Tag Archives: health and writing

Random Sammys

Sammy was a truck driver stuck in my husband’s place of work, a truck fixing place—what’s that called anyway—a really big garage I guess. Anyway, it was Christmas Eve and Sammy was supposed to be home with his wife and children in Georgia, but instead he was stranded in Wisconsin in a cold garage. He was leaning against the service counter with his head down when I arrived to pick up my husband from work. I’d brought our two dogs into the shop as a special Christmas treat for everyone. Merry Christmas, Guys! Time to get home and celebrate. Atticus, the schnauzer, promptly lifted his leg on one of Sammy’s tires, unleashing a steamy stream of urine that left an impressive puddle. It was kind of fitting really because Sammy’s truck wasn’t going anywhere for some time. I guess it was super broken. It had let him down, and on the most important night of the year. Atticus must have sensed that.

 

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Atticus likes to hide in bed, too!

I’d been feeling pretty blue, but had been trying to hide it in public for quite a while by then. I found it difficult to get out of bed in the morning and impossible to stay away from that same bed with its heating pad and two willing dog companions as each gray day unfolded. I mean, it was Christmas and I was going to be with none of my kids or grandkids, not for months. Granted, I had just gone to visit them the month before, but I already deeply missed them and I’d never been away from the little ones, who really aren’t that little anymore, on Christmas. And I was living in a state I loved but that was 2,000 miles away from the state where I’d built a life for thirty-eight years.

I was missing all kinds of things and people I had loved and many that I had taken for granted. I still planned on making a big Christmas dinner, but it would only be a dinner for three: my husband, his father, and me. And it had rained for weeks in a state that should have been a winter wonderland by then. My roof leaked. The yard was a mud hole. The holding tank had filled up just that very morning, setting off an alarm almost as offensive as the smell in the mud hole yard, and nobody likes to call Pat’s Crap Pumping Service on Christmas Eve. My solar Christmas lights obviously wouldn’t turn on because there’d been no sun forever. My pink fudge didn’t set. I wasn’t writing. What was there to get up for?

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I took this picture at the Kenosha Museum, but it represents my dilemma quite well I think.

 

 

And then came Sammy, and Sammy wanted to get home for Christmas. He hadn’t been able to rent a car with his out-of-state driver’s license. My husband suggested the airport. Could he get a flight? We would drive him. Sammy didn’t know if he could get a flight, but it was his best chance. Soon, Sammy, my husband, Atticus, our other dog, Diesel, and myself were all crowded into my little blue Beetle headed for the airport. It was about a half hour drive going in the opposite direction from the mud hole, making the round trip to pick up my husband something like two hours.

I’m a nervous driver when it comes to driving on freeways or anywhere near a city, but I found myself relaxing as Sammy told his story. He had left Africa at twelve-years-old, alone. He was the only member of his family who was able to emigrate. He lived in a small town in Utah and attended high school there. He loves America. He said that “the father Bush was the president when I came, so I liked him. He let me come to America. I couldn’t understand when Clinton suddenly got the job. How can someone replace the president?”

He said the president in his former country had been in power for twenty-five years and there was nothing anyone could do to change it. His family was afraid when Sammy would visit because Sammy had learned about free speech and they thought he’d get killed for speaking out about how bad things were there. He said, too, that Americans are the nicest, most helpful people in the world. He said that in other countries people won’t even give you directions, much less a ride to the airport. I think Sammy is a little partial to America and that there are lots of nice people everywhere, but it was still nice to hear.

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I love stamps, and writing, and letters…

He teared up when I asked him if his children believed in Santa. I cried, too. My husband was in the back seat with the two dogs, but the car is so small that his face was only a few inches behind us. I glanced back at him and his eyes were bright blue with tears. Suddenly, it was starting to feel like Christmas.

Sammy got a flight and Mike and I headed home. By this time we too hungry to go home and cook the special dinner we’d planned just for the two of us so we began searching for an open restaurant. We stopped at two places that had their lights on and doors open, but they were having private parties and weren’t serving the public. It was Christmas Eve, sorry. So we did the unthinkable and drove through a MacDonald’s. We got cheeseburgers for the dogs, too.

When we arrived home, we waded through the mud and entered the front door. We both remarked on how cozy the little cottage looked. We each poured a glass of wine, his red and mine white, and Mike checked his phone. There was a message from Sammy.

Merry Christmas and Thank You. I’ll talk to you soon. It was a pretty good Christmas. Wishing all of you a good New Year with lots of random Sammys to bless you.

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This may be an old New Year’s hat, but it’s a Goody.

 

 

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Filed under Christmas, Depression, Gratitude, Humor, New Year's

Scanxiety

billyandloribabes

I belong to an appendix cancer support group, and one of the non-words I see quite often in posts is scanxiety, a condition related to the anxiety felt about medical scans that are given regularly for an indefinite amount of time after cancer treatment. In the beginning my scans were spaced three months apart; now they are six months apart. I’ve gotten good at coping with the anxiety nowadays (four years post diagnosis) most of the time, but when I get to the day before testing, as I have today, I find my mind casting away from anything productive.

My creativity is gone. I can’t concentrate on writing my novel or even reading someone else’s novel. I want to talk about it, but I don’t want to sound like a hypochondriac. I don’t want to seem negative. I don’t want to be told not to worry, everything will be fine. Even though I know it probably will be.

IMG_0679 This photo depicts my usual outlook on life, and was taken on my beloved mountain. This is not to say that I don’t love, love, love Wisconsin!

The thing is, I’ve never gotten over that initial out of nowhere diagnosis. I can only say that I feel vulnerable to invasion, or worse, that I feel like an unknowing host. I don’t understand cancer. There are so many different kinds of cancer, so many different treatments, so many different outcomes. Mine, Goblet Cell Adenocarcinoid Cancer of the Appendix, is supposed to be quite rare. It doesn’t seem so rare when I read the stories in my support group.

Sometimes I think I should drop out of the group; it reminds me daily of something I should not dwell upon. I believe in the power of positive thinking, and maybe reading the very real cancer stories, takes some of my shine away. But I also think that I should buck up—you know, be there for those who ask for a prayer or just need to vent and need to know someone out there really hears them.

I rarely participate in any length, usually just a word or two. Others in the group are much better at knowing what to say. Quite a few of them even offer up-to-the-minute cutting edge medical information, where the best hospitals are, how to connect with an appendix cancer specialist, the ins and outs of health insurance, tumor markers, treatment experiences—all sorts of really important information. I can’t help but feel I haven’t found a place of usefulness within the group.

And here I am tonight, inexplicably sad about the way that cancer changed my life and knowing I might be able to get some help from the group if I could just express myself without sounding like an infant. Most of the posts I read are written by or for those of us who are currently in the throes of the worst of the disease—those reeling and just diagnosed, those going in for their 2nd, or 3rd, or 4th surgery. Those who are in palliative care. The loved ones of those recently passed who write to break the news to the group.

And here I am feeling pretty darn good. I am one of the lucky ones. Makes me feel like a phony just wallowing in a selfish bout of survival guilt. And yet. And yet I am sad. Sad that my life changed so drastically since my initial appendicitis attack. The appendicitis that turned out to be hiding cancer.

Four years ago I was a teacher living on a mountain, surrounded by family, friends, students, colleagues, and neighbors that I loved. My four grandchildren all lived within a few miles of me.

That is not to say that my life is not good today, but it has changed dramatically. I miss my old life. I miss my kids. The circumstances of my life after cancer and my second surgery have impacted almost every aspect of my personal life and my career. Not all of it is bad, but some of it is. I’m not going to lie.

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Sometimes survival calls for sacrifice, or at least that’s the way I’ve come to wrap my mind around it. Maybe it’s nothing as noble sounding as that. Maybe I just got lazy. Teaching, one of my great passions, had always required great energy, energy that I no longer seemed able to summon. I was eligible for retirement. My husband needed work and found a good position in another state. My tumor marker tests showed increasing evidence of cancer at the cellular level, yet my scans were clear.

I’m not sure what tipped the scale and brought us to this new place. Maybe it was down deep merely an urge to run, something I’d done plenty of times in my earlier years. Grief over my brother’s death, financial hardship, chemo-brain, depression, debilitating chronic health issues, fear of recurrence…all of these things and more must have played a part. I only know for sure that the world changed after my diagnosis.

That’s the thing about cancer. It sneaks up on you. I had no idea that I had cancer until I went in for my post-operative check after my appendicitis surgery. And that’s probably the root of my malaise. If I didn’t know I had it then…

Scanxiety.

I’m grateful for what I have; I still have love and family, however far away some of my loved ones are, and I will be forever grateful for what I have had. Nothing can take that away.

Mahalo.GrandmaJazz

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Filed under Cancer, Cancer Journey, Patient Advice and Support, Support Groups, Teacher, Writing

The Cancer Journey: What to Pack Introduction, June 18, 2015

The Journey Begins When You Open the Door

The Journey Begins When You Open the Door

You’ve just been given a cancer diagnosis. Often, this news comes as a complete and unexpected blow to you, as it did for me. Other times, as it may have done for you, it comes after nervous days, weeks, or months of wondering what’s wrong, suspecting the worst, praying that it isn’t, going to doctors, and hoping the cough or the pain or the patch of scaly skin you have is anything—anything—but cancer.

Whichever way it happens, anyone who hears the words, “You have caner,” is in for a universally brain numbing and heart stopping experience. After those words, you know your life is suddenly changed in ways you fear and do not understand.

Here’s what I want you to know: many others have been through this, consequently, you are not alone. There are some simple things you can do to soften the shock, and to construct a small space of comfort to hold onto. You will need to prepare.

In July of 2011, I walked out of my surgeon’s office smiling bravely, barely feeling the ground beneath me, holding my five year old granddaughter’s tiny hand, and wondering if I was imagining what I had just been told. I had gone to the post op appointment feeling giddy. Just having survived and quickly recovered from an emergency appendectomy, I felt I had undergone nothing more than a small hiccup, an interruption that was going away as quickly as it had arrived, leaving me stronger than ever. After all, I had done remarkably well. I was already back to running around with my grandkids a bare two weeks after surgery. No need to cancel summer babysitting plans, I thought.

That was why I took my granddaughter with me, and how she was sitting right next to me when I heard, not, how beautifully I was doing, but, that the lab had tested my appendix. I had appendiceal cancer, a disease I’d never heard of and soon learned was rare, what is called an “orphan cancer” because so few people contract it that it doesn’t garner much research

Perhaps, like me, you went immediately to see a family member, or maybe called a loved one on the phone. You might have already been in a hospital. In my case, I checked my watch and saw that it was about time for my daughter to get off work, and since her office was in the same building as my surgeon’s, I dropped in on her. I could deliver my granddaughter to her there rather than at home.

“It’s strange,” I said. “The doctor thinks I have cancer.” Thinks, I said. Because how could that be? I’d never even heard of appendiceal cancer. It was too soon for tears, I guess, and definitely too soon for me to come up with a kinder way to inform my daughter. I wasn’t my usual self. Not at all.

My daughter looked at me as if I’d just told her I wasn’t her real mother, or something equally stunning. “It’s all going to be fine,” I said. I hugged her, spun my granddaughter in the air, and said goodbye.

Oddly, I then stopped off at the school where I taught, though it was summer break and I was off. My friend, Alicia, whose birthday concert I had missed a couple of weeks earlier due to my appendectomy, was there teaching summer school. The hallways seemed unfamiliar and I didn’t know many of the kids. I felt like a stranger. It was not even fully one hour since I’d heard my diagnosis, yet I believed I had already been transported into a new life. Suddenly, I wasn’t only a grandmother or a wife or a teacher or a writer, I was a woman with cancer.

It is in that fog-like state that I had to make decisions about treatment, and struggled to maintain the life I’d had just the day before, figuring out new ways to make the most of tomorrow. How would my husband take it? What about my brother, who was ill and living with us. I was his caregiver! You may feel things are happening too fast. They are. While you may have to accept that and many other unpleasant aspects of the journey at the beginning, remember, having cancer does not make you into a victim.

The American Cancer Society says that everyone who has been told they have cancer should immediately be referred to as a survivor. They print out new purple “Survivor” t-shirts every year. The ACS does lots of good things: provide rides for people who need to get to treatments, wigs for those who lose their hair, pump a great deal into research for cancer of all types.  A part of me loves that they call me a survivor, but another part, the teacher part, perhaps, thinks: The opposite of victim is survivor. I don’t want to be either of those things. I’m also a teacher of the Holocaust, and I can’t help but think of the Holocaust survivors I’ve known or learned about. My survival is something very different from theirs. And then there is this: Some people find the survivor label to be insensitive in regards to the loved ones of patients who died. Did they not fight hard enough? Were they not brave enough? Though I know this isn’t the intent of the label, I wonder about using it. I do wear the purple shirt when I attend a Relay for Life event, but I’m really not sure I should.

All I know for sure is, You Are Not a Victim!

We all do our best. You may or may not have excellent health insurance. You may or may not live near a state of the art cancer center, such as one of our few national cancer centers in the U.S. Even if you do live near such a place, your insurance may not cover it. You have so much to learn, particularly if your particular kind of cancer is rare. My insurance company sent me to a small clinic about an hour away from my rural home that I’d never heard of. I petitioned for (and won) permission to get an expert opinion at The City of Hope in California. My clinic then used City of Hope’s treatment plan, and I began to relax a bit.

Within hours, if not minutes of diagnosis, you and your caregiver (spouse, parent, friend, or adult child who will sign on to go with you on your arduous journey) will be responsible for learning a new language, becoming an expert medical researcher—tech savvy enough to search and set up informational networks for the other important people in your life… and the list goes on.

Make no mistake about it, a cancer diagnosis means you’re going on a journey, perhaps not to Paris (although that’s not out the realm of possibility!). There might be a really good doctor in Paris, one who is the world’s most renowned specialist in your cancer. Your specialist, and I strongly urge you to find one, could be hundreds, or even thousands of miles away. Wherever you travel, either metaphorically or concretely, you will benefit greatly from a well-stocked gear bag.

Coming Tomorrow: The Gear Bag and All of Its Contents

Is this the kind of bag I mean? Well, almost as much fun.

Is this the kind of bag I mean? Well, almost as much fun.

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Unexpected Relief: Canadian Geese, Kayaking, and Life Lessons

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June 2, 2015

Have you ever been gloomy on a perfectly lovely day? Maybe better to ask, have any of us not? Today began that way, sharply beautiful—a kind of begging to just be outside kind of morning, followed by a mildly warm bursting with life afternoon.

Still, I was gloomy.

My body said go outside, but my heart said no, let’s be gloomy.

My muse said, get up and write, but my mind said no, let’s be gloomy.

If it weren’t for my dogs, I might have pulled the covers over my head. But dogs need walking, so I forced my gloomy heart and mind to come along, promising myself I could crawl back in bed when we got back.

Out walking, we changed course a few times to avoid wildly happy unleashed dogs (Who knows why there were so many loose canines out on this particular day? I pictured them all prying the screens off their open windows with various size paws after their humans left for work, and then jumping out pell-mell to run and roll in the grass. The day was that pretty).

I always change course when I see a loose dog ahead, or one running toward us, not so much because I am afraid of them, but because I fear they may be baited into a fight by my feisty Schnauzer.

Anyway, we found a quiet lane eventually. Diesel and Atticus were taking things slowly, sampling the fresh long grass, sniffing and marking, sniffing and marking. Pandora was playing in my pocket: Coleman Hawkins, “Under a Blanket of Blue.”  Lovely.

And then I noticed.

I wasn’t really all that gloomy anymore.

Nice breakthrough.

I was thinking about the writing I would accomplish today. My important novel writing. Wrestling with my protagonist’s problems. Conjuring up a crucial scene to push the plot forward.

We were almost back home when Barry and Laura, two of my neighbors, waved. “Want to go kayaking with us?” they asked.

An invitation, it turned out, that I could not turn down.

I love being in the water, on the water, with the water. I love the quiet splash. The green banks sliding by. The exercise and the rest.

And this would be my first time out this season.

On a day such as this, these are the moments are sometimes given. Learning to spot them and savor them is the trick.

An hour later we were on the river paddling with just the right amount of effort to know our arms were probably morphing into something sleekly beautiful, something very un-middle-aged-women-and-man-arm-like. There we were, three people, a man and two women, just for a little while living in the moment, alive and in nature.

“The goose family is just ahead,” Laura said. “We’ve been watching them grow.”

We came around a bend and came upon two complete families. Two mothers and two fathers standing tall watching us. Two groups of chicks. One group, still downy fluff, but up and about, and maybe a third as tall as their parents. The other group was younger, but there were a lot of them—they were huddled in a perfect circle around the base of a tall shrub, looking like a living Christmas tree skirt.

There wasn’t a house or a boat or even a power line in sight. Just us and the geese.

“I didn’t know separate families lived so near each other,” Barry said. “And I hear they mate for life.”

They mate for life.

Also, and this is maybe the best part, Barry searched through all the downed branches near the river’s edge for trash. He didn’t find much, but what he found, he took with him. Took it home to recycle.

Laura smiled at me. “Barry cleans the river,” she said.

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Thoughts on the Healthy Writer

Health is related to writing. All areas of health. And conversely, today my writing is very specifically related to health. The two, I have found, are closely entwined. I wrote very little when my health was at its worst. I did entertain thoughts of writing when first diagnosed—lots of time during recovery and chemotherapy to write that new novel. Some writers, tougher than me, have used similar circumstances in just that way, I’m sure. Writers with full-time day jobs, perhaps especially. When else is a chunk of time that big going to show up, unplanned for, unasked? The time, and privately, I even thought, the added depth of character this new ordeal was going to provide me with, could be put to good use. Hadn’t I been too overwhelmed with responsibilities to focus on my writing of late?
It all made good sense until the surgery came, and then the six months of chemo. I was on one mode, and it wasn’t writer mode. It way surviving the effects of cancer treatment by laying on the couch mode. I couldn’t even read a book. Well, I did write some CaringBridge blogposts that kept my family and friends informed of my progress and helped me sort out my hopes and fears. But the novel never came. For me, it just didn’t pan out. I had time, but no energy, no ability to concentrate, no creative spark.
Today’s short piece is inspired by that connection, with appreciation and gratitude for the gift of health I am experiencing right now. I took a gorgeous long walk this afternoon past the wooded hills and ready-for-harvesting fields of corn near my cottage. I was stepping pretty lively, sucking in the newly changed chill in the air, and smiling my ass off! And now, as directed (Blogging101), I’m writing.
Tomorrow is Froedtert Day. Froedtert is a hospital/medical center in Milwaukee, WI, USA. It’s pronounced ”fray dirt.” I am new to Wisconsin and Froedtert, but not to the fray. In California, where I used to live, I began my cancer journey. Having a rare form of a rare cancer made me feel uncertain during diagnosis and treatment. Had my doctor ever actually treated this before? This type of cancer isn’t call one of the “orphan diseases” for nothing.
Though I was well taken care of, I always had questions that went nowhere. We are monitoring you closely and believe you have an excellent prognosis. I came to accept this answer, but I never stopped scouring the internet for detailed information. There isn’t much out there, at least not that I was able to find.
Enter Froedtert. With final instructions from my California docs to find an oncologist and get some new tests and scans done when I reached Wisconsin, I began my search. One of my husband’s coworkers suggested Froedtert, as his wife had been successfully treated for cancer there. And it was covered by our insurance. Good enough, I thought. Looking over their website at cancer specialists, I couldn’t believe it. An actual, honest to God Appendiceal cancer specialist was listed on staff.
Fast forward. I got an appointment with this man, this very nice, personable, intellectual giant of a doctor, and in less than forty-five minutes had all three years of my accumulated goblet cell specific questions answered, my tests scheduled and all of them carefully explained. Some done religiously in California weren’t needed at this time; others not done regularly, were.
I go in tomorrow for those tests. One short week later, I’ll see my oncologist again, and he’ll suggest a plan for the future. The future! I am nervous in a whole new way, actually excited to get on with it, believing that a veil has been lifted. I’m several chapters into writing that new book. Out of the fray, and hitting pay dirt.
Mahalo!

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