Tag Archives: living with terminal lung cancer

Ten four. Incoming: year fifteen

Well y’all, I may be limping across the finish but I made it. It’s now been fourteen full years since my world turned upside down. Fourteen years since I learned that in fact you could be forty-five years old, a never smoker, and still get lung cancer.

My general practitioner–the same one who misdiagnosed me with asthma–broke the news. It would be several years more before I would learn that my earlier doctor–who had been traveling to a birding convention on the morning of September 11 and was a passenger in one of the jets that hit the twin towers–had written this in my charts: ‘On the off chance that this young non-smoking woman has a lung neoplasm.’

By the time I received the diagnosis, my tumor was five centimeters in diameter. Fortunately, the brain MRI came back negative for metastases and the full body PET and bone scans also seemed to indicate that the cancer was contained to my lung.

One week later I met with my thoracic surgeon. I put on a pink sweater that morning, consciously trying to look young, healthy and worth saving. Another week would elapse prior to my surgery. I had wanted to pin a note to my johnnie reading ‘Out, out, damn spot’–a cheeky nod to Shakespeare, but I chickened out.

The surgeon had explained that the first thing he would do would be to remove a number of thoracic lymph nodes which would be biopsied immediately. If any of them came back positive for cancer, he would close me right back up.

When I awakened in the ICU, my first question was whether or not it had been a long surgery. All of the tubes running from my body should have made that obvious.

Once I was released to a room, Peter came to visit with his dad. He immediately crawled up in my bed and wrapped himself around my legs and just lay there whimpering. It broke my heart but also reinforced what I already understood–I absolutely had to stay alive.

In 2005 no one could have imagined that fourteen years later I would in fact still be here. Two weeks from today, we will celebrate Peter’s 22nd birthday.

It’s been an incredible journey and it’s not over yet. Here’s sincerrely hoping that a year from now, I’ll be posting a giant fifteen at the top of the page.


I don’t even know where to start

I decided several days ago that I would no longer complain (as in, I’m over it). So I’ve been giving a lot of thought as to where a complaint ends and an explanation begins. If that makes sense.

Let me try to explain.

One definition of complaint is:  ‘a statement that a situation is unsatisfactory or unacceptable’.

This has been a difficult (scratch that…sounds a little complaint-ish)—this has been a challenging year. Learning to live alone again, the death of my mother, our (ongoing) divorce, managing my cancer and the side effects of treatment.

However, (and this is why I am absolutely determined to abstain from whining/complaining), I am alive.

Remarkable, really. In fact, I am coming up on the ten year anniversary of my diagnosis with non-small cell lung cancer.

It’s been an amazing decade—packed with experiences I didn’t think I was going to have. I am beyond grateful.

However, you can’t be in treatment for cancer that long without a bit of collateral damage. I told Dr. Shaw some months ago that I felt like someone who had done a lot of hard drugs. Her response? “You are someone who has done a lot of hard drugs.”

Which brings me to my explanation (not complaint). Words don’t come as easily to me as they once did. I speak more slowly and I think more slowly as well. I have difficulty remembering things and impaired memory is now listed as a condition on my medical chart. The combination of forgetfulness and inability to focus means that it takes me much longer to accomplish even seemingly simple tasks.

So I have put off writing.

Really, it’s rather ridiculous. Writing is probably exactly the thing my brain needs most right now and goodness knows I’ve missed all of you. And besides, sometimes it’s just a matter of mindset. Oh man, I really need to update my blog and it’s stressing me out is switching it up to I’M ALIVE AND READY TO WRITE ANOTHER DAY!




Where have I been (moving right along)

All over the map and engaged in just about every variety of activity except for writing. Oops. I have this theory about getting behind. It involves activation barriers and the fact that the longer you put off something you need to do, the more daunting the task becomes. The more daunting the task, the less likely you are to tackle it. There is the temptation to just move on. However, if you are (as I am) a conscientious procrastinator, that is impossible. You become your own worst enemy and there is nothing to do but surrender.


My distractors (David, Peter, Buddy) have headed south for the last of the summer’s fishing and blue crabbing. It is just me, my lap top and a nagging sense that there are things left unsaid…now where was I?

Way back at the beginning of August, 8/1/13 in fact…the actual August (our big boy) bid us adieu. It had been a wonderful week and it is always difficult to say goodbye. However, this time was a little different. I have been quite transparent in my attempts to nudge August back to the East Coast. And….I am happy to report that it just could happen. It’s been ten years since he moved to Colorado and my eldest son is not one to embrace change. So we are exploring this possibility in baby steps. But, I remain ever hopeful. And perhaps unreasonably excited.

Photo by Sadie Dayton

Photo by Sadie Dayton

Of course, even as I cross my fingers that one child may be moving back home, I am preparing for the departure of another. Master Peter Duff heads off to boarding school in a week. Every time I think about it my breath catches and my heart seems to skip a beat. After almost twenty nine years of hands-on mothering, this is not going to be easy.

Peter is just so much fun to be with. And I shall miss our daily repartee. The other day we were talking about hair. I finally found the perfect cut for me—I was sitting in the chair at Super Cuts, and my favorite stylist Tiffany had the scissors poised above my head. What to do? I glanced at the eight year old boy in the chair to my left, and decided I wanted my hair to look just like his. So, a little longer on top, and shaved to 3/4 ” on the back and sides. I like it. However, I digress. I had hoped that Peter would submit to Tiffany’s ministrations as well. However, he was still on the fence about whether or not he would simply shave all his hair off. I protested rather strongly (which, psychologically speaking, is probably the worst thing I could do. Mom doesn’t want me to do it? Decided!) Anyway, my effort to influence his decision went like this: “Get a trim and you are a handsome boy with great hair. Shave it all off and you look like a skinhead.” Alas, subtlety is not my style. Peter claimed my observation was ‘racist’ and Tiffany didn’t touch a hair on his head. Yet.

Photo by Sadie Dayton (check out that hair)

Photo by Sadie Dayton (check out that hair)


One, two, three….

I had special outings three days in a row, and may not share in chronological order as I’m waiting on permissions for a photo taken at one such event. Let’s start with dinner out in Portland, Maine: always a pleasure.

With Peter away in Cape Cod, David decided we needed a meal up north. Portland is home to several superb restaurants and our spontaneity meant we couldn’t secure a reservation at our favorite (Hugos), but we were able to enjoy a meal at another fine venue, 555. We arrived in town a bit early and so had a snack (salad and iced tea for me, mussels and a glass of chardonnay for David) down by the waterfront. We then spent an hour strolling around town, window shopping and people watching.

Dinner was excellent: mint and pea soup, pepper crusted seared scallops and a fennel puree. A lovely cucumber ‘mocktail’. And….I think I had some sort of ginger souffle for dessert. I texted David, who has jury duty today to confirm. He recalls a chocolate souffle, and his recollection is backed up by the bill. I stand firm (if muddled) on this:  David had chocolate, I had (some other sort of) souffle, and we shared. Even if I can’t pin down the details (something to be said for blogging a little sooner after a special day), I can assure you it was delicious. Whatever it was.