Tag Archives: adrenal cancer

It’s been a while….

Adrenal Cancer, Karen Whalen, Thursday Night Writers Group Blog, Travel October 22, 2015 Comments: 2
Cruising Alaska

Cruising Alaska

You may have thought that I never made it home from Alaska but I’m back!! Since late June, that is. When summer in NH was just making its appearance, we returned from the trip of a lifetime. Or not. It seems as though we say that about every trip that we take–Hawaii, Alaska, and, next summer, a 17-day river cruise from Amsterdam to Budapest!!

Glaciers, whales, panning for gold (our $17 worth is locked away in our safe), a train trip to the Yukon, Denali Mountain (we were sad to be among the 70% who don’t see it), the Red Onion Saloon (unable to elaborate as this is a G-rated

Mendenhall Glacier

Mendenhall Glacier

blog), wildlife (a dead porcupine strapped to the top of a car), forest fires (smoke was overwhelming in Fairbanks), an earthquake–we experienced it all on our cruise/land tour of Alaska! Despite all of this–or maybe because of it–we loved our time in Alaska. We have 1,000+ pictures to prove it.

We met interesting people from around the world, mainly by asking if we could take the two empty chairs at their lunch table. Our dinner mates were two brothers and their spouses from Michigan. Last week we returned from an Adrenal Cancer Symposium in Ann Arbor, Michigan, spent a night with one of the couples, and went out to dinner with all four of them. It was as though we had just left Fairbanks a few days ago.

The Adrenal Cancer Symposium was amazing. Over 200 doctors, researchers, and patients came together to learn about the latest developments in diagnosing and treating this rare, orphan disease. We became acquainted with many of the patients and advocates attending, all of us with unique stories about the disease we share. Dr. Gary Hammer, the amazing head of the University of Michigan’s Hammer Laboratory, managed to be everywhere during the symposium. I hope he is on vacation this week, somewhere with sunshine, waves, and an “all inclusive” band around his wrist!

We did enjoy the hot summer here with trips to Cape Cod, Ogunquit, and Rye Beach. Only managed to get our kayaks on Long Pond once. Didn’t make it to Bar Harbor/Acadia National Park, Nova Scotia/Prince Edward Island, or Martha’s Vineyard, but you have to stay home once in a while. Don’t you? Steve has given up on his motorcycle (anyone interested in buying a great Harley Davidson??) and is now obsessed with his 2004 soft-top Jeep Wrangler. And so am I.

Sad to report that I took the screens off the windows today. We’ve had a few killing frosts (19 degrees one morning) and the foliage has either turned a dull brown or has been blown to the ground. What I consider to be the best season in NH–summer–is over. My husband claims the best is fall. Neither one of us is a fan of winter (anymore? were we ever?) so we have decided to head out early this year and spend our first Christmas in Williamsburg (Colonial Williamsburg should be beautiful) then it’s off to Arizona for sunshine, blue skies, and dry heat.

If you’ve been following my writing group’s blog, Thursday Night Writes, you’ll know that I’ve kept up my writing but still struggle to complete any of my projects. NaNoWriMo starts up again November 1 (I was unsuccessful in reaching my goal in Camp NaNoWriMo in July) and I plan to participate. The gray days of November and a TV diet just might help me achieve my 50,000 words.

Guess you’re caught up….funny how you can condense an entire summer into fewer than 600 words!

Alaska here we come!!

Adrenal Cancer, Cancer, Family, Karen Whalen, Mitotane, Thursday Night Writers Group Blog, Travel, Writing, Writing Group June 5, 2015 Comments: 11
Enjoying the LPGA at Kingsmill Resort in Williamsburg

Enjoying the LPGA tournament at Kingsmill Resort in Williamsburg

We arrived home safe and sound on May 20 after spending a few short, busy and FUN weeks with Jennifer and family in Williamsburg (and my sister from Virginia Beach and niece from DC). The weather was great–except for when it had to rain. We joke that if they need rain down there, just invite us to visit–the rain won’t be far behind! My Fitbit got a good workout with walking the three dogs and keeping up with Laurel and Alex.

I had thought I would work on my story, “The Intruder,” which is sort of set in Jennifer’s house and the surrounding area. I never got further than thinking about either the story or having Steve tie me up to the newel post in the garage to test out the lawn edger string. (See my Thursday Night Writes blog post “Just Write It“!)

Love being back home. Oh, if you don’t count the weather. Hot one day, rainy and cold for the next three. Definitely have missed all of our friends and family. Sheffield and Elise have grown up so much since December!!

We are now embarking onto another countdown–preparing for our cruise and land tour in Alaska! (Is there a person who has done this who wouldn’t do it again? If so, I haven’t run into them.) We leave the end of next week and I am nowhere near ready. It’s all about the clothes–how do you pack for a region where the temperatures have been fluctuating between the 90’s (record highs) and the 30’s and snow?? (I’ve decided that fleece gloves and headband are a necessity and they won’t take up too much precious space in my suitcases.) “Layers” is the advice I get from those who have done this before.

I have submitted my story “Jamie” to my writing group several times since our return from Arizona. I chuckled when I read the comments after our session last night. On some areas there is a consensus on what works and what doesn’t–yet on others, one member might like something and another might not. It’s as though I had six editors reviewing my work. Oh, it’s not just me. Everyone in our writing group runs into the same thing. One of my biggest downfalls is that I know inside my head what is happening inside my characters’ heads but I am not adept at getting that onto paper. Yet.

Since our return we have been busy with doctors’ and dentist (no cavities!) appointments. I met with my endocrinologist yesterday at DHMC. Nothing new except my left adrenal gland is finally starting to shut down. After slightly over two years on mitotane! She was pleased with that–and so am I. I’d hate to think that all of the nausea and fatigue was for naught. As it was Thursday, we had turkey in the cafeteria. The allure is finally wearing off and I didn’t even finish my meal. Shocking.

My oncologist visit is the day after our return from Alaska–who thought that was a good idea? I see my primary care physician in July, when we will discuss scheduling the dreaded colonoscopy. (I’m on the five-year plan.) Haven’t I been through enough?

Can’t wait to tell you all about Alaska…but that will mean the trip of a lifetime is over…except we already are planning on a river cruise to Europe next year!!

Making myself “right”

Adrenal Cancer, Cancer, Family, Uncategorized, Writing May 13, 2014 1 Comment
Making myself write

Making myself write

I told my daughter, Jennifer, that I was going upstairs to “make myself write.” She thought I meant I was going to “make myself right.” If only I could do that. If only any of us with adrenal cancer (or depression or heart disease) could just make ourselves better by announcing we were going to do just that.

Coincidentally, (and I am not certain that there are any coincidences), my granddaughter, Laurel, is studying homophones in second grade. Words that sound the same but are spelled differently and may have different meanings. “Right” and “write” definitely qualify.

Writing may not cure my cancer but it does help make things right in my head. I feel better about myself when I put words down on the page, even if it’s just garbage. And as we writers know, what looks like garbage today might shine like gold tomorrow.

Coincidentally, (again!), I am reading “The Right to Write” by Julia Cameron. Actually, I am rereading it. It was published in 1999 so it may have been 15 years since I first read it! I gave my original book to my sister-in-law and by chance ran into a used one at Changing Hands Bookstore in Tempe, AZ. At the bargain price of $6.95, I was lured into buying it. When I got home, I found out it had once belonged to (an unknown to me) M. J. Reck, who had made notes and underlined sections in the first two chapters of the book.  Then nothing. I am usually loath to mark up my books but M. J. seems to have given me permission to do just that.

I have discovered that reading the book relaxes me. I don’t remember it having that effect the first time around (I was much too earnest) but now, when I am amped up over Candy Crush or Words with Friends, I can read this book and literally feel my blood pressure drop.

What I particularly like about Cameron’s approach is that you don’t need to have a large block of time to write. Train yourself to grab your ten minutes here and your half-hour there of writing time throughout the day. It’s a luxury to have hours at a time to write.

Yet I have those hours and still don’t write. I know the problem. I’m a perfectionist, which leads to procrastination…..Maybe if I only allow myself ten minutes to write, I won’t expect perfection. Haven’t we already been down this road? (July 27, 2013 post “Perfection Paralysis”)

Almost Home

Family, Mitotane, My Novel - Claire, My Novel- Alex, My Novel- Anne, Travel, Uncategorized, Writing, Writing Group May 7, 2014 Leave a comment
Biltmore Estate

Biltmore Estate

In case you were wondering, we did make it to Virginia the day before Easter. It was a long trip but we enjoyed several of our stops, especially the Petrified Forest in Arizona, Nashville and Asheville. On Judy’s recommendation, we visited the Gaylord Opryland Resort in Nashville. So glad we did–it’s a massive resort with beautiful indoor gardens and waterfalls.

Jesse secured us the family discount at the Omni Grove Park Inn in Asheville, NC. A one hundred year old magnificent hotel with manned elevators–two of which are in Ripley’s Believe It or Not for being inside the chimney of the massive fireplaces. And we rode in them!

The absolute highlight of the trip was a visit to the Biltmore Estate in Asheville. (Unfortunately, we toured it with what felt like thousands of other people–it was the Friday of Easter weekend.) Downton Abbey in the US for sure. The PBS series helped me relate to what life at the Biltmore would have been like (and vice versa). As we wandered the property, I kept thinking how much I would have enjoyed being a guest there. I hope to get to another estate–Mount Vernon–before we leave Virginia.

I am still recuperating from my long weekend at Malice Domestic in Bethesda. It was great to reconnect with Eleanor, Heidi, and Linda after almost five months away from my writing group. My niece, Casey, and her boyfriend, Andrew, joined us for lunch on Sunday. As they live in DC, I did get some inspiration to resurrect my NaNoWriMo novel, “Alex.” The good news/bad news is that I am now thinking about linking my other two novels, “Anne” and “Claire.” And making “Anne” into a murder mystery. Somehow. That’s what happens when you spend three days with mystery writers, the majority of whom have written series. I’m making notes and attempting to process this concept but will rely on my writing group to help me decide if this is even worth putting any effort into.

Waiting to hear what my last mitotane level was. It’s been over two weeks since I had the labs done. This is what happens when you’re away from your regular doctor and medical facility. Must say the medical part has been what has caused me the most stress this winter.

Steve is anxious to get back to NH. I’m not. He wants to golf more than anything–but he claims he wants to do things like use his pressure washer (that he got for Father’s Day last year!). I am happy to  be responsible for just a wee bit of living space. Right now it’s a bedroom and bathroom. I don’t have to worry that the floors need to be vacuumed or the dishwasher emptied though I do try to do my share of cooking, cleaning, and laundry. Babysitting is not a chore! But I am anxious to get back to my NH family (Elise and Sheffield!!) and friends. Maybe buying the fifth-wheel was the thing to do…..

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!

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.