Category Archives: Cancer

Going public

Cancer, My Novel- Anne, Writing, Writing Group August 2, 2013 Comments: 3

I woke up at 2 in the morning for a bathroom break. Someone was thumping my chest. It took me a few moments to realize that it was me. My arm had fallen asleep and I was attempting to wake it up by hitting it against my chest.

The things we do to ourselves without realizing it. Thinking that someone else is doing them to us. That we are not the cause of our own problems, of our situation. That events just happen of their own volition.

I can always justify not spending time writing because the bills need to be paid, the laundry needs to be done, the dishwasher emptied. Hey, I can’t shirk those responsibilities now that I am no longer working. Sometimes I just don’t feel well enough to do more than lie on the couch and watch TV. I can always blame it on my cancer. Then I can go to my writing group with a reason (an excuse?) for why I’ve been neglecting Anne.

Yet I’ve always been able to force myself to power through projects. When I’ve had to. But not when I’ve wanted to. Wanting to have something done is not enough for me. I’ve always needed a deadline, a real deadline, not one that I’ve set for myself.

Last night at my writing group I committed to submitting next week. I am going to start with the beginning of Anne and work my way to the end. The end of what will be the second draft. Two down, how many more to go after that?

John suggested that I post my novel right here on my blog. WHAT??? That means going public with my writing, posting it on the Internet for the whole world to see (OK, so I only have 53 followers). Before I feel it is ready. Or before I am ready……

Just 250 words every other day. Yet it feels like a major commitment. As frightening as it is I think it’s a great idea. I’d love to hear what you think!

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….

 

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.

S is for Survivor

Cancer, My Novel- Anne July 17, 2013 Comments: 4

It’s mid-July and farmers are trying to get in a second haying. Trying because we’ve had rain every day for about the last month, with some rainfall significant. This is their window of opportunity as we’re promised a dry spell for a few days.

I always feel like getting back into finishing my book about Anne whenever I smell the freshly mown hay and see the rows lying in the fields, waiting to be bundled into bales or rolled into those gigantic marshmallows that have become the norm. In the book, that’s when Anne feels close to Christian. After “Fifty Shades of Grey,” I’m not certain his name will remain Christian but that’s what happens when it takes you 27 years to complete a project—someone else steals your characters’ names–even your ideas.

Not to imply that I am anywhere near completion. Actually have no idea how much more work it will take for me to finish it but I certainly won’t be able to write “The End” (and mean it) without spending time every day working on it. I keep saying once I get the Chamber tax information to the accountant and all of the visiting family has returned home and the books are closed on the sold apartment building I will have entire days spreading out before me in which I will be able to attack Anne. Sounds so violent. But at least it implies expending energy, which I’ve been lacking. Or is it simply motivation?

Saturday was the Prouty, the Dartmouth-Hitchcock event to raise money for the Norris Cotton Cancer Center—my cancer clinic. Visited the SAG (Stop and Go) site in Newbury that’s sponsored by Wells River Savings Bank for the bicyclists. Katie, herself a breast cancer survivor, had written my name at the top of the memory board. In large letters with an “S” next to it for survivor. Not something I ever expected to see. I don’t mean the “S” of course just my name on display as a victim of cancer.

I was proud to be standing there as a survivor. Weird.

Why should I be proud? I’ve really done nothing to be where I am at this point. It’s the doctors and other health professionals who have gotten me here. And they are the ones we should be honoring.

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?              

Revising

Cancer, Writing July 12, 2013 Leave a comment

I love the process of creating, of writing something for the first time, however crappy the result. Spending hours and hours creating new worlds and filling them with people I love. And those I don’t.

On the other hand, I detest revising and I doubt the sincerity of those who claim that it is their favorite part of writing. I’m envious of those in my writing group who excel at it, accepting the group’s “constructive criticism” with aplomb then returning a few weeks later with a new (and generally improved) version. (Not certain that they love doing it, however.)

So I was excited to read an article on revising in the Sunday Boston Globe Ideas section. Craig Fehrman focuses on Hannah Sullivan’s book on the history of revision. At the very end of the article I finally got to the part I was hoping for, that revising is highly overrated and even a waste of resources (in my own words—you’ll need to read the article for your own interpretation).

Writing a blog satisfies my need to write without spending much time revising. Sort of writing in a journal, flow of consciousness, where the goal is to get my thoughts down on paper before they disappear. And before I have a chance to evaluate their quality. Edit out the emotion. The real me.

I would be happy to put the effort into revising my life however. Edit out the crappy part known as adrenal cancer. Return to the life I used to occupy, one where I went to work every day, put money for retirement into my 401(k) every paycheck, squeezed in time to write, kept busy every second of the day, and rarely got sick.

I say that but now that I’ve left that world, would I seriously want to return to it?

Relinquishing Control

Cancer, Family, Writing July 7, 2013 1 Comment

Relinquishing control is hard. With the 4th of July festivities and the welcome invasion of family (this year 31 of us, 15 kids—not all in my house thankfully!) I am more or less forbidden to take charge of the food preparation and entertaining. That honor after many years of being my domain has been passed to the next generation. It’s hard to sit back and watch my daughters and nieces prepare the salad and heat up the beans while I am forced to lounge on the couch with my sister-in-law. (Turns out they took pleasure in their view from the sink of the two mothers doing nothing but chatting with each other!)

My form of relaxation until now has been to be busy, busy, busy, making sure that people have full glasses of wine, that the meat comes off the grill at the exact moment that the sides are lined up on the counter ready to go, that everyone has a plate, napkin, and a place to sit. It doesn’t mean I’m not proud that they are more than capable of doing as good a job, if not better, than I would have done. To see them work together is gratifying. It’s just that I expected this transition to happen in the somewhat distant future.

Now I am expected to take a nap in the afternoon, to look out for myself. To control my well-being instead of my guests’. Not only am I having a hard time accepting this, I actually resent having to think of myself before I think of anyone else. But one benefit is that my sister-in-law and I, both aspiring authors, have more time to talk about our writing–or rather our lack of writing. She will be here for a while after everyone leaves and that will give us even more time to continue this conversation!

Since November I’ve had to turn over control of my life to my cancer. It’s decided how I feel. What I can eat. What I can do. And especially when I can do it. There’s been a lot that I can’t do but I’m gradually getting back into things, like Pilates and yoga. And walking with Judy on her lunch break. My lunch break? Whenever I want it to be.

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.

Excuses

Cancer, Mitotane, Writing July 1, 2013 Leave a comment

Managed to get through the worst part of the day—taking my morning medicine, all 13 pills. I know there are those who take more pills than that but I used to take only three: one for my acid reflux, one for my high blood pressure, and one for my seasonal allergies. Still, those extra ten are magic and I try not to forget that.

It’s Father’s Day and Steve has gone golfing, his usual game at 6:30 a.m. on Sunday. It’s supposed to be my time to write. So far I have watched CNN, some HGTV, and back to CNN for Sonjay Gupta, then read the HGTV magazine, taken my medicine, texted Jesse, and now DIY is playing in the background as I finally sit down to write.

Are you getting tired of my excuses yet?

I am.

While I was painting the guest bedroom yesterday, I had some great ideas about my book (“Anne”). Unfortunately I couldn’t just put down the paint brush and dash to the laptop to get them recorded but that is exactly what I should have done as today they are just sort of vague but there’s enough of them left to work with. Except I just got another text from Jesse and she and the kids are on their way over so we can go to breakfast….Interesting that we are going out to a Father’s Day breakfast without either of the fathers…oh, and that I have already eaten a glazed donut and two pieces of raisin toast.