Monthly Archives: September 2012

Not your average cupcake.

Marguerite’s famous cupcakes

First, thank you all for the messages of support; whether is was a comment here, on facebook, or a private message, they are all so very appreciated.

What a week! I’ve not written sooner as there has simply been no time. In anticipation of an upcoming biopsy and perhaps the start of a new clinical trial, I had left my days rather open. Well, nature abhors a vacuum and once we got the good news, my calendar filled up fast. David had a business trip planned to France that had been put on hold, but it too rematerialized, and he has been out of the country for seven days now. There has been a good deal of general scrambling this week; on more than one occasion, I’ve driven Peter to school still dressed in my pajamas.

I may struggle to keep my own house in order, but at my home away from home, The Yawkey Center at MGH, calm prevails.

The level of care I receive is extraordinary. When I walk up to the desk in 7B, I am greeted warmly and by name (as are all the other patients). The trio of phlebotomists are cheerful and exceedingly competent and getting blood drawn is drama free. Generally I recognize a patient or two, and on this past Monday my friend Christian and I had some time to socialize before being called in for our respective appointments.

When first led to my private room, I am weighed, my temperature is taken and my oxygen saturation and blood pressure are measured. On Monday I was just making myself comfortable when Marguerite came in, bearing a dozen red velvet cupcakes. For ME.

I met Marguerite four years ago, on October 1st of 2008. It was the day that I was first dosed with PF-02341066; now known as Xalkori. Marguerite was the phase I Research Nurse and she quickly became my go to person for support. I jokingly called her Mother Superior; she was so obviously in charge and yet also entirely accessible. Recently she transferred from phase I to the thoracic unit, which means I will be seeing her much more frequently. I couldn’t be happier; I adore Marguerite. And the cupcakes? Just the icing on the cake.

When Alice (Dr. Shaw) came in, we went over the scans side by side with the images from six weeks prior. Clearly, the cancer covers exactly the same area as before. No better, no worse. However, to my eye there appeared to be areas of less consolidation in the current image. Alice cautiously concurred, although our observations are not supported by the radiologist’s support. Encouraged, I resolved to shoot for the moon and hope for more resolution on my next scan.

We then discussed the congestion in my lungs, which is again becoming more problematic (it seemed to clear up somewhat after the course of antibiotics for the UTI). It is a relief that my symptoms do not seem to correlate with progression of the cancer, but it is also a bit confusing. I wondered if it were possible that anatomical changes might a contributing factor and Alice said that it is certainly possible; scarring in my lungs could in fact lead to a decrease in function. We decided that daily use of a nebulizer might help.

As Alice listened to my chest, I showed her the middle toe on my left foot, which I had stubbed rather badly the day before. After she left, my scheduler Mike came in and I exchanged my dosing diary and old bottles of drug for new, before grabbing a quick lunch with Christian and then heading north to pick Peter up at school.

By the following morning, the appearance of my stubbed toe had changed dramatically; an angry throbbing red, I felt pretty certain it was becoming infected. Peter had an interview at Exeter that afternoon, and I was unable to get into my GP in the window of time I had before I needed to pick him up at school. So I called Alice. We agreed that I should go to urgent care after Peter’s appointment and that the attending physician would call her before prescribing an antibiotic. “But Alice”, I said, “I won’t be able to get there until at least six and it will be after hours for you.” Her response? “So?”

In short, I was diagnosed with mild cellulitis. Alice was called and an antibiotic prescribed. It was after dark when Peter and I got home and there, sitting on our doorstep, was a box containing a nebulizer. No prescription to fill, no discussions surrounding insurance, no arrangements to make. All the hard work had been done for me, and now all I had to do was plug it in.



This one’s a YES!

On Monday I went to Boston for my six week CT scan. My mom, Evalynn and stepfather, Jim were visiting from their home in Utah and they came along. After having my labs drawn, Dr. Shaw and Margeurite (all time favorite nurse) were kind enough to step into the waiting room for a brief introduction. It meant the world to my parents, and made the day a special one.

That evening Alice (Dr. Shaw) called after having viewed the CT scans along with two radiologists. The results were a bit astounding–there appeared to be no significant change. This news caught me  a bit off guard as I had been preparing myself for anything except stability. Now I had the option of staying on drug for six more weeks. It took a couple of seconds to adjust my mindset (cancer really teaches you to think on your feet) before deciding yes, this was the obvious choice. As we ended our conversation, Alice cautioned that she would receive confirmation once measurements were taken and the actual report was written.

Yesterday Alice called once again; my scans were really, truly, stable. So, here I am, on the edge, but holding. And I am fine, make that better than fine, with my current status. I’m on a journey, and this traveler plans to take her time. It’s going to be back roads, blue highways and the scenic route for me.

Flights of fancy

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And leaps of imagination. These are some of my favorite images from the shoot last week with my friend Sadie Dayton. Our day began early; we were on the beach at sunrise. Sporting at various times a bird mask, vintage silk lingerie, satin slippers, fishnet stockings, and Peter’s great grandfather’s dress tails, I frolicked in the early morning light as Sadie shot frame after frame.

We, Sadie and I, have always seen the best in each other. In some ways, she is like the twin I longed for as a child (oh–the trouble we could have gotten into!). Our mutual understanding and trust runs deep: in her presence, I am completely comfortable and free from inhibition.

When asked to take these pictures, Sadie said yes without hesitation. She understood the sense of urgency; my need to see just exactly where I am, right now.

Standing on terra firma, with spirit intact.

Of ebb and flow

Picture of Linnea by Sadie Dayton: September 2010

On Monday I pushed myself to swim forty lengths: the season is coming to a close. The next morning I met with Jen Logan (a fabulous nurse practitioner) and my oncologist, Dr. Alice Shaw. Alice had told me some weeks ago that my previous scan had been reassessed and the measurement for progression had come back at 12.8. Technically, this meant that if my upcoming scan showed only minimal progression, I could stay on LDK for at least one more cycle.

However, in the days since, there has been a noticeable decline in my sense of well being. I’ve continued to lose weight, and am often short of energy and breath both. Part of the problem is that I am once again anemic; the recent addition of an iron supplement has proved helpful. Yet I am also symptomatic in a way that is distressingly familiar; the ragged cough and crackling sound my lungs make when I recline are clear indicators that cancer is beginning to get the upper hand.

On Tuesday we discussed both options and timing. Alice feels that unless the next scan is absolutely unchanged (not a likely scenario) we will stop drug and schedule either a core or surgical biopsy. Although she would prefer that I get as much time out of this therapy as possible, there is nothing to be gained from waiting too long.

Tuesday night I experienced some serious diarrhea (personal defintion: seven or more episodes). Mindful of the potential impact on sodium levels, I pushed the gatorade. On Wednesday I felt rather punky, and by Thursday morning there was blood in my urine and a lot of discomfort: clearly a urinary tract infection. I paid a visit to my general practitioner and started on antibiotics. By the afternoon I was nauseous and running a fever just shy of 101.5. Fortunately by the following morning I was fever free, but it is obvious that my immune system is working overtime.

The photo at the top of the page was taken during ebb tide, on an early morning two Septembers ago. Minutes earlier, Sadie and I had watched the sun rise. Crouching close to the wet sand, it was as if I could feel the hum and throb of life itself.

Seven years ago this month, I had just concluded chemotherapy when Sadie and I had our first photo shoot. Bald, skinny and with the lobectomy scar a fresh pink slash across my back, I was battle scarred. I’d asked Sadie to take pictures because I wanted a record of what I had just been through, but I got more more from that one day than I could have imagined. The photos showed a strength I’d not known I had. And Sadie, a casual acquaintance before, would become one of my closest friends.

Last week I asked Sadie for another favor and in two days, I will bring the costumes and she her camera. The timing is just a coincidence, but I like the implicit sense of anniversary: something about September. The ebb, the flow.

Cancer as cargo: sharing the load

Time for a yippee ki-yay for a fellow blogger; my friend Kim. One of the perks of writing a blog is getting comments, and that is how I first met Kim. After checking out her blog, Aquarius vs Cancer, I signed on as subscriber, pal and fan. A damn fine writer and wise beyond her years, Kim is spunky and feisty too as she navigates life with lung cancer.

As of two weeks ago, a bright yellow sticker has shone from the rear window of my vehicle, a tongue in cheek declaration of the cargo I am toting (there is a smaller version as well, perfect for the back fender of a bike). CANCER ON BOARD is Kim’s brainchild. She had stickers printed and through her blog, has offered them free to those who ask. I think there is some real fundraising potential here, and I am sure Kim would welcome suggestions in addition to requests for stickers.

And now an introduction to Kim, in her own words, followed by reprints of two recent blogs. Read, enjoy, bookmark her site (once again, Aquarius vs Cancer) and wish Kim the very best on this journey.

About Kim

Hello.  I’m Kim.  I’ve got lung cancer and I’m not very happy about it.  It pretty much sucks.

At age 34, I was diagnosed with Stage 3b lung cancer on May 11, 2011.  On  September 14, 2011 I learned that my cancer spread.  It is now considered incurable.

This blog is my story for friends, family, and fellow travelers.


Her name is Therapy

Posted on July 18, 2012

I was diagnosed with Lung Cancer in May 2011.  Months before, in January 2011, I began to notice I had difficulty breathing while exerting myself.  I was pretty sure I had asthma.  Great.  With this development and wanting to reduce the wear and tear on my joints, I decided to swap my running hobby for cycling.

At the end of April 2011 SW and I purchased road bikes.  The beauty I ordered would be ready for pick up in 15 days.

As it turned out I did not have asthma.  Between the bike purchase and pick up, the pulmonologist confirmed that I had a nice-sized tumor in my left lung.

When I went to the shop to pick up my bike I was told I’d get a complimentary 60-day tune up.  With all seriousness I told the clerk, “I’m starting chemo and radiation next week.  I’ve got cancer.  Can I get my tune up when I actually ride my bike for 60-days?  It might be a few months or even a year?”  He looked at me like I was insane and squeaked out something along the lines of, “Holy shit.  Yes. Get it whenever.”  When I inquired if I could get that in writing he replied, “You don’t need to.  Just tell who ever helps you that same line.  You’ll get taken care of.”

I’m actually, now that I’m feeling swell, logging miles on my bike.  I’ve named her Therapy.  She’s a beautiful white bike, like the lung cancer bands people wear.  I ride her to my weekly cancer support group meetings.  It’s only 4 miles away but I love that my fellow cancer survivors think it is a huge accomplishment that I ride there.

Cancer has not taken away my competitive spirit.  I’d like to ride Therapy to more of my engagements around town.  I am awfully intimidated by the hills though. The load on my lungs while climbing a hill is a little alarming.  A fine line exists between training my lungs to work harder and pushing them too much.  My medical team tells me to push with caution; I hope that is what I am doing.

Therapy is going in for her 60-day tune up this month.  I do intend to play my usually hidden cancer card if they try to charge me for the tune up.

Where do I fit in?

Posted on August 10, 2012

It’s no lie when I say I’ve always felt like I don’t really fit in with the rest of the world. My mother always referred to me as the kid who has 100 friends. She was and is correct. Among this group I have always felt like the cheese who stands alone. Living with my cancer, currently treated with Crizotinib, contributes to this isolated feeling.

I am so very thankful for Crizotinib as it allows me to live more closely to the life I had before cancer.  However, it is a tricky space to be.  My cancer buddies are constantly being beaten up by their chemo or radiation.  My  non-cancer friends are striving for promotions at work or planning vacations to distant places.  I am doing neither; yet I get caught up thinking of both.  I am aware that my cancer friends’ fates will probably be my own and I also dream of travel to distant places or for a fabulous backyard remodel.
I am an able disabled person. I am a non-sick person. Striving to be grateful for each and every day.

Farewell to the tiniest

After dinner Peter and I buried the butterfly; a small grave scooped out with a spoon beneath the butterfly bush. For the past five weeks, I’d continued to replace the wilted flowers with fresh and fill the bottle cap daily with sugar water. Conflicted about keeping the butterfly captive but knowing that it would not survive if freed, I’d shift the makeshift container to the screened in porch so that it could feel the breeze and warm in the sun.

Slowly its once gaudy wings grew drab as the blue scales rubbed away. Initially quite active, it now spent most of the day clinging to the ribs of the overturned salad spinner. Yesterday morning I spotted it atop a spray of goldenrod. By late afternoon it was back on the bottom of the enclosure, listing to one side and twitching almost imperceptibly. Its time had come to an end.

The grief I feel is totally out of proportion, as outsize as the spirit this little insect seemed to possess. The longer it lived, the more unreasonably attached I had become. I didn’t just anthropomorphize, I practically mythologized.

Crazy, I know. Immoderate to the extreme. I have always admired insects, although never given a second thought to quickly dispatching the blood sucking varieties. And now, one little battered butterfly, through no design of its own, had stolen my affections.

When we care about something, it takes on more value. Sometimes we attach both meaning and great significance to that which we are invested in. These are human constructs, and represent both the best and worst of our species. It is good to care, but absurd to make it all personal, and more foolish still to think that we can exercise control.

By nursing a tiny butterfly, I, for the briefest of times, played puppet master. I experienced the feeling of power that comes with keeping another alive. And in turn, I felt the devastation when my best intentions were no longer enough.

Invariably (and yes, mine is a secular viewpoint), despite all our tinkering and interventions, nature will run its course; life will give way to death. This, I understand. But what my head says, my heart doesn’t want to hear.