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.

Loud uncle paired with a quiet whine

Yesterday was a humdinger. Two treatment-related mistakes in, I realized that not only am I over-overwhelmed, it’s time to do the big ask: Help!

Shortly after after posting my previous blog (and following much back and forth), Dr. Shaw and I decided that canceling my mediation was not a good idea. The prospect of getting three lawyers to readjust their schedules just felt too daunting. And, until we reach a settlement, I am still completely dependent upon David financially and that is not where I want to be.

Alice (Dr. Shaw) very kindly opined that medically it would be okay to wait a week. I emailed back that I would then delay wash-out and continue taking my Xalkori for one more week. This was her adorable response:

Yes. Twice per day! :)

Well, evidently I overdid it by one pill, and because of that the trial start date could be delayed (really?). That was mistake number one. The second screw-up was getting confused as to the time of a scheduled MRI and arriving fifty minutes late. They graciously squeezed me in but it easily could have meant another trip/potential delay.

So let me describe my little day from hell. I was up at 6:30 am with the intention of getting on the road by 7:30 for a 9:30 am dermatology appointment. A mere 24 hours earlier I had been looking at my left shin with my glasses on. I have very long legs and increasingly poor eyesight and if my glasses aren’t on, anything below the knees is blurry. Well, there’s a mole mid-shin that a dermatologist at MGH has been watching, and what I saw when I looked closely was concerning—particularly the numerous small black spots that now peppered the surface of this little ‘beauty spot’. I had a basal cell cancer removed at the age of thirty and my father Ollie had numerous basal and squamous cell cancers as well as melanoma. My chart must have me ID’d as high risk, because when I called for an appointment they marked it urgent and got me in yesterday.

Anyway, that’s the back story. I got on the road by 7:45 and realized I had missed Peter’s 7:20 wake-up call. Placed that–we’re getting this routine down, and as silly as it may seem, I love speaking to him briefly each day. And then I settled into what is always a horrific commute. What can take half an hour turned into and hour and a half. I got to dermatology just before my appointment. Fifty minutes and five magazines later I asked the receptionist if I’d be seen soon—as I had more appointments over at Yawkey starting at 11 am. Oh dear. Seems she forgot to let them know I was there…she was very apologetic and I was seen shortly thereafter but it was some additional stress I could have done without.

Anyway, one look at the mole and the dermatologist said ‘biopsy it’. His feeling was that it represented a basal cell, but given the pigmentation and appearance, melanoma could not be ruled out until the pathology report came back.

I had a punch biopsy performed and I will hear the result in seven to ten days. As the doctor said (a wee bit too glibly, I felt). ‘You don’t want to hear back from me.’ If a nurse calls, I will know it is reassuring news. If it’s the doctor, do you think hanging up would make it go away?

I had to practically run back to the Yawkey building (a challenge at this point) as an Echocardiogram was scheduled for 11 am. I was ten minutes late and breathless to boot, but the test proceeded anyway. Evidently I shall have these periodically during the upcoming trial, as there have been some (asymptomatic) reports of prolonged QT interval.

After that, it was labs and an EKG on Yawkey 7B. I spoke to the trial nurse and my scheduler, and ended up with just enough time for lunch before I had to begin fasting for my pre-trial abdominal CT scan. I enjoyed my rushed meal but for dessert I had a brain fart—thinking I had time to sit in the MGH cafe and browse on my laptop before heading over to Chelsea where the scans were scheduled. Oops. At 3:20 I realized my brain MRI was supposed to occur at 3:15. I placed an apologetic phone call and did my best to rush over—something that is impossible at that time of day. Forty five minutes later I arrived at Imaging in Chelsea and (because sometimes you do what you have to do), drank one of those hideous barium shakes. I did beg off the second one.

Well, it looked as if my MRI would need to be rescheduled, but bless their hearts, they squeezed me in. It was almost 7 pm when I left. Exhausted.

So here’s the ask. I’m an independent sort by nature and a good deal of my journey with cancer has been rather solitary. Sometimes that has sucked but mostly I have managed (got my own back sort of thing). However, I confess to harboring a small amount of envy for those cancer patients who have a lot of support. Medically I’ve got the best squad a girl could ask for but I’m thinking I could use a little…Team Linnea. Family/friends/folks who might be willing to go to appointments with me. I’ve got some long ones coming up as I start the trial and it is always easier with company.

As soon as it is finalized, I am going to publish my schedule. If you’d like to spend a day in the life of a patient in a phase I clinical trial, don’t be shy! All comers welcome!

And while you’re at it, please cross your fingers that the skin biopsy comes back benign (best) or basal cell (better than the alternative). I don’t need any more wrenches thrown into this affair. My son August sent me this e-card, which nicely sums up my current sentiment:

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Update

I had my CT scan and appointment with Dr. Shaw yesterday. As anticipated, the news is not particularly good. The radiology report reads: ‘A mixed attenuation lesion in the left lower lung zone now measures 8.4 cm, previously 6.9 cm. There are also increased small ground glass nodules adjacent to the lesion. The central solid portion of the lesion now measures 6.2 cm, previously 4.4 cm. A mixed attenuation lesion in the anterior right upper lobe now measures 1.4 cm, previously 1.4 cm. Another right upper lobe lesion now measures 7 mm, previously 4 mm. Inferior right upper lobe mixed attenuation nodule measures 1.5 cm, previously 1.2 cm—Interval increase in size of dominant mixed attenuation lesion in the left lower lung zone and some of the right upper lobe nodules consistent with worsening lung cancer.

Still, were I not symptomatic, Dr. Shaw would consider leaving me on Xalkori for a little longer. However, upon examination she noted how very wheezy I am and we both agreed that it is time to try something else.

Two weeks ago I realized (with no small degree of horror) that I had gotten mixed up on my medication and had been taking my Xalkori only once a day. At most I made this mistake for two or possibly three weeks but I was absolutely mortified when I reported my discovery to Alice (Dr. Shaw). Hopefully it had no major impact upon my response, as my symptoms had never abated. However, it is a potent reminder that I have been terribly distracted. As Alice remarked, I have a lot on my plate.

I am to start the new trial on the 13th of May. We have a scheduled mediation for our impending divorce on the 16th and my first impulse was to push back the trial date. Last night I did a lot of soul searching and realized that I need to get my priorities straight (the mediation can wait if necessary).

In addition to my own worries, Pete is experiencing some challenges (kid can’t get up in the morning) and I’ve been back and forth to Exeter a number of times. Desperate times call for desperate measures, and I am setting my alarm for 7:20 every morning so that I can place a rise and shine call to my sleepy son. Yesterday I had to call repeatedly; today he picked up on the fourth ring.

I confess to feeling somewhat overwhelmed. However, my internal dialogue moves quickly from wallow to wonder; I am still here.

Live, love, life.

 

Word of the day: Optimism

I just made an appearance in the Massachusetts General Hospital Newsletter: Targeted Cancer Therapies Make MGH Patient Optimistic — MGH Giving.

Serendipity I guess, as it looks as if I’m about to enter my third clinical trial for a targeted therapy. On the 28th of April I will have a CT scan and then meet with Dr. Shaw. The expectation is that the scans will show progression; (but it sure would be nice if that expectation was inaccurate) and the plan is that I will sign the paper work to enter the PF-06463922 trial. If it’s a go, washout begins the following day; I will likely start the trial two weeks later.

In the meantime, I’m getting excited. Teeny bit nervous, but overwhelmingly (yes, it’s true) optimistic. Here’s hoping the third times a charm…

A Bear behind

I’ve been gone for awhile now and I feel a stranger in my own blog. I apologize for such an extended silence—I know that in this community the lack of an update is worrying. So let me start by saying I’m okay: not exactly jump up and down great, but hanging in there.

By way of explanation; I am happy, happy, happy. Mentally, I have never been better. However, physically the situation is a little more complicated as it would appear I’m not responding to treatment. Although I’ve not had a CT scan since starting back on Xalkori, my cough, nocturnal bronchorrhea production and a troubling shortness of breath suggest that my cancer is spreading. In a few weeks, I shall likely start my third clinical trial for an inhibitor that targets both ALK and ROS-1 mutations:  PF-06463922.

I am mindful that it is a blessing to continue to have options. I am also entirely cognizant of the fact that if I don’t respond to the trial drug, those options will be rather limited. It is a sobering realization and yet I continue to focus primarily on the positive aspects of my ongoing survival.

For instance, yesterday was not only Easter, it was Peter’s seventeenth birthday. I was diagnosed with lung cancer in 2005 just before Peter turned eight; two weeks ago I quietly marked nine years of surviving post-diagnosis. Happy Birthday Peter and I am thrilled to be able to celebrate with you!

Life really is remarkable—in all its ups and downs. My own has been topsy turvy for some months now and at some point I felt the need to pull back from blogging and simply concentrate on the day to day business of restructuring existence; more on that later.

First, a little personal history: it was just over fifteen months ago when I resumed chemotherapy. Simultaneously, my marriage was hitting the skids. I felt sick, scared, lonely, trapped and was well on my way to becoming someone I find intolerable—an unhappy person.

Without a doubt, I had hit my personal low point and for the first time, I considered stopping all treatment and simply saying enough. Briefly, that. Instead I took a step back and assessed the situation. It wasn’t going to be easy, but I began to formulate a plan to not only survive, but to prevail.

pre·vail
priˈvāl
verb
1.
prove more powerful than opposing forces; be victorious.
“it is hard for logic to prevail over emotion”

My first priority was Peter’s immediate future, and to that end much hard work went into the private school process. As you know, he was accepted to Phillips Exeter Academy where I am happy to report he is thriving. I am particularly proud of the fact that he qualified for the novice crew team this spring—it turns out rowing is something that Peter really enjoys and has the potential to be quite good at.

My second goal was rather short term, and that was to get through chemo. I did, and after six months of infusions, enjoyed almost nine treatment-free months. Even though my cancer progressed, my body got stronger, and I really needed that physical strength when it came time to move.

And what a move it was. Deciding to separate and ultimately get divorced after more than twenty one years of marriage was huge; particularly under the circumstances. Obviously, it is not a decision that was made lightly.

My dear friend Melinda has remained my guardian angel throughout this process, offering counsel as well as emotional and financial support at various junctures. We’ve been pals (and partners in crime) for almost five decades now and I simply can’t imagine life without her.

I’ve also had some help from a surprising source. At that low, low point many months ago, lying in bed one night after chemo, I felt the need to be both protected and held. I searched my imagination for the appropriate companion and found that it was a bear that I was looking for. I could not only see this bear, I could feel its presence beside me. And I asked this large animal to hold me close; to keep me safe. In exchange for this protection, I told the bear that when I died, it could eat me.

Now this may sound really bizarre—a little crazy even. But, to me it was a perfectly fair exchange. I truly believe that we are all part of one living system, and that when we take our final breath, our energy is dispersed. To be eaten by another creature is a logical repurposing of energy—we do it ourselves every time we dine on something that was once living (plant or animal). I realize some of you may be horrified—and once again I offer my apology. However, know that for me the current tradition of embalming a body is anathema–and cremation is not much better. If I cannot be eaten, I would rather decay and become part of the soil.

Some weeks ago, there was a social quiz on Facebook–’What is your spirit animal?‘ I took the silly thing out of curiosity. It was already obvious to me what my spirit animal was and I was certain the quiz would get it wrong.

Well, surprise, surprise, my spirit animal is The Bear. Ha! The questions really were seemingly random, but somehow, someway, it turned out right.

Bear really does have my back.