Tag Archives: mitotane

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!)

 

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…..

“That’s the biggest black widow spider I’ve ever seen!”

Family, Mitotane, My Novel - Claire, Writing March 17, 2014 Leave a comment
Luke AFB Air Show

With AZ grandkids at Luke AFB Air Show

Which is what you don’t want to hear your daughter say when you are standing by the door to the casita (guest house). After we all admired it, Joy killed it with a sandal. No more leaving the front door wide open!

We had just finished entertaining Joy and family with our photos from our trip to Hawaii. The kids enjoyed the whale watch photos and we adults found ourselves discussing Pearl Harbor and the similarities to 9/11. I particularly was drawn to the pictures of the ocean, which conjured fond memories of me floating on the waves…..

Saturday Steve and I and the three kids spent three hours in the car traveling to Luke Air Force Base to brave the 100,000+ crowd at the air show. It was a production getting to the flight line but we all agreed it was worth it just to see the Thunderbirds perform. I wore my NaNoWriMo 2011 Winners Circle t-shirt for writing motivation.

And it worked. Sunday, instead of going to see Mr. Peabody and Sherman with Joy and Haley or Need for Speed with the men/boys, I stationed myself at Paradise Bakery and, like a real author, wrote. Longhand in a composition notebook. Granted, if a movie would have been playing that I wanted to see, I might have found myself inside a dark theater rather than outside enjoying the sunshine under an umbrella eating black bean soup and writing. And eavesdropping on the couple next to me–something about Boston and three-inch heels and snow.

I free wrote for a few pages (most likely stuff for a blog post that I should be checking right now!) and then I started on Claire. I outlined three different scenarios for the climax, already knowing which one I will go with. And already knowing that easily could change. After the movies, Steve and I took Lucas to purchase his tenth birthday present (a skateboard). He writes fantasy and loves to read. I presented my elevator spiel. Steve said he likes it (and he’s not just saying that) and when am I going to finish it?? Lucas seemed interested in the plot and asked that I change one of the main characters’ names to Lucas.

Since our return from Hawaii and my resumption of mitotane, I find that I am nauseous frequently. Except when I am eating, naturally. I don’t want to buy a new wardrobe one size larger–I just bought one for our trip. I have blood work on Tuesday for my endocrinologist in NH and on Friday I see the oncologist where I will have my mitotane level drawn. It’s possible I am in the toxic level again. Last doctor’s appointment before I return to my “home” at DHMC in May for my quarterly CT scan. (April’s blood work will be done in Virginia.)

Hard to believe our winter is coming to an end….Joy and family leave for CT in ten days while we will stay on for a few weeks. That now may be dependent upon how many black widows have made their home outside our door.

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….

Perfection Paralysis

Cancer, Mitotane, My Novel- Alex, My Novel- Anne, Writing, Writing Group July 27, 2013 Leave a comment

I woke up this morning dreaming about Anne. Just like most dreams, two hours later I have no idea what it was about. But I see it as a good sign—I am immersing myself in Anne’s life, which can only help me with my novel.

In reality, I don’t need more plot ideas or character background. I have all of that. What I am lacking is the motivation to sit down and write. “Seat of the pants to the seat of the chair.” Steve threatened this morning to make me stay at Joy’s cabin until I finish the novel. He will come and visit me but I won’t be allowed to leave!

As though in 39 years of marriage he has ever been able to “make” me do something. He asked how close to completion is the novel? 90%? I must have really fooled him about the progress I have been making on the book. I only wish I were at 90%…or even 50%.

My excuse when I was working was that I didn’t have time to write. So what’s my excuse now that I am retired? It’s the same one that has always been the source of my procrastination—perfection paralysis.

When I was working on my Alex novel, I wrote a diary that was not going to be part of the book. Its purpose was to provide backstory, to help me understand how Alex got to where she is. The patient members of my writing group were the only intended audience so (no offense) I wasn’t plagued by the need for perfection. The ideas flowed. I looked forward to writing at the end of my work day.

Now I don’t work. And yet I don’t write any more than I did when I had a job—maybe less. Time to fix that. For, unlike Mick Jagger who just turned 70, I don’t have a career spanning 50 years to look forward to. How fair is it that someone who has lived his lifestyle is now 70 and healthy, (even the epitome of “70 is the new 50”) when I, with my (almost) squeaky clean life, am diagnosed with adrenal cancer at 57?

There is good news along the way. According to an ultrasound last week, I have a “good-looking” thyroid. And the cyst on it is just a cyst. Nothing to worry about—50% of people have them. I’ve also dropped my mitotane consumption (once again) from 5 to 4 pills a day in an effort to lessen the side effects.

With the good comes the bad. Next week I visit the dermatologist because of a suspicious mole or two. Wouldn’t be much of a concern if not for the two melanomas I had removed back in 2002. The appointment with the dermatology surgeon for the following week is already scheduled. Hoping that it needs to be cancelled…..

Nothing to worry about

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….

 

Back to Normal

Cancer, Family, Mitotane, Writing July 15, 2013 Comments: 2

Back to my regular schedule with Steve at work after a two week vacation (his first ever!) and the girls and families returned safely to Arizona and Virginia. Steve’s brother and his wife are staying at the cabin a while longer but four of their daughters and families have headed home to PA and Maryland. As wonderful as it is having them all here it’s such a whirlwind that I can’t help but feel a sense of relief now that it’s over. I imagine they all feel the same way.

It’s hard for me not to wonder if this will be the last 4th of July that I share with everyone. My daughter the PA chastises me when I even dare to voice such an idea. She says I need to accept that the surgery cured me—I no longer have ACC. And why do I take mitotane with all of its side effects she asks. She sounds like my oncologist.

There isn’t proof that a regimen of mitotane for Stage 2 ACC patients is beneficial. But the experts at the University of Michigan that I have decided to rely upon recommend it for three years.

So I am heeding their advice despite the spells of vomiting, diarrhea, and nausea that I experience, one of which I had over the holiday. I thought it was self-induced as I couldn’t restrain myself from eating the typical patriotic fare: hot dogs, macaroni salad, cole slaw, chili, chips and dip (instead of my usual Campbell’s chicken noodle soup and pumpernickel with cream cheese). And don’t forget the s’mores.  But who could resist those?

Turns out what I ate may not have caused it. My latest mitotane reading put me in the toxic zone so I am now on a mitotane vacation for a week!! And then I get to reduce my dosage by two pills a day. Anxious to see the impact on how I feel.

Eleanor from my writing group emailed me, asking how my writing was going before she acknowledged that with all of my family around I probably hadn’t done any. It’s heartening to have others come up with excuses for me, saving me the effort. My own excuse is that I have projects, too numerous to list, to catch up on. Since I’m not working, I should still have a block of time that I can devote to writing.

Yet which of my in-process writings will I work on? Wouldn’t it be nice to pick one and finish it?              

Turkey Dreams

Mitotane, Writing July 1, 2013 Leave a comment

Last night my first eight “testing the waters” blog entries were critiqued by my writing group. Their comments were encouraging but I can’t help wondering if it is sympathy due to my cancer… self-doubt always trumps being able to graciously accept compliments. John distributed samples of blog postings, which I read when I got home. Some were truly atrocious. I am confident I can produce something worth reading yet will my blog become my focus, taking time away from my “real” writing? I feel (hope?) that the blog will more likely prime the pump, dragging me to my laptop, away from my beloved HGTV. Yet this morning I am struggling with this post and only CNN is on with the volume down to 1.

thanksgivingdinner

I awoke this morning to a dream of a turkey dinner being prepared for me, Thanksgiving I think, and the cook was heating up the package of squash that I have kept secured in my freezer for months, not for a turkey dinner but in case I wanted to make squash soup.

 

Who am I kidding?

I have prepared so few meals since my surgery that it is more likely the squash will be heated up as is and eaten with a grinder from Village Pizza than that it will be transformed into an appetizing soup. I am certain the dream arose from our discussion last night about my post pitying my family for having to eat Thanksgiving dinner in the hospital cafeteria. It’s too early in the morning to be talking turkey—I haven’t had my raisin toast yet or my yummy mitotane/hydrocortisone/ondansetron/metoprolol/pantoprazole/loratidine dessert! Remember, magic resides in those pills.

Dow has dropped 353 points over the past two days. Ouch. Now that I am retired this means a heck of a lot more than it did when I was still working.

James Gandolfini dropped dead in Italy yesterday. Apparent heart attack. I, at least, am forewarned. A young woman on the ACC Compassion site has died. She was forewarned. I hope she was able to take advantage of her remaining time to squeeze in a full life, albeit condensed. Not likely if she was undergoing treatment.

Quality of life and all that.

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