Tag Archives: living with stage IV lung cancer

A pair of celebrations

As the feast that was a prelude to a major land grab (how’s that for gratitude) Thanksgiving is likely no longer politically correct. But whereas Columbus Day is just a lie (you can’t discover a place that is already inhabited), Thanksgiving Day still has some major merit. I would argue that any holiday with thankfulness as the centerpiece is worth saving. Add in what to many of us is the ultimate in comfort food and a good dose of family and it becomes pretty much the perfect way to spend the fourth Thursday in November.

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My father Ollie and baby Linnea

Some of my bias is strictly personal; I was born on Thanksgiving and seven birthdays hence have coincided with turkey day; tomorrow will be the eighth. Perhaps only someone who believed they’d never have the chance to grow old is so eager to share their age; I will be turning fifty six and am both damn happy and proud of it.

In the morning Peter and I will head to Longmeadow MA for Thanksgiving with the Lee family. Melinda Lee is preparing the traditional turkey and a Korean repast. As we give thanks I shall think of all the ways in which I have been so blessed. My three wonderful children and all of my extended family. Dear friends like Melinda, who I have been close to since we met in the third grade. The wealth of other friendships–ranging from my neighbors in the lofts to my lung cancer community (many of whom I know only online but increasingly those I get to meet in person as well). My wonderful oncologist Dr. Shaw and the rest of the medical team which is working so hard to give people like me a chance against cancer. And of course, the simple (and yet astounding) fact that I am having yet another birthday.

Happy Day.

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.

The yellow brick road starts here…

ups and downs

ups and downs

I don’t know what’s up with me and WordPress but I can’t seem to set up a gallery of photos and I’m too tired to fight about it. So, I’ll just figure out another way around this problem. Multiple posts! With, of course, the added benefit of making me look really productive in a publishing sense.

Truth is, there is much I’d like to share but little time in which to do it. My father Ollie used to say ‘three moves equals one fire’. There are all sorts of ways to interpret that apt observation (not originally his own). I think he may have been referring simply to the damage moving inflicts upon one’s belongings—that which is lost, broken, nicked and dinged.

I prefer to think of it in a more spiritual sense, and this time I’m definitely burning  down the house.

Of course, once the smoke has cleared and the ashes cooled, I’ll be sifting through the wreckage for what is salvageable. And then I will begin to build anew.

I’ve signed a one year lease on a work/live loft in an artist’s community in Lowell, Massachusetts. I will move in on December 1 and having a known destination has provided me with a solid sense of direction. I can now see a light at the end of the tunnel and (thanks Melinda) I’m fairly certain it isn’t a train.

The photo at the top is of some very colorful stairs leading to an amazing warren of artist’s studios located in the old mill adjacent to my future residence. Studios such as this one:

creativity abounds

creativity abounds

“Dorothy, I don’t think we’re in Kansas anymore’.