Monthly Archives: May 2013

Visit to Utah, part one

Jim, Ev and Jane

Jim, Ev and Jane

It’s not every day that we have the opportunity to attend an eightieth birthday party, and this particular celebration—in honor of my stepfather Jim—coincided with the date of my eighth infusion. What’s a girl to do? Obviously, delay infusion!

A week ago, I skipped my pre-chemo steroid and caught a plane to Las Vegas instead. I was met at the airport by Jim and my mother Evalynn. A short time later, Jim’s sister Jane’s flight from Dallas landed, and the four of us drove 119 miles northeast to St. George, Utah. The next twenty four hours were rather quiet, but by Thursday night a large clan was gathering. Jim’s son Ed, his wife Pam, daughter Kristin and her partner Elizabeth. Jim’s other son Dave, with his wife Amy and their daughter Lauren. My brother John and his wife Amanda. A handful of childhood pals (some of whom Jim has known since he was a small boy growing up in Wyoming) as well as an assortment of local friends and neighbors. That was party number one, with cold cuts and a birthday cake. And lots of conversation.

In the morning, Jim had a date at the golf course with Ed, Dave and John. Mom, Jane and I were to go to breakfast. However, our morning was not without incident. After I showered I went to look for mom and found her in the bathtub, which was drained of water. She was unable to get herself out, and I wasn’t strong enough to lift her. We tried all sorts of tricks to no avail. I told her we had three choices:  we could call Jim, the fire department, or their next door neighbor ‘Big Bill’ (who was a fireman for thirty years). Of course, none of these choices felt particularly appealing, but I slipped mom’s nightie on to preserve her dignity and Jane went next door to fetch Bill.

Minutes later he walked in the bathroom, addressed mom:  “Hello sweetheart! I’m going to help lift you up.” And then, easy as pie, he slipped his arms beneath hers and pulled her to a standing position. I was crying as I thanked him—it is not often that I am on the caretaking side of things and I found this experience humbling.

Well, Mom still wanted to go to breakfast so I helped her dress. The next challenge was figuring out how to start Jim’s car—a new push button affair. After several attempts the dashboard noticed that a dummy was behind the wheel and a helpful message appeared—I needed to depress the brake at the same time I pushed the button. Aha! Next up—opening the garage door. The only obvious control was attached to the wall fifteen feet from the door. Jane, who is a young seventy seven, gamely offered to push shut after I backed the car out and to make a run for it. I will never forget her face as she came barreling out of the garage just inches beneath the descending door. We laughed until we were crying, and I expressed how glad I was that she’d made it as I wouldn’t have wanted to go next door to Big Bill’s again—“Could you please help me pull Jane out from under the garage door?” Of course, when we heard later that this door had no sensor to stop when it hit something, we felt a little chastened. File this one under all is well that ends well.

That evening we had party number two:  mexican food, the family members and Jim and Ev’s friends Bruce and Barb and Bill and Shirley. After dinner we all gathered in a large circle and Jim shared some of the creative exploits he has been up to. In turn, he asked each of us to give a brief description of where our lives were at. It was a moving experience. Afterword, we broke again into smaller groups for more conversation. I came away with such love and pride for this side of my family, as well as a renewed conviction that so much time should not pass in between visits.

Tomorrow (if I’m cogent after chemo; I couldn’t put it off forever), Goodbye St. George and hello Vegas!

Addendum

I’ve just returned from a brief but eventful trip to Utah. This first full day back has been devoted to reading several days worth of newspapers, laundry and an hour of riding shotgun as Peter practiced driving (including a short stint on the highway).

I planned to write a blog tonight with all the details of my journey. Alas, I find that I am succumbing to fatigue. Tomorrow, I promise. In the meantime, I’d like to share the fact that I have begun a new undertaking:  a weekly blog about lung cancer for everydayhealth.com.

This effort falls under the category of advocacy versus employment (I am not financially compensated). It is going to be a great opportunity to reach a broader audience and shall be a bit of a challenge as well, producing two distinct story-lines. Of course, the underlying subject matter shall remain the same—living with lung cancer.

Here is a link to a profile in which I am introduced to the everydayhealth.com audience:

http://www.everydayhealth.com/lung-cancer/linnea-duff-living-with-late-stag e-lung-cancer.aspx

And a link to my first blog:

http://www.everydayhealth.com/columns/linnea-duff-life-with-lung-cancer/lif e-with-lung-cancer-introduction/

I am hoping that my ability to reply to comments will soon be enabled, as they are piling up and I really would like to respond to each. Anyway, I’d be pleased if you would check out my new gig, and rest assured that the show shall go on here as well.

Assorted busy-ness and notable happenings

Sienna, Peter, Rayla, Risha, and Rachel at prom

Sienna, Peter, Rayla, Risha, and Rachel at prom

I still have some catching up to do, and I better start with April. Although I kept quiet about it this year, it is worth noting that I was diagnosed with lung cancer in April of 2005. That was more than eight years ago. Or, another way of looking at it; I am into my ninth year of surviving.

Also, Mr. Peter Duff turned sixteen on April 20th—yet another important milestone. He is enrolled in a driver’s education class and should have his license within a month or two. And…he attended his first prom. I was in Austin, but got to serve as wardrobe advisor prior to my departure. That’s my Uncle Roger’s white jacket that Peter is wearing, and I have to say, the kid looks mighty fine (as do his lovely companions).

I’ve also had some fun dates with friends. Last week I spent twenty-four hours with Melinda, her daughter Lizzy (who is home for three weeks after completing her first year of law school) and Melinda’s sister-in-law Stephanie. Strolling, shopping and lunch followed by a nap, movie, tapas and a sleepover. Perfect!

Julia with the Boston Opera House in the background

Julia with the Boston Opera House in the background

And then, several days ago I joined my buddy Julia in Boston. After a yummy dinner made by her boyfriend Keith (barbecued chicken, asparagus and macaroni salad), Julia and I attended a Boston Ballet performance of Coppelia. It was pure confection; an all around delight. Too tired to drive back to New Hampshire, I crashed on Julia’s guest bed. As a child I seldom slept over at friend’s houses, but now that I’m an adult, it is one of my favorite things to do.

Over the weekend it was Peter’s turn to be sociable, as we hosted dinner and a sleepover for a few of his friends. Well, you know you’re getting old when you fail to get a real head count. Four of his guests left after dinner; the following morning I counted thirteen pairs of unfamiliar shoes in the front hall.

Normally I would be having chemo in two days, but it has been pushed back a week so that I can travel to Utah tomorrow for my stepfather’s eightieth birthday celebration. Busy, busy, busy!

Brothers and sisters

Family sing-along

Family sing-along

La's pancakes

La’s pancakes

Diana, Laura, Linnea, John, Rosalie, Bink and Daniel

Diana, Laura, Linnea, John, Rosalie, Bink and Daniel

Andy, Micah and Indigo chez Pastor

Andy, Micah and Indigo chez Pastor

Poolside

Poolside

Laura and Binky lounging on the dock

Laura and Binky lounging on the dock

John and Amanda zipping around on a jet ski

John and Amanda zipping around on a jet ski

Hale snags a big one

Hale snags a big one

On Friday, the 3rd of May, I flew to Austin. It was an early morning flight, and I’d had my infusion of alimta the previous day. I needed sleep more than conversation and thought this might be a good time to play up my status as a cancer patient in treatment, (as well as to avoid any viruses my fellow passengers might be harboring) so I donned a mask for both legs of the flight. With my knit cap and a scarf wrapped around my neck, I was pretty cozy. Best of all, I actually slept.

So what on earth would compel me to fly the day after chemo? Well, nothing less than a sibling reunion. For the first time in fourteen years, all seven of us were going to be in the same place at the same time—at the home of Laura and her husband Andy in Austin. My brother Daniel and his wife Micah flew in from Alaska with their new baby girl, Indigo. Rosalie, who is pregnant with her second child, had planned to bring her husband Brian and son Magnus, who came down with a fever the night before. So Rosalie came solo, but on the same flight as my sister Bink and brother John and his fiancee Amanda. Diana drove down from Waco, and by Friday night we were all assembled.

Although I had to forgo the hot sun, margaritas and jet skiing, I was more than happy to just hang out. Plus, I did wrangle more than my fair share of baby holding time:  Indigo and I are now fast friends. And I had a chance to have meaningful conversations with every family member (including Laura and Andy’s three sons; Max, Hale and Eli). A surprising highlight of the weekend was a spirited game of Taboo. I’ve had a life long allergy to board games (or ‘bored games’ as I like to say). As a child, I would amuse myself by cheating (ask brother John), but aside from an occasional game of scrabble, I’ve had no interest in games as an adult.

However, May 4th was Diana’s birthday and she wanted to play games. Binky wouldn’t let me worm out of it, so I was in: girls against boys. And you know what? It was so much fun. Taboo is a game where you draw a card with a word on it that you have to make your teammates guess. Below it are five words you cannot use while prompting them, and of course, they are the very words you want and need to say. I was so chemo-brained that I was hilariously inarticulate, but the psychic connection between me and Binky is yet strong, and somehow she managed to guess my words anyway (thanks for making me look good Bink).

Anyway, it was just a special, amazing time and we agreed to not let fourteen years go by before the next sibling reunion. I love you guys!

Mother of em all

My mother and me

My mother and me

Happy Mother’s Day to all of the moms out there. And for those of you for whom this holiday is a painful reminder of loss, my heartfelt sympathy.

Robins' egg blue

Robins’ egg blue

My own day has been quiet but utterly delightful. First thing this morning, Peter and I spread some mulch and then went on a walk with Buddy. Peter noticed a beautiful robin’s egg in the road—hatched, but miraculously intact. After lunch, I went out for a latte, and was delighted when I had to stop for a moose crossing the road.

Assorted treasure

Assorted treasure

Next I paid a visit to a local antique store where I purchased a sextuplet of magical items for a song: two unusual watch fobs, a mourning pin, long brass key chain, a plump (and rather suggestive looking) sateen pin cushion and a wooden last with an unfinished shoe trimmed with  triangles of gold leather still attached.

In the afternoon I spent some time organizing my studio before phoning my mother Evalynn and stepmom Carolyn. Our adult children, Jemesii and August, each called to wish me a Happy Mother’s Day. And then, the ultimate:  sixteen year old Peter made dinner (braised chicken with tomatoes, onions and capers, a roasted beet salad with goat cheese and walnuts, followed by molten chocolate cake—recipes compliments of the NY Times Operation Mother’s Day). David filled the role of sous chef and provided several flower arrangements culled from our garden. The table was beautiful and the dinner absolutely delicious!

Head Chef Peter

Head Chef Peter

Scan report: 4/29/2013

I’m delighted to write that I have not posted a blog simply because I have been too busy living my life. Over the next few days I hope to rectify the lack of communication by playing catch-up. I may as well start with my last scan—being presented here in unadulterated fashion. Couple of notes; for the uninitiated, ground glass refers to patchy or lace-like areas which represent some form of inflammation and/or cancer. We always hope for the former, but in my case, it is likely the latter. Also, the pericardial effusion is not actually new—but rather has been noted for some time, as has the pleural effusion:  no biggie.

linnea radiology 4:13001As for what this all means; in short I continue to have progression. Not marked, but Dr. Shaw felt ‘little significant change’ was not quite adequate either. However, as I am tolerating the alimta and feel pretty well overall followed by one week of feeling just about fabulous, there is no discussion about changing up therapies yet.

Also noted at my appointment was the fact that I have gained fifteen pounds in four months. I was pretty skinny coming into chemotherapy, so this is a good thing. However, at least some of the weight is due to steroids, and therefore not evenly distributed. I’ve got a bit of moon face going on, and my fingers and toes are sorta chubby—merely enhancing my resemblance to a big baby (more about that later).

Routine and then some

Kinetic sculpture by Arthur Ganson at the MIT Museum

Kinetic sculpture by Arthur Ganson at the MIT Museum

When I wake up in the morning I wiggle my toes and then repeat “I’m alive” three times. Then I do a little yoga stretch before I swing my legs over the side of the bed. I pee (doesn’t everybody when they first get up?), mosey on down the hall to the kitchen to get the kettle started for coffee, turn the light on Pete’s aquarium and let our golden retriever Buddy out for his first pee of the day. Joining him outside, I pick the newspaper up from the end of the driveway and gently place it in his mouth. Buddy thens trot back into the house (rather proudly), and drops the paper in the proximity of his food bowl, a not so subtle hint.

Today, as I walked down the driveway I heard one of my favorite sounds:  the call of the wood thrush. My heart soared. On that note, I think it is time for a personal update:  as a good friend pointedly noted, inquiring minds would like to know.

My emotional challenges hardly need delineating. But joy continues to burst through, as sudden and unpredictable as bird song. Sometimes I am actually outrageously happy; full of energy and plans. My stamina and lack thereof do follow a pretty set schedule though. For a day or two following chemo, (and because of the steroids) I fly pretty high. But when I come down, it is precipitous; the sense of fatigue profound.

There are other unpleasant side effects that also set in about day three. I cough a good deal and it feels as if there is a band tightening around my chest (what one friend in my club calls the alimta squeeze). Incessantly watering eyes, scaling skin, and nose bleeds are part of the mix.  My other mucus membranes (all of them) become quite irritated, resulting in diarrhea and mouth sores.

By the second week, I am feeling marginally better on all counts.

Week three—I feel pretty damn good. Then it’s time to do it all over again; I have a scan review tomorrow followed by infusion. I had that scan on Monday, and while in Boston, went on a little outing. My friend Ginger, who is a double digit survivor of lung cancer but now battling a new, unrelated cancer, made arrangements for the two of us to go to lunch at Flour and then to the MIT Museum in Cambridge.

We had a fine old time, and asked a member of the staff to take a commemorative picture of the two of us, in which, Ginger appears to be a mini me. We’re sporting exactly the same hairstyle at the moment, although she is far less gray. Our smiles are quite similar. However, although Ginger never thinks of herself as petite, either she is, or I am very large. Like I said, a mini me. So where’s the photo?

Well, it wasn’t very flattering; just didn’t capture our inner beauty—I think it might have been the lighting. So, we’ll just have to take another one the next time we are together. Promise.