Monthly Archives: November 2012

More than one way to shine a light on lung cancer

On Tuesday night, November 13th, I joined my friend Lorraine Kerz in Keene, NH for a special Shine A Light on Lung Cancer Vigil sponsored by the Lung Cancer Alliance. One of many taking place across the country, it was a modest, grass roots affair–a far cry from the original Shine A Light, which took place in Boston on the same evening. The event in Keene was outdoors, our lights were glow sticks, and there was a two to one ratio of audience to speakers. Taped to the front of the podium was a picture of Lorraine’s son Silas. Lorraine spoke about his tragic death from lung cancer at the age of 29 and how his passing motivated her to become an advocate for young adults with cancer. I also shared my own story, and concluded with what I hoped to be a rallying cry to action. However, it is important to know your audience, and this small crowd would have been better served by some basic information about lung cancer. No matter; Lorraine and her friend Kim, who helped organize the event, are to be applauded for their contribution to raising awareness and I am so glad I was able to attend.

Tonight there will be another event designed to bring greater awareness to lung cancer, and this one will be huge. Organized by my (amazing) friend Christine Dwyer, a mutual friend of ours, Lynne Eldridge, has written a moving article about the event for About.com Lung Cancer. I asked Lynne for permission to repost the article here, which she graciously granted:

Niagra Falls: ready to be lit up for lung cancer!

“The Falls Will Be White for Lung Cancer Awareness 2012

Thanks to one solitary person with tsunami-like vision, Lung Cancer Awareness Month 2012 will again be celebrated by a lighting of the falls.
On November 16, 2012, Niagara Falls will be lit up in white for lung cancer. Not once, but twice.

Last year I shared the story of how this came to be. A story that transcends the event, transcends the waterfall, and transcends even lung cancer awareness month. The story about how a single person who wants to make a difference, and doesn’t say “I can’t,” can help each of us who hears it begin to say “I can.” I know I felt that way after hearing Christine Dwyers story. You can read it here:

The Birth of “Illuminate the Falls for Lung Cancer Awareness”
This year, on November 16, 2012 from 8:00 to 8:15 and again from 9:00 to 9:15 Eastern Standard Time the falls will be illuminated in honor of Lung Cancer Awareness Month.

If you get a chance to attend the event, dress warmly. You can watch the display from Niagara Falls State Park, NY, or from Niagara State Park, Ontario, Canada.

But the really cool thing is that anyone, anywhere in the world can take part in this event via live webcam.

Links for the live feed:

American Falls Live Webcam

Niagara Falls Webcam

Falls View Cam

Last year, despite the cold chill of November, Christine described the event as almost spiritual. As I remember her excitement, the thought keeps coming to my mind; what would happen if each of us lived the quote that Christine shared last year? “If you don’t like something, do something to change it.”

Christine has lived up to that quote. The event last year was driven by her realization about lung cancer – that it affects far too many people; people from every walk of life. Having lost her step grandfather, step dad, and best friend from the disease, she founded “Make Some Noise for Lung Cancer Awareness.” Most recently, and after arranging for Niagara Falls to be lit again for lung cancer this year, her dear mother has also been diagnosed with stage 4 cancer. As she stands in the cold — but with a warm heart – watching the falls lit up this Friday, please hold her in your virtual arms.”

So, hats off to everyone who turns passion into action. Christine, who thinks not just big but loud, also hosts a site called Make Some Noise for Lung Cancer. I like her style!

Lorraine, it was so good to see you again. Lynne, thanks for lending me your words! And Jemesii, happy birthday!!!

Comic relief

My beautiful daughter JemesiiSunday, November 11th,  was Veteran’s Day but also my ‘lucky day’, as 11/11, eleven eleven or (my preferred presentation!) 11:11 are signifiers of good luck, a superstition I have observed since childhood. By happenstance, Bill Cosby was performing at The Music Hall in Portsmouth on 11/11. Jemesii is a big fan, and I asked her if she’d like to go see him in celebration of her birthday (she will be 28 years old on Friday!). The two of us shared a delicious meal at the Black Truffle Bistro before the show. And then we settled in for almost two straight hours of good old fashioned entertainment.

I tell you what, Mr. Cosby is still in fine form, and played the audience to great effect. Jemesii and I got a workout laughing (really, see the link) as well as the resultant endorphin high. A night out with my daughter, excellent food, and a whole bunch of chuckles. The best sort of medicine for body and soul.

Word salad

‘The practice of stringing together words that have no apparent connection to one another–an extreme form of incomprehensible speech.’ (about.com)

Road salad

Alice (Dr. Shaw) called me at 4:15 yesterday after consulting the urine culture from Sunday’s visit to urgent care; the only antibiotics to which the infection was not resistant were ones to which I had an allergy. With no other option aside from IV antibiotics, we decided that I would try a cephlasporin. The last time I took an antibiotic in that class was over twenty years ago and my cheeks had immediately taken on the appearance of having been slapped; I have avoided cephlasporins since. As this had been a relatively minor reaction, we decided they were now my best option. The pharmacy is a twenty minute drive from our home and snow and sleet had been forecast. Having  been awake for almost 60 hours now, I was eager to get this errand out of the way.

I got to the pharmacy shortly before 5 pm. They had not received my prescription yet; I called and left a message for Alice. After 25 minutes the fax with the scrip came in, but they didn’t have any of that particular drug in stock. If I didn’t want to wait until tomorrow afternoon (not an option) they could see if it was in stock at their other pharmacies. After placing a handful of calls, they found a pharmacy in Manchester that had 10 out of the 14 pills I would need.

I have a GPS system but it wasn’t in the car. The liquid crystal screen is sensitive to freezing temperatures, and I had brought it inside several days earlier. I set off with some handwritten directions, but I quickly realized I didn’t actually know how to get to the starting point, 93 north. Having pulled onto highway 293, I pulled off at a familiar exit and stopped at an urgent care facility for directions to Elliot hospital, which was adjacent to the pharmacy. And then I stopped at Elliot hospital and asked the receptionist how to get to the pharmacy (connect the dots…). I got to the pharmacy by 6:30, but even with my additional stops I was somehow faster than the fax machine, so I called Peter and told him he would need to make his own dinner. A little before seven, drug in hand, I was on the road home.

Or so I thought. Nothing looked familiar, and with a sinking feeling, I realized I had no idea where the hell I was. Taking an exit off the highway, I pulled into the parking lot of a grocery store and sat there and cried. Not knowing what else to do, I approached the customer service window, bawling like a little kid. I explained that I hadn’t slept in days, and that I was lost. I just wanted to go home. The very compassionate young woman took a lot of time to write out directions for me. No street names, just things like ‘and then you turn left at the green sign and go to the toll road.’ What toll road, I asked? The toll road. It was like an incomprehensible story problem and I simply wasn’t up to the task of deciphering it.

After asking her if I was in fact north of where I wanted to be, I thanked her for her trouble and did the only thing that made sense to my increasingly panicked and addled mind. I took 93 south. By the time I recognized where I was, I had a choice of heading south to Boston or east to Portsmouth. Having once again overshot my destination, I was far from home. Now crying with abandon and frankly scared out of my wits, I drove east, took the first exit, and turned around again.

I eventually found the exit I needed. As I drove the last twenty minutes down what should have been a familiar road, I struggled to recognize my surroundings. I also began to wonder if this was real or if in fact it was a nightmare. I had been gone for over three hours when at last I pulled into our driveway. Peter greeted me at the door, wondering if I was okay. I hugged him to me and told him that I was having a hard time putting my thoughts together. And that if I became more confused or unresponsive, he would need to call 911.

Obviously, I had no business driving, and we need to get a plan B in place pronto. What that means, I’m not yet certain, but I am fast approaching a place where managing on my own is sometimes not only impractical, it’s impossible.

Alice called to check on me at 9 pm. I had taken the antibiotic without incident and by 10 pm, something wonderful happened. I fell asleep.

Crazy making times

I’ve been awake for 58 straight hours–a bizarre but oh too familiar reaction to an antibiotic. On Sunday I came down with my third urinary tract infection since September, a frustrating situation that evidently is not a reflection of the state of my immune system (I look great on paper) but rather just a garden variety problem that has gotten a little out of control. With each of the recent UTI’s I’ve been put on a course of macrobid, the first two times without incident. However, just as I have in the past with levaquin, on Monday night I developed insomnia. As luck would have it, David left on a business trip early Tuesday morning. Not yet certain the insomnia was related to the antibiotic, I took two doses of macrobid yesterday. I also let the dog out for a pee and forgot about him. Fortunately, when I did remember that I had a dog, he was sitting by the door.

Yesterday was election day and parent teacher conferences at Peter’s school, so I headed off to the polls with the hope that I would remember to vote for the right candidate (I did). I got through the conferences, only to drive home in the dark without my headlights. Lordy.

Well, I didn’t sleep last night either. Sometime around 4 am I sent an email off to Dr. Shaw. I think I used the word concerned at least four times. This morning I got a little emotional thinking about how I was going to safely drive Peter to school, but I managed. Back home, I lay down hoping that I would just drift off, but the part of my brain that regulates sleep seems to be broken.

So, that’s that. Unfortunately, I am allergic to or intolerant of a number of antibiotics and one more just got crossed off my list. It’s concerning.

On Monday, before sleep or the lack thereof became the focus of my universe, I had a scan review with Dr. Shaw. I’ll cut to the chase: stability was a one off. I am back on track, as it were, with slow and steady progression. However, there is a silver lining to this cloud. I can stay on trial for six more weeks.

So that’s the scoop. I’m off to the pharmacy to pick up another antibiotic. And then I’m going to feed Pete, pop an ativan, and pray for sleep.

Power on

My every-six-week chest CT scan in Boston was scheduled for 2 pm on Monday, the day Sandy was coming ashore. As luck would have it, the MBTA  had announced that they would be shutting down at exactly the same time, and many of the hospital staff rely on public transportation. So I gambled on going in early, which turned out to be a very good thing. Yawkey was running on a skeleton crew, but many patients had also cancelled, so I was able to get my scan and be on the road again by about 1:30 pm. The storm was really starting to pick up as I headed north and there were a few dicey moments when the wind would come blasting over a ridge and hit my car with enough force to shove the vehicle sideways.

I made it safely home shortly before three. David was baking cookies (for cheer and courage in the days to come). Generator, candles and bottled water at the ready, we watched the weather channel as the storm howled outside. After flickering on and off for hours, our lights went out for good at 7 pm.

In anticipation of the storm, school had been cancelled on Monday and remained closed on Tuesday. That afternoon Peter and I needed to go back to Boston, as he had an appointment in the city. There was little traffic, but otherwise no apparent ill effects from Sandy. We enjoyed a warm meal and after checking on the status of the power at home (still out), camped out at a Starbucks for several hours so that Pete could work on homework.

Wednesday brought lower temperatures and a return to school for Peter but still no power. Our small (and noisy!) generator took turns heating the aquariums and cooling the fridge, but the lack of heat and running water were becoming more problematic. Peter and I decided to spend Wednesday night at the Comfort Inn. David came over for a shower, but returned home to tend the generator (as well as the dog and aquatic life!).

After dropping Peter off at school on Thursday morning, I returned to the hotel for a nap and then after check out, stopped in yet another Starbucks to suck up some wifi (and suck down a mocha while I was at it). At 2pm I got the call I had been waiting for:  power on!

On the outer edges of Sandy’s reach, we experienced only a few days of inconvenience; temporarily deprived of creature comforts that we have come to take for granted.

My heart goes out to those for whom the storm’s impact has been far greater.