Category Archives: Adrenal Cancer

It’s been a while….

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!

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Alaska here we come!!

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!!

The countdown has begun…

Eleven short days until we leave Arizona on our return trip home. We’re heading north this trip, spending time in some of the national parks in Utah, visiting with a friend in Charlotte, NC, and driving up the Outer Banks (I miss the ocean!). And I can’t forget Kansas….We’ll spend three weeks in Williamsburg, VA, then we’ll be back home in New Hampshire–assuming the snow is gone by then.

Taliesin West

Taliesin West

This doesn’t leave us much time to visit the places that we didn’t get to over the “winter.” Friday we toured Taliesin West, the winter home of Frank Lloyd Wright.

I previously read two novels about the women in Wright’s life, “Loving Frank” by Nancy Horan and “The Women: A Novel” by T. C. Boyle. These two books provide a slightly different perspective of Wright’s life than the tour guide was willing (trained??) to offer.

There’s no denying that he was an architectural genius. My favorite room: the breezeway!! He situated it so that you look out the back and your view is of the McDowell Mountains and out the front you look down into the entire valley of Phoenix. Also, it is designed to catch the breeze coming up from the valley, creating, I presume, a most comfortable place to write or read when the temperatures soar–assuming you can tear your eyes away from the view.

Not that we haven’t been busy since I last posted. Jen, Jeff, Laurel, and Alex were here in February. We

Friendly Butterfly at Desert Botanical Garden

Friendly Butterfly at Desert Botanical Garden

had a great time with them: the Desert Botanical Garden and their Spring Butterfly Exhibit, miniature golf, a boat ride on Saguaro Lake, a hike in Usery Park (not me….sick), the pool and the hot tub (not me….brrr), horseback riding (not me….sick). We even enjoyed a mini-family reunion with our niece, Wanda, and her two children from Maryland who happened to be here at the same time visiting a friend.

Steve and I got free passes from the local library for the Phoenix Art Museum as well as Arcosanti, “an urban laboratory focused on innovative design, community, and environmental accountability.” Paolo Soleri founded the community in 1970, which appears to rely mainly on the sale of windbells they create and tours. Soleri studied under Wright and developed the theory of Arcology (architecture and ecology), which he has applied at Arcosanti. The concept is intriguing but the execution needs work.

March was good news on the adrenal cancer front. I am now two years and four months cancer-free based on my most recent CT scan. Yippee!! Unfortunately, my mitotane level is just barely at the therapeutic range on four pills a day. As I’ve been quite nauseous and tired at that level, I’ve reduced to three pills a day. Wonder what my level will be in May?

As for our remaining days in Arizona, maybe I’ll just spend the rest of the time enjoying the rest of the time!!

 

Finally writing!!

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!

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…..

 

 

Two years and clear!!!

By Karen Whalen

Yesterday was my CT scan at DHMC marking my two-year anniversary from surgery for adrenal cortical cancer (ACC). It was clear–NO EVIDENCE OF DISEASE! Exactly what I had hoped for and expected but, hey, you never know. The cancer can return at any time.

CT Scan Cocktail at DHMC

CT Scan Cocktail at DHMC

The visit would have been uneventful except for my allergic reaction to the contrast material injected during the CT scan. At the end of the scan, the radiology technician noticed that I was rubbing my lips and, when I admitted I was experiencing an itchy mouth and swollen lips, I was suddenly surrounded by several other medical professionals and whisked off to recovery. I immediately was given a Benadryl pill followed by an IV of prednisone. After over an hour in the recovery room, I was released to a scrumptious turkey dinner in the hospital cafeteria–the reason I like my appointments scheduled on Thursday!

Tyler at the Top of the Rock

Tyler at the Top of the Rock

Today is my oldest grandson’s birthday. Tyler turns thirteen today! We now have a teenager in the family. Joy and Paul are in for some interesting and exciting (and challenging??) times, if memory serves me correctly. (And that’s not something I can rely on these days.)

My niece, Sammie, is celebrating her birthday today as well. In my family, we have multiple overlapping birthdays.

The 50,000 word goal for NaNoWriMo is getting more and more elusive. I made it to 15,000 words after my 3,500 word marathon on Tuesday. With 35,000 words and only ten days left, including today, I will need to pump out another 3,500 words each day. Unfortunately, Thanksgiving falls in that time period, which we will be spending in Connecticut. I’d like to know who thought November was the right time for this awesome event? Wouldn’t January, with cold, snow, and thirty-one days have been a better choice? The good news is that no matter how many more words I am able to add during November, I have a good start on what I think may become a trilogy set in the town of Woodbury. It’s always good to have goals…..

I scanned the December issue of the Better Homes and Gardens magazine this morning. Big mistake. All of the holiday decorating, cooking, and entertaining in that one issue made me feel totally inadequate. Unless you want a reason to be depressed–don’t waste your time looking at any of the holiday magazines. Whatever you usually do for the holidays, I suggest you cut back and carve out more time for simple celebrations with your family. Less stress–more memories. And who doesn’t want that?

Say it isn’t so–60 years old???

This is one confused–and gorgeous–Christmas cactus! Apparently it thought it was more important to blossom for my 60th birthday than to wait for the holidays. I am thankful for it’s thoughtfulness! It also may be happy to finally be out of the green plastic pot it arrived in when I was recuperating from my surgery two years ago this month. I am thankful for all the love and support that has been showered on me these past two years and this cactus must know it.IMG_3184

Today the temps are supposed to be in the high 50’s–maybe we’ll hit 60 in honor of my birthday! Then the cold weather arrives (Siberian Express??)….just in time for our trip to NYC to see the Rockettes on Sunday with Joy and kids and Jesse and kids. Sad that Jen, Jeff and their girls can’t make it from Virginia but they (without Jeff) will be at Joy’s for Thanksgiving–awesome! Except Jesse and family won’t be there for the holiday….

It is getting harder and harder to get all 15 of us together at the same time. But Steve and I benefit from having our daughters spread out across the country living where we are delighted to spend time. Joy returns to Arizona right after Thanksgiving–I’m going to have a hard time keeping Steve off their plane and heading for the blue sky, sunshine, and 80+ degrees! We will be there soon enough but nothing is going to drag me away from Christmas in NH. (I’ve already put together the artificial tree for the porch.)

I’m eleven days into NaNoWriMo and participated in the NH region writing sprint last Saturday and Sunday evenings. I didn’t make it to midnight but added over five thousand words toward my 50,000 word count goal, which I’m determined to hit this year. Next week is my last memoir writing class and I’m struggling with what to write about for my final three page submission. After all, there’s a lot of material to pick from out of 60 years. (Let’s amend that to 56 years–not certain that I can conjure up anything from my first four years!)

About fifty years ago today I had a letter to the editor published in the Bangor, Maine newspaper about honoring our veterans on Veterans Day. The beginning of my writing career! At the time, my father was stationed at Dow Air Force Base (now closed) and it seemed important for me to focus on something other than my birthday. It still is. So Happy Veterans Day to all the veterans in my family–my father, Steve’s father, my sister, Bessie, Steve’s brother, Mike, and all our relatives who have served and are now gone. And thank you to all those family and friends who are currently serving our country, including Eric Reid and Ben Roy.

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