This year’s event on May 4 was dedicated to Pam, who died on April 9. The program included ”Warrior Princess,” a poem I wrote for her. Pam loved the poem, and I will always be grateful to the women of ArtBra KC for including it.

Everyone involved with ArtBra KC fell as hard for Pam as the rest of us did. On their Facebook page, they talked about how spunky she was and how much they loved her and will miss her. If you knew her, you’d know why. This picture of her modeling the Angel/Devil bra is pure Pam. She had the face of a beauty queen and the heart of a lion. She never once let cancer rob her of her joy and zest for life.

There’s so much more I want you to know about my friend, but it’s not time. For now, I want you to know that ArtBra KC is a role model for events the same way Pam is a role model for facing cancer with grace.

I’ve heard about women with metastatic breast cancer who’ve been discouraged from taking part in survivor events. I can’t begin to imagine how horrible and lonely that would feel. Metastatic cancer is already isolating enough. To be told you don’t qualify as a survivor is worse than being told you don’t belong; it’s being told you aren’t alive.

In contrast, the women of ArtBra KC welcomed Pam. They understand that metastatic breast cancer isn’t contagious.They also understand that until cancer claims them, women with metastatic cancer are here. They’re alive. They’re surviving.

Just like the rest of us.

But I am greatly enjoying following along with my friend Marie Ennis-O’Connor at Journeying Beyond Breast Cancer as she tackles this daily assignment. And lo and behold, today’s assignment was to write a haiku about your health focus. Which dovetails perfectly with National Poetry Month in the U.S. I love poetry; always have. I’ve recently recommitted myself to it by applying to graduate school for an MFA so I can work on getting better at it. (I found out on Monday that I was accepted.)

So when Marie encouraged me to jump in and write a haiku, I felt obligated. And when I thought about my health journey, it seems to be on a double track.

First, there’s coming to terms with your body. When you’re young and healthy it is so easy to take your body for granted. First, you learn that something can go wrong. Then you learn that several things can go wrong and that your first foray into health trouble almost certainly won’t be your last. The preferred term in Cancer World is recurrence.  

Second, there’s the urge to reach out. You realize that if you’re afraid of something or wondering about something, then someone else is too.

So, based on those two things, here are my stabs at a couple of health haikus.

Tightrope

Balancing act is
learn how body turns on you
yet not be afraid.

Perspective

Try to be grateful
for life I’m so blessed to have,
and help when I can.

Haiku is a classic 5 syllable/7 syllable/5 syllable structure, which takes discipline but also affords a lot more variety than you might think. (It’s kind of like tweeting!) Feel free to jump in and try it! I’d love to see what you come up with.

Dancing cranes © 2012 Bruce Fox

Friday night my husband Bruce and I did something we never imagined. We crammed ourselves into a 4 x 8 x 5 foot wooden blind and spent the night on the Platte River in central Nebraska with several thousand sandhill cranes for neighbors.

If you aren’t familiar with it, the sandhill crane migration is one of nature’s wonders. Each spring, half a million cranes stop to rest in Nebraska before the long flight north to their Arctic breeding grounds. They spend their days in neighboring cornfields and at dusk, they head for the shallow river.

For Nebraskans, the crane migration is a backdrop to your life the same way Husker football is, and it can be easy to take this miracle for granted. I’ve lived in Nebraska since 1980 and Bruce is a Nebraska native. Like so many people who live here, we had talked about seeing the cranes and never done it, in spite of how this annual spectacle draws people from all over the world.

On Friday night we found out why. Nothing prepares you for the arrival of the cranes, no matter how much you’ve heard or read about it. One minute you’re watching an empty stretch of river and sandbars, wondering if they’ll really show up; the next they’re coming in waves, swirling through the sky and talking the whole time.

And they keep talking, all night long. Bruce said it was like eavesdropping on a New Year’s Eve party, and it was, with nonstop chatter, outbreaks of dancing and the occasional spat. The wildlife biologist who dropped us off said if they get quiet, it means a predator like a coyote is passing through. They did get quiet a couple of times and I wondered if they left. Bruce said the quiet is what woke him up.

High jump © 2012 Bruce Fox

Taking flight © 2012 Bruce Fox

Spring was earlier than usual this year and so were the cranes. One of our guides told us their numbers peaked about two weeks ago and they could have gotten more visitors if they had only known. No one knew except the cranes, who followed the same internal clock they’ve followed for nine million years.

The cranes don’t know about the disagreements over water rights that threaten their habitat. They don’t know about the encroachment of development and power lines. Every year, like magic, they reappear. They follow the rhythms of daylight and moonlight, of feeding and roosting. They trill and leap and bow and dance for joy. And if you’re lucky enough to see them, your heart leaps with them.

Health is Social logo courtesy of Health Is Social

If you’re like many of us, the minute you or someone you care about is diagnosed with something, you go online to do research. You may even reach out to your Facebook friends. You’re far less likely to think, “Hey! Now that I have cancer/diabetes/MS, I better get a Twitter account!” If you can’t understand what people get out of Twitter, this post is for you.

Reason No. 1. Real-time conversations with people who’ve been there. It doesn’t matter whether you’re dealing with cancer, diabetes or lupus; you’ll find others who have been through it. Don’t be surprised if they happen to be in Canada, Dubai, Ireland or Yangon. (These are all examples from my experience, by the way.) It’s so comforting to know you’re not alone, and so awe-inspiring to realize that experience connects us no matter where we are on this blue marble.

Reason No 2. There are some incredible doctors and nurses sharing their time and talents on Twitter. They’re answering questions and sharing insights, including links to their own blog posts and interesting healthcare articles from other sources.

Patients or civilians or whatever you call the rest of us do that too, but I want you to know the pros are out there and they want to help. I will never forget how nervous I was when I first got on Twitter. The first person who started following me aside from people I knew offline, and who made me feel welcome in this electronic cocktail party, was a doctor. I will always be grateful to him. 

While no one will (or should) give you specific medical advice, any question you have about what something means or how it works is likely to find an answer. I blundered into a colon cancer discussion yesterday over my lunch hour and decided to jump in, since colon cancer took my mom out. I had a question about something I’d heard about certain people needing more colonoscopy prep (lucky them!), and a doctor answered it within seconds.

Reason No. 3. Tweetchats, which bring all these peers and pros together in one place. If you aren’t familiar with them, tweetchats are scheduled discussions on a variety of topics, such as the colon cancer one I found. People use hashtags(#) to identify the topic or group. I often take part in the #bcsm (breast cancer social media) tweetchat held on Mondays at 9 p.m. Eastern time, moderated by Jody Schoger (@jodyms) and Alicia Stales (@stales) with support from Deanna Attai (@DrAttai), a breast surgeon. The group has tackled parenting while under treatment, how to tell people at work, and how to cope with the fear of recurrence.

Three other excellent tweetchats are #hcsm (healthcare communications in social media), moderated by Dana Lewis (@danamlewis), and #MDchat and #RNchat, both moderated by Phil Baumann (@PhilBaumann). Phil is a registered nurse and business consultant. He also blogs at Health Is Social (@HealthisSocial) and was kind enough to let me use its logo for this post. There are too many other health-related tweetchats to mention here. Symplur.com has a comprehensive healthcare tweetchat calendar.

Reason 4. Breaking health news. My husband has commented on how often we see something in the Wall Street Journal before we see it on broadcast news or our local paper. Now I often see things on Twitter before I see them in the WSJ or any news outlet. I can’t tell you how many healthcare items I’ve seen on Twitter first in the past year or so.

Those reasons are immediately top of mind for me. If you have more reasons Twitter can be a good health resource, please share them. And if you’ve been thinking of getting on Twitter, just do it. Don’t let it intimidate you. It’s not just for celebrities and you can make some real connections.  Happy tweeting! @jackiefox12

DSM-5 has been in the news recently because of the way it plans to reclassify grief.  Previous versions of the manual have excluded grief as a depressive condition. Meaning if you went to your doctor and reported feelings of deep sadness and loss, insomnia, inability to concentrate or loss of appetite that lasted longer than two weeks, your doctor would find out if you had lost someone close to you. 

Sure, your doctor might have prescribed something to help you sleep. My dad’s doctor did for him after my mom died. But by making grief an extenuating circumstance in diagnostic terms, the manual signified grief as a normal part of life. No more, if DSM-5 proceeds without further edits. You could very well be diagnosed as depressed for having a completely normal response to a loss, and prescribed antidepressants when the best healing agent is simply time.

If there’s one thing I’ve learned about grief, it’s that it’s not linear. It won’t be resolved in two or three or six months, much less two weeks. The respected medical journal The Lancet said it beautifully. “Building a life without the loved person who died cannot be expected to be quick, easy, or straightforward. Life cannot, nor should not, continue as normal. In a sense, a new life has to be created, and lived with.”

I trust doctors will continue to use their common sense, no matter what the final DSM-5 looks like. But as Allen Frances, M.D., wrote in Psychology Today, “If DSM-5  remains completely tone deaf and intransigent, it simply will not be used.”

Grief is a part of life, like love or joy or pain. It is not a disorder, and treating it as though it were is a big mistake.

I didn’t reach out to many people offline either. My wonderful surgeon asked how I was when I popped in to invite him to a wine event fundraiser three months ago. And if there’s one thing I’ve learned, it’s when a doctor asks how you’re doing, it isn’t just small talk. He or she really wants to know. But online and off, I kept my fears largely to myself.

What happened was my platelets were heading in the wrong direction in September and December, and as much as my oncologist and family doctor told me not to worry, I couldn’t completely banish it from my head. I have often said that telling us how we should feel about our diagnosis is like telling us we should be six feet tall or have brown eyes. The same thing can apply to worrying. Some of us are just wired that way, although there are things we can do to ease it.

I did my best to stay offline and not let my cyberchondriac tendencies get the best of me, but I didn’t like it one bit that my oncologist bumped me up from my regular six-month checkup to four months. I didn’t like it that I wasn’t acing my blood work, and I hated it that there was nothing I could do about it.

Somewhere in the middle of all this stewing, I realized I was handling this the same way I handled my DCIS diagnosis four years ago. I told very few people while my head was churning and I was trying to figure out what to do.

I wasn’t on social media then, but now I realize it probably wouldn’t have made a difference. As open as I like to think I am, I’m still private in a lot of ways. I still have trouble admitting when I’m scared. I’m more comfortable talking about certain things when they’re in the rear-view mirror. I say supportive things to others dealing with their particular brand of medical misery, and I mean them, but I have one hell of a time taking my own advice.

I’m not sure what point I’m even trying to make with this, other than to let you know that the way we act online isn’t so different from the way we act offline. And don’t be surprised if you also find yourself reverting to form when faced with another challenge, or as in my case, a what-if scenario.

There’s nothing wrong with me, by the way. My platelets are back to normal. I’m back to checkups every six months. I’ll have to find something else to worry about for now.

I was curious about Australian food.

She held Komen’s feet to the fire with her laser intelligence and professional accounting skills. Her brilliant ”Komen by the Numbers” post, now two years old and the first in a series, is still being shared and will be for a long time.

I gave Komen the benefit of the doubt for far too long. Rachel did more than anyone to open my eyes to Komen as a brand.

She invited me to be her friend on Facebook. I don’t do friends on FB. But such is Rachel’s power that I couldn’t say no. When I told her that in a message, she wrote “Hahahaha. . I’m so honored to have made the cut Jacks!” (Jacks was her nickname for me. She told me Aussies are big on nicknames. I never got over being thrilled when she called me that.)

Her personal Facebook page is down now but I can’t bring myself to unfriend her, just as we can’t bring ourselves to remove @ccchronicles from our group #FFs and sherpa hugs on Twitter. We’re not ready.

I worried when her tweets slowed down and was thrilled when she was able to join the #bcsm tweetchats in spite of massive fatigue and loss of her writing/typing hand. She would sign off, “Good night, John Boy.”

I thought of her when the engineering firm I work for hired a new Australian operations director, and I posted a picture of the Australian flag on our company Facebook page.

I will think of her wickedly funny tweets whenever I’m in my oncologist’s waiting room. I tweeted in her honor on my Wednesday visit, fighting the urge to laugh at the valentines parked on the IV stands and the urge to cry because I can’t believe she is really gone.

I will think of her whenever I listen to Angus and Julia Stone. They’re an Aussie brother and sister duo who make great acoustic music. I never got a chance to ask her if she liked their music.

I wish I had seen her post about the vintage red Karmann Gia. I would have told her about the red Camaro Z28 I owned for awhile in my early 40s. I hope she’s zipping around Heaven in that red car right now.

I will think of her whenever I make the pesto recipe she shared.

I will think of her whenever I see something ridiculous and pink.

Her family and friends are celebrating her life today in New Jersey–28 years to the day after we laid my father-in-law to rest.

Rachel was larger than life. And now she’s larger than death.

I’m like many others in the blogosphere–although I was beginning to have serious doubts, the one thing that kept me hanging on was Komen’s support of low-income women. No more. They’ve done away with any pretense of caring about anything except their brand, and now, their politics. They will sue the smallest event, shill carcinogenic products, and create a rule specifically designed around reproductive politics, hurting the very people they once purported to help. Because make no mistake, women with money don’t go to Planned Parenthood. Women of means will always have a choice. It’s the poor who have their choices taken away. Komen’s actions are as despicable as they are arrogant.

It’s time to hit Komen where it hurts–in their wallet. They’ve proven time and again they worship the Almighty Dollar. (They were honest enough to remove “for the Cure” from their tagline. If they were completely honest, they’d change their pink ribbon to green.) I’m never giving another dime to Komen. I’m far from a big contributor. I’m good for about a hundred bucks a year, supporting friends in the Race for The Cure in Omaha and Kansas City. But multiply me by a million people and you’re starting to talk real money.

Donate to Planned Parenthood so they can continue offering screenings to low-income women. Donate to Metavivor (which goes to metastatic breast cancer research). Donate to (and join) the Army of Women. Donate to your local church that provides rides to chemotherapy patients. These organizations remember why they exist, and actually help people. Money talks; it’s time for us to start shouting.

 Patient empowerment is all the rage lately. While I distrust the way the “e” word sometimes verges on ideology, I’m all for learning what’s happening when we get that front row seat to medicine thanks to cancer or another big diagnosis.

But how best to learn if you tend to be medically squeamish? My previous patient experience was limited to an annual visit, with a handful of garden-variety illnesses and the inevitable screening tests required once you hit your 40s and 50s. I’ve never had a problem with those tests, or with needles, but once I learned my breasts were going to be the focus of a cancer adventure I felt a bit queasy.

The thing is, I can’t even stand nipple rings. Back when my husband Bruce and I used to take his Harley to the big bike rally in Sturgis, S.D., I averted my eyes a lot. I found myself doing the same thing now as I loaded up on breast cancer books. How do those DCIS cells act? Sure. An illustration of a nipple floating off into space during a mastectomy? Not so much.

I wanted to know what to expect without getting too much detail, if that makes any sense. So while I learned enough to know I wanted implants instead of tissue replacement surgery for reconstruction, I didn’t read about surgery details, and I couldn’t look at before and after reconstruction photos available online.

I had gone through the mastectomy and first-stage reconstruction before I became curious about things like how my surgeon was able to balance tissue removal and skin preservation during the mastectomy, or how my plastic surgeon was able to recreate a nipple.

Believe it or not, I actually watched him do it, since it only required local anesthetic. If you had asked me five years ago if I wanted to watch myself getting a nipple built, I probably would have yakked on your shoes. But this was my fifth surgery in nine months, so I had gotten used to it. And I’m really glad I watched because it was fascinating.

But that’s me, and it happened over time. You may want every last detail, or you may prefer letting the experience wash over you. And there’s nothing wrong with that. I would recommend learning enough to be able to make an informed treatment choice, and giving yourself enough time to make that choice.  Whether you ever learn what they do with those scalpels or watch them do it is totally up to you.

For the record, nipple rings still gross me out.

DCIS is so new on the scene that it’s not well understood yet, and doctors would rather see their patients be safe than sorry when it comes to treatment. I went the safe route when I opted for a mastectomy over radiation (trust me, it wasn’t an easy choice, at least for me). So the obvious question is, what if I could have been spared either one? What if mine had been slower moving?

I’ll spare you the details of my decision-making process (they’re in my book, ahem) but I didn’t believe my DCIS was going to stay put, then or now. I realize there’s such a thing as cognitive dissonance (what most of us call sour grapes) but I don’t think that’s the case.

And besides, that’s not the point. Whether my belief system can handle this new information or not, we’re going to see a lot of this with breast cancer or any cancer. We also learned recently that perhaps they don’t need to remove so many lymph nodes to get a good feel for whether cancer has spread. I’m sure women with lymphedema are less than delighted by that news. Such is life. Such is medical progress. Imagine how we’d all feel if we had been operated on before they discovered anesthesia.

The point I’m trying to make is that cancer is no place for “Coulda, woulda, shoulda.” We do the best we can with the information we have at the time. Crystal balls are not retroactive.

Thinking about this also got me thinking about the “three words” concept for the start of the new year. A lot of people, including me, blogged about three words to focus on instead of making resolutions. I’d like to suggest that we also consider three words to banish from our thinking in 2012 and these three are at the top of my list. Not just for how I handled my cancer, but how I live my life.

Cancer can make you wonder what you want to do with this life you’re so lucky to have. Getting older does the same thing. 40 is called the old age of youth and 50 the youth of old age. I crossed over into the youth of old age just over six years ago. I do not intend to get to the end of my life thinking “Coulda, woulda, shoulda.” And I hope you don’t either.