Category Archives: Adrenal Cancer

But it’s a dry heat…..

Adrenal Cancer, Travel, Writing, Writing Group April 8, 2014 Comments: 6
Time to get in the pool!

Time to get in the pool!

In case you haven’t been keeping up with the weather forecast in Arizona (not to rub it in to our friends and family back East), we hit 95 today, the first ninety degree temperatures of 2014. And it will last through Friday. It may even flirt with 100 degrees. But, as they like to say here, it’s a dry heat.

We just happen to be heading north to Las Vegas on Wednesday where it is forecasted to be much cooler–the low nineties. As I recall from my one and only visit to Las Vegas (granted, it was August), that is one hot city. And it just feels more like the desert than Chandler, Arizona does.

We are flying up for the night to see Elton John perform at Caesars Palace. A short one hour five-minute flight. Granted, we’ll miss the Hoover Dam experience by not driving up but the flight is free. (Thanks to my Southwest VISA card!)

I am so excited to show Steve Las Vegas. Not that we are gamblers or drinkers. OK–I could get addicted to the slots but I can depend on Steve to drag me away.

To prepare him for the trip, we watched “Last Vegas” via our Apple TV. Definitely worthy of an Academy award. NOT! But it was entertaining. It probably helps to be our age to appreciate the movie. The other day we actually “argued” about what day of the week it was–forgetting to check either our watches or our iPhones! I imagine our children are wondering if it is time to check out nursing homes but I can assure them it is way too early for that! (They all have guest rooms, don’t they?)

Have to admit we are enjoying retirement. I especially like playing Candy Crush (93 million people a day play it) and Words with Friends and reading as late as I want (Steve doesn’t even complain), which means sleeping as late as I want (again, no complaints), drinking a leisurely cup or two of coffee, going to lunch (Sunday it was San Tan Brewing Company–jalapeno bratwurst hash for brunch–almost as hot as the weather) and then heading out to wherever we want (after brunch it was WestWorld in Scottsdale celebrating Arizona Bike Week). Steve is painting and enjoying the weather.

We leave for Virginia next week, stopping in Albuquerque, Nashville, and Ashville along the way. Looking forward to spending time with Jennifer and family in Williamsburg, meeting up with the ladies from my writing group at Malice Domestic in Bethesda, MD, and visiting Joy and family in CT. And then HOME (after almost five months away) just in time for my CT scan at DHMC. Eighteen months to the day from my surgery for adrenal cancer. Fingers crossed!

Addicted to….Candy Crush!!

Adrenal Cancer, Cancer, Travel, Writing March 15, 2014 Comments: 2
Banzai Pipeline Oahu

Banzai Pipeline Oahu

I’m not certain how much longer I can keep up this blog now that my granddaughter, Haley, has introduced me to CANDY CRUSH! How I have remained in the dark about this game for this long is beyond me. It’s a good time to provide an update on everything I’ve done since my last post as who knows how long it will be before I can tear myself away……

This past Sunday I attended a workshop at Changing Hands bookstore in Tempe, “Writing About Illness,” presented by Thomas Larson. He’s written The Sanctuary of Illness and The Memoir and Memorist. I went there with no intention of writing a memoir about my adrenal cancer but now I may be inspired to write about my journey. As Eleanor has reminded me, you can always learn something from any writing workshop.

Prior to that we spent ten days on the islands of Maui and Oahu. The vacation of a lifetime….until the next one! Highlights of Maui include a whale watch, the Old Lahaina Luau, Maui Theatre’s Ulalena, Haleakala National Park (volcano), La Perouse Bay (Maui’s last lava flow and wild goats), THE Road to Hana, and a bright blue Ford Mustang convertible! Our splurge was our anniversary dinner at Mama’s Fish House in Paia.

On Oahu, organized tours, taxis, and our feet took us to the Dole Pineapple Plantation (pineapples do not grow on trees!), USS Arizona Memorial/Pearl Harbor, the Banzai Pipeline (the Pacific was wild so no surfing), the National Memorial Cemetery of the Pacific (the Punch Bowl), Duke’s, a hike up Diamond Head (I tried to make it to the top), and the typical tourist attractions (the school President Obama attended, etc.)  We even attempted to search for my childhood home from when I was 2 to 4 years old.

I read James Michener’s Hawaii before, during, and after our trip (it’s a long book!), which helped immensely with understanding the history of the islands, as did our visit to the Polynesian Cultural Center on Oahu. We were surprised at the number of Asian tourists in Oahu. (Much of the signage in Waikiki Beach is written in both English and Japanese.) Actually, we were surprised at the swell of tourists in Oahu compared to Maui.

Jen, Jeff, Laurel, and Alex were able to visit us in Arizona to celebrate both Valentine’s Day and our 40th wedding anniversary. We enjoyed dinner at our favorite East Valley restaurant, San Tan Flat, on our actual anniversary. It was crazy busy due to President’s Day holiday but that just gave us more time to drink Margaritas and dance.

Other than that we’ve enjoyed reading the Facebook posts of our friends back in NH and VT complaining about the terrible winter they have been experiencing–as we bask in the sunshine and 70-80 degree temperatures. We’ve read a variety of books–I am juggling four currently. Put jigsaw puzzles together. Walked around the Nature Park. However, one thing I haven’t done much of is write. Too many distractions. And now….Candy Crush!

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?

Starting to get serious about writing–once again

Adrenal Cancer, Cancer, My Novel - Claire February 4, 2014 Comments: 6
San Tan Mountains

San Tan Mountains

I feel guilty even writing that we have been enjoying temperatures in the 70’s during our stay in Arizona while the rest of the country seems to be mired in yet another round of snow storms after having survived yet another polar vortex. (Not to say that we don’t cool off over night–but it’s worth it to awaken to blue skies and sunshine, even if there is a slight chill in the air.)

I met with a new oncologist a week ago Friday. He was very nice. But oh how I miss my Norris Cotton Cancer Center at DHMC. And Dr. Ernstoff, Nancy Crosby, and gang. Finally had my three-month CT scan yesterday after three calls to the not-so-nice scheduler (“I have 127 orders on my desk…”) and, I’m almost embarrassed to admit, a not-so-nice message for the doctor. Come to find out, he was on vacation. For those of you who are not familiar with my journey with ACC, it is laden with delays due to doctors who are on vacation.

My scan was at SMIL. No “e.” They were efficient and friendly. I didn’t even mind when the tech asked me if I had nipple rings! (You don’t want to know. But the answer is no.)

Now the wait for the results begins. I’m definitely spoiled by DHMC, where the doctor has the report on his desk within an hour of the scan. Funny how much we have come to rely on the results of the CT scan every three months. It’s a report card of sorts. But one with life or death significance. If you haven’t been there, I imagine that sounds melodramatic.

Today we visited Changing Hands Bookstore (and an art store) in Tempe and earlier we made it to The Poisoned Pen Bookstore in Scottsdale. We are starting to get serious about painting and writing–the two activities we have planned to focus on. I have managed to write about ten lines on my “Claire” novel and Steve has produced a first draft of a watercolor of the San Tan mountains. Our excuse is that we have been busy with the kids after school and with going places during the day. It’s wonderful to be retired and not just on vacation!

A day away from our winter home in Arizona

Adrenal Cancer, Family, Travel January 17, 2014 Comments: 3
River Walk in San Antonio, Texas

River Walk in San Antonio, Texas

San Antonio! Last stop on our way to our winter home with Joy and family in Arizona. Remember the Alamo….well, I didn’t so I had to read up on it. On our way from New Orleans to San Antonio I entertained Steve with an oral history of the Alamo. He was busy passing tractor trailers while I was busy fighting the Mexicans. Poor Davy Crockett.

And poor Steve. He’s done an awesome job of getting us this far—you can’t really blame him for all the u-turns we’ve had to make in Charleston and Andersonville, Americus, and Plains, GA, and New Orleans. There are a ton of one-way streets in those cities and occasionally it is the navigator’s error, I must admit. Sometimes I have a difficult time gauging how far away 150 or 60 feet are and oops…we’ve missed the turn. At least we no longer have to hear that annoying voice on the GPS announce “recalculating.” Our Maps app on our phones uses the more supportive “rerouting” to let us know when we (I) have screwed up.

This afternoon we’ve managed to visit the Alamo, walk the River Walk, eat yummy steak at Saltgrass Steak House and now we are snuggled in bed resting up for our 15 hour drive to Chandler tomorrow. When I mentioned to Joy that our trip through North Carolina was monotonous, she said “wait until you drive across Texas, you’ll think North Carolina was a carnival!” We will find out tomorrow…..

2014 is MY year

Adrenal Cancer, Cancer, Family, Mitotane, Writing January 9, 2014 Comments: 2
Words for the New Year

Words for the New Year

My wild and fearless daughter, Joy, has challenged her blog (Chakras in the Suburbs) followers to choose a word for 2014 in lieu of setting any New Year’s resolutions. I’ve been pondering my options for a few days now, especially in light of the fact that I already have failed to keep at least one of my New Year’s resolutions—to post on my blog on a regular basis.

A lot has happened since I last posted. I’m in Virginia, for starters. The polar vortex has come and gone–thank goodness. I’ll soon start the final leg of my journey to Arizona. To warmer temperatures-thank goodness. Though I hate to leave my granddaughters after two short weeks, I am excited about visiting Charleston, the Andersonville prison, New Orleans, San Antonio, and El Paso.

Joy chose two words. I’m not certain I can limit myself this year to just two—so many come to mind.

Gratitude: because I am over a year cancer-free and alive and able to enjoy my family, friends, and life. (Even with the problems the mitotane creates.)

Creativity: because I will write this year. Lots and lots of words.

Focus: because I will live in the here and now of whatever I am doing. Drinking that first cup of coffee in the morning. Listening to my granddaughter read her book at bedtime. Riding eight hours a day in the car until we stop for the night on our trip to Arizona…..what’s eight hours anyway when it took us 15 to get to Virginia?

Embrace: because I will open my arms and welcome whatever comes my way—new situations, new people, new feelings.

Fun: because I deserve it. Because I’ve never been very good at it—even with my best friend Judy’s prodding.

Love: because I will work at doing a better job of opening my heart to those who are close to me. For where would I be without them?

Charity: because, even with my ACC, I have so much more in my life than so many others. Compassion, tolerance, kindness, empathy, all fall within this category. Wow! This is definitely going to be the hardest word for me to work on.

Maybe making resolutions is the easy way out after all……

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….

Thank goodness for NaNoWriMo

Adrenal Cancer, Cancer, My Novel- Anne, Writing Group October 26, 2013 1 Comment
My "almost" done quilt

My “almost” done quilt

Gearing up for NaNoWriMo—National Novel Writing Month—when I am committed to writing the first draft of a 50,000 word novel in 30 days. Starting November 1, less than a week from today!! I did it once, in 2011, and that was while I was working full-time.

Shouldn’t be so hard to write about 1,667 words a day now that I’m retired, right? Unfortunately, I’ve turned into one of those retired people who can’t imagine how I even managed to fit work into my busy schedule….lunch with the ladies from my writing group….Pilates once a week and yoga sometimes…..submissions for my writing group…..noontime walks with Judy….How did I do all those things and work?

Let’s see—I do more laundry than I used to….I vacuumed the other day….I take more naps….and, um, has much of anything else changed?

I am writing this blog—that’s new, something I committed to after my surgery. I took a quilting class at Seams Sew Easy Fabric Shoppe and am sort of close to having a finished product. (Thank you, Chrissy Steeves, for your patience!! I’m not done yet…) I spend more time at DHMC at doctors’ appointments and I go with my mother and Steve to their appointments. And I’ve made more of an effort to do things for friends who could use some help. (Mainly I make batches of turkey chili.)

I try really hard to write more. I was working on my umpteenth revision of “Anne,” after vowing to complete that version before the start of NaNoWriMo. Well, that never happened. Not even close. But I worked at it, every day, which was good preparation for NaNoWriMo. Then our wonderful vacation to Arizona disrupted the flow. Totally worth it, however.

The big change is in my attitude, in my approach to the daily tedium of life. I’m less hyper, more relaxed, as others have felt free to point out. Yet sometimes I wonder if I shouldn’t be the opposite. With my adrenal cancer diagnosis and the remote chance that I won’t live to be 90 years old, shouldn’t I be more amped, more energized, more productive? Shouldn’t I try to cram as much living into every day, every hour, every second? Nah, I think I’ll just take it as it comes, do what I feel like when I feel like it.

Thank goodness for NaNoWriMo.

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.

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