Tag Archives: NSCLC

Me and my hero

 

Linnea (me!) and Dr. Alice Shaw

Linnea (me!) and Dr. Alice Shaw

Just thought this was as good a time as any to post a recent photo of me with my personal goddess/oncologist Dr. Alice Shaw. She is a rock star and with Alice by my side I feel as safe as a person with stage IV lung cancer can possibly feel. Better than that, actually. I know my doctor will do everything within her power to achieve the best possible outcome in regard to my future. That when she says we are a team, she really means it.

Her role is to watch my cancer like a hawk and to stay abreast of any developing treatment options. She’s got that. My task is to work on being as strong as I am able–emotionally and physically–so as to better bear up under both changing health conditions and new treatment regimens. To hang onto optimism and to keep the faith. And, perhaps the most challenging of all, to continue to sit with uncertainty.

It takes commitment and an incredible amount of confidence; on the part of my doctor but also myself. Alone, I don’t believe I could manage. Together, we’re a formidable team. Cancer better watch its back.

Savannah!

I have a niece who is enrolled at Savannah College of Art and Design and her family credits me with alerting them to the existence of SCAD in the first place–happy to be of service when I can. My niece, Zola, is wrapping up her third year at SCAD and just came home from Lacoste, France and a semester abroad. Fun for me as I too took a semester abroad in Lacoste back in 1979 when the program was affiliated with Sarah Lawrence.

Anyway, as an extravagant way of saying thanks for my tip off per SCAD, my sister Bink took me to Savannah for a long weekend of touring the city and hanging out with Zola.

It was a perfect trip all the way around. Bink got us an RBO in a beautiful Victorian adjacent to a park and within walking distance of everything. And walk we did. Savannah is laid out in the most unique grid fashion, with one block sized park after another. These little parks are filled with aged oaks dripping with Spanish moss and each has a monument in the center. And the parks themselves are ringed with charming homes and churches; Bink pointed out that Savannah wasn’t razed by fire during the Civil War and in fact was presented by General Sherman (impressed by its beauty) to President Lincoln as a Christmas Gift.

Of course we toured the grounds of SCAD as well and I can only say wow—art school has come a long way. Plush, luxurious, well equipped and an all around creative hive, it’s the sort of place that makes anyone want to go (back) to art school. And Zola is kicking butt in her major, advertising.

I was introduced to some fine southern delicacies along the way (we ate so well). Grits, fried corn, collard greens (which I liked so much I requested a second serving for dessert) and the most beautiful little macaroons. One unexpected highlight of the trip was a ride with an uber driver her told us about going on a cruise where they had a $10,000 prize for karaoke, and her disappointment that she’d not signed up. My sister asked her if she had a good voice and she said ‘pretty good’. We bantered a bit more and the uber driver said something about how she ought to sing to us. We thought she was kidding until she said ‘well I best get to it’, and broke into the most gorgeous rendition of Amazing Grace. This little tiny lady driving an uber while simultaneously belting out a hymn. It was magical. As was my entire trip. Thank you Bink, Zola and family! xo

Eleven beautiful and breathtaking years

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And counting. I’ve been so busy LIVING that I have neglected to note that we just zipped on past the eleven year anniversary of my diagnosis with lung cancer. That’s right–ELEVEN BEAUTIFUL AND BREATHTAKING YEARS that I didn’t think I was going to have.

Ever mindful of what a miracle waking up is, I continue to marvel at the fact that I AM ALIVE. Today, this day–and maybe tomorrow too. And you know what? It never gets old. The good, the bad and the ugly alike–it is a privilege to be here and something I shall never take for granted (and if you are reading this, neither should you).

Several days into year twelve (!), I vow to honor the memory of those who had to leave this party far too soon. Your departures hurt and anger–but death cannot tear apart the connections we made in life.

My personal goal going forward? To shift my focus from surviving to thriving. If you run the numbers, I’ve now known I had lung cancer for almost 1/5 of my lifetime–much of that lived on hold.

No longer. It’s full throttle from here on out as I plan to see and experience all that I can possibly cram into this life I call mine. To adventure!

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!

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JUST SAY IT!

 

Time for GRACE

Alright, I’ve been really damn quiet again. I’ll get to this later, but my current therapy has come with a lot of cognitive side effects. Memory loss, a bit of accompanying confusion and frankly, a tough time talking (it crosses the blood brain barrier and has an effect on my speech center).

However, I still said yes when GRACE asked if I would share my story on video. Two and half minutes of Linnea live in honor of GRACE and Lung Cancer Awareness:

And more pieces

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…..

 

YES!

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.