It's A Diagnosis -- but Is It A Disease?

Cancer is a huge diagnosis. Huge in several ways. 

Of course there’s the overwhelming impact the diagnosis has on a person newly diagnosed, and on his or her family and close friends. 

But also huge in terms of the range of medical conditions cancer includes. To say someone has 'cancer' is a little like saying someone has an 'infectious disease' or a 'mental illness'. It can mean so many, many different things. Even to say a woman has breast cancer is still to speak very broadly. 

Generally the details of another's diagnosis becomes ... mmm, dare I say 'boring'? At least confusing and hard to follow. That is, unless you are comparing experiences or are very personally involved in understanding the other person's treatment plan. 

So, if I start to bore or confuse you, feel free to skim and skip. The last two or three paragraphs tell where I am today. 

My breast cancer diagnosis is 'ductile carcinoma in situ' or DCIS. DCIS is sort of 'the sniffles' of the cancer world. Cancer patients and survivors make up the proverbial 'big tent' and nevertheless post-treatment DCIS patients occasionally wonder if they legitimately belong to the world of cancer survivors. 

Like 'the sniffles,' it's possible to imagine DCIS could go untreated and the individual’s body would deal with it. And the medical professionals estimate between 50% and 66% of DCIS incidents would cause the patient no decline in health, let alone threaten life, if simply ignored. 

Unfortunately, the remaining cases go on to become full-blown, life-threatening invasive cancers. At this point, we know of no way to distinguish the sniffles that will go away (or stabilize and matter not) from the beginning of life-altering, even life-threatening pneumonia or tuberculosis, as it were. 

Most patients and most doctors dealing with breast cancers simply have no tolerance for waiting around to see which is which. The bad guys can sometimes move quickly, sometimes move sneakily and aren't anything you want to mess around with. 

So treatment is recommended for all diagnosed cases of DCIS. And the treatments are the same treatments generally used to treat invasive breast cancers -- lumpectomy or mastectomy with or without follow-up radiation. 

My DCIS was identified by a biopsy; the biopsy in turn was recommended based on results of a routine annual mammogram. Obviously I've been getting annual mammograms precisely so breast cancer wouldn't sneak up on me; if I got it, I wanted to catch it and treat it right away. 

But I guess I'd always assumed early detection would also mean less invasive treatment options. So I was in utter shock when the diagnosing radiologist included a double mastectomy in the range of treatments I might be facing. 

In one weekend, I'd gone from having a near-microscopic area of calcification in one breast to a conversation about removing both breasts entirely! 

And it doesn't stop with a conversation, of course. The conversation lead to consultations. Then more imaging: a MRI of both breasts first; then later enlarged images of the other breast. Now, recommendations for further biopsies. 

And the additional biopsies will be done. After which, I expect I will get a treatment recommendation. If I'm lucky, the treatment will be along the lines of a lumpectomy or two lumpectomies. That seems currently to be the most likely scenario. 

But I'm trying to prepare to handle worse news. Because the most likely scenario in early June was a biopsy reading of 'benign.' 

Likely scenarios are nice -- but they aren't definitive. 

And while I wait and prepare, I'm also trying to remember what my yoga instructor tells me so often:  "Breathe!"

Life is a vocabulary builder.

'Lesion' is a good word to know. If you first encounter it in reference to a cut or boil or pimple, you might think it refers to breaks in the skin. That's certainly what I used to think.

Then I'd hear doctors and nurses use it when speaking of things happening inside the body. So I knew I was a little off there.

Finally got around to looking it up recently. Whatdaya know! A lesion is pretty much any abnormality in living tissue.

The Call -- One We All Hope We Won't Get

On Monday afternoon, the 11th of June, a radiologist phoned me from Northwestern Memorial Hospital. Dr. Whuen [not her real name], along with a surgeon and one or two assistants, had performed a biopsy on my left breast the previous Friday morning. I was expecting her call. I was also expecting good news.

Perhaps bigger alarms would have sounded at her first words -- "Is this a good time to talk." -- if my family wasn't inclined to start perfectly normal phone conversations just that way. I am sure I said something like "Of course" or "Couldn't be better."

Her next words, however, brought everything to a halt while I got my husband on the phone with me: "Your biopsy did show the presence of cancer."

This outcome was against the strong odds I been trusting.

Telling her that I was making notes but was struggling and might need to have her repeat things, we launched into one of the more distressing conversations of my life.

By the time we got off the phone, she'd made it very clear that, as far as she was concerned, I would be having breast surgery. In fact, some of the possible outcomes she covered had me believing it was time to get my affairs in order.

At the risk of spoiling the suspense – or actually, because suspense is uncalled for and unfair, I will jump ahead here and tell you that within 24 hours, I understood clearly that my life is not in danger. Nevertheless, it’s been a bit rocky around here lately.

Soon it will be a month since I got my diagnosis. It's been a hard month and not just because of cancer -- or not just because of my cancer.

But I've had a lot to study, much to think about. I've learned quite a bit about cancer, though mostly about breast cancer. And I've discovered some new things about myself.

Some of these things I believe are worth sharing.

So, despite some subtle signals from a dear friend or two that they'd like me to stop using the C word already, I'm going to be talking and I'm going to be listening. If you can listen or you'd like to talk, join me.

Is It Time to Rename the Blog?

In 2008, when I set up this blog, I was following Cindy Fey's blog called 'We All Fall Down.' [Actually, I still follow it and enjoy it: We All Fall Down.]  I liked the way the blog title referenced a childhood game and that inspired my choice of 'Tiddlywinks and Pick-up Sticks.'

I liked the drive, the control or lack thereof, the joy and the muddled confusion suggested by those games.

Most of Cindy Fey's entries reflect the pleasures of family life. But her title is clearly allusive enough to encompass the difficulties of life as well. As she does.

Sometimes I think 'Tiddlywinks and Pick-up Sticks' sounds too playful for the more serious stuff.  Like last year when I was covering the tornado in Joplin and then the recovery efforts that followed; I wondered if I needed a more serious sounding name. But maybe not.

Maybe not.

I think we are about to enter into some pretty heavy going. So if you come here (if I or someone sends you here) to read about cancer, say, or depression or the loss of those dear to us, remember that pick-up sticks present a pile of stuff you have to pick through and sort out and deal with, stick by stick by stick.

And there will always be light and playful moments -- not to mention some flubs and black humor moments that I hope will leave you laughing.

So, no, I think I'll stay with the name I chose in '08, when I imagined I'd only be sharing child's play -- even if that was a bit off the mark.