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.

Losing our first love

Two of my favorite photos of Evalynn

Two of my favorite photos of Evalynn

Early Monday morning—early enough that it couldn’t be good news, I received a phone call from our stepfather Jim. My mother Evalynn had passed away unexpectedly.

Mom had been in poor health for a long, long time. Two cancers, chronic back  pain, and advanced macular degeneration that left her almost blind. She’d gained a lot of weight, had limited mobility, and was in the early stages of dementia. Jim, who is eighty one but has the mental faculties and constitution of one years younger, provided all of her care.

Given her poor health, we all knew Mom’s time was limited and yet I often joked that she would outlive me. Truth is, I thought she might.

Mom was tougher than nails, one of her pet expressions. Meaner than spit sometimes too, if you didn’t see things her way. I was her first born; she liked to say I was the one she made all her mistakes on. John and Bink might argue that she saved a few for them.

However, there was no mistaking the fact that she loved us all dearly. Our conversations usually ended with “Do you know how much I love you?” or “Do you know how proud I am of you?” And we did—those things we never questioned.

She was, undoubtedly, our first love. It was her face and voice we memorized; her arms that held us. One of my earliest memories is the smell of the sun on her skin.

The three of us are putting together her memorial service and my sister emailed a list of fond memories to my brother and me. I think it nicely captures Evalynn, although I couldn’t help but add a few comments of my own (in italics):

Driving a motorhome and a massive boat as well

Backing up a hitched trailer flawlessly

Teaching us to paddle a canoe (stealth like, like Native Americans)

Always being the first to spot wildlife

Hitting a pitched ball with a bat (far, far, far)

Saying, and meaning it, that we’d never be able to run as fast as she could

Painting, Drawing, Sculpting (making just about anything with her hands)

Designing and decorating homes

Riding Motorcycles, Shooting a pistol

Dancing to any style of music (fabulous dancer)

Singing (even harmonizing)

Swimming a mile (diving beautifully; used to be a lifeguard)

Playing a musical instrument (the saxophone)

Mastering multiple sports (tennis! swimming! baseball!)

Fundraising for organizations she believed in (charitable work)

Baking coffee cakes

Reading in the bathtub

Charming her way out of speeding tickets

Charming most people, for that matter (quite the practiced flirt)

And laughing so hard she’d fall down

Beautifully said Binky. I’d also add that Mom was absolutely devoted to two out of her three husbands (sorry Dad!), adored and doted on her parents Effie and Roy, and never stopped looking up to her older sister Claudine. She played an important role in the early lives of Jemesii and August and my brother John’s daughter Shannon, as we were both single parents at one time. Our mother Evalynn was smart, beautiful, talented, capable and one of the strongest and bravest people I’ve ever known.

I miss her terribly already.

It’s getting a little too quiet around here…

And a bit minimal, per content (for those of us who need a laugh, check out this rather dated yet still freshly hilarious take on minimalism).

About that skin biopsy–it turned out to be a basal cell cancer. Dr Shaw called me herself with the news, as we’d all been on pins and needles per the result. Had it been a melanoma, I’d have been disqualified from the trial and likely all future trials for lung cancer. That would suck. So—we were thrilled that it was just a basal cell. I will have a Mohs Surgery to surgically remove the lesion from my shin on July 21st. And, from this point forward, be a lot more careful about sunscreen.

What other important events have come and gone since I last posted?

Justin and me. Two styling dudes.

Justin and me. Two styling dudes.

Well, Mother’s Day. Mine was splendid—I spent the day before in Cambridge with Jemesii and her boyfriend Justin. We went to the Coolidge Theatre to see Only Lover’s Left Alive (a bit vapid for vampires, but delicious none-the-less) and then had dinner out. An altogether lovely Saturday punctuated by a goose crossing the busy byway—I had to play traffic cop from my car seat with an impatient driver of a luxury car (brand unmentioned) who couldn’t understand why we’d all stopped and evidently wished to hurry on to wherever they were going. To strike a goose with one’s car on Mother’s Day eve and leave a gaggle of goslings orphaned….in very poor taste.

Peter Duff text-checking

Peter Duff text-checking

The day itself: Peter had emailed me a week prior to ask if I’d like to spend Mother’s Day with him (!) and I drove to Exeter where we indulged ourselves with a–surprise, never asked how much it would be–pricey brunch at the hotel down the road. It was almost as tasty as it was expensive. We then took a stroll around town and over to the river where Peter practices crew. There is a small pond there and we saw perhaps two dozen turtles basking in the sun. Splendid!

My day was made complete by a phone call from my eldest son, August, who was catching his breath after a long shift waiting tables on what tends to be the busiest breakfast of the year. He always cleans up (rakes in the tips!), helped no doubt by his MOM tattoo that he got after I asked that he stop getting tattoos.

The next major event on my plate was what was supposed to be the final mediation for my/our divorce. Fortunately, nothing was signed because upon reflection (which started as soon as I walked out the door, dazed as I was), it didn’t go very well—at least for me.

Fortunately I have some good and wise friends and family members who took it upon themselves to advise me. Further legal counsel has been sought and the process is ongoing.

Moving right along, I had the lead-in dose for PF-06463922 on Tuesday, May  20th. I was in the third cohort in the dose escalation or first phase of this trial.

First dose down the hatch!

First dose down the hatch!

Sadie was there for the whole bloody-long day, which made it all so much more fun. She insisted that the dosing be delayed for several minutes so that it could happen right at 11:11, when I became the ninth human in the world to take PF-06463922—having been preceded by several hours by a participant in Queensland, Australia and Barcelona, Spain. What a shame that we all could not have skyped along as we dosed, although given the timezones, I would have had to have gotten up earlier!

That giddy after taste!

That giddy after taste!

Anyway, this was a day I had long anticipated. And as it is already the second day of June, much has transpired since that first dose. Those of you unacquainted with clinical trials would probably like to hear a bit more about the particulars and I shall go into greater detail in a subsequent post. In the meantime I figured an update was more than necessary. To summarize: the skin biopsy was a basal cell—good news! I had my lead-in dose of PF-06463922 and regular dosing has begun. Fingers, toes, arms and legs crossed!

RIP Ezra

still in the wrapper:  the self portrait of Ezra which I purchased

still in the wrapper: the self portrait of Ezra which I purchased

Damn. I knew it was coming but still hoped it would not. Ezra Caldwell has passed, leaving his wife Hilary and dog Putney Sue. Today’s post on Teaching Cancer to Cry captures a bit of this amazing wunderkind’s essence.

My heart is heavy—condolences to his family. And many, many friends. Rest in Peace pal.