Roar

Adrenal Cancer, Cancer, Family October 24, 2013 Comments: 3

CHaD performing Katie Perry’s “Roar”

If you haven’t seen the video of the Children’s Hospital at Dartmouth (CHaD) patients lip-syncing Katie Perry’s “Roar” it’s worth your time to watch it. (Not sure how you could have missed it—it has over a million views on YouTube!)

Every time I watch it—or visit CHaD–I am reminded how fortunate I am that I was blessed with a full life, children, grandchildren, career, a long and happy marriage, before my cancer diagnosis. Not all of the kids who are admitted to CHaD have that to look forward to.

Our niece, Meghan Richardson, is one of the “stars” of the video. She has cystic fibrosis and gets admitted to “Hotel” CHaD a couple of times a year when her lung functions drop. She’s been going there sixteen years now—they actually saved her life when she was four months old. When we visit Meghan at CHaD, we see how much of a second home it is to her. Over the years she’s taken more control of her medical care—and I imagine there are times some of the staff wish she were less assertive, that she “roared” less.

I wish I had known how to roar over a year ago when I was first experiencing symptoms of my adrenal cancer. Granted, my treatment and outcome may not have been any different if I had been diagnosed three months earlier but I might not have felt so powerless during the time while I waited for my diagnosis. It helps to be reminded that I still need to be in charge of my health care.

Yesterday was my quarterly CT scan. The preliminary reading is that everything is stable. And now we can breathe. For another three months.

After my appointment we were going to hang around for the filming of the Piers Morgan/CNN interview with Meghan, Maggie, and Holly from the video but it wasn’t scheduled until 8:30 p.m. and we decided that watching the interview from the couch in our jammies was more appealing. Not to mention that we would be able to see the Red Sox play (WIN!!) the first game of the World Series.

There are no coincidences, we like to say around here. (Frannie, my nurse yesterday in the oncology department, happens to be in the video!) Meghan would not have been in that video if her lung functions hadn’t dropped. It was filmed on the first day she was admitted to CHaD but you would never know she was as sick as she was. That’s the spirit of the patients at CHaD—and their parents, health care providers, and staff. They are amazing. Inspiring.

It’s always nice to come home

Adrenal Cancer, Cancer, Family, Writing October 16, 2013 Comments: 4
I love this place even though I am a rock 'n roll kind of girl!

I love this place even though I am a rock ‘n roll kind of girl!

Just spent ten days in Arizona on vacation with our daughter Joy and her family. I thought I would find time to work on my blog and on my book, to think about adrenal cancer. I didn’t end up doing any of that. OK—I did spend some time thinking about ACC, how could I not? It’s my life now, even in my Facebook news feeds. Listened to a podcast from MD Anderson of a Stage 4 ACC survivor on the trip home from Boston. Encouraging!

We were busy all of the time and I loved every minute of it. Especially the constant warm temperatures (90’s!), blue skies, and sunshine, which I blame on preventing me from sleeping. That would have been a good time to write but I didn’t–blame it on Ken Follet’s long book, “World Without End.” I can only dream about writing a book that keeps someone up until 2 a.m.

Vacation with the grandkids is always go, go, go. Football practice. Football games. Shopped at the malls, so many to choose from, so close, not like at home. Celebrated Joy’s birthday. Skipbo marathon with Haley. Yoga with Joy .

Breakfast at Liberty Market with Haley followed by the splashpad while Joy taught a class at Gilbert Yoga. Lunch at Queen Creek Olive Mill. Dinner at San Tan Flat—a blast and I indulged in one of their awesome margaritas. Not all on the same day–but we do tend to eat out a lot while we are on vacation!

Went on a trail ride at MacDonald’s Ranch in Scottsdale with rattle snakes, a rabbit, a coyote, and a runaway horse—Haley’s, not mine! My horse, Holiday, and I were a perfect match. Nice and easy……My buddy, Holiday.

Swam in the pool fully clothed with Haley. Hiked a new trail (to us) in the San Tan Mountains. Toured the Phoenix Zoo.

Met with Dave and Toni Bellin, travel agents (yes–they do still exist!) at Sunrunner Travel to plan our trip to Hawaii. (So exciting!)

Finally arrived in Boston after a disappointing boarding of our flight in Baltimore on Southwest. After several elevator rides elicited the assistance of a Massport employee to find our truck in the Logan parking lot. Rain and 47 degrees when we finally headed out onto I-93.

Vacations are great but it’s always nice to come home.

It’s okay to sweat the small stuff

Adrenal Cancer, Cancer, Family September 27, 2013 Comments: 3

Change. My life has changed immensely in less than a year, since the first doctor acknowledged there was an issue with my liver or kidney—but not my adrenal gland. So much has happened since then: surgery, being diagnosed with adrenal cancer, retiring. Dealing with the idea that I have an ultra-rare cancer that I could find out at any three-month interval has metastasized, making the focus of my life fighting the disease instead of living it to the fullest. That is change.

You can’t prepare for it nor would you want to be prepared for it. Who would want to live a dismal life like that? I have a positive attitude yet I am a realist. If those cancer cells are in my body, no matter how positive I am, they will find their way into my lungs, my liver (please not my left kidney since I only have one left). That I can’t even fathom. Are we talking about someone else? Am I the one with adrenal cancer, the one who the odds are stacked against? That is change.

Ask my husband and he will say the biggest change is I am a nicer person. 

The other day my grandson said when he pulled a handful of coins from his pocket, “look, I have change.” I truly enjoy being there for those moments. That is change.

Maybe I was never fully there for those moments, always preparing for the next moment. When people say “don’t sweat the small stuff,” I get it but on the other hand I see it differently. (I prefer “life is good.”) The small stuff is what your life is made of, so why shouldn’t you sweat it? Don’t take it for granted. Watching the kids pick apples, fixing the flat tire, making the casserole for the neighbor whose father died. It’s not the birth of your child-it’s when she takes her first step or says “I love you, mommy.” It’s not the job promotion—it’s when your boss says “thanks for the great job.”
That’s what we shouldn’t lose sight of.

Our lives are like snowballs, made up of unique snowflakes, small events, that when rolled together become something much larger than the individual snowflakes that comprise them.

That’s why it’s okay to sweat the small stuff. For a lot of us, if our lives were only comprised of the big events, there wouldn’t be much to them, would there?

Enjoying the ride

Cancer, Family September 16, 2013 Comments: 6

Taking a breakAt the end of Steve’s workday last week, we were out the door and on the motorcycle within five minutes. It was 87, blue skies all around us, hot, and humid. Storms were expected but by the looks of the sky they wouldn’t be here for some time. We rode up through Easton, stopped in Franconia and split a grinder then noticed the sky looked ominous toward the west. We headed for home via Sugar Hill then back the way we came on Route 112. It was obvious it was going to be close if we would make it home before the storm hit.

I was tense sitting on the back of the Harley, wondering if I would get hit by lightning or a falling tree. Suddenly I relaxed, realizing that if it was meant for me to go tonight—by go I mean die, of course—then so be it. Even when I saw the lightning and the rain drops on my helmet visor, I wasn’t overly concerned. I did spend some time thinking about possible places to shelter but left it up to Steve to decide what to do. Go for it was his decision, taking us on the dirt road by what my family calls “Pig Cemetery.” (A lifetime ago there were three pink baby pigs running around the cemetery!)

I actually stopped trying to control things twice that night. First I let Steve decide on the best approach for getting us home during the storm—hard to communicate anyway when you are wearing helmets!

The second time was when I just sat back and said “whatever.” If my time is up then no amount of worrying is going to change it. The girls will figure out the finances. Someone will take the cats. (But who will finish my novels??)

I wouldn’t have felt this way before my cancer diagnosis. Sure, now that I’ve had to endure the surgery and treatment, I certainly hope to live a lot longer. I want to see my grandchildren grow up to have children. But I can accept it if I don’t. What choice do I have?

That night I basically turned myself over to my higher power and enjoyed the ride. That’s pretty much what riding a motorcycle is all about anyway. As is living with cancer.

I’m a winner!!

Adrenal Cancer, Cancer, My Novel- Anne, Writing, Writing Group September 5, 2013 Leave a comment
NaNoWriMo Winner Certificate 2011

NaNoWriMo Winner Certificate 2011

It’s a great day to be alive even if it feels like summer is over and fall is on the horizon. Frost warnings tonight!

I spent the morning yesterday at the Cider House Café at Windy Ridge Orchard with three women from my writing group. I can’t think of a better way to spend a morning—except if the one member who is “not a morning person” had been there.

As I had already eaten a bagel, the scrumptious apple cinnamon pancakes and bacon counted as my lunch, along with a Cortland apple from the peck I purchased in the gift shop. A lifetime ago I worked with the husband of the woman running the register—actually I started the novel (“Anne”) I am still struggling with when we began working together in 1986. He died of cancer five years ago.

She said she is finally coming to grips with his death. I can see that when Steve looks at me. I know he is thinking, how am I going to live without you? I am fortunate, I am only Stage 2 (of an ultra-rare cancer, unfortunately). It doesn’t mean I can’t become Stage 4 overnight. Or that I remain NED (no evidence of disease) forever.

I didn’t know in October that I would have surgery for ACC in November. I was living for tomorrow. It’s a wakeup call to find out that tomorrow may not come. Now I try to live my life as though today, this very moment of today, is all that I can count on.

But the reality is that most people don’t live their lives that way. They live as though death only happens to other people.

The ability of the women in my writing group to motivate, energize, inspire, me is priceless. They make me want to sit in my seat and write until I can’t write any more. To hone my skills until I can’t write any better.

We decided to participate in the National Novel Writing Month event this November, where you write a 50,000 word book in 30 days. I participated a few years ago, something I admit I am proud of. We’re going to meet in a neutral place—meaning no distractions—to write together in November. It’s a lot of work to write, and a lot more to do NaNoWriMo, but together I have no doubt that we will be successful.

Paddle harder

Adrenal Cancer, Cancer, My Novel- Anne August 27, 2013 Leave a comment
No wind and we had the pond to ourselves. Serenity....only spoiled by the dead loon and its lonely mate.

No wind and we had the pond to ourselves. Serenity….only spoiled by the dead loon and its lonely mate.

Last week we had a gorgeous evening, especially by late summer standards. The air was still and warm. Blue sky. No humidity. (Why can’t we have this weather year round? Then we wouldn’t need to winter in Arizona I suppose. And some pathetic souls actually like it cold….)

Perfect for kayaking on Long Pond. As soon as Steve walked through the door from work, I was ready for him to load the kayaks while I filled the cooler.

Saw some ducks and what we believe was an immature bald eagle (we determined after we looked it up in the bird book when we returned home). In the middle of the pond we watched a lone loon dive and surface, careful to keep his distance from us. The week before we had seen his (or her) partner floating dead trapped in the tall grass along the edge. This week it was gone. We missed their haunting soulful cry.

No moose. It’s always the moose we hope to encounter and rarely do. And no sign of the heron we usually see. Could it possibly have migrated south already?

As we neared the launch on our return, I didn’t want the glorious evening to end. I just stopped paddling, drifted, prolonging my enjoyment. I could have stayed there until the sun set.

You can’t do that with life. Even if you don’t want it to end, it will. Paddle or drift, your life will end. It doesn’t take a genius to know that. When you have an illness as I do, you know it–you just don’t want to accept it.

As for my book—that I do want to end. I need to paddle harder. And faster. Give it my all. But it’s so hard. Like kayaking on Long Pond when there’s a head wind off Mount Moosilauke.

Blue sky and sunshine–the pressure

Cancer, My Novel- Anne, Writing Group August 15, 2013 Comments: 5

Started out thinking we would go to Bar Harbor for the weekend then realized, after finding very few rooms available unless we’re willing to shell out $800 for two nights, that this would be a good time to take the Martha’s Vineyard/Nantucket trip we’ve been pondering. We love Martha’s Vineyard and have taken several day trips there—and when I say day trips, I mean home to Martha’s Vineyard and back in one day. One long day…It’s so much harder for me to do that now.

Last Saturday we did Ogunquit/Rye and I was confined to the couch for a few days after that so we decided our next trip will include an overnight or two at a motel. Now we’ve decided that we’ve been to Martha’s Vineyard enough (that could never be true for me but for this excursion we’ll go with that). Nantucket would be awesome (as day trippers) since we’ve never been there and it is on my bucket list. The internet is great—I can book the ferry reservations within minutes but the room?? Too many choices on the Cape…and yet so few that are available for one night. And then I need to factor in the potential traffic nightmare. Maybe we’ll just stay home and chill….

Those two moles I had scraped from my back? Luckily they were just atypical and only one needs further “surgery.” The appointment with the surgeon did get cancelled…..so now I get to wait until the end of November for the removal of the mole. Must be a history of melanoma doesn’t create a sense of urgency. One more thing to be thankful for, I suppose. I just realized it is scheduled for one year and one day after my adrenal cancer surgery—at least Thanksgiving is the following week this year. And Steve, you are on notice that we are hosting it. Just in case next year we can’t….

Major accomplishment—it’s now two weeks in a row that I have submitted two chapters of Anne to my writing group. In order to do that, I feel as though I have spent every free minute at my laptop. Of course I haven’t. I did manage to squeeze in that trip to Maine and two days on the couch not feeling well—and two days on the couch not feeling not well! I’m aiming for another submission this coming week—at this rate I’ll have the second draft completed in 2013. That shouldn’t even be seen as an accomplishment considering I am “retired.” But what happens to my book when Steve retires and we head to Arizona—and I’m no longer (temporarily) an active participant in my writing group?? We really need to get Facetime or Skype working.

Just let the cat out and realized the sky is blue and the sun is shining. What shall I do?? Probably getting dressed would be a good start. The pressure….

Are 50 t-shirts enough?

Cancer, Family, HGTV/DIY/Design, Writing, Writing Group August 8, 2013 1 Comment

As Joy has rented out her cabin and my DIY fun there ended with decorating the porch with a tablecloth and vase on the table and new cushions on the (purported family heirloom) rockers, I am turning my focus to Jesse’s house. I feel so fortunate to have the time (and hopefully permission) to help her with this project.

My entire day is a blank slate looming in front of me (when I’m not visiting DHMC) with time to write. Spend time with family. Dream about designing. Is this what cancer patients mean when they say they feel blessed to have cancer? Or just my shallow interpretation?

Hanging out with Jesse and her kids, working on my book and blog, reading lots of books, napping every afternoon, watching HGTV/DIY—these things might sound totally unproductive to most people, something they might indulge in on vacation or over the weekend—and not that long ago I was one of them—but now I see that life isn’t necessarily about being productive in the traditional sense of the word.

I can be fulfilled without a career, a paycheck, a title. Yet I spent so many years feeling otherwise. (Yes, I am fortunate that my husband can support me—maybe not in the style to which we were accustomed when we had two incomes but we manage to pay our bills and eat out!)

Have my priorities shifted? Most certainly. I’m finding that the 50 t-shirts that I own are enough, especially since I’ve only worn 15 of them this entire summer. So no more time or money wasted on weekend trips to West Lebanon to buy even more clothes.

I hope this is just the beginning of that shift. That there are more changes to come.

Yesterday I stayed in my pajamas until 4 o’clock, working on my submission for my writing group tonight. It was a gorgeous day and yet I stayed on the couch, weighted down by my laptop, afraid that if I got dressed I would venture out of the house and end up embarrassed tonight at writing group. Which I will be anyway.

I’m still not comfortable with going public with my writing. (And that includes this blog.) It wasn’t very long ago that I would hide my writing from my husband. Yet I can’t realize my dream of being an author (meaning a published writer!) unless my work rises to the level where I am not only at ease with others reading my work but proud of what they will be reading. And it won’t do that all by itself.

Going public

Cancer, My Novel- Anne, Writing, Writing Group August 2, 2013 Comments: 3

I woke up at 2 in the morning for a bathroom break. Someone was thumping my chest. It took me a few moments to realize that it was me. My arm had fallen asleep and I was attempting to wake it up by hitting it against my chest.

The things we do to ourselves without realizing it. Thinking that someone else is doing them to us. That we are not the cause of our own problems, of our situation. That events just happen of their own volition.

I can always justify not spending time writing because the bills need to be paid, the laundry needs to be done, the dishwasher emptied. Hey, I can’t shirk those responsibilities now that I am no longer working. Sometimes I just don’t feel well enough to do more than lie on the couch and watch TV. I can always blame it on my cancer. Then I can go to my writing group with a reason (an excuse?) for why I’ve been neglecting Anne.

Yet I’ve always been able to force myself to power through projects. When I’ve had to. But not when I’ve wanted to. Wanting to have something done is not enough for me. I’ve always needed a deadline, a real deadline, not one that I’ve set for myself.

Last night at my writing group I committed to submitting next week. I am going to start with the beginning of Anne and work my way to the end. The end of what will be the second draft. Two down, how many more to go after that?

John suggested that I post my novel right here on my blog. WHAT??? That means going public with my writing, posting it on the Internet for the whole world to see (OK, so I only have 53 followers). Before I feel it is ready. Or before I am ready……

Just 250 words every other day. Yet it feels like a major commitment. As frightening as it is I think it’s a great idea. I’d love to hear what you think!

Perfection Paralysis

Cancer, Mitotane, My Novel- Alex, My Novel- Anne, Writing, Writing Group July 27, 2013 Leave a comment

I woke up this morning dreaming about Anne. Just like most dreams, two hours later I have no idea what it was about. But I see it as a good sign—I am immersing myself in Anne’s life, which can only help me with my novel.

In reality, I don’t need more plot ideas or character background. I have all of that. What I am lacking is the motivation to sit down and write. “Seat of the pants to the seat of the chair.” Steve threatened this morning to make me stay at Joy’s cabin until I finish the novel. He will come and visit me but I won’t be allowed to leave!

As though in 39 years of marriage he has ever been able to “make” me do something. He asked how close to completion is the novel? 90%? I must have really fooled him about the progress I have been making on the book. I only wish I were at 90%…or even 50%.

My excuse when I was working was that I didn’t have time to write. So what’s my excuse now that I am retired? It’s the same one that has always been the source of my procrastination—perfection paralysis.

When I was working on my Alex novel, I wrote a diary that was not going to be part of the book. Its purpose was to provide backstory, to help me understand how Alex got to where she is. The patient members of my writing group were the only intended audience so (no offense) I wasn’t plagued by the need for perfection. The ideas flowed. I looked forward to writing at the end of my work day.

Now I don’t work. And yet I don’t write any more than I did when I had a job—maybe less. Time to fix that. For, unlike Mick Jagger who just turned 70, I don’t have a career spanning 50 years to look forward to. How fair is it that someone who has lived his lifestyle is now 70 and healthy, (even the epitome of “70 is the new 50”) when I, with my (almost) squeaky clean life, am diagnosed with adrenal cancer at 57?

There is good news along the way. According to an ultrasound last week, I have a “good-looking” thyroid. And the cyst on it is just a cyst. Nothing to worry about—50% of people have them. I’ve also dropped my mitotane consumption (once again) from 5 to 4 pills a day in an effort to lessen the side effects.

With the good comes the bad. Next week I visit the dermatologist because of a suspicious mole or two. Wouldn’t be much of a concern if not for the two melanomas I had removed back in 2002. The appointment with the dermatology surgeon for the following week is already scheduled. Hoping that it needs to be cancelled…..

%d bloggers like this: