Don't Ask Dr. Google

I really do try not to go online when I have a hangnail. You always see the worst thing. And it's scary. All of a sudden you find out you have mad cow disease only really it was just last night's pizza that someone didn't put in the fridge.

So, when my lip got split and crusty in December I didn't ask Dr. Google. I live in Michigan. It's cold. My whole body dries out and gets chapped. It's what happens here.

I asked my pulmonoloigist in February -- "What about my lip?" "It's cracked," he replied. "Vaseline."

So, it was cracked. It peeled. In April I had my gall bladder attack and was given two weeks of antibiotics from the ER. It cleared up! Yay! Must have been a little staph thing. All gone.

For three weeks. Then it was back. I thought, I'll ask the dentist at my May appointment. But first, I asked Dr. Google. Chelitis seemed to be the answer. The dentist wasn't so sure but there are loads of versions of chelitis. "Ask your primary," says he.

So, I went to the PA. "I think I have chelitis," I said, giving him the wiki printout with all the photos. He gave me a steroid cream. Use it for two, maybe three weeks. I did. It cleared up. For a few weeks.

You know where this is going. In August when I went to the read doc for my physical I said "It's time I went to a dermatologist," )he immediately agreed) which I did last week. Yup. Squamous cell carcinoma -- skin cancer of the lip, thanks to the biopsy.

Now, this part of the story is more or less a good news story. It's fine. It hadn't metastasized, it's treatable, it won't kill you. It probably was due to those years of fun in the sun with only Coppertone oil and only sunscreen (those ages between 16 and 30...) I'll start a course of radiation treatment in a week or so. All will be well. (And if I finish before Halloween, I'll have a great mask!)

A little more disconcerting is a funky thyroid ultrasound. The ENT doc suggested biopsy now or wait nine months and do another ultrasound. I'll let him know in a couple of weeks when I go back but right now I'm inclined to want to just deal with one thing at a time. Still, I'll talk with my regular guy and get his take.

It should go without saying, but I'll say it. If you have something weird, a) don't ask Dr. Google, ask a real doctor and b) do it in a reasonably timely fashion. Nine months is a long time to dally. I didn't think I was dallying, I have no problem with what anyone else told me. But I should have moved sooner and the fact that I was so darned lucky was due in no part to me. Just good luck. And c) don't forget to put sunscreen on your lips!

Life is good. My face looks a little weird but I'll take it. Trust me -- beats the alternative.

I have another essay on this subject that is a little more personal (but not TMI) called Sun Spots and Sunsets at Modern Creative Life. Check it out if you're so inclined! (The theme of this month's issue is light and shadow and there are loads of good essays there -- well worth subscribing to!)

Hope for the Emperor of All Maladies

One word scares the hell out of me. Cancer. It scares a lot of us. Here are just a few people who have left this world because of this dreaded disease.

You've heard about my mom in lots of posts, and Mary Jane, Patricia, my grandmother and most recently, V.J., the Whimsical Whittler.

Since I wrote that post, dear Gretel, in the upper right corner, has been added to that list. I can't really write about that yet. And of course, last week marked the anniversary of blogger Diana's passing.

You'll also see my aunt, Grace, and my high school friend Gail here. All gone. And they aren't the only ones. Parents, siblings, children and spouses of good friends, college pals, one-time colleagues and more. I might not have good photos of them or my "grid" may be too small -- but they all matter and live in my heart.

But this picture tells a different story.

You might know some of them and you may or may not know their stories. But these are the men and women who have either kicked cancer in the butt, are fighting a very hard fight to kick it or courageously deal with whatever lies ahead. They are all ages. Their cancers have ranged from skin and thyroid to breast and eye, and lots of others. Their stories are all different. They are doctors and artists, business professionals and teachers, hair stylists and environmentalists. But today, at the moment I hit publish on this post, they are here.

They have had tough fights, each and every one of them and some are still fighting. For some, cancer has been something from their past -- they are five, 10, 15, 20 years past their last treatment. So far, fantastic.

These men and women have stories that could change tomorrow, next month, next year, years from now. But then really, don't we all? With my family history, I never know what the next appointment with the doc will bring or what they might spot on the next mammogram. And aside from that, there's always the proverbial bus that can change any of our lives at any moment.

It's this second picture I do my best to hold onto when I hear of cancer hitting the life of someone who matters to me. My mother died in 1977 from breast and ovarian cancer. I was 25. She was sick for three years.

Times Have Changed

Things have changed a lot in those 35-plus years since then. Detection methods have increased and research is encouraging. Technology is better, surgical methods are different, medications -- still rugged to tolerate -- have improved efficiency and results. Consequently, life expectancy has increased.

And so has quality of life. Yes, treatment can be brutal. But because so many treatments are more effective, life after can be improved.

That second photo gives me hope, not only because there are so many faces there -- but that they are just a few of the faces I know who are strong, courageous, tough, determined men and women who said, "I'll fight." And for many of them, they made that statement long ago.

They are amazingly inspirational to me, not only in their cancer fight but because of how that fight translates to any challenging disease or malady. They are my heroes. And so, too, are those who care for them -- the family members, nurses, doctors, neighbors and friends.

When you love and care for someone, supporting and taking care of them is just what you do. It can come at a cost. Stress, exhaustion, the constant struggle of finding the best information, the best care and treatment takes an enormous amount of energy. And the rest of the world doesn't stop for it. One still has bills to pay, a job or children to attend to, a house to clean. If you've ever been the caregiver for any reason, you know that.

Some of my cancer friends aren't pictured here. Why? They simply don't talk about it. I have one friend who told very few people of her diagnosis. She had a surgery and it was successful and that was that. The world needn't know.

The Ultimate Success Story

And then there is Eulah. Eulah was my next door lake neighbor from the time I was a teenager. The "hostess with the mostest," huge, big heart and a wonderful person. And no, she's not here with us now. She died when she was 101. Oh, and her cancer was some 40 or 50 years before. Talk about success story.

I hate this disease and I always will. And I pray for a cure and even more efficient treatment and detection. Understanding this, too, is important for we all have a role to play.

The TV Series

Recently I've been working with the public television station I retired from to assist with community engagement for a new series called "Cancer: The Emperor of All Maladies." Ken Burns, whose mom died when he was 11, is the executive producer and it is based on the book by Pulitzer Prize-winning author, Dr. Siddhartha Mukherjee and directed by Barak Goodman, who has a slew of awards to his credit.

The series will air on public television stations nationwide on March 30, 31 and April 1. But there is a wonderful website HERE with inspiring stories and much more about the film. I encourage you to visit if you have a curiosity or experience with this disease or simply want to know more.

The Story Wall

And one other thing -- there is a terrific "Share-Your-Story" wall on the site. The stories may well help other people deal with what you may have in the past, either as a cancer patient or survivor, physician, caregiver, family member or friend.

I urge you to share your story there, too. It's easy to do (if you're a blogger and used to a blog set-up, it's a piece of cake!). There is a spot that says "station code." If you watch public TV on WKAR in mid-Michigan, I hope you'll share WKAR as your station code, or your local PBS station if in another area.

My Mother's Prognosis Is Not My Prognosis

My friend Patricia died from cancer about 15 years ago and she, too, was the daughter of a mother who died from cancer. When she got sick, she kept saying "Our mothers' prognosis doesn't have to be our prognosis" and she fought for many years, living a full life in the interim, marrying and having a lovely family that was her world.

Things have changed since then. They'll keep changing. I haven't had that diagnosis and I hope I never do. But should that day come, I will hold Patricia's words close to my heart. Someday we can only hope there will be a cure. Till then, knowing and understanding, helping others, asking for help if we need it, is the best we can do.

New on "Chopsticks and String" and a Winner!

I've just posted my thoughts about a wonderful book on Chopsticks and String.

It’s surprisingly difficult to write a book “review” when the book read is so marvelous, moving and illuminating as “Kitchen Table Wisdom” by Rachel Naomi Remen, M.D. is.

“Everybody is a story,” Remen writes in the introduction. “When I was a child, people sat around kitchen tables and told their stories…Sitting around the table telling stories is not just a way of passing time. It is the way the wisdom gets passed along.”

Remen is a remarkable woman -- a physician of powerful compassion and soul; a wounded healer (she has had Crohn's disease since she was a youth), and a fabulous writer. It's one of the few books I've ever read with a packet of post-it notes tucked into the back cover. And I used a lot of them.

If you ever visit Chopsticks and String (or if you have never visited!), this is perhaps the one book "review" I hope you'd take a look at. It's worth your time to learn more about this book; it was more than worth mine.

AND -- the winner of a crystal donated by my pal Richard in honor of his school crystal project supporting the Greater Lansing food bank is Anno!

Featuring the Marmelade Gypsy as special non-partial random selector!

(It's a blessing and a curse to have a cat who likes to eat paper or chew yarn when your primary art interests are collage and knitting...)

(We had so much fun with this, there were paper bits all over the bed by the time we were done, but Anno was the first name he pulled from the basket!)

Patricia -- An Indelible Friendship

Recently I have had several occasions to think about how when someone dies who is a direct relative, your friends and neighbors shower your with condolences, treat you gently, respect your mourning.

But when a friend dies and others know, they may say “I’m sorry” (and mean it) but the magnitude of that death to you doesn’t quite sink in.

Hanging on the door of my linen closet is a large wooden ornament with a cat on it. It was a gift from my friend Patricia, who died nine years ago last month. A number of months ago in a post related to a “Write on Wednesday” prompt, I spoke of Patricia and several of you said you would like to hear more.

In light of my “quest” to honor those who had a profound influence in my life, I honor Patricia!

I was an older grad student – not quite 30 – working as a promotion student at WKAR when I into the office I shared with my boss. I found Jeff having a deep conversation with a female colleague, to whom I was introduced.

Patricia Maloney handled education services for the station, and we would later work on projects together. But I first knew her as Jeff’s friend, who would stop by to talk politics, the arts, or about what they saw on “CBS Sunday Morning” or heard on NPR.

Don’t laugh – I didn’t know much about NPR then. I certainly didn’t know about “Morning Edition” and “All Things Considered.” But if Jeff and Patricia were talking about these, I thought I should find out what it was all about. And I became hooked.

Patricia and I became great friends, and in many ways she was my mentor and a teacher -- an interesting role for someone only a few months apart in age. This tall woman, who reminded me of a colt on the edge of achieving race-horse status – all legs, long hair, elegant (but in an unpretentious way) – was just what I wanted to be.

She was confident. Self-assured. Brilliant. Articulate. She had style and grace. Because Patricia knew about NPR, I started listening to NPR – and I loved it. I developed a life-long habit I not only continue today, but one that would serve me professionally as well.

She taught me about how delicious it was to put granola or bran flakes in your yogurt and I remember walking to her duplex not far from the station at lunch where we’d enjoy yogurt and cereal and talk for eons. Silly, now. Not then. We’d talk movies – not just the popular ones, either.

She introduced me to “My Brilliant Career” and to “The New Yorker.” Her cat Shandy had a fine gallery of cartoons by his bowl. When Shandy died, we got on the phone and we both cried.

And we’d talk about books, the theatre, art, politics. For a person working and studying in a university community, I knew surprisingly few people with whom I could have these conversations. And we'd talk shop, too -- the TV Auction, a new educational project. It was all there.out for breakfast, too, on Sundays and share the New York Times. Neither of us relished giving up the book or theatre section, but over omelettes and tea, it always seemed to work out. Our discussions were long and involved, and often they would center on hopes, dreams and family.

Both of us had mothers who had died of breast cancer, and in Patricia’s case, both of her parents had died. We talked about our mothers who left us far too early. Who left us young, unformed, never seeing the women we knew we would become, the families we hoped would be parts of our lives.

We shared our career dreams. And we shared every sorrow. The ups and downs of our romantic lives were dissected and examined. In person – and later in letters and phone calls – we helped each other through heartbreak and celebrated joy. We supported one another unconditionally and in full.

And every minute I spent with Patricia, I learned more and more about growing up.

That sounds silly. But Patricia had been places. She’d grown up in Chicago, then lived in Boston before coming to Michigan. She had a confidence, the assuredness that comes with different experiences. Mine had been “the same.” I had lived in the same town forever (partly by choice) and didn’t have siblings to teach me how to fight or compete. And while I didn’t mind that – totally, just a little – I still needed to learn that surefootedness that she possessed.

When Patricia lived in Michigan, we’d share salmon mousse and mulligatawney soup. We’d talk books. I didn’t know many people here who did that. Most had long moved away.

But Patricia was never happy in Lansing. Think about it. Chicago. Boston. Lansing. It doesn’t compute. And she desperately wanted to return to Chicago.

And so, one day, she did. With a smile on her face and joy in her heart, she returned to the windy city, with a big new job (not in broadcasting) and new worlds to conquer.

We kept in touch through regular phone calls and letters. Those were the days of letters, and Patricia wrote the best.

“I suspect (smile) your new spacious apartment is all full! “ she wrote, shortly after I moved.

And in another, after seeing a movie: “I got very sad, I think because the movie reminded me of falling in love – and I truly wonder f I’ll ever fall in love again. Lonesomeness seems such a way of life. Singularity so strong by now. And the possibility of loving (with or without romance) seems quite remote. It’s not that life isn’t good and rich. It is, and with health restored, so sweet. But lonesome. Yes.”

Her health restored. This was after we learned that Patricia had breast cancer. Our mothers' disease. The disease we both feared. But they got her cancer; she was treated. She was home free. “Our mother’s prognoses don’t have to be ours,” she reminded me. And she was right. I think about that every time I have a mammogram.

And then, one day I received this – “One interesting, complex event – lunch with an old college boyfriend, Paul, who lost his wife last year. Very sad story – two kids, Nora, 5, and Jimmy, 8. Cancer – side effects of chemo caused congestive heart failure. Although we hadn’t spoken in 12 years, we had a great three-hour lunch. Maybe we’ll get together again.”

Paul turned out to be the love of her life, and when they married, she also married his children, Nora and Jim.

After that, letters talked about Jim doing this and Nora doing that. She had found her family and was ebullient.

One day, Patricia called. Her cancer was back. And this time it was worse – for different reasons.
Paul knew, when he met Patricia, that cancer was part of her story. But it was still agonizing for her to contemplate telling these children who had already lost one mother that their beloved stepmom had the same disease that took their mother away.

Through it all, she did the family vacations, the PTA, the school activities. One-on-one vacations with Paul while the kids were with their grandparents. And when she had a cancer recurrence, that involvement didn’t change.

One time I visited her – it was shortly before a surgery. She said, “I got a wig like my hair and I’m having this done while the kids are with their grandparents. They don’t need to know about this right now. When it’s time, OK. Not now.”

Rick and I were headed to a bike trade show in Chicago in February 2000. I called Patricia to see if she’d be up for lunch or dinner. But she declined.

“I haven’t been feeling well, and I’m not sure I can really get out right now,” she said – which made sense to me. It was late February and the Windy City can be brutal at that time of year. Her home was far from the trade show and we thought it unlikely we’d get together this time.

We had a fabulous talk, though, as I told her of this new guy who had stolen my heart, who – like Paul – shared his children with me, and who for whatever reason, loved bicycles almost more than life itself.

It was a wonderful conversation.

And the last.

When she died two months later, I was shocked. I had no idea it was so serious at the time, and if she knew (and I think she probably did), I’m sure that’s what Patricia wanted.

I really don’t think any death – except possibly my parents, and in some ways, not even theirs – has affected me so.

Patricia died almost 10 years ago. My world is entirely different. Yet, like the others who die too young – Diana, JFK, James Dean, to name a few – she is frozen in time.

This beautiful colt of woman who introduced me to so much. She helped craft the person I am today and that friendship lives on as vibrantly as it did when she was alive.

In a letter I wrote to Paul and her step-children after she died, I said “My life and my world was a better, richer, more inspired world because I knew Patricia. It was brighter, it was more beautiful. I’m a better person because of her. She was the most courageous, well balanced, good humored woman I’ve ever known, a role model in every way.

And I like to think that the words she wrote below showed that she felt I, too, was a person worth knowing.

I'm delighted to say I was the winner of Bree’s blog drawing for a copy of "The Notables." Thanks, Bree!

Time is running out to enter my drawing for a lovely crystal, donated by my friend Richard (not to be confused with Rick, because I know some of you do!), whose story of the Food Bank Crystal Project I mentioned in my May post titled "A Puzzle." If you would like to enter, please leave a comment here and on other posts up to midnight on May 31.