Speaking of Illness -- Information and Secrets

One of my friends on Facebook asked yesterday if I found Facebook helpful as I navigated the ups and downs of my recent and current trip through the world of medical events. The quick answer is an obvious "Yes; the opportunity to share what I've been going through and the support friends have offered were big helps."

But the whole truth is more complicated.  When my first biopsy was scheduled, I didn’t think I would talk about it on Facebook.  Then one day, while trusting the long odds for a favorable outcome, I did mention the biopsy, more or less in passing.
 

When I first got the diagnosis on June 11, however, I didn't immediately mention it on Facebook.  There were a number of people I needed to talk to privately first and I couldn't 'delegate' the spread of news to random chance.  For a couple of weeks, I regretted having mentioned the biopsy at all.

Nevertheless, I knew pretty quickly I needed to share this experience and I wasn't going to keep quiet.  I particularly wanted to hear the stories of others who had had even somewhat similar experiences.  In order to connect, I wanted the use social media and cyber-media.

My decision was supported by the early knowledge that my diagnosis was not life-threatening.  Had I had doubts about my ultimately survival, I would have had a much more difficult choice to make, because talking publicly means you cannot keep secrets even from those who might wish to be protected – and whom you’d otherwise be willing to protect -- from the knowledge.

If I was ‘going public,’ I needed to tell my elderly mother that I had a cancer diagnosis.  I did not want to create a situation in which a dozen family members had to be drawn into a circle of secrecy and then perhaps reminded from time to time that ‘Mom/Gram doesn’t know.’  Luckily, I could tell her while providing great reassurance that my well-being was secure.  Mom does not use social media, so she could and would be spared much detail.  And my mother and I don’t live close to each other (she’s in Joplin, MO and I’m near Chicago), so she didn’t need a lot of detail – appointments or evolving treatment developments were beyond her ‘need to know.’  But I felt it was necessary to cover the general news with her if I was going to speak of my illness publicly.

I also needed to share the information with my equally elderly father-in-law and mother-in-law; FIL and MIL live a couple of miles from Lee and me.  We interact face-to-face frequently.  I could just imagine constructing repeated explanations for schedule conflicts and unavailability.  Better, I thought, to simply tell the truth from the beginning.  Certainly this was the better decision for me and I knowingly but without much sense of conflict, put my needs first.  Had my news and my situation been more frightening, perhaps I would have been more conflicted.

Interestingly, my decision did not receive unqualified support.  Some expressions of resentment reached me, second-hand.  That part of my experience opens up into some very complex questions about information sharing decisions and secret creating behaviors.  The best decision probably varies from situation to situation and person to person.  But I feel, for me in my situation, I made the best decision.

I feel fortunate that I have been able to speak openly.  I have received immeasurable support from both expected and unpredictable sources.  The general support has been treasured and delightful.  But I believe the very best outcome of my decision was finding someone within my own existing circle of friends who had been through almost exactly the same experience I am going through; she has been able to alert me most effectively at each stage concerning what I might expect as I move forward.

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!"

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.