Tag Archives: ACC

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!!

Finally writing!!

Adrenal Cancer, Cancer, Family, Mitotane, Writing, Writing Group January 23, 2015 1 Comment

Made it to warmer weather and Arizona—it’s been in the 70’s during the day with yesterday and today the exceptions at a high of 67. This weekend is going to make up for the “cold snap” by flirting with 80. Yes, friends and family back in NH, I said 80. And it has been sunny every day, naturally. Two nights ago we did have sprinkles with a smile of a rainbow in apology.

Last night I finally garnered enough strength to start thinking about writing again. I realize

Finally writing!

Finally writing!

that writing is not a physical activity, not like football (go Patriots!!), but for me it still takes both mental and physical stamina to even attempt it. If only the act of opening the laptop weren’t so daunting, I might have completed a novel or possibly a short story by now. Completed means revised….not shitty first draft. I’m overloaded with those!

My writing group back home is starting a blog. I’m trying to participate via email but I’m not certain if I, someone who claims to be a writer, am conveying my ideas coherently. Being in contact, albeit through email, reminds me how much I miss my writing group. Without them I would be a reader not a writer.

Next Friday I have my first appointment with the same oncologist I saw here last winter. Amazing what a difference a year makes. Last year I was intimidated to see a new doctor. Possibly afraid. This past year I have spent hours on various ACC Facebook pages, learning while wondering if what I am doing is the right treatment. Should I continue with the Mitotane after two years without a recurrence even though it is negatively affecting my quality of life? That is where the fear enters. If I stop, will it come back? If I continue, am I damaging my body unnecessarily? A fellow ACC warrior back home died recently. I had spoken with her on the phone and via Facebook. She was diagnosed after I was, had surgery then opted for a natural treatment regimen instead of toxic chemotherapy. This is why I am torn between the two courses of action. I have started my list of questions for Friday, hopeful that I leave with answers and not more questions.

Busy time here in Phoenix—the 2015 Pro Bowl is this weekend, the Patriots arrive Monday (hopefully!), the Waste Management Phoenix Open Golf Tournament starts Thursday, and the Super Bowl is next Sunday!! And just think, I’ll be busy writing……relaxing in the sunshine…..drinking Lemon Drops made from freshly picked and squeezed lemons…..while the sports fans in the family are out doing their thing. (That is what you call “rubbing it in” just in case you didn’t recognize it!)

 

Westward bound!

Adrenal Cancer, Family, My Novel- Alex, Travel, Writing Group January 6, 2015 Comments: 3
Christmas Bonfire

Christmas Bonfire

We enjoyed the holidays and are now in Virginia with Jennifer and family on the first leg of our trip to Arizona. My favorite part of Christmas? For a few weeks being able to get up every morning, drink a cup or two of coffee, and watch the news with the Christmas tree lights plugged in. And, of course, I loved getting the tree at Windy Ridge with Elise and Sheffiled (even though it was bitter cold), watching the Blue School Christmas program in Landaff, hosting our Welch family celebration with Yankee Swap and bonfire (no singed eyebrows), opening presents with Jesse and family at breakfast Christmas morning, cooking dinner on Christmas Day, and celebrating a second Christmas with Jennifer, Jeff, Laurel, and Alex and my sister, Bessie.

What didn’t I like? Packing up to leave for a winter away and preparing the house to be vacant followed by a fifteen hour trip to Virginia. Apparently the Saturday after Christmas was a popular day for people to travel home from the holidays and for those pesky snow birds to head south!

While Jennifer’s girls were on winter break we took them to the Abby Aldrich Rockefeller Folk Art Museum at Colonial Williamsburg. Sunday we toured Mount Vernon, a place I have wanted to visit for years. We chose the warmer day of the weekend to visit Washington’s home–it was in the 60’s with some drizzle and mud.  Imagine seeing the bed that George Washington died in! After our visit Jennifer researched his death and it appears that the doctors prior to his death removed the majority of his bodily fluids through bleeding, inducing vomiting, and giving him an enema. (George himself was

Mount Vernon

Mount Vernon

proponent of bleeding.) We wonder if their ministrations could have contributed to his death at sixty-seven. She also found out a lot about his ownership of close to 400 slaves. Unfathomable.

On our way home Jennifer surprised the girls with a trip north to the American Girl Store at Tysons Corner Center, where their dolls had their hair done. (Like a real hair salon!) I was slightly embarrassed to traipse through an upscale mall in my muddy jeans and shoes.

I hate to admit that this is the only writing that I have done since I “won” NaNoWriMo, aside from a writing exercise during my writing group and posting to an ACC Facebook page. That is one of my problems with NaNoWriMo–it depletes me of any desire to write. The holidays don’t help, either.

However, Williamsburg is the setting of a short story that I never finished and close to Tysons Corner (Alexandria) is where part of an unfinished novel is set. When I’m so close to those locations, I wonder if I should complete those projects. Or is deleting them from my computer the more humane approach?

Incredibly we start our trip to Arizona this coming Sunday. It never seems as though I get enough time at Williamsburg though this cold snap (Thursday might tie a record low at 26) does make me yearn for warmer weather…..

 

 

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……

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….

I’m a winner!!

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

NaNoWriMo Winner Certificate 2011

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

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

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

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

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

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

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

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

What a difference a day makes

Cancer July 19, 2013 Comments: 2

But does it? Yesterday was supposed to be my routine three-month scan at DHMC. Confirmation that I am one of the 20-30% of ACC patients who respond to mitotane. Whose cancer is kept from recurring by enduring the side effects of a DDT derivative.

We were disappointed that the CT scan report was not available by the time we met with my oncologist but we were pleased that he was able to bring up the scans on his computer.

We weren’t so pleased when he pointed out the arrow the radiologist had inserted next to the cyst on my thyroid. A new cyst? No, he was able to show us that it was on the April CT scan. It just happens that July is when the new batch of residents arrive with a fresh perspective on old problems.

The issue is that neither of us remembered hearing about a cyst on my thyroid. (And when I got home and reviewed the prior CT scan reports I found no mention of a cyst there either.) My oncologist “reassured” us that people have thyroid cancer and die of other causes without ever knowing they had it.

Somehow that was not reassuring. Seems as though that is what we’ve read about ACC. But it’s not my situation.

And the lesion on the liver. Another shocker. I can’t seem to find that in the prior CT scans but daughter Joy thinks that has been there right along.

The scan should have been read by today. My oncologist goes on a two week vacation next week. (My cancer has been a series of timing issues.) Luckily I see my endocrinologist next week. She should be able to address the thyroid cyst. She will address it.

And then there’s the atypical mole on my back, circled in black marker by my oncologist. It might not be so bad if I hadn’t already had two melanomas removed (11 years ago).

Am I worried? Not really. I know liver issues can be addressed in many ways. I probably won’t die from thyroid cancer. The mole, if a melanoma, most likely will be Stage 1 and require no further treatment other than removal.

I am disappointed. We had already decided that we were not going to overreact if anything new came out of the CT scan. Take our time and weigh our options. But deep down I was confident that there would be nothing new. And now there’s a thyroid cyst. And a liver lesion. Supposedly these aren’t new. Except they feel new.

So is today really any different than yesterday?

This morning I started a gentle yoga class. Not looking for a physical experience. Looking for the serenity to accept the things I cannot change. And the courage to change those I can.

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