Dan York

Can Komen Ever Regain Our Trust?

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.

On To The Next Sledgehammer In The War On Breast Cancer...

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.

My Wife's Interview About Breast Cancer In The Keene Sentinel

While I've already tweeted, Facebooked and Google+'d about it, I should record here for the sake of completeness that my wife was recently interviewed for what turned out to be an excellent article and photo of her in our local Keene Sentinel newspaper.

The article, titled "KEEPING THE FAITH" by columnist Sherry Hughes, is now available online and was on the front page of the Friday, October 21, 2011, dead-tree edition of the Sentinel as part of a feature on Breast Cancer Awareness Month.

As she will say herself, this was pushing my wife WAY outside of her comfort zone... in stark contrast to me, she is an intensely private person and severely dislikes having her picture taken (even with hair!). She agreed to do the interview when asked by a friend... and then proceeded to do it even after finding out that a photographer would be coming.

It turned out to be an excellent, inspiring and uplifting article (admittedly, I'm intensely biased :-) and I thought the photo of her turned out great. I'm extremely inspired, personally, by how open she's been about it all... "it is what it is", as she says.

Anyway, that's the last chapter in our ongoing cancer saga... a bit of unexpected publicity and a chance to tell her story...

 

The Incredibly Tedious Monotony of Chemotherapy

Today is my wife's second (of four) chemotherapy appointments. She is sitting right now at the Norris Cotton Cancer Center at the Cheshire Medical Center here in Keene, NH, with an IV of toxic drugs flowing in to her.

Many friends have contacted us/her wishing her all the best today... hoping it all goes well... relaying that they are thinking/hoping/praying all the best for her.

All of which is VERY much appreciated.

The truth, though, is that today is really not bad.

Today is really just incredibly... well... monotonous.

Boring. Tedious. Whatever word you want to pick.

This has been a fascinating revelation to me who knew nothing about chemotherapy before this all began.

Here is the snapshot of our day...

We arrived at the hospital at 9:30am. A little before 10am we were brought back into the chemo treatment area were she sat down in a comfortable recliner-type chair. A nurse drew some blood samples that were sent off to the lab and then proceeded to get some vital signs and other normal tests... and then we waited for the lab work to come back.

Once the lab results came back fine, they set up the IV with some anti-nausea medicine, some saline, etc, etc, and give that to my wife for a while. There was some other medication my wife had to take an hour before the actual chemotherapy chemicals began, so she had to take that and wait.

Sometime after noon, they administered the first of the two chemicals that make up my wife's "cocktail". It ran for over an hour dripping into her bloodstream through the IV line.

After that was all finished, they hooked up the second of the two chemicals... and that will run for 45 minutes. After that she may be done... I don't quite honestly remember if they did something else. She'll probably be ready to go home somewhere around 2:30 or 3pm.

But this is what "a day of chemotherapy" is like.

Sitting. Waiting. Sitting. Waiting. Sitting. Waiting.

For hours.

They have individual TVs there, of course. And she and I talk now and then. The anti-nausea medication makes her kind of tired, and so many of the patients, her included, take a nap for a bit... or just don't feel overly talkative. Friends have stopped by for a visit, which is a nice distraction. You can get (or bring in) food and drinks. A volunteer came by offering Reiki massage. They have free WiFi so you can use the Internet with your computer (which is what usually I do... sitting there doing work while my wife rests).

But overall it's just a long tedious day of sitting and waiting.

If her experience this time is like the last time - and like what we understand from others in the process - this afternoon/evening she may be a bit tired from the drugs but overall okay. Tomorrow she will probably be fine. Wednesday morning she may be fine.

And then sometime on Wednesday the hell will start.

The chemicals will be doing their deed of killing cells and the body will be reacting. And then will come the pain, the sickness, the fatigue...

... which will pretty much continue straight through the weekend and on into next week...

We're hopeful with some new medication that this time around it won't be quite so severe, but time will tell.

Today, though, is all about the monotony of the injection of the drugs.

Sitting. Waiting.

Sitting. Waiting.

Image credit: drhenkenstein on Flickr

The Frustration of Breast Cancer: Dealing With Hypotheticals And Going On Faith

No question perhaps highlights the frustration of breast cancer than the one I am frequently asked:

So how is Lori doing?

You see... physically she is doing perfectly fine.

At least... she has been doing perfectly fine up until today when they will inject her with various noxious, toxic chemicals to make her worse so that in the end she will theoretically be better.

This is the conundrum of early stage breast cancer.

There are no physical signs.

You are not "sick" in any noticeable way.

You feel perfectly fine.

In fact, my wife is probably in the best physical shape she's ever been in. She's walking 5-6 miles a day and just in great shape all around.

Physically.

You would have no clue that inside her MAY lurk a few random cells that can morph and evolve in such a way that they can cause other problems and even death.

It would be much easier in so many ways if she was sick in some way. With some other forms of cancer, the pain and sickness are very apparent.

You are sick... therefore you need drugs and other treatments to make you better.
Simple. Easy.

But with early stage breast cancer you have no signs.

You are dealing entirely with hypothetical situations.

The studies say that you have a 60% chance of not having cancer after 10 years if you do this.

The studies say that you have a 70% chance of not having cancer after 10 years if you do this.

The studies say that you have a 90% chance of not having cancer after 10 years if you do this.

With again the reality that

you might not have any cancer in you today...

... if only we had some way to know.

But we don't.

And so, as a friend said to me this morning, we are "going on faith".

Faith in the medical system. Faith in the doctors and nurses who have been treating her - and all the research and analysis they have done. Faith in the scientists who have performed all these studies and spent the long hours in their research. Faith in the accuracy of the very human people who have been administering all these fancy tests - and in the designers behind all the software and systems.

Faith in the fact that this course of treatment that will make her very sick in the short term will give her better chances in the long-term.

Going on faith.

It's insanely frustrating, but in the end it's all we have...

And So The Waiting Ends - With Chemo...

Well, at least we have an answer. We are no longer stuck in limbo.

The results of the testing I mentioned in my last post on my wife's tumor came back... and unfortunately not with the results we'd hoped for. It turned out that her tumor was slightly more on the aggressive side... and that they best they could estimate was that if she did nothing more there is only a 60% chance she'll be cancer-free in 10 years.

She's only 43 years old... 10 years is not a long time.

... and 60% is not really a great percentage.

So after much discussion and research she begins a four-month round of chemotherapy tomorrow, which will then be followed by five years of a hormone therapy once the chemo is done in December.

In theory, the hell we are about to endure for the next few months plus the five years of daily Tamoxifen will together raise the chance of her remaining cancer-free to over 90% at the end of ten years.

90% vs 60% ... not hard to argue with those stats.

But of course the irony continues to be that she could be cancer-free right now... and won't need the hellacious drugs, fatigue, sickness, hair loss and other horrible side effects.

But we have no way of knowing...

And so it begins...

Image credit: M.Markus on Flickr

The Hellacious Purgatory of Waiting

Waiting sucks.

There is no other way to say it. More polite phrasings simply do not convey the correct emphasis. Waiting sucks.

And now... we wait.

Two weeks ago we visited my wife's oncologist to learn what would be the treatment options for her breast cancer now that the mastectomy was done. Naively, we thought based on what we had heard after the operation that all we would really be talking about was whether or not it made sense for her to start taking a hormone drug, Tamoxifen, for the next five years. There are some various medical history issues that raised some questions about that... so we thought our discussion would be about that.

The oncologist at our local hospital sat down with us for what turned out to be most of 2 hours. She walked us through my wife's pathology report and started out talking about all the positive aspects of the report... but with an unspoken "BUT..." hanging out there... until the "but" was spoken... and a word we thought we'd never hear was voiced:

"Chemo"

We figured with the tumor rather drastically removed (since the entire breast is gone) and the sentinel lymph node coming back clear, we were done with any thoughts of chemotherapy.

And we may be... or chemo may be back on the table.

Unfortunately, my wife's tumor turned out to be invasive breast cancer and as such there is a danger that it could spread into other parts of the body and morph into other forms of cancer. The "sentinel" lymph node was clear, meaning that there was no sign that cancer was regularly spreading into the rest of her body... BUT... there is always the chance that a small amount of the cancerous cells could have already spread into her body and not left any sign in the lymph nodes.

The oncologist had an interesting viewpoint:

My wife will never have as little cancer in her body as she does right now.

It took me a moment to wrap my brain around that one. The reality is that with the tumor gone and with the sentinel lymph node clear, odds are that IF any cancer made it out into the rest of the body it is only out there in a tiny amount - and has not yet started to attack other cells.

So now is the time to do everything possible to kill it.

Hence considering chemo as an option.

Of course, the insanely frustrating aspect of all of this is:

There may be ZERO cancer cells in my wife's body!

They may in fact have been completely removed with the tumor. But there is no way to know... and it comes down to what level of risk you want to assume and how comfortable you are playing the odds that the cancer is gone.

Hence the waiting.

They are doing another round of blood tests and actual tests on my wife's tumor, specifically an Oncotype DX test, to help provide more data to determine whether chemo would really help fight the specific cancer my wife had/has. It turns out that for a certain % of women, chemotherapy really isn't that effective, for a certain % it is very helpful, and another % is in the middle of those two sides.

Into which category does my wife fall?

For that we wait... "7-10 business days" is how long the test takes once they get her tumor... and while you are waiting that seems like an agonizingly long time.

And so we wait.

And wait.

Stuck in an unwelcome purgatory... unable to make concrete plans for the next few months... unable to understand what our future holds... paused in a limbo where life seems to be on hold - even while the everyday life around us must continue.

Just waiting for a call that says the test results are in and we can sit down and start to understand what comes next.

Waiting sucks.

And so we wait...

Image credits: mag3737 and 25182350@N03 on Flickr.

Canada's Jack Layton Succumbs To Cancer - And Leaves An Awesome "Final Letter" to Canadians

Today is a sad day for our friends up north in Canada - Jack Layton, leader of the National Democratic Party (NDP), passed away this morning at the age of 61 after multiple battles with cancer. The Globe and Mail has a nice tribute to Layton and pretty much every Canadian media outlet is currently writing about his death. For those with no clue who he is, his Wikipedia entry provides a detailed background on his life and work.

I never had the privilege of meeting Jack Layton, but certainly knew of him and read about him / saw him on TV all the time. When we lived in Ottawa, Ontario, from 2000-2005, the NDP was first led by Alexa McDonough with Layton taking over the leadership reins in 2003. Given that as Americans living in Canada we couldn't vote, we didn't have any direct connections to the political activities going on... but as a hardcore political junkie[1], I was fascinated by the Canadian political system and how very different it is from ours.

After moving back to the US in 2005, I've tried to keep up with what is going on north of the border. It's actually quite hard given that our mainstream media here in the US pays almost no attention to what's going on up north. My main news conduit actually has been through the Canadian friends I follow on Twitter and Facebook... their links have kept me up-to-date with what's going on in Canadian politics.

And so it was that I followed the rise of the NDP and their amazing success in the 2011 election with the NDP becoming the official opposition party for the first time in history.

And while it was known for some time that Layton was ill, the finality of his passing certainly has shocked a nation.

Layton's final letter to Canadians, though, is what is also getting a great amount of distribution today. The 2-page letter is available online for all to read and continues the positive tone he always seemed to promote. I was naturally drawn to his language relating to people fighting cancer:

To other Canadians who are on journeys to defeat cancer and to live their lives, I say this: please don’t be discouraged that my own journey hasn’t gone as well as I had hoped. You must not lose your own hope. Treatments and therapies have never been better in the face of this disease. You have every reason to be optimistic, determined, and focused on the future. My only other advice is to cherish every moment with those you love at every stage of your journey, as I have done this summer

The letter goes on to talk of Canadian politics, of the youth of the country, and a great final section to all Canadians.

He ends with what I'm sure will become a widely quoted/tweeted/retweeted/posted text:

My friends, love is better than anger. Hope is better than fear. Optimism is better than despair. So let us be loving, hopeful and optimistic. And we’ll change the world.

Indeed!

R.I.P., Jack Layton. Thank you for all you did for Canada and through that for the larger world.

P.S. And as a long-time sci-fi fan, I admittedly have to respect a politician that can be found (circa 1991) wearing a Star Trek uniform! ;-)

[1] Hey, I live in New Hampshire... it's hard NOT to be into politics!

Image credit: mattjiggins on Flickr. It turns out that this was also chosen as the official portrait used on Layton's Wikipedia page.

XKCD's Brilliant - And Sad - Comic About Cancer...

Someone recently pointed this XKCD comic out to me and it is both brilliantly done ... and hits home at the tragedy of where we are at as a society with cancer:

The scary part is exactly what the strip shows... you don't know if or when it may ever return. :-(

And yeah... F___ Cancer!

Care to Donate? I'm Running the NH/VT Komen Race for the Cure on Saturday, July 23rd

Looking for new charitable donations that you can make in 2011? (that are tax-deductible if you are in the USA?) Looking to help support efforts to fund research to find ways to end the scourge of breast cancer that will impact 1 in 8 women in their lives?

If so, I'm running in the New Hampshire / Vermont Susan G. Komen 5K Race for the Cure in 3 days on this Saturday, July 23, 2011, and I'd love your support. Courtesy of the Komen organization I've got a great donation page all ready to go:

http://www.info-komen.org/goto/danyork

My friend Chip Griffin has very nicely kicked off my fundraising with a $100 donation (Thanks, Chip!), but I'd love any donations... $5, $10, $25, $100... or even more ;-)

Last year we walked the race as a family, even our then 1-yr-old who was in a backpack I carried. But last year we didn't have a strong connection to breast cancer other than knowing some people who'd had it.

This year it has definitely hit home with my wife's breast cancer.

This year I'm running the race... and my wife and 9-yr-old daughter are both walking. (We'll be taking turns watching the 2-yr-old.) Lori's fresh off of surgery on July 1, but she's walking 4 miles every day now and ready to do the walk on Saturday.

Through the experience of Lori's cancer, we've met so many other women who have been affected by breast cancer... we've got to figure out what's going on here and find ways to make breast cancer more like just a treatable disease that can be easily cured.

If you are open to making a donation, I'd sure appreciate it. Thanks for the consideration!

P.S. If you're wondering why I'm only now talking about the race... we weren't 100% sure we were going to do the race until last week... it all came down to how well Lori's recovery was doing.