Monthly Archives: June 2010

Personal revelations on life and art

Peter is having donuts and stir fry for breakfast. I report this little detail because it came to my attention the other day what individuals our children each are. No, really. I jokingly said to David, “as far as influencing our kid’s lifestyle choices, I’ve been a washout. Jem is into fashion and popular culture, tattoos and all things girly; Aug counts golf, ganja, girls (make that girl, he’s in a relationship) and music as his primary interests, and now Pete’s all about fishing, air guns and dirt bikes.”

Sigh, it’s a good thing, I’m sure, but the whine of the dirt bike is going to be hard to get used to.

Luckily I can retire to my little ‘studio’ and turn on the ventilation fan, which drowns out most background noise. And that leads me to my second revelation.

I have a tendency to just jump right in, and painting is no exception. Prep work is anathema to me. I struggle with an incredibly short attention span coupled with a desire for instant gratification, as well as a flagging sense of discipline. I often start a project with no idea as to where I’m  actually going.

In the big picture, this has led to a lot of happy accidents; at least two out of my three children fall in that category. And in order to maintain such a modus, you have to be flexible and open minded, and I have been both in spades.

This flexibility and lack of investment in a particular outcome have come in very handy when dealing with my cancer diagnosis. But, of course, there is a downside to this less than direct approach. Time is often wasted, chaos frequently prevails and there have been some spectacular dust ups.

It all worked pretty well for the first fifty years of my life.  Yet lately  it has been difficult to ignore how close I am to what may be the edge of my existence. I feel a sense of  emotional clarity out here on the edge, but also an increased awareness of the potential lack of time and physical space. There is an emerging economy to my movements; I am becoming more mindful and my choices more considered.

I started a new painting a few days ago, and I resisted the impulse to immediately load my brushes with paint. Instead, I spent several hours sketching out the subject with a graphite pencil. I made the effort to get the proportions correct. Several times I wiped away the drawing only to start fresh. Finally, it felt right and I applied a thin wash of color. For once, I knew both where I was going and how I was going to get there. And it felt good, really good.

More wild things

Bike week is over and I can once again concentrate on non-human forms of wildlife. It’s been an exceptional week; particularly in the avian world. The photo is of a turkey egg that seems to have been laid rather inappropriately in the middle of our neighbor’s lawn. David and Peter seriously toyed with the idea of incubating the egg, but in the end the plan was scrapped.

Not too many days ago, we had a bald eagle cruise through our backyard. And then, on Sunday, which happened to be Father’s Day, we were nursing some post taco margaritas on the deck when we noticed what looked to be a glowing red orb on the peak of a sunlit fir. Out came the binoculars and it was identified as a scarlet tanager. Moments later an indigo bunting graced the branches of a neighboring tree, and then the show was concluded with three cedar waxwings perched in a birch tree. Unbelievable.

On Monday, David and I took a walk in the woods and this time we left our dog Buddy at home. Suddenly there was a loud cough and David turned to me to say “was that you?”. Un huh. T’was a bear, heard but not seen, which was sort of unnerving. I made a note to myself to bring Buddy along on my next solo venture through the trees.

And then yesterday, driving up the road, the freshest little fawn I’d ever seen stumbled out of the woods. I don’t think it had ever seen a car before, as it made no attempt to flee. I slowed the car and waited for it to go back the way it had come.

Yesterday I also received an email from my friend and regular commentator Guillermo. He had attempted to post a comment, not once but twice and it was rejected both tries. It’s not the first time that has happened to Guillermo, and I wonder if it’s been an issue for anyone else. Anyway, he forwarded what should have been his comment in the email. Now, I don’t know how many of you read the comments at the end of each post. For me, they are one of the of the most special aspects of this blog: the opportunity for those reading it to say hey and also sometimes to add their own perspectives. Guillermo puts a lot of work into each of his and they have taken on a life of their own. Almost like a blog within a blog and he has developed a bit of a fan club; those who eagerly await a Guillermo response.

So, as not to disappoint, (and with his blessing) I have included Guillermo’s rejected comment, my response, and a subsequent comment here:

Hi Linnea: My comments below were not updated in your blog. Big brother does not like my photo?
When I submitted again I got
“Duplicate comment detected; it looks as though you’ve already said that”

I know, is old age and I repeat myself.

{} X
Guillermo

In Toronto everybody is free to breath clean air inside buildings, smokers are free to smoke outside, is democratic, they have no right to pollute the majorities clean air.
Ride bikes  without a helmet or cars without seat belts and your reward is a ticket, if you insist you may get a suspended license. Women are free, have rights over their bodies, free to choose free abortions. In some countries they choose life until they are born and after they choose death penalties and wars. Free to disagree. Not dead penalty here, war in Afghanistan but not with Iraq. In the United Nations qualityof life index Canada is 4 and United States is 15. Live free and die.

I went to pick one of my cancer lottery prices a mountain bike and got a free helmet.
The store was in a part of town with more latin americans, many celebrating with flags their football victories. We stopped at an Uruguayan bakery to buy River Plate delicatessens like empanadas (meat pies), dulce de leche, etc. Disappointed with a closed store when a car arrived and the driver a man in his fifties toll us that they opened Thursday to Sunday, busy on weekends. I responded that I was in the area picking up a bike won in the cancer lottery and he got interested.
He said I will open the store for you.
Inside he ask me if I had cancer, what type and how long. When I said that was lung cancer for 5 years he lifted his shirt and show us a large scar from lobectomy and a colostomy bag. He had lung and colon cancer operations in the last 5 years, he was full of life, strong, energetic, enthusiastic. He said “you now we all die, every day is a gift”. Live free or die.

Dear Linnea I think that our party is going to be longer and busier that Route 66.
My wife said that “1066” was the year of the conquest.
William the conqueror ended England dark ages in an memorable battle.
Funny feelings, is not an Omen but, Guillermo means Williams, my initials are GB like Great Britain, in our war, I hope that in 2010 1066 battles and conquers cancer.
1066 a historic battle game for Peter
http://www.mofunzone.com/online_games/1066.shtml

Free bike, congratulations!  What’s a cancer lottery? I’m sorry you’ve been thwarted again while submitting a comment–I don’t know what’s up with that. You were conspicuous by your silence, so I am glad to hear from you. All’s good though; unless you object I shall weave the comment into my next post. Your wife is very observant–1066 indeed! ( is {} a hug?  looks like it)  Linnea

Luck is so important, watching the Football World Cup so many times the ball hits the post and lady luck decides the score. I always play my cancer center, the Princes Margaret Hospital lottery for cancer research and won small prices 3 out of 4 times. Lots of donated prices, a few big like houses, cottages, cars, cash, etc. Cost $100 per ticket or 3 for $250, this time I got the 3 prices, the bike worth $400, a Fuji digital camera over $100 and $100 cash. http://www.pmhf.ca/Pages/Lotteries/FactSheet.aspx

All’s good is Allah is good? Argentineans give big hugs and kisses, just watch Maradona hugging and kissing his players in every game, so 4Y a big  {} or an 88  used to say “kisses and hugs” among morse code and amateur radio users, as it resembles an image of two lips kissing. Is 4 times 22 your lucky number that resembles spooning.

See how Maradona helped his luck with the Hand of God:
Argentina v England, played on 22 June 1986, was a football match between Argentina and England in the quarter-finals of the 1986 FIFA World Cup at the Estadio Azteca in Mexico City. The game was held four years after the Falklands War between Argentina and the United Kingdom and was a key part in developing the intense football rivalry between the two nations. It was also a match which included two of the most famous goals in football history, both scored by Diego Maradona. His first, after fifty-one minutes, was the Hand of God goal, in which Maradona scored with an illegal, but unpenalised, handball. His second, after fifty-four minutes, saw him dribble past six England players, and in 2002 this was voted Goal of the Century by FIFA.com voters. Argentina won the game 2–1 and went on to win the 1986 World Cup.

Keep encouraging my misbehaving, be free to weave, do embroidery or netting with my comments.
Guillermo

New Hampshire wildlife

Yesterday I washed all the windows in the house and got the screens up. We awakened this morning to fresh air, birdsong, and the muffled roar of many, many motorcycles. It is Laconia Motorcycle Week, known simply as bike week in these parts. For the past week, thousands upon thousands of bikers have been roaring in and around our town.

Residents plan for this week the same way we did for hurricanes when we lived on the shore of Massachusetts. We stock up on groceries and batten down the hatches, and leave the house only if absolutely necessary.

On the upside, it gives the local economy a huge jolt of income and when you do venture out, the parade of bikes and riders can be very entertaining (and divert you from the fact that you are stuck in traffic). Biker culture includes people from all walks of life, and from a stylistic perspective, tends to be more expressive than the garden variety tourists in these parts. Tattoos and black leather abound, as do flowing beards and hair (much of it gray). Helmets are not required in New Hampshire, where the state motto is live free or die, but when worn, they may be decorated as well: much like the modern day Viking in the photo above, who is holding our daughter Jemesii’s hand several summers ago. Jem and our friend Sadie, who took the picture, spent the day at Weirs Beach, really the hub of bike week, shooting photos.

I’d love to go check out the wildlife myself, but I’m afraid it is the sort of gathering where many people will be smoking, so I’ll have to pass. Should the no smoking signs ever go up (in the land of live free or die, I don’t think so), I’m there.

Stability

The word I least want to see on a radiology report is progression. Resolution, in any form, is a highly coveted term, but next best is stability.

Yesterday we went over my latest scan with Dr. Shaw. In marked contrast to the previous radiology report, this one was short and sweet.

It reads:  “Multiple solid and ground glass nodules are stable compared to most recent prior study of 4/12/10 but have increased in size compared to 10/20/09 concerning for slowly worsening multifocal adenocarcinoma/braonchioloalveolar carcinoma.”

Slowly, I really like the sound of that as well.

Alice (Dr. Shaw) was also quite pleased with the report. The fact that there are no new lesions and no growth in previously identified nodules, suggests that my cancer is yet responding in part to the 1066. It also means that it is appropriate for me to stay on 1066 at least until my next scan in mid August. This buys me more time (always of the essence) and also gives those pharmaceutical companies an opportunity to further tweak whatever is next in my anti-cancer arsenal.

I am very, very pleased.

David and I also had the opportunity to meet two other couples at the hospital yesterday who are engaged in similar battles.  Leslie and Steve and Sue and Matt, although I wish we’d had a chance to be introduced under different circumstances, it was a pleasure and I hope we’ll see each other again, and again (for years and years!).

As I sat in the waiting room yesterday, I was really struck by how many young people were there. Five years ago, when I first started hanging out here, most of the patients were significantly older than myself. Sadly, that seems to be changing. But then, much has changed, and whereas progression in an individual cancer is a dirty word, progress in the lab is a very good thing indeed. My oncologist, Dr. Alice Shaw, is one of several researchers at the forefront of recent discoveries in lung cancer; discoveries which promise some hope in this hard-to-treat disease.

More good news to report, close to the home front. On Sunday the boys (David, Peter, Buddy) and I went for a hike in the woods. I was mostly looking for the reddish orange newts which appear underfoot at this time of year.

We saw plenty of those, but also spotted not one, but two, black bear in the woods. The first one was an adolescent and disappeared deeper into the forest so quickly that I only heard but didn’t see him. The second bear was very large, and we watched him for several minutes as he lumbered through the trees and then a clearing. He was spectacular. And no, I’m not a good action photographer, so I didn’t capture him on film. However, almost as good, I photographed some lovely (and slow moving) purple fungus. Enjoy.

Love and sustenance

I glimpsed my first lightning bugs/fireflies of the season last night. How magical are they? It’s easy to imagine a host of lantern bearing faeries in our backyard…

My scans were on Monday and I came this close to getting into a fistfight with a nurse. Kidding, of course; remember, I’m a pacifist and don’t wish to be accompanied by hospital security on my subsequent appointments.

I was, however, absolutely steamed. Generally the orders for my scans note that I forgo the oral contrast and that notation was missing. Anticipating confusion, I alerted the receptionist. Soon my name was called and a nurse attempted to give me two barium shakes. I explained (again) that I don’t take oral contrast and would she please contact either my oncologist or the nurse in charge of clinical trials to confirm this. She looked skeptical, but said she’d check. Twenty minutes passed, the very long line grew longer, and I began to worry that this confusion would bump me further and further back down the line. I again approached the desk, a phone call was made and the receptionist said “she’s bringing two shakes out for you now”. Sigh. Several minutes later a different nurse came out, bearing (you guessed it) two milkshakes.

I (carefully this time) repeated that I do not take contrast, and had not in fact taken contrast for well over a year. The nurse said that she had spoken to the radiologist who very much wanted me to drink the contrast (just drink the damn koolaid!).

But he didn’t order the scans, I said.  He is the one who reads them, she countered, and then went on to explain how difficult it would be to obtain an accurate scan should I not drink the contrast.

As I don’t want to devote this entire blog to the ensuing argument, I will condense.  She was stolid, but I was more stubborn yet. Back and forth we went, in the waiting room, in front of all the other patients. My own certainty, my experience (I am, after all, a frequent flyer), my pleas that she speak to not the radiologist, but rather my oncologist or the clinical trial nurse, were all ignored. I finally said that perhaps I just wouldn’t be having a scan on that particular day. She left the room, I made the phone call I had requested myself, and within minutes I was called for my scans; no oral contrast (no apology either, although I had fantasized that perhaps one might be offered).

When my clinical trial team agreed that I could skip the oral contrast (I still receive intravenous contrast), it was a small but important victory for me. Of all the potentially uncomfortable procedures that are part of my treatment for cancer, drinking those barium ‘milkshakes’ every two months was, well, certainly one of the most difficult for me to swallow. I have an incredibly strong gag reflex and it was just something I had come to dread.

Needless to say, I was not able to enter that soothing zone I prefer in preparation for a scan. Nonetheless, as I lay on the table I did my best to envision clean, clear lungs. And then Jemesii (who had joined me in Boston) and I went over to Newbury Street and had a martini. Calm restored.

On to other things. A bit more about ASCO. GRACE, Global Resource for Advancing Cancer Education, has an informative posting about Crizotinib by Dr. Jack West, who was in attendance at the conference. Click here for a link to his post.

And now, what about that title? Occasionally someone will ask what sustains me; what gives me strength and keeps me moving forward. I know that for a lot of people, the answer to that question would be their faith. Pas moi, my friends.

I am an atheist. As a child I went to Sunday School regularly and even had a plastic framed print of Jesus in my room (I thought he was cute). Around the age of ten or eleven, I really began to pay attention to the words of the sermons as well as the hymns, and asked a lot of questions. By my late teens I had decided that for me there was no God.

Some people have a rather dark view of atheism, and confuse the definition, disbelief in a deity, with a lack of belief in anything. Not true. I believe in many things. First and foremost, love. It goes without saying (but I love to say it!) that I love life. I also love love.  And I believe in love. I feel that it’s one of the coolest tricks we humans can do. And talk about magic; perhaps it is the only thing in the universe (I may stand to be corrected by you physicists) that the more you give, the more you get.

So that is what sustains me. The love of life, my family and my friends. And, as I choose to believe that everyone is essentially good, I love all those people I’ve not met yet.

That has been one of the very best aspects of life and breath for me:   through their comments, many people have joined hearts and hands, and by doing so a community has been created. A sustainable community of love, caring and understanding. That’s a beautiful thing.

Peter spreads some love around

Reports from ASCO, 2010

The annual meeting of ASCO (American Society of Clinical Oncologists) is this weekend, and Crizotinib is attracting some attention. Today the plenary session will include accumulated data from the PF-02341066 trial and already there are several online articles in which Crizotinib is discussed.

Medpage has a video interview with the PI (Principal Investigator) of the trial, Dr. Alice Shaw.  She is also my oncologist.

A reporter from Bloomberg Businessweek spoke to me some weeks ago, and today there is an online story about Crizotinib which mentions some of my own experience on trial.

And the Sunday New York Times featured an article in today’s paper that references two promising new cancer therapies; Crizotinib is one of them.

It’s really very exciting to witness and to have been fortunate enough to have participated in what I hope is merely the groundswell of a new era in cancer treatment. That this innovation should also be happening in lung cancer, the cancer that kills more people than all other cancers and which has been notoriously difficult to treat at all but the earliest stages, well, hallelujah.

Fresh life

The rain came down hard last night or as David would say, “like a tall cow on a flat rock”.  Just the ticket for washing away the remaining scum of pollen. The air has been clear and free of smoke for days now, and my attitude’s been scrubbed clean as well. Happy June.

Yesterday I chaperoned Pete’s class on a field trip to a lovely place called Sculptured Rocks Falls.  It involved a little scrambling across the stone, however I was most attentive, and managed to stay on my feet.

Our group then traveled to a camp on New Found Lake. Where I grew up, in Colorado, camp was a place where you staked a tent. In New England, it refers to a summer cottage.  Think 1920’s-1930’s, bare frame walls, wooden floors and bunches of bedrooms under the eaves. It is very charming and likely situated near the water. Often it is cherished by multiple generations of one  fortunate family and it is the perfect place to celebrate the beginning of summer.

Newfound Lake is spring fed and sparkling clean and the kids swam and boated in bright sunshine for several hours, after which we had a picnic beneath tall trees. Ice cream sandwiches were passed around and then it was time to head back to Sant Bani for an all school game of capture the flag.

As I drove away from the grounds, I noticed what looked to be a bird nest in the middle of the road. I pulled over to investigate, and sure enough; a beautifully made nest. The mud on the bottom that had secured it to a branch was yet wet, and some of the grass still green. When I told David about it, he said it probably was ripped from its perch by a marauding bird. Let’s hope the motivation was simply a territorial dispute rather than the theft of eggs.

Several days ago I took the second photo of a beautiful clutch of robin eggs in a nest tucked into a wild rose bush in our upper garden. Such a magical way to start life:  hatched out of a sky blue shell and nestled in a basket woven by your mother.

So I’ll end today’s post with this hopeful image. On Monday I have scans and by the time of my appointment with Dr. Shaw the following Monday, I should have a better idea as to how quickly the cancer is returning.

I am feeling very positive in general, yet I will await the results with some anxiety. I am not eager to start a different therapy, and remain hopeful that the cancer is also in no hurry.

It isn’t always easy to stay in the moment, but I do try. Were I to focus on my worries, I might miss something; something wonderful. Like a bird nest lying in the middle of the road.