Boobs On Ice™

Waiting For Oncology Gods

It would be an understatement to say I didn't expect much from the appointment. But my reconstructive surgeon wanted me to see this one more oncologist. He worked with one who he talked with about my case. So back in June I had promised him I would meet his colleague.

My faith was pretty shaken. What could be more disheartening than my last experience with one of the  oncology gods?

So a little after ten AM this morning I walked into the familiar doctor's office building at George Washington University hospital, holding my husband's hand for reassurance.  I can't tell you I had anything but reservations.

The space the Hematology and Oncology department has seems darker and is more cramped than the one I'm used to a few floors above. There's no teak, mahogany or brass in sight. One desk area sits beside a rolling clothes rack of freshly laundered lab coats in an area carved out of the hallway and on it the computer monitor looms, looking like it was made in 1992.

In a waiting area no larger than a smallish apartment bedroom, patients sat as if waiting for bad news but hoping for the best.

No one was alone. One was with his friend, another was a mother daughter pair. There were three husbands accompanying wives, ages ranging from fifty up a decade or two; it's hard sometimes to tell age with cancer patients.

As we waited, husband grumbling about doctors not keeping their appointments timely, me - when I wasn't popping up for a continuing stream of water to quench an unquenchable thirst - lecturing on doctors that had to deal with difficult diseases, a white coat caught my eye outside the lab. Discussing a woman's blood work with her son, there was something notable in his manner with the young man who was asking questions. They moved a few feet into the hall and leaned towards each other, looks of concern on both faces. 

It was an oddly reassuring moment amid the quiet. Could this be more than just another stop along the way for me? Maybe there were oncologists that did not treat all cancer patients like pegs to be fit into neat round holes.

Nevertheless, I reassured my husband that I wasn't too emotionally invested in this doctor being "the one". He said he'd failed to see the name tag on the doctor we'd seen in conversation.

There are seven or eight of them in the group at GW; who knows who this random stranger was?

OK - I reiterated - if this appointment was a bust I was on my way to Hopkins. My heart would not be broken.

But I didn't need to worry.

I've found my pragmatic oncologist. One who does not think he has all the answers. But if there are problems we'll work around them.

And he told me to email him.

The guy in the hallway.

Sold.

Speaking in Future Tense

"My death from cancer doesn't appear imminent. But I know I won't be able to do some of the things I want to. For one thing, my body has been pretty beat up. I'm just not physically up to it.

"When I find myself thinking two, or three, or even more years ahead, am I being silly? Feeling the phantom pain of a future that's no longer there"

Leroy Sievers wrote this about what may not be the worst pain of the cancer disease and treatment saga.

Although it's not the worst pain, getting used to what we can't do anymore and changing our ideas about ourselves and the future is difficult. It's not being maudlin or not thinking positively or being depressed or morose to admit the truth. And we each find our way to adapt. Or we don't and are miserable.

OK, maybe we remain a little miserable anyway.

But I'm working on adapting to what I can do in the here and now. And I'm thinking of what next year, and the next, could be like given the limitations I'm given.

It's really not so horrible; but it's a little sad. A bit like potential lost or a lover that leaves us. Things will never be the same. They can be good - but not the same. And greiving for that can be healthy, though painful.

Granted I won't have the exact future I envisioned as an eighty year old with a big house full of grandkids coming and going that my grandmother had - unless they're coming to bring meals to Nana.

I can't handle a big house and that's a fact. So thinking small and neat is smart and a way to be pleased with each day instead of frustrated. Somehow, no matter how I wrap my head around it I can't think of denial as superior to practical realism.

One ex-friend called my approach "negative energy" and wrote my daughter that she needed to protect herself from it. I was hurt - but it is what it is and we each live in our own reality.

That I'm allowed to know a little more about my future in advance and prepare mentally for it is part of mine. I look forward to happy times. Realistic, but happy.

I count myself lucky in that regard.

A Few Hours of Normal

This year my #3 daughter, the one lucky enough to still be at home, so the one who's able to experience ME on a daily basis, will be away from home the day I go through the ritual of putting on my red shirt and plopping down in front of the TV accompanied with lots of trash talk about the Ohio Buckeyes season. It's no secret that she's relieved.

She puts up with football because I love football. Otherwise, not even the idea that - hey: these guys are wearing tight pants - really does it for her.

She has no interest in who Colt Brennan's coach was at Hawaii, what the Mountain West league is doing, or how odd Favre looks in a Jets helmet.

And this year I expect no startling transformation. Nothing will really change about football days at my house. Not even Ohio Buckeye football days. The only difference will be inside my brain.

Last year I spent the opening weekend of the NFL season in the hospital because of a stroke and rounded the season out with surgery for breast cancer.

No matter what we claim, or how we talk the happy talk, experiences like that change the way people think and feel and react. There's a little niggle in the back of my mind about an odd sensation, or a follow up, or if what I'm snacking on has plant estrogens in it. So this year every football game I watch will be an excuse to quietly celebrate an hour or two of "normal."

For just a little while I'll just be a fan watching a game. OK, a fan watching a game and trash talk twittering.

My Cancer

"It's not sleepy tired. A nap really doesn't solve the problem. It's more just physical exhaustion. I tell myself that it's just my body, using its resources to fight the disease. I hope that's true. But there are times where I lie down for what I think will be a short nap and wake up hours later.

"But it's more than just being physically tired. You get tired mentally. You get tired of fighting sometimes. Tired of telling yourself it will be OK. Tired of telling your friends that you're fine, and acting like it's true. Just tired of dealing with it all: the doctors, the shots, the pills, the cancer"

Leroy Sievers wrote that two years ago. And yet he kept moving on.

Last week I tweeted that when Leroy blogged that he had a toy dog in bed with him my heart was breaking. I wondered how much more I could read without being totally overcome with sorrow at his decline.

Then on Friday distant thunder and deep booming explosions rolled across the Washington area, making it sound more like a war zone than any storm I'd ever experienced. It brought with it a feeling of unease. Maybe foreboding, but who can say in hindsight.

And within hours Leroy was gone.

Leroy told the story I am too afraid to face head on to start talking about it more frankly. He talked about the doubts about treatment vs no treatment for what is after all a disease that will kill us. He disliked the term "survivor" and admitted he was a difficult patient. My kind of guy.

And now?

I am indeed heartbroken. And I will so miss his voice.

NPR: My Cancer

Cancer Fundraising - Sacrifices and Possibilities

Pan-Mass Challenge - One Rider's View from Doug Haslam on Vimeo.

I'm proud to know Doug Haslam who made this video of his experience with the PanMass Challenge, a 2 day bike trip across the state of Massachusetts to raise funding for cancer research and treatment. And I'm proud that the Frozen Pea Fund could contribute to enable him to make his goal.

He's got some excellent footage of what it's like to participate in this sort of event and something that stood out for me while watching was how much small bits of support can help participants.

One of the things that happens with individuals taking on a challenge like this is that it's just overwhelming. Not only the physical effort that goes into it, but the idea of finding support to get that fund-raising thermometer started, or to finally get to the goal, can be difficult.

The thought of what supplies and gear might be necessary to outfit a team with what they need can be intimidating as well.

Although it will take lots of people to make it happen, it's my hope that in some small way what the Frozen Pea Fund can do for people who make these sacrifices is to help those who want to participate leap more easily over some of those hurdles along the way.

I've been doing my own thing and not talking too much about it lately, preferring to put some time into volunteer efforts and outreach rather than to thinking much about my own situation.  At least that's the plan. It seems like it's one step back then another forward, then another back, but overall there's progress over the past six months and I'm glad about that.

I promise I'll share a little more about my own story soon, but right now I'd rather focus on people like Doug who put their energies into doing something hard so that research into a cure for cancer might be found.

PS - Doug's still glad to find new supporters and has a sponsor page set up here