Monthly Archives: January 2011

The good, the bad, the cold and the ugly

This is the frost on the inside of a window in my ‘studio’ Monday morning. It was a serious seventeen degrees below zero when we woke up. Very cold. The sort of cold that is beyond reasonable. Later that morning I drove to the grocery store and saw a bird I didn’t recognize sitting by the side of the road. It didn’t budge as I passed, and curious as well as concerned that it might be injured, I turned my car around to go investigate. The imperturbable bird turned out to be a blue jay, shivering in a patch of sunshine with its feathers so puffed up it resembled a baby penguin.

Our friends Brian and Jen were visiting from Baltimore, and they braved the frigid cold to go skiing. As they departed, my inner mother handed them each a face mask with strict instructions to wear it.

Jen and Brian snowshoeing on Sunday

Our guests returned from the ski area earlier than expected. Shortly after lunch Jen had wiped out and hurt her knee badly enough to score a ride down the slope in the ski patrol sled. I shooed them to the couch and had Pete build a fire while I got to work on dinner. The night before, Brian and Jen had cooked a spectacular meal, and David did the honors the evening they arrived. My turn.

By the time I said goodbye to them prior to bed on Monday evening, my cheeks hurt from all the laughter (and my head from all the wine). Two days and three nights of most excellent revelry.

Tuesday morning I was awake by 4 a.m. and left the house by 5:45 for a trip to Boston and the hospital for several appointments. It was zero degrees outside and snowing lightly, and driving proved a bit challenging. By the time I’d gone perhaps fifteen miles, I saw three different accidents and a variety of emergency vehicles. One car lay on its side in the deep snow by the side of the road, the headlights shining into the woods.

It was a no good very bad day to drive, and it took me a (personal) record 4 hours and 15 minutes to get to MGH. By that time I was an hour and a half late for my early morning appointment with the ENT. I was hopeful they could fit me in anyway, and sat there (futilely) until it was time for my blood draws in Yawkey.

Dr. Shaw was running late as well, and as lunch time approached, I took one of everything a pink-shirted volunteer was offering on her cart: tiny luke warm cans of V-8 and apple juice, and packages of crackers, bonny doons, and peanuts. Yum.

Eventually I was ushered into the back and Alice (Dr. Shaw) joined me a few minutes later. I’d been expecting a lousy scan report as I was still quite congested when I’d had my CT scan the week before (three weeks recovery time for the flu). However, it was again more or less stable; one lesion a millimeter larger, another two millimeters smaller. I broached the subject of less frequent scans, and to my surprise, it was now an option for those who lived great distances. After the drive that morning, I felt that I qualified, and unless there are symptomatic indications to the contrary, I will have my next scan in four months. Yippee!

The next stop was infusion, where to my great delight, they had booked me a bed and an acupuncture session with Irene. After dosing and picking up my crizotinib, I called the ENT office and the receptionist said to come on over.

This is where my day started to feel ugly. I was exhausted from the long drive and early departure, and it was already after two. What the receptionist neglected to tell me is that they would fit me in after all the other patients had been seen. I sat in the waiting room for three hours before I saw the doctor. I wish I could say that I whipped out my lap top and made good use of all the down time. But no. First of all, due to the lack of communication, I kept thinking that I’d be next. Secondly, I’d become rather undone.

I am really quite flexible and generally able to find some source of comfort in any given situation. I am, however, very impatient. In real life, whatever I am doing, I do quickly. I don’t like to go slow(ly). It is the character trait with which I struggle the most. However, I can generally find a way around my impatience; some sort of diversion. Even that morning, stuck in traffic, I had entertained myself by glancing out my windows and identifying things I would have liked to photograph.

But sitting in that office, with no timeframe, I simply felt trapped and lacking in control. And when feeling that way, I tend to just shut down.

Silly, really. And something I hope to overcome. But not yesterday. Good news and all, it was one  bloody long day and I didn’t get back home until more than fourteen hours after I’d left.

But today, I’m all better again. Of course.

Land of Oz: part two

And then it all got kind of weird. There had been talk of Diane and I going to New York on Tuesday to be part of the audience for the live taping of the Dr. Oz Show. By Sunday night we hadn’t heard whether tickets were available, so Diane and I decided it wasn’t going to happen. There was no school on Monday in honor of Martin Luther King Day, and I took Pete and a friend of his to lunch and a film. Around 1:30 p.m., messages were left on my cell phone and our land line by a producer (not the same one I interviewed with). I didn’t listen to these messages until a little after 5 p.m.  What I heard was that the tapes were great, and they really wanted all three of us to be part of the live show. I called back, and was told, ‘oh hi Linnea, sorry, due to time constraints, we couldn’t reserve a place for you’. Um, okay, I responded, feeling a bit stunned.

I then called Diane, who had also left a message, and who relayed that both she and the other interviewee, Eileen, would be traveling to New York on the network’s dime and would be scripted into the show.

Talk about odd (wo)man out. Nonetheless, I said to Diane, well, that’s alright. However, her response was, ‘no, it’s not’ and I said, yeah you’re right. It’s kinda rude, and what about solidarity?

So I left a message on producer number two’s voice mail, expressing my misgivings about the propriety of this situation. I followed up with an email to producer number one, whom I’d felt such a connection with. As I described in brief what had transpired, I summed up my current emotional status in rather plain language; I said I felt hosed.

In the meantime, Diane (had my back, she did) called producer number two to say ‘hey, what’s up?’ That producer called me back, with all sorts of excuses, (time, budget, etc…) as well as the explanation that the first two out of the three of us to have called back were going to be on the show. But then why, I said, did you say in your message that you wanted all three of us? So, so sorry. Nothing personal. And that, in fact, the budget allowed for me to attend the show, but I would only be part of the audience. My response? No thanks, that would actually feel even worse than not going.

So then the first producer emails me back, very upset. This has all gone down without her knowledge. She is so sorry, and could she call me. I give her my number. She emails back that she’s been called into her boss’s office.

Some time later, she rings. Again, she apologizes (and I believe her, I feel she is truly a caring person). However, after talking with her boss, the bottom line is, there is no more room on the stage. Two experts, two guests (the other women), and Dr. Oz. Five max. But, I can come, and sit in the front row, and they might ask me one question.

I really like her. I do. We could be friends. So I tell her the truth: that I spent enough (humiliating) time in high school warming benches (I was the girl who tried out for everything but who also really sucked–probably key to my evolving tenacity), and that this felt like a consolation prize, and thanks for trying, but no thanks. And then I explained, that this wasn’t about personal glory. If I was going to be famous, I sure didn’t want it to be because I had lung cancer. That I agreed to do these media gigs in the first place, because I thought it was important, and the right thing to do. And that I was never compensated for my appearances (in fact, in order to make them happen, would rearrange my own schedule, often travel long distances, spend hours of my own (precious) time and even personal funds), but that the one thing I required in return was respect. And that had just been denied, this all felt really shitty, and I really wished the silly invitation to attend the show had never been extended in the first place.

It wasn’t her fault, (producer number one) and I continue to really like and respect her. And, without a doubt, the show went on without me.

Once, many moons ago, I  followed a boyfriend to New Haven, where he was in school. I supported myself as a clerk at Dress Barn and posing as a figure model in the art school at Yale. I also lived in an old victorian with six other people, all students. My room was in the attic, in what was once the servants’ quarters, and across the hall was a brilliant young man working toward his PHD in physics. We became good pals, and one day he invited me to share his dinner. I sat and chatted with him as he stirred olive oil and garlic into spaghetti, and then watched, amazed, as he dished the pasta onto only one plate and then began to eat it.

“But Jonathon”, I said, “you invited me to join you”. “Yes”, he responded,” but it turns out there is only enough for one”.

That is what my experience with the Dr. Oz show ultimately felt like. I had been invited for dinner, but upon arriving, had been told there was no room at the table for me, and that perhaps I would like to take a seat in the pantry.

I’m certain Diane and Eileen performed admirably on Tuesday, and hopefully the show will bring more attention to lung cancer. I hope it will ultimately be something I can feel good about. For the moment, it has left a bad taste in my mouth.

The moral of the story; if you agree to participate in any sort of media project, realize that, just as the second producer said to me, it’s not personal.

im·per·sonal (im pʉrsə nəl)

adjective

  1. not personal; specif.,
    1. without connection or reference to any particular person: an impersonal comment
    2. not existing as a person: an impersonal force
  2. not showing human feelings, esp. sympathy or warmth: don’t be so cold andimpersonal

What’s been happening in my little world…

First of all, snow. Snow, and more snow.

And it hasn’t been just the white stuff that’s been whirling around:  I’ve been on a bit of a spin cycle myself. On Friday a one man film crew was here for several hours to work on a possible project. I had the starring role; Buddy was the supporting actor. Mostly I talked, but I did a little fake painting and some snowshoeing as well. That’s where Buddy was the scene stealer; at one point even barreling into the poor camera man (because that’s what you do to make friends when you’re a dog).

Not sure what will come of it all, but it was a fun afternoon; the young man, Keith, is also a documentary filmmaker, and has a film out now called Boys Of Summer.

On Saturday morning I got up and made a pot of spaghetti, as Pete would be flying solo that day (well, with Buddy as his wingman). And then I headed out the door to Boston, where I was to be interviewed and filmed once more; this time for a segment on the Dr. Oz show about young, non-smoking women with lung cancer. I was happy to still make the age cut off.

I was also feeling pretty together and organized, arriving 45 minutes early, at least until I discovered that my mapquest directions were absolutely useless. Anyone who has ever driven in Boston knows that it can be very unforgiving when you don’t know where you are going. Poor or non-existent signage, lots and lots of one way streets (which present few opportunities to correct mistakes), and an almost total lack of a grid system.

I overshot the first phantom exit by several miles, and pulled off Storrow Drive and onto a side street with a Dunkin Donuts. Although no one behind the counter could help me, I knew that before long one of the patrons would prove useful. In fact, two burly gentleman drew me a detailed map on a napkin, only to ask what town I was trying to get to. “Oh no, that’s the other direction”, and then they made all sorts of suggestion which had nothing to do with my original map. So, I backtracked. And missed the phantom exit again. I left a message with the producer, telling her that I was going to be late, and then executed an illegal u-turn at a light. I merged off of Storrow as if I was going to MGH (at least I knew where that was). On Charles Street I parked (illegally) in front of a hydrant and ran into a florist (when I was in Stockholm, I learned that as a trick of their trade, florists know where everything is). The florist’s advice got me on the right track, but now all of my mapquest directions were in reverse, and I was being directed to turn down one way streets going the wrong direction.

I knew I was somewhere in the general vicinity of my destination, so I left my car in the first available parking garage. Now quite late, and flustered, I also left my gloves and my cell phone. Luckily, although the temperature was in the teens, the sun was shining and the streets were not wind tunnels. Again I relied on the goodness of the people of Boston to guide me. One young lady even walked two blocks with me.

I had also chosen the wrong footwear for a trek along the icy brick sidewalks. After precariously making my way to the correct address, I rang the bell only to discover it was the wrong street. I was still two blocks away. At this point, I really just wanted to lay down on the nearest snowbank and have myself a good cry.

When I finally got to the proper location, I was almost an hour late. And of course, they had been calling my cell phone, which was in my car. Oh me.

My friend Diane, who coincidently was also interviewed, answered the door. And then the cameraman and his son, both of whom I’ve worked with before, gave me a hug (the son, Cory, is a blossoming filmmaker as well; click here to go to his website). More introductions were made, a quick lunch was served, I caught my breath, and we were ready to roll.

It turned out to be a great experience. The producer asking the questions obviously cared a lot about the subject matter, having been touched personally by lung cancer on several fronts. The entire crew was wonderful. And when my segment concluded, the husband of the last woman to be interviewed gallantly walked me back to the garage (which turned out to be about eight blocks away).

But that’s not the end of the story. Tomorrow, part two.

Snow Day!

It has taken me a week to get out from under the flu. My first night home, I hardly slept;  I was all amped up on steroids. That morning David says to me, “you’ve got food, you’ve got shelter, ask me for nothing”. Poor guy was totally swamped after two days of back and forth to the hospital.

After a basically sleepless second night, I did the math and figured I’d had a total of twelve hours of sleep in four nights. It was time for intervention. Alice prescribed ativan on Friday, and I went to bed at eight and slept for twelve blissful hours.

David shopped for groceries and cooked up a storm over the weekend, as he was getting ready to travel for two weeks. On Monday morning I dropped Pete at school and then David at the airport. I was still coughing too much to be out in public, but I needed a couple of days to just catch up on laundry et al anyway. And then on Wednesday, snow! Lots and lots of snow. I woke Pete up at 6 am to let him know school was cancelled, and he said “thanks Mom!” with such gratitude that you’d think I’d been personally responsible for the fact that he could go back to sleep.

This morning the sun was out and much to Pete’s chagrin, it was just a regular school day. However, tomorrow he will be on the ski slopes with his classmates: fresh powder is a splendid way to spend a Friday afternoon.

Not the fashion in which I hoped to start the year

Well Peter may have rallied, but resistance proved futile on my part. Mid morning on the first, I felt just a little bit off; and it didn’t seem to be from the beer, martini and two glasses of champagne I’d had the night before. However, as it was a warmish day, David, Buddy and I took a long walk through the woods. At the conclusion of our hike, there was a chill in my chest. I figured a hot bath was just the ticket. By evening, I was wheezing badly enough that it was necessary  to use my rescue inhaler. On Sunday my shoulders began to ache and I reckoned I was getting sick. Not one to be idle (willingly), I spent the day organizing and cleaning. That chill in my chest settled back in, and I took another hot soak in the tub. By bedtime I felt pretty crappy, and I was starting to sneeze and cough.

Monday I got slammed. Totally congested, productive cough, very wheezy, headache, nausea, aches all over, low grade fever. I had a scheduled appointment in Boston with my ENT the next morning, but I left a message with Dr. Shaw as well just to let her know that I  felt I might be developing pneumonia. She called me back after dinner to check in, and by that time my fever was up to 101.9. I had been drinking plenty of water, but eaten nothing and was pretty much flat out. She suggested I take 750 mg of levaquin that night (luckily I had a few pills left over from my last course), and to come in for a chest x-ray and quick check-up with her in the morning prior to my other appointment.

It kinda felt like one of the longest nights of my life. My headache was so intense, that I could sleep for no more than a few minutes at a time. I wandered between the guest bed, my lazy girl and the couch, but I couldn’t get comfortable. In brief snatches of sleep, I would dream in that vivid and obsessive manner peculiar to a fever state.

David had made arrangements for Pete to be picked up for school, as we needed to leave the house by 5:30 a.m. I wished to shower, but was also incredibly weak and wracked by nausea. I used the tiled wall to support myself for a quick rinse, but the moment I stepped out of the stall I vomited. As I lay there there on the floor next to my metal bowl, naked, wet, and shaking, I was feeling pretty darn pathetic.

As David loaded our bags into the car, a pack of coyotes ran right through the yard, yipping and howling. What a send off. On the long ride down, I semi-dozed. Arriving at the parking garage, David helped me into a wheel chair. We picked up a mask inside, as we still weren’t convinced that Pete hadn’t had the flu (despite his GP’s assurances otherwise). The receptionist in oncology hardly recognized me, as truthfully, I am  generally the picture of good health. As he was searching for the order for the x-ray, my hand and forearms began to twitch and contort uncontrollably. This new symptom was very uncomfortable and frightening as well, and I asked David to move me to the hall so I could lay down on a bench. As the twitching increased, he let someone know, and I was quickly back in the wheelchair and into Alice’s office where what seemed to be a small army of people took my vitals. Oxygen, blood pressure and even my temperature were all normal, but clearly something was very wrong. The decision was made to transport me over to the emergency room and I was strapped into a gurney and ferried over in a golf cart sized version of an ambulance.

My paper mask had been removed in Yawkey to help me breathe, but as soon as the word flu came up in Emergency, it was slapped back on. “Flu’s the flu”, the nurse shrugged. Overflow patients lined the hall, but I was isolated in a glassed off room. Everyone who entered put on a mask, except for David, who reasoned he’d already been exposed but who suddenly looked so vulnerable.

In an Emergency Room, priority is given to whomever is in the gravest condition. However, there was still an impressive flurry of activity; multiple questions (by multiple people), blood drawn, IV’s inserted, cultures and swabs taken, antibiotics administered and eventually a chest x-ray as well. It was determined that my sodium level was dropping (120), a potential medical emergency classified as Hyponatremia, and the likely cause of the twitching and cramping. They would need to bring the level up gradually, as doing so too quickly can cause complications as well. An ultrasound of an artery in my neck as well as my vena cava were taken, to assess the volume of liquid in my body in an attempt to understand the underlying cause of the condition. Pretty quickly it was determined that because I’d had a fever for more than 24 hours and eaten relatively nothing, the culprit was all those glasses of water.

You know, I always knew to give my children pedialyte or gatorade when they were ill, but I didn’t even think about it in my case. Lesson learned.

The chest x-ray came back positive for fluid, but not pneumonia, and we were still waiting for results of the other tests. I would be admitted due to the Hyponatremia anyway. Finally we got our answer: Influenza, type A, not the swine, but the seasonal variety. And I had a flu shot. Some girls have all the luck.

Finally a room was available, and now I really did strike gold. Because of my contagious status, I required a private room. And the only one currently available was on 20 Ellison, in what the nurse referred to as the penthouse. Wood paneling, tasteful decor, mini fridge and a sparkling private bathroom. Fabulous view of the Charles and NO ROOMATE. Oh my, it was going to be difficult to fly economy in the future after experiencing first class.

I slept a much needed seven hours and thanks to the all the support I was receiving (including Tamiflu), I felt significantly better in the morning. My sodium levels had returned to normal rather quickly, but given how precipitously they had dropped, it was not unexpected. Alice came by after lunch and asked if I felt well enough to go home. As swell as the accommodations were, I was ready to leave.

And one note about that first class suite: it’s still the same old hospital food.

New Year’s Resolutions: 2011

Well, Pete rallied yesterday, and we ended up going to our respective parties. His was a boy/girl sleep-over. My, how things have changed; although, according to Pete, they still play truth or dare. Ours was a festive little gathering at Mary and Raleigh’s.  One martini and two glasses of champagne later, I welcomed in the New Year. Staying up past midnight is truly a note-worthy occasion these days. On the way out the door (at half past twelve), I lay in the snow by their stone steps (in my New Year’s finery), and made a snow angel.

I have finally acclimated to winter temperatures, and this afternoon I took my third hike in as many days into the woods. Yesterday snow shoes were necessary; rising temperatures made them nonessential this time.

I love the forest this time of year. Without the canopy of leaves, it is nowhere near as dark as it was in the warmer months. The snow records the passage of everything, making the comings and goings of the animals transparent as well. David joined me on my walk today, and we added our footprints to the mix.

On this first day of the new year, I also gave some thought to my personal resolutions. They are, of course, always subject to change. For the moment, this is what I hope to accomplish in 2011:

Paint more, draw a lot.

Design and print some t-shirts.

Drive down the East Coast.

Plan a party for November 11th.

Dust off and play my old flute.

Produce and publish some wee books.

Make a dance video.

Learn to play the banjo and to tap dance.

Plan a trip to Gallapegos.

Get a six pack (and you thought the dance video was my throw-away resolution).

See 2012.

Have all my friends see 2012 as well.