Boobs On Ice™

The Cost of Life

It's not just a tight economy that makes considering the cost of long term medical care daunting. Some of us can live years, decades, or longer while being treated for cancer or after having a cancer removed. So when I found out what the anti-tumor drug, Arimidex, that I'm scheduled to take for five years would cost without insurance coverage, I was kind of speechless.

My husband turns 62 in a few weeks. Although I think he can't work forever, he claims he will need to, and beyond good insurance coverage that comes with the job, it's pretty clear to me that I'd soon go off many of my prescriptions, especially one that costs $250.

Granted, there are groups like the Partnership for Prescription Assistance, set up to match people with public or private programs to get medications to those who need them.

But how many of us aren't looking for a handout?

We don't want our friends to raise funds for us. We're not asking to get our medications for nothing. We don't want other taxpayers paying for our medications either, in some feel-good utopian ideal society where we're all equal because the state imposes that on us.

We especially don't want to be stuck living a subterranean, windowless existence our kids' basements because even pooling our money we can't afford to build extra rooms onto their houses AND pay for medical care and we don't want to take money that should be used for their family vacations at Disney World and piano lessons for the grandchildren.

But we're still shocked when we discover what our medications really cost beyond our copay of someplace between fifteen and thirty-five dollars.

The truth can be daunting

The future looks much less sure than it used to. Ten years ago I had planted firmly in my brain the image of being the healthy old lady my grandmothers were. And I wonder how many of us would make different choices about medical care for breast cancer - or anything else - if we factored in possible future financial fallout of whatever we will need as a result of decisions we make now.

Given my age, it could be that I am just delaying more tumor growth for 5 years, thus insuring that a recurrence will happen when I'm covered by Medicare and thus have many fewer options.

The AZ&me program looks like it may make it possible for to get a 90 day supply of Arimidex for $50 for a retired couple on a very low fixed income but by then what other medications will I need?

It seems obvious, but unspoken, that there is a cost, both emotionally and financially to keeping people with chronic or terminal illnesses alive.

And beyond that, it's not just a question of living - but how we live.

Do we as a society insist that if our people are kept alive through modern medicine, that hand in hand with that goes having their pain controlled? Do we as a society also take the responsibility of insuring that the living are not just warehoused but feel productive? Is that really our responsibility?

All of it may be something we as a country need to think about. Choices are hard. Hell, the whole topic is hard.

It's easy to philosophize about when the topic is an abstract one. It's easy to write a prescription plan to send to Congress. But as for living the everyday of it? Pfft. Not pretty.

Is going back to hiding under the covers and believing that tomorrow some magic will happen an option, because if it is I'll take it.

And if I win the lottery I'll make sure I sock it away for that really bad day down the road. It's just that lately, I'm not sure what a real emergency looks like.

The Guts to Play Hurt

Penn State's football coach Joe Paterno says there's a difference between his players being hurt and being injured. Just looking at the sheer numbers of young people he sees come through his program in a year I figure he's witnessed both injured and hurt far more than most of us.

In other words, being stupid is never smart but persevering through tough times builds character and shows that not all goals get cast aside just because of personal comfort.

Hurt or Injured?

I'm not so sure I know the difference anymore. Cancer is not so easy to classify. It's just the cherry on the top of a number of years of declining health. I'm not injured, but I'm pretty well banged up and I'm not so much interested in playing.

Today I'm spending the day in bed, and that is, I'll admit, not so unusual anymore. What started out as being uncomfortable or in pain in the days surrounding my biopsy and surgeries has somehow changed over the past ten months to the point that I don't feel like I'm fit company for man nor beast.

The failed implant coming so soon after complications from a second surgery maybe was the turning point for me, or maybe it was just one more thing along the road that brought me to where I am. Add my dramatic reaction to the anti-tumor meds I started three weeks ago and it's just a really unattractive picture.

If this is a phase I'm ready for it to be over.

Flashback in time: As a naturally protective mom it was hard but I knew the importance of teaching my son to keep playing in the last third of a soccer game even when cramping muscles and feeling winded made him give me the "Mom, I'm dying" look. If the girls twisted a wrist in gymnastics, dance or softball, an ace bandage and some ice might be in order but the performance went on. Because character and commitment matter.

But I apparently didn't get the memo that it also works the other way and I need to just keep on keeping on as well. The last time I had dinner with someone outside my immediate family: March 2008. The last time I had lunch with someone outside my immediate family: August. It's not cancer that has turned me into a hermit. It's my reactions to it that have done the job. Today I just say "no" to invitations.

Could it be just too hard to face "normal?"

I can talk the talk but apparently I can't walk the walk.  My mom's been gone a long time and she was never much of a cheerleader anyhow. Is it fair to ask my own kids to turn the tables and drag me out? To make me keep on keeping on?

That's a hard burden to put on their shoulders. So I don't.  Besides, the eldest has not spoken to me in years, the second is tied up in her own life, the third is based across the country with a new wife, and the fourth has been stuck with being at home to play stand-in for the others during the past year. That's enough pressure for any one person, so expecting her to also be my cheerleader / coach / harassement officer is just not right.

While on one hand I'm glad my children are not young enough to have to deal with this when they can't understand it, I wonder if they can ever understand at any age? I wonder if it would be easier to be forced to get out of bed because they would at least need me if this had happened ten or fifteen years ago. But I don't have any of the answers.

Moms are supposed to know everything. Guess what; we don't.

I don't know how people who face uncertain futures and daily pain deal with months, years, decades. Is there a handbook some of us are lucky enough to have gotten ahead of time? Are some of us just tougher or better or smarter? I've got a lot to learn and I only hope I can do so gracefully.

As I wait for this phase to pass - or whatever happens next to just happen - I wonder how many other cancer patients have the same kinds of reactions. How many even acknowledge that these feelings exist? How many have courage to jump into everything they do with both feet and how many take the easier path of stepping back from "normal?"

There's good news though.

I'm not crying today. Not yelling at people nor overmedicating. I'm not oversleeping, drinking nor overeating. But it remains that I'm hurting and treading water.

I just keep thinking that if there's one thing I've learned it's that this too shall pass.

Or maybe I need JoePa to whip me into shape. Somehow, I don't think this malaise, disconnect, or whatever it is would fly at Joe's house.

Fear: Looking For An Antidote with Susan Piver

What's with the cancer blog? Has it turned into my book review spot? Well - that's not exactly what's happening.

What's going on is that I'm a lucky woman in many ways.

And one of the nice things that has happened to me is that I was most flattered to receive this book - How Not to Be Afraid of Your Own Life: Opening Your Heart to Confidence, Intimacy, and Joy - as a gift from author Susan Piver who I am blessed to know via twitter.

I found it inspiring to read of the author's own experiences and how she used Buddhist techniques to live a life of joy, not fear. That alone is a daunting job and this is a book I'll keep nearby in the months ahead as I continue through the next five years of my cancer treatment.

First it should be said that I'm a pragmatic woman and not entirely someone you'd point at and say: Oh she's definitely the "meditation" type, though living through the seventies it would be hard for me to have missed attending numerous classes in that vein.But I'm a believer in the power of periods of quiet and spirituality.

And there's a real grace and charm in this book as well. Susan writes in a practical, down to earth way. If something works for you or the ideas she writes about resonate with you, she suggests that we use them. Conversely she'd hope that if it's not helpful, we just let it go.

She's not full of dogma and lecture but full of grace and generosity. And the same can be said for her book. Now I pick it up and read it with some regularity and have found it to be an excellent resource.

From the viewpoint of a cancer patient trying to come to grips with a new reality the book is full of helpful suggestions. I'd think that it would also be useful to anyone willing to see potential of others' beliefs and practices as well as looking for ways to infuse their life with peace, even in small doses.

Any doses of peace and joy are fine with me these days. Thanks Susan.

Unhelpful Breast Cancer Treatment Side Effects and Coping Tips

This week I'm wondering why drug companies tippy toe around issues, passing out safety information along with long lines of text saying nearly nothing that's really helpful.

Case in point for me this week is Astra Zenica, the drug company that makes the anti-tumor medication that I'm having problems adjusting to. Let's just say that the side effects are dramatic, but the other option is doing nothing to discourage invasive cancer cells from popping up in unhandy places.

So I want to give it my best shot, and looked to the website for more information about how changing the timing of dosage, or _something_  might have proven helpful to some of the thousands who have already had experience with this drug.

I was less than impressed with the suggestions / information on their "in your corner" patient support website.

Their "Coping tips" for side effect consists pretty much of the following

• "Talk to your doctor to discuss treatment options, such as over-the-counter pain relievers like acetaminophen or prescription pain relievers."

• "Apply a little heat. Try using a heat pack or taking a hot shower"

Considering they've also been talking about the hot flashes and sweating, this just does not seem too helpful. Somehow I think that those aren't the kind of caring, creative, inventive, or even technical, nor especially smart things I was looking for from inside the company which should have all sorts of data from numerous patients who have taken the drug!

This stuff though? I'm pretty sure almost all their patients came up with these ideas on our own a couple of days ago before we decided to pull out all the stops and really try to get rid of the pain, heat, nausea, headache, moodiness, dizziness and all the rest by hook or by crook.

I have the scary feeling that we're on our own here, ladies.

MBIs Hold Hope For Early Detection

From the Mayo Clinic comes word that Molecular Breast Imaging is More Effective than Mammography at Detecting Cancer in High-Risk Women with Dense Breasts

The information released this week says "MBI is a relatively new screening method that, while more expensive than mammography, is about one-fifth of the cost of breast MRI (magnetic resonance imaging). With MBI, patients are injected with a short-living radioactive agent that is absorbed by breast tissue. This agent is tracked with a specialized camera that can distinguish healthy tissue from breast cancer tumors, as cancer cells absorb more of the radioactive agent than healthy cells. MBI is currently available at a limited number of cancer centers, but its availability is growing."

“These results suggest that MBI could become an important screening tool for women who have dense breast tissue and increased breast cancer risk,” said Carrie B. Hruska, PhD, a research fellow in the Department of Radiology at Mayo Clinic in Rochester, Minn.

Speaking as a woman who had a negative mammogram in a breast that obviously contained a significant thickening, and was later diagnosed as cancerous after ultrasound, biopsy and MRI imaging was completed, I'm looking forward to finding out if the medical community can prevail on the insurance machine to be enlightened enough to use this information as a way that could potentially nip any future problem in my remaining breast in the bud.

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