Tag Archives: adrenal cancer

It’s always nice to come home

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

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?

I’m a winner!!

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.

Perfection Paralysis

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…..

Nothing to worry about

Woke up at 4:30 this morning to check my iPhone for the email from DHMC letting me know that I have test results available. It was there and suddenly I was wide awake. So was Steve.

Sure enough, the CT scan report supports what my oncologist said—nothing to worry about–but I wasn’t reassured until I saw it in writing. Does this mean I don’t have confidence in my oncologist? Or am I just a pessimist, expecting the “other shoe to drop”?

Everyone says I have such a positive attitude. I try. Really, I do.

But I’m more of a realist than an optimist. And the prognosis for ACC is “grim.” “Dismal.” If you believe the medical journal articles.

DDT use in residential areas was banned on November 20, 1969, one day and 43 years before my surgery. Yet twice a day I take mitotane, a DDT derivative. As of today I am still Stage 2. And the mitotane is supposed to keep me there. So I am committed to ingesting it for as long as I can. Regardless of the side effects.

But all chemotherapy is poison so I don’t suppose I’m any more special than the thousands of other people who take it every day.

I feel as though my life has been put on hold since my CT scan last week. I’ve heard other cancer patients say their lives are broken down into the time spans between scans.

In the last week I haven’t worked on my novel except to change Lexi Rae’s name to Poppy. And in order to firm up Poppy’s age, I had to research the hippie movement. (If you want to know the connection, you’ll just have to read the novel. Once I finish it….) And that was where I learned the date that DDT was banned.

Hard to believe that I was just months away from meeting my husband. This February we will celebrate our 40th wedding anniversary. And celebrate it we will with a trip to Hawaii. We’re planning on flying from Arizona to Hawaii then taking a seven-day cruise around the islands. That’s the plan today….but we’re learning to go with the flow….

 

Revising

I love the process of creating, of writing something for the first time, however crappy the result. Spending hours and hours creating new worlds and filling them with people I love. And those I don’t.

On the other hand, I detest revising and I doubt the sincerity of those who claim that it is their favorite part of writing. I’m envious of those in my writing group who excel at it, accepting the group’s “constructive criticism” with aplomb then returning a few weeks later with a new (and generally improved) version. (Not certain that they love doing it, however.)

So I was excited to read an article on revising in the Sunday Boston Globe Ideas section. Craig Fehrman focuses on Hannah Sullivan’s book on the history of revision. At the very end of the article I finally got to the part I was hoping for, that revising is highly overrated and even a waste of resources (in my own words—you’ll need to read the article for your own interpretation).

Writing a blog satisfies my need to write without spending much time revising. Sort of writing in a journal, flow of consciousness, where the goal is to get my thoughts down on paper before they disappear. And before I have a chance to evaluate their quality. Edit out the emotion. The real me.

I would be happy to put the effort into revising my life however. Edit out the crappy part known as adrenal cancer. Return to the life I used to occupy, one where I went to work every day, put money for retirement into my 401(k) every paycheck, squeezed in time to write, kept busy every second of the day, and rarely got sick.

I say that but now that I’ve left that world, would I seriously want to return to it?

Relinquishing Control

Relinquishing control is hard. With the 4th of July festivities and the welcome invasion of family (this year 31 of us, 15 kids—not all in my house thankfully!) I am more or less forbidden to take charge of the food preparation and entertaining. That honor after many years of being my domain has been passed to the next generation. It’s hard to sit back and watch my daughters and nieces prepare the salad and heat up the beans while I am forced to lounge on the couch with my sister-in-law. (Turns out they took pleasure in their view from the sink of the two mothers doing nothing but chatting with each other!)

My form of relaxation until now has been to be busy, busy, busy, making sure that people have full glasses of wine, that the meat comes off the grill at the exact moment that the sides are lined up on the counter ready to go, that everyone has a plate, napkin, and a place to sit. It doesn’t mean I’m not proud that they are more than capable of doing as good a job, if not better, than I would have done. To see them work together is gratifying. It’s just that I expected this transition to happen in the somewhat distant future.

Now I am expected to take a nap in the afternoon, to look out for myself. To control my well-being instead of my guests’. Not only am I having a hard time accepting this, I actually resent having to think of myself before I think of anyone else. But one benefit is that my sister-in-law and I, both aspiring authors, have more time to talk about our writing–or rather our lack of writing. She will be here for a while after everyone leaves and that will give us even more time to continue this conversation!

Since November I’ve had to turn over control of my life to my cancer. It’s decided how I feel. What I can eat. What I can do. And especially when I can do it. There’s been a lot that I can’t do but I’m gradually getting back into things, like Pilates and yoga. And walking with Judy on her lunch break. My lunch break? Whenever I want it to be.

One In A Million

photo (1)

That’s me.

No, I didn’t win the lottery.

I have Stage 2 adrenal cortical carcinoma (ACC), an ultra rare, aggressive cancer with a grim prognosis that strikes .5 to two people out of a million annually. This is one time when you don’t want to feel special. I had surgery the day before Thanksgiving 2012 to remove my right adrenal gland, kidney, a piece of my liver, and resected my inferior vena cava (what in the world is that, I wondered. It’s the artery that returns the blood from my legs to my heart. Who knew?)

Not only did I miss Thanksgiving dinner, which I would normally have hosted at my house, but a Thanksgiving day trip to Atlantis in the Bahamas with my middle daughter and her family. We did make it there the end of March 2013 and it was a wonderful trip. Funny how when I was recuperated and able to eat normal food I craved turkey dinners, whether at a local restaurant or in frozen dinners due I am certain to being deprived of a real Thanksgiving dinner. I am not certain what I did eat for Thanksgiving dinner on the day following my surgery as the day of and most of the day after have disappeared from my memory. A good thing, I am told by my family who were unlucky enough to be there with me and forced to endure their Thanksgiving dinner in the hospital cafeteria. I no longer crave the turkey dinners as my cravings change constantly—what I absolutely had to eat a short while ago I no longer desire.

Except for carbs.

For the last few years my husband and I have tried to follow the South Beach diet principles and now all I want to eat are things off limits on South Beach: all carbs, including bagels, cinnamon raisin bread, pumpernickel, pasta, even the occasional toaster streudel.

Vegetables? No thank you.

It sounds as though all that ACC has done is impacted my eating habits. Nothing could be further from the truth. I am lucky in that my cancer is stage 2, even though the prognosis is that I have a 51% chance of living five years. I had several options for treatment, one of which was to do nothing, just wait for the results of my CT scans every three months. That didn’t really thrill me.

I am used to taking action, to being in control.

A remote second opinion from the University of Michigan recommended Mitotane, a DDT derivative, taken in pill form daily for three years. Although my oncologist at Dartmouth Hitchcock Medical Center did not support my decision, I went with the U of M recommendation. Rumor has it that only 20-30% of ACC patients benefit from Mitotane—how am I to know if I am one of those? Clean CT scans only prove that the cancer has not returned, not that the Mitotane has kept it from returning. Mitotane has extreme side effects, which prevents many patients (are there really many people making this decision?) from taking the drug. Because it also kills your other adrenal gland, you need to take hydrocortisone, which I have difficulty tolerating even though it does fuel my appetite and apparently my energy level.

The biggest decision of my life was to retire at the age of 58. (Sorry, Steve, marrying you wasn’t really a decision, it was a given.)

On the day I returned to work from medical leave after my surgery I gave my notice. That wasn’t part of our plan, just like cancer wasn’t. Steve was supposed to retire this year at 63 and I was to continue working until I was old enough to draw Social Security. So much for plans. But who wants to keep working, no matter how rewarding, when death looms on the horizon? Sure, we’re all going to die at some point but by the time you reach my age you assume you’ve got another 30 years ahead of you, especially when your mother is still alive and kicking—and I do mean kicking—at the age of 85. And I thought I could produce a lot of novels in those 30 years.

Now I am hoping just to finish the writings that I’ve already started.

Yes, writing is my dream and what better time to try to realize your dreams than when death is no longer just a concept but a very real possibility?

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