Category Archives: recurrence

Threading the needle

So. For me, this, right now, is the most difficult part of dealing with my own cancer. The mind fuckery of waiting. 

My friend Tom Monks replied to a previous blog with a comment that could be a little Haiku poem:

Waiting for results
Waiting anxiously
Waiting patiently
Waiting ……..

Yes. As I remarked to Tom, waiting is such a part of this journey they even have designated spaces for it: waiting rooms.

Unfortunately there is no such space in your head. Bills come due, plans are made, the Holidays happen with or without you. 

It is such an exquisite balancing act. Talking down the fear, the angst, the worry. Staying positive in the face of a level of uncertainty that is, at times, almost incomprehensible. Making myself walk and go to the gym regardless of the fact that I already feel a physical diminishment. Rather, going explicitly because I do. 

Getting my warrior on even as I look around me with ever greater tenderness; I love this freaking world. Readying myself to battle an enemy who I am familiar with in a way that borders on contempt, and yet still at a loss as to how to go about it.

Trying to be at peace while simultaneously preparing to wage war. 

Threading the needle.


It was good while it lasted.

Stability, that is.

As any metastatic cancer patient understands only too well, what doesn’t kill you often just keeps trying.

I’ve been in this battle for so long now–more than eleven years–and most of that time has involved active combat with an ever advancing foe. But thanks to lorlatinib, my disease has been stable since June of 2014; my most sustained period of response yet. As a bonus, I’ve felt so damn good it’s been easy to imagine myself cancer free.

However, my scans have always told a slightly different story, with remaining nodules and opacities scattered here and there.

Lungs and Airways: The patient is status post left lower lobectomy for lung
cancer. There is a left lower lobe solid nodule on image 41 series 201 measuring
5 mm unchanged dating back to 5/14/2015. There is also subpleural patchy opacity in the left lower lobe image 63 series 201 that remains stable compared to 5/14/2015. There are small centrilobular groundglass nodules in the left lower lobe image 51 series 201 also stable compared to 5/14/2015 the largest of which measures 9 mm. There is a stable 2 mm right upper lobe nodule image 32 series 201. There is a stable subpleural groundglass nodule in the right upper lobe image 48 series 201 measuring 5 mm. A second groundglass right upper lobe nodule measuring 5 mm but is essentially unchanged from 12/10/2015 and 4/14/2016. A 4 mm solid nodule along the right minor fissure is stable. There are no new nodulesPleura: There is a small left basilar postoperative pleural effusion that remains essentially stable.

The words unchanged and stable are absolutely key here.

However, on my scan report today it was noted that one nodule had in fact changed size: There is a 5mm nodule on image 52 that appears to have grown since 5/14/2015 when it measured 3 mm but is unchanged compared to 3/6/2016.

Obviously it had escaped the notice of previous radiologists. However, upon reading today’s report, my oncologist Dr. Shaw reviewed the scans and agreed that this particular nodule had in fact enlarged and likely represented progression.

Nothing to panic about but a potent reminder that shit is still real.

Dr. Shaw is already talking game plan. We will scan again in three months. If the nodule continues to grow, we might biopsy in an effort to determine what the mechanism of resistance is. If it can be identified, I might be a candidate for a combination therapy of ALK inhibitors. As this is a solitary nodule and in my right lung this time, surgery is a possibility. So is radiation.

Stability may have been rattled but I’ve still got options.

And honestly, that’s the most important thing.

A few steps closer

We were in Mattapoisett this weekend for a dedication ceremony at the local historical society.  My mother-in-law, Polly Phipps, donated a nautical chart painted by the artist Clifford Ashley and the restored artwork was unveiled and celebrated for the jewel it is. This canvas mural had graced the ceiling of the ‘whaling room’ in the family home for almost a century, on a glassed in porch with a whale tooth for a doorstop and paneled walls where harpoons once hung (a number of which can now be found in the New Bedford Whaling Museum).

In addition to the cultural shebang and schmoozing with the family (my husband wryly noted that at least half the one hundred or so in attendance were related to him), we enjoyed time at the waterfront, lobster rolls, fried clams, a Chippi from Mirasol’s and a leisurely stroll through Ikea with Jem and Pete (sans David; he’s allergic to Ikea).

We needed to scurry back to Amherst on Sunday evening as David had to fly to Albuquerque on Monday morning and I had my weekly appointment at the Benson Henry Institute in Boston.

So that’s the garden variety news for the moment, but I’ve got a few things to report on the cancer front.

Sadly, Dr. David Servan-Schreiber, author of Anticancer, has passed away after surviving brain cancer for almost 19 years. One of his contributions to the literature on cancer was the facile way in which he broke down the science supporting his theories, making the information comprehensible and user friendly. I found inspiration in  both his holistic approach to disease, as well as his prolonged survival. Nineteen years was amazing; I would have wished him more.

And now two tidbits more curious than anything. First, researchers at the University of Oxford in England have announced that tall women are at a greater risk for cancer. In fact, for every four inches over a base height of five foot one, the risk increased 16%. Blimey. I thought adolescence and shopping at Shelley’s Tall Girl Shoppe were enough of a disadvantage. Of course, if you read the article carefully, smoking related cancers are not included (I’m not clear if that addresses those of us with lung cancer who didn’t smoke). Another study is mentioned which indicates that long legs are associated with an increased lifespan. So, there you go–it all balances out, and life really is fair.

The curiouser:  A molecular and cell biologist at UC Berkeley, David Duesberg, posits that cancer is actually an example of speciation, and can in fact be compared to a parasite.  It is an interesting if rather creepy concept but I feel there are more than a few holes in it. I also have a personal quarrel with this quote from oncologist Dr. Mark Vincent, another proponent of the view that cancer is an evolved species:

“I think Duesberg is correct by criticizing mutation theory, which sustains a billion-dollar drug industry focused on blocking these mutations,” said Vincent, a medical oncologist. “Yet very, very few cancers have been cured by targeted drug therapy, and even if a drug helps a patient survive six or nine more months, cancer cells often find a way around it.”

Excuse me? Six  or nine months? Ce n’est pas vrai! Leave the (billion?) dollar drug industry alone! Some of our very lives depend on said industry…

Which brings me to my final bit of news. On Monday Alice (Dr. Shaw) called to tell me that she’d already placed my name in queue for the Novartis LDK 378 and that two slots had opened up. If I were not to fill a slot, it was possible that I might wait several months for another chance.

I mulled it over for twenty-four hours. Physically my decline has been slow, but these things have a tendency to pick up speed and lately I am aware of building momentum.

When I emailed my affirmative  to Alice, she responded immediately in support of my decision.

That night I felt an anxiety lift that I hadn’t even known I’d been feeling. My sense of relief lasted until the following morning, when I really began to think about the implications of my situation. I felt a little bit afraid, and not so much about enrolling in a another phase I clinical trial, but about what would happen if I didn’t.

I’ve visited my mortality enough times now that you might think we’d become a tad familiar.

But no. I prefer to remain strangers as long as possible.

In a few weeks, I will be traveling down an unfamiliar path once again.  I’m hoping it leads to another miracle.