Category Archives: Surgery

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?

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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.

Gratitude

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??

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….

One In A Million

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That’s me.

No, I didn’t win the lottery.

I have Stage 2 adrenal cortical carcinoma (ACC), an ultra rare, aggressive cancer with a grim prognosis that strikes .5 to two people out of a million annually. This is one time when you don’t want to feel special. I had surgery the day before Thanksgiving 2012 to remove my right adrenal gland, kidney, a piece of my liver, and resected my inferior vena cava (what in the world is that, I wondered. It’s the artery that returns the blood from my legs to my heart. Who knew?)

Not only did I miss Thanksgiving dinner, which I would normally have hosted at my house, but a Thanksgiving day trip to Atlantis in the Bahamas with my middle daughter and her family. We did make it there the end of March 2013 and it was a wonderful trip. Funny how when I was recuperated and able to eat normal food I craved turkey dinners, whether at a local restaurant or in frozen dinners due I am certain to being deprived of a real Thanksgiving dinner. I am not certain what I did eat for Thanksgiving dinner on the day following my surgery as the day of and most of the day after have disappeared from my memory. A good thing, I am told by my family who were unlucky enough to be there with me and forced to endure their Thanksgiving dinner in the hospital cafeteria. I no longer crave the turkey dinners as my cravings change constantly—what I absolutely had to eat a short while ago I no longer desire.

Except for carbs.

For the last few years my husband and I have tried to follow the South Beach diet principles and now all I want to eat are things off limits on South Beach: all carbs, including bagels, cinnamon raisin bread, pumpernickel, pasta, even the occasional toaster streudel.

Vegetables? No thank you.

It sounds as though all that ACC has done is impacted my eating habits. Nothing could be further from the truth. I am lucky in that my cancer is stage 2, even though the prognosis is that I have a 51% chance of living five years. I had several options for treatment, one of which was to do nothing, just wait for the results of my CT scans every three months. That didn’t really thrill me.

I am used to taking action, to being in control.

A remote second opinion from the University of Michigan recommended Mitotane, a DDT derivative, taken in pill form daily for three years. Although my oncologist at Dartmouth Hitchcock Medical Center did not support my decision, I went with the U of M recommendation. Rumor has it that only 20-30% of ACC patients benefit from Mitotane—how am I to know if I am one of those? Clean CT scans only prove that the cancer has not returned, not that the Mitotane has kept it from returning. Mitotane has extreme side effects, which prevents many patients (are there really many people making this decision?) from taking the drug. Because it also kills your other adrenal gland, you need to take hydrocortisone, which I have difficulty tolerating even though it does fuel my appetite and apparently my energy level.

The biggest decision of my life was to retire at the age of 58. (Sorry, Steve, marrying you wasn’t really a decision, it was a given.)

On the day I returned to work from medical leave after my surgery I gave my notice. That wasn’t part of our plan, just like cancer wasn’t. Steve was supposed to retire this year at 63 and I was to continue working until I was old enough to draw Social Security. So much for plans. But who wants to keep working, no matter how rewarding, when death looms on the horizon? Sure, we’re all going to die at some point but by the time you reach my age you assume you’ve got another 30 years ahead of you, especially when your mother is still alive and kicking—and I do mean kicking—at the age of 85. And I thought I could produce a lot of novels in those 30 years.

Now I am hoping just to finish the writings that I’ve already started.

Yes, writing is my dream and what better time to try to realize your dreams than when death is no longer just a concept but a very real possibility?

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