Category Archives: Family

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…..

“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.

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……

It wouldn’t be Christmas without a real tree

Family, HGTV/DIY/Design, My Novel - Claire, Writing December 1, 2013 Leave a comment

28189-beautiful-christmas-tree[1] December 1. Steve’s official start of retirement. A day to celebrate. Under normal circumstances, I would be jealous, looking forward to another four or more years of work while he stayed home, completing his honey do list and puttering around the house. Nothing normal about our current situation. We’re both retired, home together, 24/7.

We have only one vehicle now. Already we are missing the company truck. Can’t just run and get a Christmas tree, throw it in the back of the truck. This year we borrowed Chris’ truck and took Elise with us to Windy Ridge Orchard to cut our tree. I’ve thought about buying a nice artificial tree (we put a cheap one in the gazebo that caused a few arguments as it was being assembled) but I can’t quite make myself do it. I like real ones. It wouldn’t be Christmas without a real tree.

Last year Steve and Sheffield bought an already cut one while I lay on the couch recovering from my surgery. It was not what you would call a pretty tree although he claimed it was the best one in the lot. I recall that Steve and the grandkids decorated it. I didn’t much care what it looked like. But I definitely cared that we had one. It meant that everything was normal. Even though it wasn’t.

This year everything is pretty close to normal. Except we are preparing for our trip to Arizona and packing up the house so that our contractor can renovate the kitchen and install new tile in the mud room. And I get to tear up the old tile! So excited! Our contractor even left me a real tool to do it with—a mini jackhammer. I can’t wait to get started. I’ll probably hate it or, more likely, not be able to do it, and Steve will have to take over. And all of those hours spent watching HGTV will be wasted.

Sort of like writing. It’s something I’ve wanted to do for so long and now that I have the time to do it I realize how much work it is. (I certainly can’t delegate it to Steve.) So it doesn’t get done. That’s why I didn’t “win” NaNoWriMo (yesterday was the deadline and I never got beyond 11,000 words). But I did get a good start on a novel that I like and that I hope to complete – “Claire.” Eventually. Even with Steve hanging around the house…….

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.

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.

It’s always nice to come home

Adrenal Cancer, Cancer, Family, Writing October 16, 2013 Comments: 4
I love this place even though I am a rock 'n roll kind of girl!

I love this place even though I am a rock ‘n roll kind of girl!

Just spent ten days in Arizona on vacation with our daughter Joy and her family. I thought I would find time to work on my blog and on my book, to think about adrenal cancer. I didn’t end up doing any of that. OK—I did spend some time thinking about ACC, how could I not? It’s my life now, even in my Facebook news feeds. Listened to a podcast from MD Anderson of a Stage 4 ACC survivor on the trip home from Boston. Encouraging!

We were busy all of the time and I loved every minute of it. Especially the constant warm temperatures (90’s!), blue skies, and sunshine, which I blame on preventing me from sleeping. That would have been a good time to write but I didn’t–blame it on Ken Follet’s long book, “World Without End.” I can only dream about writing a book that keeps someone up until 2 a.m.

Vacation with the grandkids is always go, go, go. Football practice. Football games. Shopped at the malls, so many to choose from, so close, not like at home. Celebrated Joy’s birthday. Skipbo marathon with Haley. Yoga with Joy .

Breakfast at Liberty Market with Haley followed by the splashpad while Joy taught a class at Gilbert Yoga. Lunch at Queen Creek Olive Mill. Dinner at San Tan Flat—a blast and I indulged in one of their awesome margaritas. Not all on the same day–but we do tend to eat out a lot while we are on vacation!

Went on a trail ride at MacDonald’s Ranch in Scottsdale with rattle snakes, a rabbit, a coyote, and a runaway horse—Haley’s, not mine! My horse, Holiday, and I were a perfect match. Nice and easy……My buddy, Holiday.

Swam in the pool fully clothed with Haley. Hiked a new trail (to us) in the San Tan Mountains. Toured the Phoenix Zoo.

Met with Dave and Toni Bellin, travel agents (yes–they do still exist!) at Sunrunner Travel to plan our trip to Hawaii. (So exciting!)

Finally arrived in Boston after a disappointing boarding of our flight in Baltimore on Southwest. After several elevator rides elicited the assistance of a Massport employee to find our truck in the Logan parking lot. Rain and 47 degrees when we finally headed out onto I-93.

Vacations are great but it’s always nice to come home.

It’s okay to sweat the small stuff

Adrenal Cancer, Cancer, Family September 27, 2013 Comments: 3

Change. My life has changed immensely in less than a year, since the first doctor acknowledged there was an issue with my liver or kidney—but not my adrenal gland. So much has happened since then: surgery, being diagnosed with adrenal cancer, retiring. Dealing with the idea that I have an ultra-rare cancer that I could find out at any three-month interval has metastasized, making the focus of my life fighting the disease instead of living it to the fullest. That is change.

You can’t prepare for it nor would you want to be prepared for it. Who would want to live a dismal life like that? I have a positive attitude yet I am a realist. If those cancer cells are in my body, no matter how positive I am, they will find their way into my lungs, my liver (please not my left kidney since I only have one left). That I can’t even fathom. Are we talking about someone else? Am I the one with adrenal cancer, the one who the odds are stacked against? That is change.

Ask my husband and he will say the biggest change is I am a nicer person. 

The other day my grandson said when he pulled a handful of coins from his pocket, “look, I have change.” I truly enjoy being there for those moments. That is change.

Maybe I was never fully there for those moments, always preparing for the next moment. When people say “don’t sweat the small stuff,” I get it but on the other hand I see it differently. (I prefer “life is good.”) The small stuff is what your life is made of, so why shouldn’t you sweat it? Don’t take it for granted. Watching the kids pick apples, fixing the flat tire, making the casserole for the neighbor whose father died. It’s not the birth of your child-it’s when she takes her first step or says “I love you, mommy.” It’s not the job promotion—it’s when your boss says “thanks for the great job.”
That’s what we shouldn’t lose sight of.

Our lives are like snowballs, made up of unique snowflakes, small events, that when rolled together become something much larger than the individual snowflakes that comprise them.

That’s why it’s okay to sweat the small stuff. For a lot of us, if our lives were only comprised of the big events, there wouldn’t be much to them, would there?

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