram the next afternoon was not able to detect it but it clearly appeared on ultrasound and was confirmed by multiple biopsies the same day.
During those 8 to 10 years the cancer took to become apparent to me, there has been plenty of opportunity for those invasive cells to get out of the breast and spread to the rest of the body.
It is after all, by definition, an invasive form of cancer.
Each year about 190 thousand women are diagnosed with invasive breast cancer in the US and about 40 thousand women will die of the disease. The larger the mass is when discovered the more risk. Mine had tentacled almost 5cm into the surrounding tissue and two other areas in the breast were discovered as well.
My chances of living another 10 years without cancer in another area are about 40%. The likelihood of one of my other underlying health conditions doing the job before that is 20%. it took a few months to get used to that idea.
Now though my attitude is that at least I know what I'm facing. It's just not what I expected. Life changes in an instant.
*Office hours Tues 5PM Eastern/ 2PM Pacific or just drop in & pick up a frozen pea t-shirt, pea beach-ball etc.
*Drop a notecard to my SL avatar Tynan Clary anytime.
by mail
Susan Reynolds
1474 Northpoint Village Ctr #314
Reston Virginia 20194
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