Today is a somber anniversary in our household. One year ago today, we sat down with a doctor here in Keene to go over the results of some tests on my wife. He came into the room and went immediately to the point… hardly even saying hello. I don’t remember his exact words, but they were basically:

“I have some bad news. You have cancer.”

He may have said it differently… but that was the core message. Simple. Direct. To the point.

And everything changed for us.

The rest of that appointment and indeed the year has become a blur of learning more about cancer, medicine and the medical system than I ever expected to learn at this age.

My wife, who at the time was in the best physical shape she’d ever been in, proceeded down a path where she lost her breasts, lost her mane of hair, lost parts of her memory, lost her stamina, lost her ability to quickly process things in her mind, lost her physical health… and basically lost a year of her life.

The good news, of course, is that she didn’t lose her life, and that as a result of the treatments she’s undergoing and the fact that they caught the cancer early, she’s got a very strong chance of being around for many more years. Her cancer was “only” Stage 1 Invasive Breast Cancer, and could have been so much worse had it not been detected.

Intellectually, that’s easy to say. Emotionally, it’s a lot harder. It’s been a hell of a year.

And the journey is not over. She’s still got another 7 months of Herceptin treatments… and another 4 years after that of daily Tamoxifen pills (that she is also taking now), both of which have their own troubling side effects. And as we’ve learned, you’re never really “cured” of cancer. You win battles, but the war inside your body continues.

A year ago, the big C invaded our life and became a thoroughly unwelcome houseguest. Now we just have to continue learning to live with it…

Some of the articles I’ve written about our journey with cancer, in chronological order:

• Of Inverted Nipples… and Breast Cancer
• Of Surviving Breast Cancer… And The Choices Therein
• The Hellacious Purgatory of Waiting
• And So The Waiting Ends – With Chemo…
• The Frustration of Breast Cancer: Dealing With Hypotheticals And Going On Faith
• The Incredibly Tedious Monotony of Chemotherapy
• My Wife’s Interview About Breast Cancer In The Keene Sentinel
• On To The Next Sledgehammer In The War On Breast Cancer…

There is perhaps no more powerful statement on the betrayal felt by many women with regard to the Susan G. Komen / Planned Parenthood debacle than this one simple video from “Linda”:

The pain of her treatment is that felt by at least 1 in 8 women during their lifetime. Her scars on her chest are like those of my wife and so many other women for whom the “cure” involved radical changes to their bodies.

Her sense of betrayal is that of so many women.

It’s not that the Susan G. Komen For The Cure organization can’t choose who it wants to fund based on ideological/political reasons. It can. That is a perfectly valid way to run an organization and to choose who to fund.

But that’s not what people signed up for.

It’s not what they donated money for.

It’s not what they ran or walked races for.

They donated/ran/walked/volunteered… FOR THE CURE.

There was never an asterisk on the “cure”.

It was never “for the cure as long as said cure meets our ideological/political guidelines“.

It was for the cure. Period. Full stop.

Perhaps it was naive to believe that no politics were involved, but people believed in the story of the Susan G. Komen For The Cure organization. They completely empathized with Nancy Brinker founding the organization based on a promise to her sister who died of breast cancer. They believed in the story. They supported the organization with their time, money and energy. They made the Komen organization the amazingly powerful force that that is today.

It was for the cure. Period. Full stop.

But then Komen completely mishandled communicating the Planned Parenthood issue and made it far worse with a disastrous interview with Andrea Mitchell that raised many more questions than it answered.

Sure, the Komen Board eventually reversed its position, which was pretty much guaranteed to satisfy almost no one. And certainly many people may be pleased at the departure of Komen VP Karen Handel.

But Komen has a far larger problem.

The proverbial curtain has been pulled back and Komen supporters are learning more about the organization that they have supported.

They are learning of the political activities of the organization’s leaders. They are learning about other instances, such as the ending of funding to organizations that supported embryonic stem cell research, even though no Komen funding apparently went directly to such research and the Komen organization had in fact trumpeted the potential of such research back in 2006. A statement about this topic on November 30, 2011, was apparently posted to the Komen website but subsequently removed.

Regardless of how you may personally feel about embryonic stem cell research and whether you think it is should be pursued or whether you think it should be outlawed, this is another example of the politicization of Komen’s grant-making.

It was for the cure. Period. Full stop. Never with an asterisk.

And more questions are being raised about Komen’s methods, their choices, their staffing… and, well, pretty much everything about the organization.

And while there can be no doubt that the Komen organization has done a tremendous amount of work for breast cancer education and research (just look at the last few pages of their 2010 Form 990 to see all the many grants they’ve given), the question many of us (including my wife and I, who have been definite Komen supporters during my wife’s ongoing fight with breast cancer) are now asking is:

Are they the right organization to whom to donate?

Can we trust Komen’s leaders to truly put the “cure” above their personal politics?

Are there better organizations where we should focus our time, dollars and energy? Can our dollars be more effective going to organizations directly involved with research?

How do we find a cure for breast cancer? Or at least better tools than the sledgehammers we have today?

Komen’s now lost the trust of the Linda’s of the world who believed so strongly in the mission and purpose of the organization. Can they regain that trust? Maybe. Maybe not.

It was for the cure. Period. Full stop. Never with an asterisk.

This Monday morning begins, as many have over the past 6 months, at the Dartmouth-Hitchcock Norris Cotton Cancer Center-Kingsbury Pavilion (say that 10 times fast!).

In her ongoing fight against breast cancer, my wife ended four months of chemotherapy with her last treatment back on December 6, 2011. She’s thoroughly enjoyed having several weeks without any kind of treatments. Her hair is very slowly starting to re-appear and she’s been feeling overall pretty good.

Today begins the next course of treatment. She is starting one year of receiving a drug called Herceptin. Her breast cancer tumor was found to be “HER2/neu positive” and the theory goes that the antibody in this drug will help reduce the chances of recurrence of her cancer. Every three weeks for the next year, she’ll be coming in to the cancer center for a couple of hours to get an intravenous infusion.

Herceptin is NOT chemotherapy and the side effects are expected to be minimal. Perhaps just some fatigue for a couple of days. (And, oh, yeah, there are potential cardiac issues that need to be monitored… 🙁 )

And then assuming all goes well, in 3 weeks she will start five years of a daily pill of Tamoxifen an anti-estrogen hormone treatment that will effectively be trying to starve any remaining cancer cells that need estrogen to grow. All sorts of lovely potential side effects to that including many of the effects of menopause (ex. hot flashes, mood changes), memory loss/fuzziness, and even increased risk of other cancers.

Not fun.

As we’ve gone through this process, I admit to feeling that as far as we have come with research into breast cancer (and we HAVE come a long way), we still have such a long way to go.

The treatments we have today are like a series of sledgehammers, each trying to do what it can to beat the cancer cells down. Your treatment seems to be:

• operate on your body to physically remove the tumor
• slam your body with a series of radiation blasts to kill cells that may have been around the tumor (thankfully my wife did NOT have to do this)
• slam your body with truly toxic chemicals (chemotherapy) to try to kill off any remaining cancer cells (and many other good cells in your body)
• slam your body with antibodies to try to block and kill any remaining cancer cells
• slam your body with hormone therapy to try to starve any remaining cancer cells

Wham… wham… wham… wham… blow after blow after blow after blow in an attempt to kill off any cancer cells in the body and reduce the risk of recurrence.

All the while with the frustrating reality that there might not be ANY cancer cells in your body right now!

Now, the treatments are getting better. Instead of big, massive sledgehammers that are applied to every woman, the treatments today are perhaps smaller sledgehammers that can be targeted a bit more. There are tests that can determine whether some treatments are appropriate – or not – for people. (Something I wrote about before.)

Still, though, the treatments seem to be pretty heavy-hitting.

We need the mystical “scanners” of sci-fi shows that can scan a body and confirm the existence of cancer cells to see if any of this is really necessary.

We need even better drug options that can target specific cancer cells more like scalpels instead of sledgehammers.

We need the “nano-machines” of sci-fi that can travel through the blood and find and kill cancer cells.

We need more refined and targeted weapons in this ongoing war on cancer.

And I know we WILL have improved weapons over time…

Meanwhile it’s hard to argue with the odds of using the existing treatments. According to the tests on my wife’s tumor and based on various studies, there was a 60% chance that she’d be cancer-free after 10 years if she did no further treatments beyond the removal of the tumor.

Add chemotherapy… add Herceptin… add Tamoxifen… add all that together and statistically her chance of being cancer-free after 10 years is now up in the 90s percentage-wise. Maybe 92% or 93%.

60% vs 92%

Not a hard decision to make, even with all the side effects.