Wish upon a star

The night before last I wakened in the wee, wee hours and couldn’t fall back to sleep. I lay there thinking about all the things I wanted to do and how long it might take to accomplish them all. I thought to myself “I need another thirty years”. As I was thinking this I turned my head to look out the tall windows adjacent to my bed and at that moment a shooting star streaked across the night sky.

Boom—as my kids might say. There and then I decided it was an affirmation. In the past decade I have sometimes measured my life span in months. At my most optimistic I plan perhaps two years out; in the absence of an effective therapy and at the rate my cancer seems to grow, that might be a reasonable projection.

Denial has never been my style. And yet…I am also a bit of a dreamer and I believe in the power of a positive attitude. To wit—when first diagnosed with lung cancer I understood only too well the odds that I faced with an overall five year survival statistic of 16%. When you are stage IV, as I am, that statistic drops to a dismal 4%. I have helped myself deal with this reality by picturing a bell curve—in my mind’s eye I am waaaaay out on the end.

In reality I have achieved outlier status; living well beyond my ‘expiration date’. However, due to the pernicious nature of my disease I am unable to relax. As I once said to a friend whose cancer had taken a turn for the worse, sometimes the thing that’s trying to kill you just keeps on trying.

Two nights ago a shooting star gave me the courage (abandon?) to allow myself to believe that I could live another thirty years. I mean, what’s the harm? Suddenly my future stretched before me like a Texas highway—almost endless.

It’s a view that I could look at, well…forever.

Has it really been that long?

I can’t believe my last post was on March 7—I knew it had been awhile since I’d written but yikes! I would like to apologize to those of you who may have worried in the absence of an update. The good news is, it’s all good news!

Way back in April I quietly marked the ten year anniversary of my diagnosis with NSCLC. That’s right; a decade. I am absolutely understating when I say that I never, ever thought I’d live this long. Heck, my oldest child is thirty now and my youngest turned eighteen in April. I’m fifty-five—old enough to qualify for a senior discount at the Salvation Army Thrift Store (a privilege I don’t let go to waste).

Speaking of kids, my oldest son August came for a wonderful-if-too-brief visit in mid May and I had the pleasure of all three of my children’s company for a blissful 24 hours. We threw a party in my loft and celebrated any number of momentous occasions.

Peter, Jemesii, Linnea, August.

Peter, Jemesii, Linnea, August.

I’d also like to do a little bragging about my other two children: Jemesii manages a store on Beacon Hill called December Thieves—they just received Best of Boston and Boston Best Awards. And Peter is interning at the Koch Institute this summer—doing research on pancreatic cancer! Proud, proud mama.

May was also the month that my excruciatingly painful, protracted and expensive divorce proceedings culminated; everything is signed, sealed and submitted and will be final on September 1st. I shall write a bit more about this particular part of my journey at a later date. In the meantime, I am just so happy that the most difficult part is over with and that I can turn my focus to other things.

Fortunately, I am feeling really, really well (more than a year of stability on the PF-06463922 clinical trial) and my physical energy is generally exceeded only by my creative energy. I’ve got so many projects in the works, and one of the biggest is The House of Redemption: my combination studio/second chance clothing venue. I’ve been working behind the scenes for more than a year now, but the doors shall (actually! really! finally!) open on July 31st. Inside will be a splendid selection of both vintage and fine used clothing and accessories—as well as an artist (me) painting away in the back of the shop. More details and photos to follow!

Home of brave new art and second chance clothing.

Home of brave new art and second chance clothing.

In some ways I feel as if I am experiencing an unprecedented personal renaissance. The art school atmosphere of the lofts is a big part of why—this community is creative 24 hours a day. Much interaction is delightfully spontaneous—conversations, meals, sitting around an outdoor chiminea. There are also movies, parties, museum visits and gallery openings. And it’s not just about art—If we are in need of something, a request goes out on the community email (a ride, a pet watched, an extra pair of arms). If we have something to share with our neighbors, a similar email goes out. Frequently I come home to flowers (Rufiya!), some food treat left outside my door or an invitation to dinner. Sometimes I feel as if I have found my Oz (as in, Land of).

I am also doing my part to maintain good health by staying active; walking remains one of my essential pastimes. I am always shooting photos on these jaunts (my camera being my iPhone!) and shall soon be printing and displaying a large number of these images on the wall outside my loft.

Pipe dreams

Pipe dreams

In addition to exercise, I pay careful attention to how much I sleep. An interesting side effect of this therapy is that at higher doses it seems to induce a state similar to sleep deprivation, which might explain some of my cognitive challenges early on. At this lower dose I have few troubling side effects (neuropathy and some arthritis—still to be determined if the latter is drug related). However, I do require a lot of sleep—a minimum of ten hours nightly.

I am also increasingly mindful of what I eat. Sugar and white bread are for special occasions only, meat is kept to a minimum and vegetables rule. I have a plot in a community garden and a raised bed here at the lofts as well, so the salads I eat each day are grow your own.

Writing remains my greatest challenge; sadly it no longer comes easily. However, I am well aware that there is only one way to get over this hurdle—put one word in front of another.

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!

IMG_0025

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:

But I know more details would be helpful…

My beautiful daughter on a particularly fateful day.

My beautiful daughter on a particularly fateful day.

Is there some fresh way of saying ‘It’s been a challenging time?”

No, probably not. And besides, challenging is a euphemism; a gentled version of what I wish to convey.

It’s been a difficult year, and the year before that as well. Adjusting to life alone, the continued progression of my lung cancer, a short stint on Xalkori, and then at long last admittance to the PF-06463922 trial. But it has not been without wonder.

About that trial…

I went in with low expectations, as my second secondary acquired mutation (G1202R) is highly resistant to all ALK inhibitors, although results in the lab indicated that my cancer could still respond at higher doses. I entered in the third cohort, at a dose of 75 mg. I was delighted when my cough began to abate almost immediately. But then four days after regular dosing started, I began to experience marked shortness of breath and the sensation that something was caught in my windpipe. I was coughing a lot and some of it was streaked with blood. The following morning there was a small clot of blood in my sputum, but my shortness of breath had abated. However, upon awakening the next day I coughed up yet another small clot. Hemoptysis is one of those things you just can’t ignore, so I sent a text message to Dr. Shaw, who was away at ASCO.

While waiting for a response, I received the phone call from my stepfather Jim telling me that my mother had passed away.

And that phone call was followed by one from a member of the clinical trial team, telling me that I’d been scheduled for an urgent CT scan, in order to rule out a blood clot or pulmonary embolism.

Fortunately my daughter Jemesii had the day off and pretty much insisted on meeting me at the hospital. I was going on adrenalin at this point and don’t know what I would have done without her. In prep I blew two IV’s for contrast (these veins are getting tired) and ended up having a vasovagal response (never happens to me) so I earned some time out in the recliner with some intravenous saline. And then after the scan wrapped up Jemesii and I headed over to the Termeer Center for the results.

And this is when things got really weird. The attending physician said I had neither an embolism or a clot. “How about cancer?” I asked. “Is that all gone?”

“Well, no…but…” she said, and then read from the report:

Lungs and Airways: Status post left lower lobectomy. A mixed
attenuation lesion in the lower portion of the remaining left upper
lung is significantly smaller than on the prior exam now measuring 2
cm x 1 cm x 3.2 cm significantly smaller than on the prior exam where
it measured approximately 8 x 7 cm in diameter. A small right upper
lobe mixed attenuation lesion (series 4, image 330) measures 6 x 7 mm
minimally decreased from prior measurement of 7 x 9 mm. 4 mm region
in the left upper lobe seen on series 4, image 339 is not
significantly changed. A nodule in the right upper lobe seen on
current examination (series 4, image 314) and on prior examination
on 66, image 155 now measures 4 mm in diameter down from 6 mm. And
unchanged region of atelectasis is present in the left upper lung
near the left hemidiaphragm. Additional nodules. Similar in size to
prior exam. No new nodules are seen. There is no evidence of new
pneumonia or pulmonary edema.

I had begun regular dosing six days prior and an 8 x 7 cm chunk of tumor had melted away to a mere shadow of itself. It was just unbelievable.

Stunned, Jemesii and I decided that a good meal and an even better glass of wine was in order. We raised a toast in honor of my mom. And then we raised another to the future.

I’m okay

Just thought I better get that out there.

xo

 

Keeping to myself

You know, it’s been a hell of a year. Enormous change, too much loss and an awful lot of heavy lifting—both emotionally and physically. I am stronger for it all but weary as well. Make that exhausted.

Mom’s death knocked me out of orbit more than I could have imagined—as I feel I may have lost the person who cared for me the most.

I say that in a quantitative sense: Evalynn loved her children heaps. However, from a qualitative perspective, our mother did not always love us well. Strong willed, occasionally self centered and histrionic, her affections were like a wild fire, and sometimes we got burned. Once upon a time I tried to reason with her: ‘Mom, just because you will do anything for me, it doesn’t mean you can do anything to me.’

Grieving has been complicated. I miss the hell out of her but am also tasting that bittersweet broth of relief and confusion that happens when a very passionate but emotionally destructive relationship falls out of one’s life.

Make that two relationships. David and I were a couple for over twenty-five years. There are many parallels between the bond I had with my mother and that which I shared with my husband. Duration, intensity, depth of love, degree of difficulty–but also importance.  My mother and my husband have in many ways shaped the arc of my life.

Perhaps because I am the one who moved out of our home, there are those who felt my decision to leave David was selfish. I may go into more detail at a later date but I can assure you that getting divorced was never my first choice. And under the circumstances it was and is hardly easy. Again, a conversation for another day.

I realize most of you come to this blog to read about lung cancer, and that some of you have been on pins and needles as to what is going on with my lung cancer. I am feeling well—unexpectedly well—and I am also acutely embarrassed and even ashamed that I have not shared that update with you sooner. However, my illness has not been foremost in my mind these days.

There is an op ed piece in the New York Times this morning, The Problem With Collective Grief. In reference to the response of the Dutch public to tragedy, it struck a personal cord with me:

“The sad thing about mourning is that it really is quite unshareable, that it involves an extremely individual emotion. People have the right not to show their emotions and not to share them, even when it comes to soccer and calamity.”

And then this:

“…that we are often indifferent, that we are busy enough as it is trying to provide emotional succor for those closest to us, and often don’t even succeed in doing that, seems to me not so much a sign of our inhumanity, but of our humanity. Were we to actually allow the world’s suffering to sink in, we would quickly become psychiatric cases…”

I share these observations with you because they help explain my own emotional state. I’ve been grieving one very important relationship only to suddenly have another come to an end. And because life doesn’t hold still, I’ve attempted to maintain some semblance of order and sanity, all while starting a clinical trial, working on a fairly contentious divorce, attending to my children’s needs, worrying about my financial future and contending with the side effects of treatment. I’ve hit most of the high notes, but it’s been a bit hit and miss when it comes to communication. At least one friend has jumped ship and others may follow suit. I’m saddened by this inattention on my part—but it’s been all I could do to take care of my own.

Last week Peter got his driver’s license and the two of us have been busy painting walls and moving vintage clothing into my new studio space. Yesterday I had the Moh’s surgery for the basal cell on my shin. There will be a memorial for Mom in Fort Collins on Saturday and Peter and I will be driving to Colorado. We were to leave early this morning but I just couldn’t get it together in time.

It’s a good thing sometimes; pushing pause. An extra day gave me that space I needed to finally get this blog written.

We will hit the road first thing tomorrow, with Peter doing his fair share of driving. Should be a fine mother/son adventure.