Category Archives: Coping

It’s a jungle out here

Pretend for a moment that one hundred people are standing in front of you. The only thing you know about them is that they all have lung cancer. One at a time, each person approaches you and then shares some intimate detail about their lives. Sometimes you sense that you have much in common with the speaker, sometimes little. In each case you get an overwhelming sense of their humanity.

You are thinking about how you would like to get to know some of them better when I drop a bombshell: only eighteen of these people will be alive in five years.

It shocks you but I assure you I have not told you this merely for dramatic effect; statistically speaking, this is an actual scenario. The five year overall survival statistics for all stages of lung cancer cancer are only 18%. At stage IV, that number drops to 2%, or just two individuals out of one hundred.

Statistics only tell part of the story because numbers are not nearly as compelling as living, breathing human beings.

Now imagine what it’s like to be one of those hundred; that you too have been diagnosed with lung cancer; that you too will fall somewhere along this statistical curve.

It is a terrifying feeling, and isolating as well–as many of us feel that friends and family can’t really comprehend the sometimes debilitating anxiety that is part and parcel of our diagnosis.

We often combat that feeling of isolation by connecting with others people living with lung cancer–through support groups, social media, summits, or advocacy work. However, this network can become a double edged sword, as we are now invested in each other’s outcomes. When one of us passes away, a collective shiver runs through the entire community. We grieve, we rage, but we also rightly wonder if we might be next.

Over time, it becomes a trauma–this mix of fear and sadness. And for those whose cancer is considered incurable–and in the case of lung cancer, that would be most of us–there is no post to our traumatic stress. It is ongoing, or OTSD.

We focus on staying alive even as we worry–constantly–about dying. And, because we often don’t look as if we are ill, it is very, very difficult for those around us to fathom what it’s like to live on borrowed time.

Can you plan a vacation six months from now? Is it worth spending the money to get your dental work done? Will you be there when your kids graduate from high school?

As a society there is a great deal of emphasis on planning for the future. When you are living with cancer, it often feels as if the future has nothing to do with you.

I’ve now been living with the idea of dying for over twelve years–more than 20% of my time on earth. How do I do it? One day, one moment, one person at a time.

 

xo dedicated to all we’ve loved and lost–far too young, far too many

*thinking of you, Kimberly.

 

 

Losing it

Earlier this week I made my morning cup of coffee immediately upon rising, just as I always do. But then I couldn’t find it. Anywhere. And I live in a one room loft. I also left my eyeglasses at a local restaurant over the weekend and as their staff’s search turned up nothing, I’m going to have to buy a new pair. Yesterday I misplaced the bra I was planning on wearing. I later found it in a bowl of oranges. Don’t ask, as I couldn’t answer, because I simply do not know.

Sometimes it’s funny, other times it’s frustrating as hell.

All these years of clinical trials and continuous treatment are catching up to me. Add in menopause and advancing age as well as the fact that I live alone, in itself a rather extraordinary thing for a person dealing with a terminal illness.

Yet there is an upside. I am now convinced that children have incredibly short attention spans by design (so to speak). That if they were able to mull, ponder and plan the way adults do, they might well waste the precious time allotted to childhood. There is a magnificent advantage to a wandering perspective–so incredibly well suited to experiencing the world with eyes wide open and without bias.

With my limited ability to recall, I am rather like a child. Everything feels fresh and seemingly brand new. My focus is short, but also incredibly intense. At times it as if I am tripping, my senses tickled by any stimulus at all. As an artist, this is a boon. Emotionally, it can also be of enormous benefit, as I am no longer prone to extensive rumination; once upon a time, losing my (beautiful and expensive) blue eyeglasses would have undone me, at least for a time. I regret their loss, but in the same way a child mourns a broken toy–briefly.

It is only when I need to function as an adult; someone with responsibilities and hard deadlines, that this lack of linear concentration becomes a true liability. I would in fact consider it almost a disability, although one that is neither obvious nor fully understood by those around me. I believe that might be because my cognitive challenges don’t reflect diminished intellect but rather the increasing inability to retain, recollect and organize information.

I could use some help–some sort of cheery task master. Someone who would commit to a couple of hours each week to assist me with those chores I now find so daunting (paying bills, taxes, getting my vintage clothing business up and running, managing my finances).

I already devote well over a third of my income to health care and I think a personal assistant is likely a luxury above my means. However, I would like to propose that there should be some sort of federal agency (yes, I’m dreaming) akin to the U.S. Department of Veterans Affairs for clinical trial participants. That there be recognition (on the federal level) that in the war on cancer, clinical trial participants are serving on the front line. And that we, like veterans of other wars, deserve some sort of special consideration of both what has been given but also taken. Financially, emotionally, physically.

I’m committed to continuing to fight the good fight–and I do so gladly. With or without assistance. However, if anybody out there with mad organizational skills and a little spare time wants to come hang out, coffee’s included.

*if I can find it 🙂

Tested

Kumo can run like the wind. Before I knew his given name I was calling him Ghost but felt that Arrow might be a better choice.

I learned from the get go that giving chase is of no use–Kumo can run circles around me and does. He is also smart and wily and careful not to get close enough that his collar can be grabbed.

This dog absolutely will not come when called and is not tempted by a proffered treat. In other words, approach is totally on his own terms.

With Kumo’s history of roaming, I took no chances and had him microchipped during his recent surgery. But even with that precaution, there is no question that being off leash is something that can occur only in contained areas.

Kumo arises early, and our first walk is taken while I am yet a bit groggy.

This morning my thoughts were elsewhere when I had the unsettling realization that the leash in my hands was suddenly connected to nothing–evidently I had not attached it firmly to Kumo’s collar and it had come loose. Kumo was just ahead of me but at the same moment I realized he was free, so did he. And he was off like a shot, an arrow.

I didn’t know what to do and nor did he. The call of the wild and all those mourning doves were pulling him off and away. And yet, he did stop when he was a good distance away to look back. Suddenly he was running toward me again and for one brief second I thought he would return. Rather, he ran wildly to and fro, close to me, away again, exhilarated by his sudden freedom of choice. Because it really was up to him at this point.

As I sat on the pavement in the middle of the parking lot, my heart pounding, tears quietly rolled down my cheek. ‘This is it’ I thought, my dream of a little white dog over. And so I stood back up and walked slowly to the building. Maybe, just maybe he would follow. And if not, I would go get Appa, the great white Pyrenees who is Kumo’s first and best friend at Western Avenue, and try to lure my little wild thing back inside that way.

I shut the glass door behind me and Kumo came closer. The minute I opened it he bolted. When I closed the door a second time he cautiously approached. I opened it just a tiny way this time and to my great surprise and overwhelming relief, he came inside.

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At the moment he is laying beside me on the couch, pressed up against my arm as I type. We’ve had our breakfast now and he’s licked my bowl clean for me.

I think we’re good.

When you can’t remember shit

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Perhaps the best greeting card ever.

First, a blanket apology to anyone whose birthday I have forgotten this year. Same goes for all those unanswered emails, texts, phone calls, missed appointments and other no-shows.

Once upon a time I and my ability to recollect were reliable. As a child, I possessed an eidetic memory and when I wished to retrieve an event it was almost as if I were watching a movie of the past in my brain. According to literature the ability to remember things in an almost photographic sense disappears in adulthood, but I am a highly visual person and always utilized a sort of Hansel and Gretel bread crumb approach; when trying to remember something I would visually retrace footsteps in my mind until I came back to the thing I was searching for.

That is, until I started my current therapy, lorlatinib. A small molecule designed specifically to cross the blood brain barrier, lorlatinib is able to deliver drug to tumors within the central nervous system. This is great news for individuals with brain mets but it also means that there may be accordant cognitive side effects. I started early in the trial during dose escalation and at a previously higher dose than I am now taking, and those cognitive side effects were so pronounced that a few weeks into the trial I felt as if I could no longer process or reason. Fortunately lowering my dose improved that scenario but I still felt as if my memory had been completely wiped and that I had suffered something akin to a brain injury.

Because I was also in the midst of a nasty divorce it was hard to parse the stress from the effects of therapy, but suffice it to say that life was challenging.

Two years out I am not only still alive, I feel almost as smart as I used to be. However, my memory is still completely shot. Add advancing age into the mix, and I think it’s fair to assume that I will continue to do things like purchase airline tickets to the wrong city (last summer) or for the wrong day (upcoming trip). It’s a little unnerving and yet you know I like to look on the bright side (cue Life of Brian). Historically I was a mental ruminator, and often made myself miserable by reviewing unpleasant situations over and over. Well guess what! Not being able to remember shit sometimes comes in handy, and I no longer dwell on much of anything.

Although my memory challenges make life less predictable, I am learning a lot about flexibility, personal forgiveness, and a whole lot of scrappy. In the case of the flight to the wrong city, I rented a car (first time ever, alone) and drove the additional 400 miles to my intended destination.

So even if I miss the boat entirely (wink wink–see above), I know I’ll still get there. I just might not remember how.

Life is good good good; make that great.

What can I say? Twenty months of stability (my last scans were remarkably stable) and it’s starting to feel like a new normal. Dangerous perhaps, this recently acquired ability to relax. Come June I am moving into a different loft and I will be signing a THREE YEAR LEASE. Just words, I know, but heady ones for a girl who has spent the last eleven years imagining the future in three month increments, the time between scans!

I have been in survival mode for a long, long time but I’m starting to switch things up a bit—moving from survive to thrive. I’ve been hitting the art hard—most days I start painting around two or three in the afternoon and go until the light fades. And I’ve been pulling together The House of Redemption, my vintage clothing venture. The best part is neither of these things feels like work anymore—rather like purposeful play.

Self improvement is a central theme for me as of late. Apple is phasing out their one to one program but my subscription is good for another eight months and I’m using the heck out of it. I’ve been limping along on my computer for far too long now—really underutilizing so many of its functions. And then there are my sloppy personal habits, like the 33,000 (really) unopened emails—those have got to go.

Happy picture for a happy post: my cute and colorful college bound kid.

Happy picture for a happy post: my cute and colorful college bound kid.

I’m trying to get a grip on my finances, now that I’ve got some personal assets again post divorce. Last week I opened up a money market account and met with a free financial advisor at the bank—there is so much I don’t know but I am eager to learn. Peter’s got all his college applications in and I’ve spent the last two days working on his College Board financial aid applications and in the process have made a lot of headway on my tax return for 2015—something I have not done alone since I was married almost twenty five years ago.

Of course, I continue to exercise (walking, and soon yoga as well) and I am hoping that this is the year that I really become an inspired cook. I’m reading and writing a lot in in my free time (!) and learning how to play mahjong, japanese style, thanks to Koichiro and Machiko. Supposedly it helps with cognition so I am having fun but also exercising my brain.

The only thing missing is travel plans. I want to visit friends and family but also spend some time getting to know those people and parts of our planet that I am currently unacquainted with. Iceland, here I come!

 

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!

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JUST SAY IT!