Category Archives: Attitude

Going where I don’t really want to go

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There is very little that makes me anxious any longer. However, I am parking phobic. I will drive anywhere, in any sort of weather, but having to search for a parking space causes me undue anxiety. And so I generally avoid situations where parking is an unknown. Which of course means I miss out on certain things.

However….these days I am all about embracing challenges. Yesterday I was meeting a friend in Cambridge for lunch. I also needed to stop by my son’s dorm at MIT as I’d finally located my missing electric toothbrush charger (it had gone to college along with my son).

When I left my loft in the morning I was feeling incredibly scattered and rushed and was doing my best not to get stressed out by the fact that I was leaving late and also that I would need to find a parking space when I got there.

Traffic was a breeze (thank you traffic god) and as I approached my destination I decided that it was high time I faced this ridiculous apprehension of mine head on (of all the things to be afraid of!). And I would do this by approaching the task calmly, assuredly, and with the end goal in mind. No big deal.

Well I immediately passed by two empty metered parking spaces (the ones I was looking for) but they were on the wrong side of the street. It was too narrow to negotiate a u-turn in my SUV so I decided I’d keep driving until I was able to turn around. As I waited at the light one of the spots was taken. I got a little sweaty as my anxiety started to rise but I talked myself down. Two lights and one (probably illegal) u-turn later, I was on my back to what I hoped was still a vacant parking space.

To my relief, it remained unoccupied. To my exasperation it was, thanks to the construction vehicle parked in the space to the front, not quite a full space. And said construction workers were sitting on the steps of the neighboring building having their lunch. Oh goody, an audience!

This is probably a fine time to mention that the only thing I didn’t pass with flying colors in Driver’s Ed was parallel parking. And this, of course, was a parallel space. However, I put myself in the ‘I cannot fail’ zone and after positioning my vehicle just so, I cranked that wheel and eased on in before the watchful gaze of all those construction workers. One more tiny adjustment and I was parked, mere inches from the curb with not much more distance between my bumpers and those of the adjacent vehicles.

Damn, that felt good. Confronting something I was afraid of.

Later in the day I had an errand to run in Lowell. With my confidence running high, I settled on yet another tight parallel parking situation. This time an elderly gentleman walking by stopped to watch my progress. This space, tighter yet, required several wheel cranks and adjustments before I was in. When I glanced up, the gentleman was giving me the thumbs up.

When I got out of my car I looked over my shoulder. He had walked several yards but he turned around and gave me a second thumbs up. “That wasn’t easy, you know” I said. He smiled widely, waved and nodded his head in agreement.

I smiled back, outwardly and inwardly. One more bugaboo, banished.

It’s all Fun

Two years ago I was going through a tough patch, as I had recently separated from my husband and my health and financial situation were both a bit grim.

I spent a fair amount of time on the phone talking to my mother Evalynn and I’m awfully glad I did, as she passed away unexpectedly that June. During what would be one of our last conversations, my mother asked me what I did for fun. ‘Everything’ I said. ‘Everything I do is for fun’.

And I really meant it.

Approximately 2975 days have passed since I was told that I had three to five months left to live. Each and every one of these days has been a glorious bonus; an unexpected gift; an amazing treasure.

Recently I heard about someone who had ‘made the best’ of a similar situation where they’d received an extended reprieve from death. This individual was traveling the globe. Sounds like fun.

However, bucket lists are not an option for me–out of reach financially but also not what I really desire so much as to go on with life.

And so I have. Living each day as if it weren’t my last. Yet doing so with utmost awareness of how unexpected but also special each and every moment is.

I choose to love life unconditionally and so without judgement. It’s all good. And 99% of it–also fun. Simple stuff like waking up in the morning. Having that first cup of coffee. And then the second. Texting my kids. Hanging out with friends. Going to a thrift store. Smiling at a baby. Striking up a conversation with a stranger. Taking long walks.

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But also paying bills, sitting in a waiting room, getting blood drawn. Doing laundry, languishing in traffic, buying groceries. Watering the garden, scrubbing the tub, unloading the dishwasher. All fun fun fun. Because each and every one of these tasks is a privilege I never thought I’d have.

Sometimes it is incredibly poignant and I am reminded of certain moments from childhood: playing outside as dusk approached but knowing that a grownup would soon call us all indoors. The slight anxiety and anticipation would lend a tingling excitement and new intensity to our games. Perhaps we ran a little faster; shouted with a little more bravado, became a bit bolder than before.

That which is fading is often held all the more dear. And I am hanging onto dear life with all the joy I can muster.

xo

 

Please don’t call me a survivor

Survivor: a person who survives, especially a person remaining alive after an event in which others have died.

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Today is National Cancer Survivor’s Day. I’m happy for all that find reason to celebrate but this particular person with cancer won’t be in attendance.

Being (still) alive is both swell and notable, but I am going to be a party pooper due to some ongoing issues with the terminology associated with today’s celebration.

The distinction between a survivor and a non-survivor not only disregards, it is also somewhat disrespectful to everyone who really wanted to stay at this party but could not; the many who cancer has forcibly taken. Labeling someone a survivor seems to imply that remaining alive is merit based when in fact, so much of who gets to stay and who has to go is attributed simply to chance.

Secondly, I don’t care for the been there/done that feel of a noun such as survivor. My relationship to cancer is not and likely never will be past tense. It may look easy, but this staying alive stuff is hard, hard work. It’s a full time job and I am laboring all the time; there are no days off when you have terminal cancer. Therefore, I prefer an active word–a verb. I am surviving cancer.

Words have power. I feel that survivor is meant both to honor (sort of the anti-victim) and to comfort–to help those who are labeled survivors to feel both safe and victorious. I appreciate the intention but honestly, I have no use for either recognition or a false sense of security while fighting my disease. What I do require is knowledge, courage, strength, hope, love and increased funding for cancer research. These are tangible tools that I can actually utilize as I go about the real work of staying alive.

Down the rabbit hole once again

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I was off drug for seven days–a subsequent post will detail why. On day seven my brother John called and at the end of our long conversation he said ‘your voice is back to normal–you’re talking fast again’. So I was. One prominent side effect of PF-06463922 for me is that I speak more slowly. It’s as if I just can’t quite drag the words out and for some reason (maybe all that effort) my voice comes out louder too. In addition, I often sound a bit incredulous, as sentences sort of trail up at the end. It’s something that not everyone notices–my neighbors in the lofts have only known the slow speaking version of Linnea. However it is quite obvious to me, my old friends and family.

That was really sort of fun, talking fast. Better still, that evening I realized that I felt different as well. Kind of like the old me–sharper, calmer, more organized in my thinking. Clearly the drug had washed out of my system.

The next morning I started dosing again. Within forty eight hours my speech slowed and that sense of internal calm evaporated (emotional lability is a potential side effect of this drug, and was a big problem for me when I was on the higher dose).

Yesterday was one of those days that just keeps poking you with a sharp stick. This whole college application thing has been incredibly complicated and Peter let me know that some forms I was supposed to submit for his financial aid package were missing. This ramped up my anxiety as I am no longer able to retrace my steps, if that makes sense. I feel sort of like someone crossing a canyon on one of those suspended foot bridges, and as I run, the bridge falls away behind me. In other words, no easy way to go back.

My daughter Jemesii was having a bad day too, as a psych eval that she had waited a month for (and gotten up very early to go to before work) was cancelled upon arrival because the doctor had called in sick. She would have to wait yet another month for a new appointment. Insult to injury, the receptionist was rude and insensitive–someone who should not be working with a vulnerable population. This stressed me out some more.

I had an appointment at noon for a new general practitioner–someone who works specifically with oncology patients. I was super excited but didn’t know how to get to MGH West and just assumed Siri (on my iPhone) could help me find the way. Well, she couldn’t parse the difference between 40 2nd Ave. and 42 Ave, which apparently doesn’t exist. And Waltham just didn’t compute for her. I turned my car on to warm it up and noticed three lights were flashing but I decided to get on the road anyway. As I pulled out I placed a call to the doctor’s office for directions but the switchboard ended up putting me through to billing where I was on hold for almost ten minutes. That individual wasn’t able to help me but said they would connect me to someone who could–but all I got was ‘We are unable to answer the phone but you can leave a message at the tone’. Damn. I tried Siri one more time, with a little less specificity. This time she understood, I got my exit, and was almost on time.

After the appointment I looked through my vehicle’s manual to see what those flashing lights meant—next to the icon that looked like an engine it said ‘take to Toyota dealer immediately’. Well fuck.

So this morning I drop my car off at the mechanic. I had scans in Chelsea so the plan was to take the train to Boston, walk to MGH and catch a shuttle to Chelsea. As I walked the half mile to the train station in Lowell our property manager called and told me that I had mistakenly sent my alimony and child support checks rather than those for rent. Oh boy. After I boarded the train I reached for my wallet and it wasn’t there.

Sometimes a girl just has to say uncle.

So home I went. Made myself a cup of coffee to calm down/warm up again. Called Chelsea to cancel my scans and sent my scheduler an email. This is one of those moments where my own challenges feel, well, just a little too challenging. That’s code for ‘and then I feel sorry for myself’. However, it never takes me long to gain perspective. Life is hard for most, and almost impossibly difficult for some. This drug that muddles my brain is also keeping me alive. And I can’t argue with that.

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!

 

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.