Monthly Archives: September 2010

Stockholm: other angles

Open to interpretation

A day in the swedish countryside

Stockholm and Uppsala: out and about

Around Stockholm


Quick, quick post just to say god morgan (good morning) from Sweden. After almost a full day of travel employing a wide variety of modes of transport (car, bus, airplane(s) and a taxi), August and I arrived at our first stop in Stockholm; STF Fridhemsplan. Our flight out of Boston was a redeye, but we had time to enjoy a delicious meal at the Legal C in the international terminal in Logan prior to departure. Good thing, as the in flight dinner was never served. Our flight plan coincided with the path of a tropical storm (Ivan?) and so was quite turbulent for a sustained period. I actually found the rather gentle jolting soothing, and slept soundly for a couple of hours.

We had to change planes at Heathrow, which ended up being a huge hassle. Extremely poor signage, not one but two passes through security (where I had to justify my second quart baggie of liquid meds–alubuterol and such) and after going to the wrong terminal, a rather mad dash to the correct one.

When we finally deplaned in Arlanda, the order and serenity of the Swedish airport was a breath of fresh air. After checking in at our hostel (we are working our way up the food chain accommodation wise), we took a stroll around and ended having a great dinner out.

Yesterday August was feeling a bit under the weather, but a trooper nonetheless. As it was a beautiful sunny day we spent most of it walking around the center of Stockholm.

We are checking out of this lovely hostel (which bears no resemblance to the six dollar a night hostels I frequented throughout Europe in the 1970’s) this morning and after stowing our luggage in a locker at Central Station, we shall walk across the bridge to Gamla Stan. Tonight we shall have dinner at the home of some Swedish friends; tomorrow I hope to travel to Uppsala.

Herding snakes

Buddy and I just got back from a walk. On both the way down and the way up the hill, I had to shoo a snake from his basking spot in the middle of the road. I understood perfectly well his desire to soak in the sunshine, as the air possesses the crispness of fall today. However, it wasn’t a safe place for a sleepy snake to lie, so I herded him back to the tall grass. Buddy desperately wanted to help, but I kept him on a short leash, as it would not have ended well for either dog or snake.

I’m nursing a  bit of a stomachache today. Over the past few months, it would seem that I experience what I assume to be side effects from the crizotinib with greater frequency. Beginning in the early spring, I would have perhaps one day a month where I’d have a headache accompanied by nausea for an hour or two. Gradually the duration and intensity of these spells grew longer. Now it can happen two or three times a month; last for twenty four hours or more, and might be accompanied by spasmodic cramping in my calves.

I have to wonder if there is a correlation between the side effects and the fact that the I am becoming resistant to the crizotinib. This is merely speculation on my part (conjecture for which I am woefully under-qualified), but if the drug is either being blocked or somehow no longer completely engaged; perhaps there is potential for more noticeable effects on surrounding cells. If you fire a bullet and it enters the target, you can assume that most of the damage is to the target itself. However, if the target repels the bullet, it still has to go somewhere.

I had my monthly appointment at the hospital last Tuesday. Another potential side effect of crizotinb is a slower heart rate. When I began the trial I was taking 60 mg of propanolol (a beta blocker) daily to control a benign essential tremor. Within the first few weeks my heart rate had slowed significantly and I had to go down to 40 mg. On Tuesday my pulse was hovering around 50; which was somewhat slower than usual, so I earned myself an EKG. That meant a longer day, but I also scored a bed, lunch (oh hospital food!) and a short acupuncture session from Irene. I also had more time to chat and catch up with my favorite nurses; all in all, not a bad way to spend a Tuesday. The EKG was normal, but we lowered my dose of propanolol to 20 mg as a precaution.

Linnea and Sadie pretending to be figureheads on a schooner

I had my annual appointment with the dermatologist scheduled on Thursday, so rather than drive back to New Hampshire, I headed to Sadie’s home in Newburyport. We had a delightful 36 hour spree of talking, trivia games at the local pub (our team came in second), and lots of walking on the beach. Sadie and I also saw a movie, the absolutely amazing I am Love. I cannot recommend it enough; it moved me as perhaps no movie ever has. Make certain to stay through the credits.

My feet: firmly planted on the ground, one in front of the other, dusted with sand.

The following morning, Sadie awakened me just before dawn and we hurried to the beach to watch the sunrise. There were already several people gathered; mostly solitary women sitting on individual blankets, and I realized this must be a ritual of sorts. Off to our right a larger group was assembled in a circle for what we assumed to be a memorial. As the sun came over the horizon, they each tossed an object into the sea and then they broke into song. Between that and the movie the night before, I felt absolutely raw (but in a good way) with emotion. It was a truly spectacular experience.

And then we capped it all by driving to an isolated section of the beach where Sadie took some photos of me in the early morning light. I am (yes) dressed only in my skivvies, and in my favorites I am crouching down, the rising sun to my back, drawing in the sand. My stance resembles a shore bird, my face is alive with joy and wonder. I am in my element; another day just born.

Life: good to the last breath

The previous post, which spoke about my father’s death, was painful for me to write and couldn’t have been easy to read either. As creatures who love and feel deeply, we will each encounter the hurt of separation from those we care about.

Even though my father was unable to share and articulate his own feelings at the end of his life, I still learned much by observing the manner in which he passed. There was a good deal about the way Ollie lived that I admired, yet I absolutely did not want to die as he had:  unprepared, afraid, angry and alone in his head with so much left unresolved.

I vowed that it would be different for me. The fact that I had lung cancer was out of my control, but how I chose to respond to my situation was very much of my own choosing. I didn’t want to be afraid, and I began to learn as much as I could about my cancer. I reasoned that if I knew what to possibly expect, not only could I make better choices (in regard to treatment and how I wished to spend my precious time), but I could minimize a huge component of fear:  the unknown.

I wanted to be as strong as possible for what lay ahead, so I started physical therapy and counseling and began taking an antidepressant.

Next on my list was tidying up and fixing those things in my life that felt messy and broken. My relationships to family and friends were all approached with a new perspective. I initiated the long (and ongoing) process of ordering my physical environment; my surroundings but also the way in which I approached tasks. I began to implement the order that I had always craved but found so elusive as my life became more complicated (all those grown-up responsibilities).

And, slowly, I reached back into and began to honor my creative core.

I am lucky that I’ve had some years to follow through with my plan. Part of what was so particularly brutal for my father was the speed with which his illness advanced. I too floundered initially, but was given a second chance in the ring.

The photos are from the session I had with Sadie near the end of September in 2005. It was several weeks out from my father’s diagnosis as well as my first ‘dirty’ scan post chemo. Death was much on my mind. I asked Sadie if she would photograph me with my eyes shut so that I could see what I would look like when I was dead. I was absolutely serious, but it was also difficult to keep a straight face.  Some weeks later, Sadie presented me with this framed copy from the session; I call it ‘happy dead’.

Anyway, on that note I will end with a wonderful quote attributed to Josephine Baker…

“To live is to dance. I would like to die, breathless, spent, at the end of a dance.”

Two cancers: separate outcomes

We have just sweated through an uncommonly hot,  humid and hazy week. Here on the east coast, that means ozone levels rise as well, so I’ve limited my activity outdoors to short walks. Temperatures in the mid nineties weren’t enough to keep Peter off his dirt bike; he strapped on his Darth Vadarish boots and heavy protective gear and roared along the paths in the woods  along with his friend Liam. It has also been a week of parties on the hill, as our dear friends/former neighbors Pat and Will have been paying their annual visit. We’ve raised our collective cups more than once to life, laughter and good times. There was hope that hurricane Earl would push some rain our way, but we experienced only a brief shower last night. This morning there is a strong, cool wind whipping through the trees, and that has at least cleared the air.

Today I have found my thoughts circling back to September five years ago:  I had concluded four grueling rounds of chemotherapy (cisplatin/taxotere) and David and I were meeting with my oncologist for the first post chemo scan. We had every hope that I would be declared cancer free. However, although Dr. Lynch remained guardedly optimistic (I had yet to learn that this was his usual bedside manner), he explained that there was a 4 mm ground glass nodule in my right lower lobe; possibly inflammatory in nature but concerning for cancer. The nodule had in fact first appeared on a scan in June just as I began infusion; if it did represent a malignancy, the cancer had not responded to therapy. I left the appointment incredibly disheartened.

We had barely wrapped our minds around this news when I received a phone call from my eighty three year old father, Ollie. He fought back tears as he told me that after several months of abdominal discomfort of unknown origin, he’d been diagnosed with stage IV pancreatic cancer.

Almost unbelievably, he initially decided to fight it. He secured an appointment at MD Anderson in Houston and within days chemotherapy was scheduled. It was also several weeks after Katrina had hit, and another hurricane was threatening the gulf. After being discharged from the hospital, my dad and stepmother ended up getting stranded for many hours in a giant snarl of traffic as people attempted to evacuate the city. It was not a fortuitous start to what ended up being an incredibly sad and rather hasty end to my father’s life.

After the first debilitating infusion, Ollie declined more therapy. In mid October, David, Peter and I flew to his home in Texas, and my sister Bink and brother John met us there.

It was a very emotional but ultimately unsatisfying visit. I had (perhaps unrealistically, given his lifelong reticence) high hopes that our father would be able to really talk to us about what was happening; not just to him, but maybe about my own cancer as well. Although he was visibly pleased to see us, he shared very little and actually seemed to withdraw further. Saying goodbye was perhaps the hardest thing I’ve ever done.

In great pain, unable to eat, he began to lose touch with reality yet somehow managed to hang on through the third week of November.

I was calling every day, sometimes twice a day for updates. The last time he was able to speak to me was perhaps a week and a half before he died. He simply said (with almost child-like wonder) “Linnea–I’m still alive!”

In early November, a shipping container of furniture had been shipped to Marfa, and David felt it was imperative that he go there to unpack it. Not only was Ollie failing fast, David  was to be gone for thanksgiving and would not be returning until the evening of the 26th–my birthday. It couldn’t have been worse timing, and in hindsight, we never should have let it happen.

I was also contending with a very abrupt menopause as a side effect of chemo; the physical and emotional adjustment was quite difficult. I experienced severe urinary tract discomfort related to the hormonal changes, and at one point ended up in the emergency room.

And then, on thanksgiving day, Ollie died. I was inconsolable. Fortunately, friends had invited Peter to spend the day with their family and I was not alone, as Jemesii had come home for a few days. And then my sweet girl, who really didn’t know how to make much more than a pie, went to the grocery store and bought a rotisserie chicken, gravy in a jar, and cranberry sauce. She also whipped up a canned green bean and mushroom soup casserole (just like the ones we had in my childhood). Jemesii has always had a nurturing spirit, and on that bleak day she was my strength as well.