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…

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

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.

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.

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!