Posts by date
Posts by title
- ABC World News advanced lung cancer Alimta ALK+ ALK+ lung cancer ALK + lung cancer ALK inhibitors ALK mutation Alk mutations ALK positive lung cancer Attitude attitude and cancer binimetinib Camp Kesem Cancer and our children carboplatin Carboplatin and Alimta CDMRP ceritinib chemotherapy clinical trials clinical trials lung cancer Cobra coronavirus COVID-19 Crizotinib CT scans Death and dying depression and cancer Diane Legg Dr. Alice Shaw DS-1062a Dying G1202R ICRF LDK 378 LDK378 living with lung cancer living with stage IV lung cancer living with terminal lung cancer Lorbrena lorlatinib lorlatinib and binimetinib lung cancer lung cancer advocacy Marfa Marfa Texas medical research Mortality mucositis NSCLC pandemic pemetrexed PF-02341066 PF-06463922 Pfizer phase I clinical trials positive attitude and cancer progression progression lung cancer Sarah Broom SHP2 and lorlatinib side effects of cancer treatment Stage IV cancer stage IV lung cancer targeted therapies terminal cancer terminal illness terminal illness and depression terminal lung cancer TNO155 plus lorlatinib TPX-0131 triage WageWorks Xalkori
Posts by subject
Monthly Archives: February 2011
Snow. Lots and lots; seven to eleven inches today, more tonight and in the days to follow. Those warm days were just a teaser.
It’s been a busy week. Our good friend Frank was here last weekend with his son James and on Saturday they hit the slopes with David and Peter. On Sunday it was bitter cold outside, and the guys opted for sledding in the backyard instead. Frank and James were able to stay until Monday morning and it was great to see them both.
Tuesday morning was my monthly appointment at MGH; all routine. It was agreed that even though I wasn’t schedule for a scan for another seven weeks, I would come in for a physical every four weeks. Alice (Dr. Shaw) just felt better that way, and I’m not inclined to disagree with her.
Afterward I joined my friend Sadie and her Husband Pete at the condo they just moved into on the edge of a salt marsh. The three of us enjoyed dinner and conversation together and I slept over; a lovely respite.
Yesterday was filled with errandsw in anticipation of the forecasted snowfall. And then last night, quite suddenly, I was feeling like crap again. Back pain, muscle aches, headache and general flu-like symptoms. After dinner I took some Advil and went straight to bed. This morning I felt a little better but my face was swollen and my head and sinuses hurt.
I began to wonder if my symptoms might be due to the Levaquin, which I had been on for a week and a half. The last time I took it, after ten days my face swelled up as well. After googling side effects, I’m pretty convinced that is the case. Troublesome, as I am resistant to most antibiotics now, and I feel backed into a corner with the recurring sinusitis.
I’ve just got to do what I can to strengthen my natural defenses and frankly, to hold out for spring. It will be a breath of fresh air indeed.
I want to say a little about our family, and, in particular, my sister Laura. We have three other sisters, and two brothers as well. Seven kids total; I am the oldest and Laura is smack in the middle.
Ours was a nontraditional family in just about every sense of the word. The first time I met Laura, she was standing on our front stoop with her younger sister Diana and their mother (or mama, as she liked to be called). Her Mama’s name was Carolyn, and she had just started dating our divorced father. On that day my brother John, sister Bink and I were meeting the three of them for the first time. Carolyn’s first words to me were “man, I dig your overalls”. I glanced over her shoulder to the curb, where she had parked her VW Beetle. Every square inch of it was painted over with flowers, peace signs and raggedy ann dolls of varying ethnicity. I was meeting my first hippy.
Soon the hippy was my stepmother, and Laura and Diana became our sisters. It wasn’t long before our family expanded even more, as Daniel and then Rosalie were born. I couldn’t have been more pleased, as I was now ringmaster of my own circus, with a troop of younger siblings eager to participate in any variety of schemes. We had tea parties, puppet shows, super eight movie productions, and even an annual neighborhood carnival.
My brothers and sisters were also the students and I the teacher when we played school, and I taught Laura how to read before she even entered kindergarden. It was only years later that I realized this accomplishment owed more to Laura’s precocity and determination to succeed rather than any skills in instruction on my part.
But I grew up and moved on. My younger siblings lives became a bit of a mystery to me, just as mine was to them. Over time, our geographical distance increased and our family ties loosened. We’d see each other at the occasional family gathering, but our relationships became less close.
And then, several years ago Laura and I really reconnected. It was a couple of years into my battle with lung cancer, and despite several treatment regimens, it looked as if the cancer was now in both lungs. Laura and her husband Andy responded to this news with what I was to learn was signature Pastor gusto: they invited my husband David, son Peter and myself to be their guests on a Disney Cruise.
I was now beginning to understand that this renewed relationship between Laura and myself would be no casual thing. Laura brings her A game to everything she does; it’s really all or nothing with her. And she was going to expect the same amount of effort from me.
So, it’s no surprise to me that when I asked her if she would consider running in the inaugural Team Lung Love race, she not only accepted, she ran the full marathon and raised the greatest amount of money. And then decided she’d start a team Lung Love in Austin.
That’s my sister. She puts all her heart as well as her considerable talents and energy into every undertaking. I am overwhelmed and honored that she has chosen to work lung cancer advocacy into her already full life, just as she has made me part of her family again.
And I’m holding up my part of the bargain Laura. I’m still here, fighting with all I’ve got, and I love you so. I’ll be cheering you on every step of the way tomorrow, and your teammates as well. Thank you all.
I’ve been taking it a bit easy the past week, as I’ve had yet another sinus infection; this one took up residency in my lungs with alarming speed. I had a ticket to fly to Austin today to cheer on Team Lung Love and my sister Laura, but I made the difficult decision earlier in the week to not travel yet. The past few months, every time I’ve flown somewhere, I’ve gotten sick almost immediately afterward. Whether it’s the pressurized cabin, or perhaps the the close quarters; I’m not certain; but it’s been a trend I’d like to end.
Yesterday it was sunny and in the forties, which felt like the eighties compared to the chilly temperatures we’ve endured for months now. I felt well enough to strap on my snowshoes and to venture into the woods. Almost immediately I found a beautiful little nest that had somehow weathered all the storms; perhaps that of a wren.
The sun warmed my face and a whispery rattle was coming from the beeches, which hang onto some of their papery leaves until the new ones bud. I placed my hand on the trunk of a large maple, and I swear I could feel the sap running.
I came done with an instant case of spring fever.
Today the thaw continued, and Buddy and I were able to walk the two miles up and down the road; the dust kept down by running water. It felt so good. When I picked Pete up at the bus stop, a mall flock of ducks was circling endlessly above us. I think they had the fever too.
Before you know it, we’ll be sipping iced tea in the same adirondack chairs that are yet up to their knees in slushy snow.
Subject: Champagne anyone?
OMG. X, left to her own devices by Dad and before I got home with
the alternate dinner, decided to make a fancy dinner on her own. Salad with dried lentils sprinkles (um crunchy) to start, followed by left over stuffed shells, and a light dessert of vanilla ice cream with
crushed Thin Mint GS cookies and a Valentines chocolate. All in all
quite nice. And to drink – champagne, which she’d gotten out of the
fridge and opened all by herself. GASP! Boarding school. The only
hope. Start collecting all nickels, dimes, quarters now.
Subject: Re: Champagne anyone?
I understand your concern, but this one is filed under priceless. Tell
her lentils might be hard on her teeth. Oh, and that she should wait a
few years for her next sip of champagne. It will taste better then. Love
you all, Linnea
Subject: Re: Champagne anyone?
We do have to remember that this is the child that at age 3 or 4 declared she wanted to “drink champagne and mambo all night”.
Subject: Re: Champagne anyone?
PS: How’d she get that bottle open?
Subject: Re: Champagne anyone?
All by herself. How’d she know how to get the bottle open????
We are experiencing deep winter here in New Hampshire. Last year snow was often a no show, but there is more than enough now (with more on the way). Peter has had a banner year skiing, and I’ve been out on snowshoes a few times.
Packed snow is difficult for Buddy, with his bad hips. It’s too bad, because he loves it so, but limps terribly after a prolonged frolic in the white stuff. And I hate to go out without him, as he stares mournfully out the window at me. So, Buddy and I have been getting back into the habit of walking; with the plowed street being our only accessible venue.
It is easy to skip exercising when the temperature dips (try a walk when it is zero degrees outside) or the wind is blowing, but I feel like it is imperative that I keep moving. Really. Not only is it good for my lungs (and my legs and my butt, etc…), there is mounting evidence it is good for the brain as well.
Unfortunately, the roads in these parts are all heavily sanded and salted, which means that every time a vehicle passes, all that stuff becomes temporarily airborne. Dust is not my friend (I’m quite allergic to dust mites as well), and I cover my nose and hold my breath for as long as I can until it settles. Fortunately, ours is not a heavily traveled byway.
Winter sports are in full swing here. All the wee huts in the photos are bob houses. The frozen surface of Lake Winnipesaukee is dotted with them, and the annual ice fishing derby is on Sunday. The pond hockey championship was last weekend, and the world championship sled dog derby is going on now.
And when we aren’t gamboling in the snow, we are contending with it. Ice dams and frost heaves are new additions to my vocabulary. Last week the UPS truck got stuck at the bottom of our driveway. Our first winter, I didn’t have a vehicle equipped with four wheel drive, so we tied a long rope to a tree and after parking my car at the top of the driveway, I would essentially rappel down.
There are moments when I long for the warmth and relative ease of summer, but I’ve also grown accustomed to the deep freeze. Makes you tough, according to the locals.
The episode of Dr. Oz for which Diane, Eileen and I were interviewed will air tomorrow. Click here for a link to your local times. Don’t take any restroom breaks, or you might miss it.
Update: I was at the orthodontist with Pete when it aired, but you can see the show on the Dr. Oz website now as well. Just so you know, they asked us all to look sad and serious at one point (contemplative). Happens to me sometimes, but I usually try to avoid it, particularly when being filmed, as it is not my most flattering facial expression.
But enough about me! Diane and Eileen, you were great. Still think I could’ve squeezed in there, (oops, me again) but you betrayed no semblance of stage fright and both looked lovely. It was more than swell of you to make the effort to travel back and forth to NYC for the taping (on a messy winter day), and for showing the viewers an unexpected face of lung cancer.
And a belated thank you to Dr. Oz as well. It’s great to have media paying long due attention to lung cancer, and to help dispel the myth that only smokers are at risk for the cancer with the highest mortality rate.
One more update: Eileen was interviewed on the local Fox 25 news yesterday, and was able to tell much more about her story–which is amazing. Click here to view that segment.
A week ago yesterday, I flew to Washington DC for the Lung Cancer Alliance’s Fourth Annual Capitol Forum. First, however, I spent a few days at the home of my good friend Sally, along with her husband Rick, Daughter Ella (bella), our mutual dear friend Melinda, and a couple of cats (one of whom Ella refers to as “the ripe one”).
We ate, attended a yoga class, marveled at all the downed limbs, redecorated Sally and Rick’s home (per their request–loads of fun) and cooked and ate and drank some more. It was all over in a flash, as Melinda headed home and I to the Washington Court Hotel, where much of the forum would take place.
We were about a hundred strong; advocates and Lung Cancer Alliance staff, and following dinner, everyone attending introduced themselves and explained their personal connection to lung cancer. Most were related or close to someone battling lung cancer and in too many cases that person had passed away. There were a few survivors as well as a small number who were moved to participate through their role as caretakers. It was an emotional evening, and I headed to bed soon after.
The next morning we were up early for breakfast and an all-day information and legislative training seminar. We were also introduced to The Honorable Michael Oxley, who is a survivor of lung cancer himself.
Dinner was on our own and my dining partners included Diane Legg (Chair of the Massachusetts LCA chapter), her sister Beth, Dr. Debra Morosini, sister of the late Dana Reeves, Julia Gaynor (of Team Lung Love fame), Jennifer Windrum (founder of WTF or Where’s The Funding for Lung Cancer) and Dennis Reilly.
Tuesday morning we ‘stormed’ the capitol. We split into constituencies, and I was a member of the Massachusetts and New Hampshire crowd. It was kind of a dream team, in that several of our group were veterans of this process. Our mission was to urge our state Senators and Representatives to sponsor The Lung Cancer Mortality Reduction Act of 2011 (soon to be introduced, see 2010). In a nutshell, the bill asks that a comprehensive interagency response to reduce lung cancer mortality is established, and that 75 million dollars be allocated to that end.
It’s not an easy sell, but nor would it be possible to not be moved by the stories we related that day. In addition, the data from the U.S. National Lung Screening Trial was released in early January, and it is highly suggestive of the benefits of CT scans in screening for lung cancer.
It was an amazing day. To experience advocacy first hand was energizing, and I made many new friends. But by the conclusion of our appointments, we each felt physically and emotionally spent. See photo.
I am between my new friends Cecilia and Lorraine, and one of those empty martini glasses is mine. But the reason my face is so red and puffy is because I just couldn’t stop crying. One of those days.
The next morning we were to have another presentation , “Lung Cancer: Out of the Shadows” , but the weather messed with our plans big time. In addition, my fight home was cancelled, so I made the best of it and spent the afternoon with Julia, touring The National Portrait Gallery.
Thursday morning I caught a flight home, and the first thing I did was take a nap. Today it was a return to my regular schedule; loads and loads of laundry, trips to and from Pete’s school and the ski slope, answering emails, writing a blog, and catching my breath.