Rare Survivor

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Cancer — a shocking diagnosis, triggering fear that strikes to the bone. Even in best-case scenarios, as those affected know, looking ahead tests every granule of strength.

Until recently I knew precious little about a form of cancer called mesotheliomaLung cancer brings to mind smokers, but mesothelioma goes beyond smoking, or exposure to second-hand smoking, the risk factor being exposure to asbestos.

The Patient

Last week I received an email from someone I’ve never met, Heather Von St. James, a rare mesothelioma survivor, cancer advocate, and Huffington Post blogger, among other sites. She asked if I would help share her story, and couple of email exchanges later brought us here.

If you goggle her name, Heather’s story is sure to overwhelm.

At the age of 36, soon after the birth of her daughter, Heather fell ill. She was losing weight rapidly, had no appetite, and felt like a truck had parked itself on my chest.

After a CT scan and a myriad of tests, she was diagnosed with malignant pleural mesothelioma. With no intervention, she had 15 months to live. But she couldn’t do that; she had a daughter to raise.

The Choice

When told about a unique surgery performed in Boston (over 1000 miles away) called extrapleural pneumonectomy, Heather and husband Cameron tidied up their affairs and got on a plane.

The procedure, developed by Dr. David Sugarbaker, involved removing the left, cancer-ridden lung, left half of the diaphragm, and lining of the heart. The sixth rib was also removed for access to the chest. Surgical gore-tex replaced the diaphragm and the lining of the heart. A heated chemotherapy solution was pumped into the chest and washed around for an hour, then pumped back out.

The treatment involving chemotherapy and radiation was something to endure, and the recovery took about a year. 

Rare Survivor & Advocate

I imagine nothing makes one an advocate for research and awareness more than having survived not only the disease, but the doubt and poking and prodding and pain.

To help those finding themselves in similar situations, Heather spends time with newly diagnosed patients during biannual visits to Boston for checkups. She works as conference speaker and research advocate, sharing her story any place she is received.

And she gets to see her daughter grow up.

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How was she exposed to this deadly substance, you might ask? In her own words: My cancer was caused by wearing my dad’s work jacket that was covered in asbestos fibers to do outside chores when I was little.

But exposure is wide and varied. The substance, not banned in the U.S., was used in the ‘70s and is still found in buildings and products today. Since symptoms are similar to other lung diseases, the goal is to speak up, to make sure people know how to keep their lungs safe, as Heather said.

Knowledge is Power

Some facts to be aware of: 1. If possible, avoid exposure to toxic substance; 2. Don’t smoke (exposed smokers are at higher risk);  3. do your part in fighting pollution (save energy, go green, be mindful of products containing asbestos: appliances, garden items, toys, as some toys made overseas contain asbestos).

Here’s to hoping that  similar heart-wrenching stories will have the same happy ending, and those sitting in a doctor’s office right now, crying in shock, will soon be declared survivors.

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Many thanks to Heather Von St. James for reaching out and sharing her story. She’s very passionate about raising awareness, replies to emails faster than most people I know, and can be found on Facebook and Twitter.

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Photos courtesy: Heather Von St. James

Being Human Is Hard and Constant Work

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Blogging is another form of therapy.  I’ve no clue who, if anyone, said that, but it sounds good. How did I ever make it all those years without running something by you, dear blogging friend?

So, here is the deal.

How often have you wanted to do the right thing but were unable to?

Sure, there are external forces preventing this:  1.  The traffic jam last week when the highway patrol closed part of the freeway to get a biker off safely.   2.  Getting home only to realize I forgot to buy a friend’s birthday gift, and no way was I going in that mayhem again.  3.  Calling my husband to see if he’d stop, but the call went to voice-mail.  He loves blasting the music in his car, tuning out the world.  I should have known.

So, that little problem — my husband enjoying his music at levels that would blow my eardrums to smithereens — was enough to infuriate me. The biker on the freeway, the traffic jam, my forgetting to buy the gift, all became his fault.  If only he’d lowered the volume, he would have heard the phone, stopped for the gift, saved me some time. And sanity. 

Yes, the external forces push us to the brink, but I didn’t have to blow a fuse.  Should have resisted the impulse.  I didn’t have to let the inner forces act and prevent me from being my sweet self.

When M.J. Joachim — a blogger many of you probably know — sent an invitation to join Effectively Human, “a community for people striving to make the world a better place by being effectively human in a variety of ways,” I though: wow, how timely.  Even better, one of the categories deals with family and relationships. Great inspiration for this post.

Being human — which many times is being good to others — is not always easy when the outside forces influence the inner good. Any lesson, any reminder to get over myself and look at what really matters, is appreciated.  Thanks, M.J.

~~~ How do you fight the outside, negative forces?

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Photo: fullspectrum.com

Growing Up Hard

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One morning, my son asked if Max, a school friend, can come hang out because he’s moving to Kansas and they won’t see each other again. I’ve heard Max’s name before, but never met him. I said, “Have his mom contact me and we’ll set something up since Grandma is here, watching.”

When I got home that evening, Max was playing with the neighborhood kids. My son had shown him our house on their walk home from school, and a few hours later Max simply showed up to play.

Something didn’t sit right with me about the whole story. I know the parents of all my son’s friends, we text prior to our kids getting together, parents drop off their kid at my house, and we have a plan as to the pick-up hour.  In short, we know the parents and they know us. Best way to understand your kid’s friends — his early life entourage — is to know the families. But I knew nothing about Max.   

When I asked where he lived, Max described an apartment complex twenty minutes away. And no, he didn’t think his mom knew where he was. She didn’t feel well; was asleep when he left home.

It was getting dark by now, kids were going inside, and Max was ready to say goodbye and leave. I told him to use the phone, call his mom and have her pick him up. He politely declined, and said he’ll walk.

I couldn’t, in good conscience, let him walk alone in the dark, so Max, my son and I piled into the car and drove him home. He’d mentioned his mom was sick, so I asked if she had a cold. “No,” he said, “she went to a party last night and got drunk.”

My heart broke for this soft-spoken boy with eyes full of something beyond my grasp — hope, perhaps. Sorrow. He’d walked twenty minutes to be with friends — maybe to escape the mess at home?

“What about your father?” I asked. There is no stifling a mother’s curiosity, and at this point my need to know had grown in bounds. Max said only that his father left. It took serious self-discipline not to meet his eyes in the rear-view mirror, where I’d likely see the sadness heard in his voice. Later, I learned the father had left the family and soon after committed suicide. Drugs had been involved.

I wanted to do something for Max — pull him from under the weight of this sorrow he lived with, address the sadness in his voice, shake up the mother who was too hungover to know where he was, erase a past he carried bravely on his young shoulders. I didn’t detect abuse, so I didn’t investigate further, and consoled myself with the belief he’d join an extended family in Kansas.

Max had since moved away, and all I can do is hope he’d found normalcy — a healthy routine, nurturing love. A grandmother, aunt, someone embracing him. Watching after him.

When the dust settled, I had a long conversation with my son about inviting friends over without permission. He learned a quick lesson from Max’s story — an unsupervised child could be susceptible to bad behavior, and as a result influence his friends.

Still, today I’m heartbroken for the ten-year old with eyes full of hope, in search of a friend. I pray he will be strong enough to reach adulthood intact, and maybe, just maybe, this phase of his life will make him a stronger man.

—– Photo: www.parentdish.co.uk

That Time Again, and Are You On Ello?

A week from today we vote in midterm elections, unless you’ve participated in early voting.

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Not me.  I like going to the polling place, signing the register, spending time in the booth — just me and my ballot. Getting the “I Voted” sticker.

As mentioned on this blog countless times, I grew up in a communist country. I was too young to vote, then fed up, but I remember waiting in line with my mom so she can ‘vote’ as the Party men watched closely. When the results came in, what do you know? The same guy had been reelected with 100% of the vote.

So, I don’t take this right for granted, one that’s denied or diminished in many parts of the world. Remember what JFK said: “Things don’t happen, they are made to happen.”

Election and social media go hand in hand, agreed? And we have enough social-media sites to dedicate several lifetimes to, but in case you haven’t heard, I’m here to tell you there’s one more — ELLO.

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Ello is in beta, meaning they’re still working on adding features, etc., and it promises to remain ad-free, not follow everything we do then record into data for advertisers. If that’s the case, I’m already in love.

It is by invitation only, and the wonderful blogger Veronica Sicoe was kind enough to send me one such invite.

Why jump on board? I don’t know. Then again, why not at the very least reserve your name before the BIG onslaught. Happy to send out the few invites I have available, should you wish to join.  

Just spreading the love. :)

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Photos courtesy: wongtunes.com; popfi.com