Category Archives: Changes

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.

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.

Some self reflection and personal transparency

Self portrait in the ladie's room at Western Avenue Studios

Self portrait in the ladie’s room at Western Avenue Studios

I am in the midst of another break from packing; making the rounds of my gracious friend’s homes (thank you, thank you, thank you all). This has been a time to visit but also to decompress—and I’ve done just that, taking two naps in one day.

Despite my upbeat and can do attitude (at least I think that’s the tone I’m setting), I will acknowledge that this may well be the most difficult task I’ve undertaken yet. Disassembling a marriage is complicated no matter the circumstances; getting divorced while also battling cancer is crazy hard.

I am, on so many levels, stepping out into the complete unknown now. It has been years since I have been gainfully employed and financially, I am a persona non grata. Had a good friend not offered to cosign, I would not have qualified for my lease. Losing my independence was never meant to be part of marriage and yet somehow I let that happen.

I’d be lying if I didn’t acknowledge how anxious this all makes me, but I keep moving forward in the faith that better times are ahead. I am thankful for not only the support of friends and family but also the timing: were Peter not boarding, the separation of households would be so much more difficult. And as it turns out, I am glad I didn’t qualify for the PD-1 clinical trial and that by default, extended my break from treatment. Otherwise, I don’t believe I’d be able to manage, either physically or emotionally.

As it is, I am rather proud of what I have accomplished. It took some frenzied research (and a bit of luck) but my future home (and of course, Peter’s) really is promising. I just about nailed the amount of rent I felt I could afford and by relocating south will remain a reasonable distance from Peter’s school and yet move significantly closer to Boston and Mass General Hospital. The lofts have onsite laundry facilities, are close to a commuter rail, parking is free, heat and air conditioning included and I won’t have to worry about shoveling snow.

As a plus, Lowell has a thriving cultural scene (did you know Jack Kerouac was born in Lowell?) and I am moving into not just an apartment, but a community. The day I signed the lease, my neighbor across the hall invited Sadie and I (along for the ride) into her loft. I think making new friends is going to be a cinch.

And there is some entrepreneurial potential as well, as open studios happen once a month. The wall outside the apartment is mine to use as gallery space and–I’ve been hatching this plan for a year now–I will also have the opportunity to sell vintage clothing (which I’ve been busy amassing) alongside my art at open studios. Woohoo!

securedownload-1So that’s a bit more of the fun stuff. Of course, in prelude to moving in, I’ve been packing up. I have singlehandedly transported carload after carload of boxes to a storage unit. And I’ve lined up a small band of merry movers (again, a preemptive thank you!) and will rent a truck to haul the furniture and boxes come December 1. And then I’ll move the vintage stuff into the storage unit.

I’ve also been working on the health insurance piece; worst and best case scenario. It is of utmost importance to me that I keep the same providers.

So, that’s a bit of an update. Tomorrow I move from one household to another…stages in a journey.

A space similar to the one I'll be moving into....

A space similar to the one I’ll be moving into….

Brief respite

One hundred feet east

One hundred feet east

I’ve had a two day break from packing. Truth is, I’d hoped to be done by now but the task is rather herculean in scope. When it comes to acquisitiveness, my sins are both copious and varied; books being one of the greatest. The good news is that all three kids love to read (how could they not?). However, I can’t tell you how many trips I’ve made to the liquor store to fetch appropriately sized boxes–big enough for larger volumes but not so big that I can’t lift them once filled. And of course, I’ve also purchased the occasional bottle of wine; liquid courage as well as a courtesy in exchange for all the free cardboard.

David wanted a few days at the house before I resume my bundling, and so I’ve been taking a break with my friends Sadie and Pete. They are living in a seasonal rental (read winter, and so quite reasonable!) on Plum Island; a spit of land backed by tidal marsh and fronted by ocean. It’s a quirky but spectacular location, seemingly remote and yet minutes from Newburyport. Yesterday I grabbed lunch at a wonderful little shop called Joppa Fine Foods (named for the nearby Joppa Flats); this morning I walked down the road for black coffee to go from Mad Martha’s. I’m currently sitting by the fire–this place is pretty luxe–but in a few minutes, I’ll be hitting the road back to reality.

And in the meantime….

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).

Moving on

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.).