Tag Archives: cancer

A brothel in its former life (seen from the bathroom window)

Adrenal Cancer, Travel, Writing, Writing Group February 6, 2014 Comments: 2
Jerome, AZ

Jerome, AZ

Today I was going to get serious about my book–didn’t I say that yesterday?? What was I thinking? Instead we traveled to Sedona to see Dan, a friend of ours from back in NH who is a snow bird, just like we are now. It’s further up there than we thought–over two hours, and that’s in the HOV lane–and we got a late start (someone had to take a shower and do her hair).

It’s about 15 degrees cooler up there so I was happy I remembered my fleece jacket. We actually ran into some rain on the way up. Rain!

We ventured to Jerome for lunch, with Steve receiving just a warning–no ticket–for speeding and failing to stop at a stop sign. Jerome is an old mining and “ghost” town, about the elevation of Mount Washington, that appears to have most of its original buildings still standing, without any renovations, or if there are any, they are done “tastefully.”

Looking out the window of the bathroom at the restaurant where we had lunch I could see what was obviously a brothel in its former life. And hanging on the walls for decorations were vintage corsets and garters and things I couldn’t identify. Dan will be 90 this July–maybe I should have asked him if he knew what they were?? Without doing any research, I can say unequivocally that Jerome must have been a happening place back in the day!!

Kathy, my Pilates instructor in Vermont, is reading a book that takes place in Jerome. I’ll add it to my list of “must reads.” I can always rely on her recommendations.

In our absence (she must have been afraid I would buy another t-shirt), Joy visited Goodwill and brought home two “new” jigsaw puzzles. While she and Steve were busy carting Tyler to football practice and Haley to gymnastics, I was occupied with setting up one of the puzzles. Although we had vowed not to do another puzzle after the last one, Joy, Haley, and I didn’t hesitate to gather around the dining room table for an hour and work on the new one. We refrained from getting out the head lamps this time but we certainly could have used them. I imagine my writing group members will identify this as creative procrastination. I suppose I could have been out shoveling snow as I know some of them were!!

No word from my doctor on the results of the CT scan or the blood work. Tomorrow I will call as they don’t seem to be the ones to initiate the calls. Did I mention how much I miss DHMC?

Gratitude

Adrenal Cancer, Cancer, Family, Surgery, Writing November 27, 2013 Comments: 7

I can’t think of a better time than the day before Thanksgiving (I’ll be a little busy cooking on the actual day to post) to acknowledge all of the people I am grateful for, can you? It’s been quite a year—I spent Thanksgiving in the hospital last year and I don’t think I was even able to eat anything that day. Unfortunately my family was subjected to eating in the hospital cafeteria (though the food is pretty good there).

Of course, family comes first. My husband’s last day of work is today. Never would have thought I would be retired before him, though only by a few months; after all, he is four years older than I am! I’ve put him through a lot this past year but I can’t remember him complaining once. He’s my hero, my rock. My three daughters have all managed to fit time into their busy schedules to keep track of and support me and if they can’t be here, they and their families keep in touch via FaceTime. My mother’s nightly 7 p.m. phone calls have kept us connected—she keeps me posted on what she ate for lunch at the Senior Center! My extended family has all been there for me as well (sisters, in-laws).

How could I have managed without all of my friends this past year? They were here for me before my surgery and during my six weeks of recovery after the surgery–and they haven’t given up on me. My “work” friends even surprised me with a turkey dinner (a craving related to being deprived of a Thanksgiving dinner last year) to celebrate my birthday this month!

My doctors, Dr. Seigne, Dr. Ernstoff, Dr. BelBruno, Dr. Homan, and all of the many others who made my surgery and stay at DHMC a success (fingers crossed!) are priceless. I’m so appreciative of the wisdom, albeit it remotely, of Dr. Hammer at the University of Michigan, as well as the willingness of my doctors here to value it.

My writing group has helped me focus on what’s important to me. No paycheck comes from the time I invest in writing, and yet it’s the hardest work I’ve ever done in my life. It’s what I do just for myself, it’s my “dream.” Not come true by any means…especially since I will NOT succeed at NaNoWriMo this year.

Mainly I’m grateful that I am still alive, and cancer-free, after one year, and here to enjoy cooking another Thanksgiving dinner, surrounded by family and friends and food.

Betsy Ross Reincarnated??

Adrenal Cancer, Cancer, Mitotane, Surgery, Writing November 21, 2013 Leave a comment

One year ago today was a momentous day for me–I was operated on for adrenal cortical cancer. My CT scan this October was stable. I met with my oncologist yesterday and my endocrinologist on Monday and everything appears to be fine. I guess that means I am one year with no evidence of disease (NED)!

The only issue is that damn mitotane that I am taking to try and keep any possible microscopic cancer cells from growing. It’s nasty stuff! And the long-term side effects are of major concern. But I’ve reconciled myself to the mitotane being the lesser of two evils.

Unfortunately, I don’t really know if the mitotane is working. It is effective in only 20-30% of those who subject themselves to it. Would I still be NED at this point without taking the mitotane? If only there were more than 350-500 new ACC patients a year, if only ACC were not an ultra-rare cancer…yet given all that, there is ongoing research for new treatments, for which I am extremely grateful.

And with Thanksgiving a week from today, it’s a good time to think about everything I am thankful for. (Why wait for a holiday to do that?) More on that to come….

Betsy Ross

Betsy Ross

To celebrate my one-year anniversary, I have spent the morning doing something just for me. I submitted my initial contact to the Daughters of the American Revolution. My fourth great-grandfather, Edmund Welch, served in the Revolutionary War. He was in the battle of Lexington/Concord on April 19, 1775, the battle that started the war, and served for various periods of time after that. I know this not from ancestry.com but from a genealogy book that has been in the family for years. This is a fact I seem to have missed all of these years yet I have always felt an affinity for the Revolutionary War (even thinking at one point that I was Betsy Ross reincarnated—really!). I know the process for being accepted into the DAR requires a lot of work so it may take me some time to complete it. I am hopeful that the fact that the genealogy book is on file in the library of the Daughters of the American Revolution in Washington, D.C. will expedite the process.

Update on NaNoWriMo: I don’t think I will hit 50,000 words by the end of the month as I am currently at just under 10,000. I have no explanation or excuses unless laziness qualifies….

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.

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!

Nothing to worry about

Cancer, Mitotane, My Novel- Anne July 24, 2013 Leave a comment

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

Cancer, Writing July 12, 2013 Leave a comment

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?

One In A Million

Cancer, Mitotane, Surgery, Writing July 1, 2013 Comments: 3

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?

%d bloggers like this: