Monthly Archives: October 2013

And in the meantime….

Posted on October 26, 2013 | 6 comments
On Pete's shoulders

On Pete’s shoulders

Life does of course go on. Two weekends ago we enjoyed spending time with Pete during parent’s weekend at Phillip’s Exeter Academy. Attending Peter’s classes was super—what a great bunch of instructors and an equally impressive group of students. Eating in the cafeteria was kind of groovy (although I had a misadventure to be shared in another post). And…meeting all his friends and some of their parents as well was absolutely fabulous.

Pete's in the back of the boat

Pete’s in the back of the boat

We also got to attend a crew practice and to see Peter (still a novice, but loving it) in action. It was a beautiful day in what has been the tenderest October I can recall—just glorious.

Pete then came home for two days, much to Buddy’s delight. And of course, I was able to sneak in some cuddle time; moments which are all the more precious for their infrequency.

Was it the right thing to do—sending Peter to boarding school? Absolutely. It is going to be a real life changer for him, and I couldn’t be happier (and yes, I take a fair amount of personal pride in having initiated and orchestrated this opportunity). Thank goodness David has been totally on board with it as well; financially it is a major commitment and not something that could have been realized without his support.

Of course, from a strictly selfish perspective I am admittedly lonely without the daily presence of our youngest child—particularly now. However, I’m also relieved that Peter is removed from the current fray; as difficult as the coming weeks/months shall be, it is made easier to know that Peter is busy with his own private world.

And I have to believe he is extraordinarily well taken care of:  last night I received a phone call from someone in the infirmary. Pete had gone there with migraine-like symptoms, and the PA on duty called to see what sort of work-up Peter has had previously. This is a relatively new problem, and so they will now refer him to a doctor.

While I had the individual on the phone I did make one request: “Please tell Peter to call his Mother. Tonight.” Worked like a charm—fifteen minutes later I was on the phone with Pete (who was already feeling better).

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Posted in Cancer and our children, Changes

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Moving on

Posted on October 22, 2013 | 43 comments
A sign

A sign

This is a tough, tough time. Not just for me of course, but for David and for anyone who is close to either one of us. It is also a particularly confusing time, and our children and some of my own siblings are struggling too.

I am the one who initiated this separation and I think that might make me immediately less sympathetic. However, I can only say (without going the whole dirty laundry route, which I have no intention of doing) that it is complicated. If I felt I could stay in this marriage, I would. But I can’t.

Oddly, (or maybe not) my cancer has played quite a role here. Were I healthy, I believe we might have separated some time ago. I am grateful to David for his persistence and patience. However, as risky as it may be to jump out of this leaky boat, I’m tired of bailing and would rather swim for a spell.

So, I’ve been busily packing and planning and looking for an acceptable place to live. Fingers crossed that maybe I have found one. The night before I went to check it out, I dreamt about Martha Stewart (I’d been invited to her home for appetizers but asked to leave before dinner–she’s always rude to me in my dreams). Anyway, while touring this complex, I came up the stairs to see Martha’s beaming face. Say what you will, but I think it’s a sign.

Of course I have my moments of chest constricting panic. I mean, this wouldn’t be an easy thing to undertake under any circumstances and mine are hardly ideal. However, there’s only one way to go now and that is forward.

Last night I had a dream that struck me as particularly poignant. I was swimming through the aisles of what appeared to be a submerged store. I attempted to come up for air, only to discover that the surface of the water was sealed over with a sort of plastic. I recognized I was in a bit of a tight spot but thought to myself, ‘I can do this’. Continuing to hold my breath, I swam to the end of an adjacent aisle where I was able to gasp for air through a gap in the plastic. There was nothing frightening about the dream; it just felt strong and somehow apropos.

Another yes from the universe:  yesterday I felt a little like I was listening to the soundtrack of my life; thought I’d share two. The first selection is one of my favorite songs ever, sung by Mama Cass. The second one is a little out of character (mine), but damned if Will.i.am didn’t steal my line (and his pal the Bieb even repeats it three times!). Enjoy, and don’t forget to click out of those annoying advertisements (I know, we wouldn’t be here on the internet without them. Sigh.).

43 Comments

Posted in Changes, Coping

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As it turns out, not quite enough (of me)

Posted on October 14, 2013 | 40 comments

The word from the lab looking for the PD-1 protein in my biopsy is that there weren’t enough cells (cancerous or otherwise) for a thorough analysis. If it is determined that enough tissue was ‘banked’ after the biopsy, a sample will be resubmitted. Dr. Shaw is not particularly optimistic.

So, the plan for the moment is to watch and wait. We will rescan in November and as long as I don’t become significantly more symptomatic, my situation will be reassessed at that time. In lieu of a PD-1 antibody, I could potentially return to one of the ALK inhibitors which I previously benefitted from:  LDK378 or Crizotinib—although as the LDK is still in trial, I’m not sure how that would work. Chemo remains an option but given the slew of side effects, I would say it is the least attractive choice. What I’m really hoping is that I can hold out until the next ALK inhibitor comes to trial (rumored to be end of this year or beginning of next)—the timing could be just right for me.

In the meantime, my plate is plenty full. I’m looking for a place to live as well as a means of support. I realize that statement implies much and answers little; I’ve got a lot to process and when the time seems right, I will discuss this new chapter in my life.

40 Comments

Posted in ALK mutations, Biopsy, Clinical Trials, Relationships

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And more pieces

Posted on October 5, 2013 | 17 comments
Look what I found

Look what I found

I am once again a peer reviewer for the CDMRP (Congressionally Directed Medical Research Programs); specifically those pertaining to lung cancer. And yes, this part of the government is apparently still up and running even as ClinicalTrials.gov limps along with partial staff and a disclaimer; (which I swear got a little more upbeat as the week went on) they will update information as best they can. It’s an unnerving time for those of us who rely on clinical trials for survival, and according to this article in WIRED (thanks Janet!), the immediate impact extends beyond enrollment, as research itself is put on hold and sometimes (un)necessarily scuttled.

It is a daunting task, this peer reviewer stuff, and if I ever say yes again, I hope someone who cares will slap me. I say the same thing when I am holding a bag of cheetos—if I reach in one more time, take it from me and slap me. Some time back, Peter slapped me after my first bite. ‘What the hell?’ I asked—I guess the day before I had made my characteristic statement and I suppose he felt it still stood.

Anyway, I feel as if I’m making a small but important contribution, and perhaps in the process I will also expand my own understanding of lung cancer (get smarter). However, the amount of research I need to do just to understand the basic concepts in some of these proposals makes my brain feel like pudding, as well as underscoring the fact that I majored in art, not science.

About that image at the top. I ran into it while doing some of my research—I think I was looking for pie charts with the break-down of genetic mutations in NSCLC. As I scrolled down the page, I started noticing images of my lungs. And a little picture of me….and my grapefruit too.

I don’t know if I can explain how I felt, but it made me kind of weepy. I mean, here I am researching lung cancer and part of what I find is little anonymous pieces of me. More underscoring; I really do have this damned disease—and my connection to the subject I am researching is intensely personal. But then again, not….with 220,000 new cases in the US annually, I’m hardly alone. One piece in a really big puzzle; a puzzle I hope we someday solve.

But not if I don’t get back to work…..

 

17 Comments

Posted in Advocacy

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