Tag Archives: ALK + lung cancer

Not the usual suspect

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The view out my window

Since moving to Lowell I have been taken for an undercover cop (two occasions), a prostitute and now, perhaps, a suspect. Maybe I missed my calling and should have been an actor.

About those cases of mistaken identity. I spend a lot of time traipsing around, my chief form of local transportation and exercise as well. I walk alone–well, I did, prior to Kumo coming into my life. And I am a woman–a woman walking alone in my neighborhood is less common.

The first time I was mistaken for an undercover cop, I was moving fast but also stopping occasionally to take pictures with my cell phone–all for art. However, that’s likely not how it appeared to the group assembled on a front porch nearby. As I passed, one young man stood up and aggressively greeted me; ‘Hello Officer.’ I kept walking but was so caught off guard that I turned to him and said ‘Who do you think I am?’ At which point one of his companions, a woman, yelled back ‘You know you are!’

I was both confused and somewhat shaken–obviously being mistaken for a cop was not something that commanded either affection or respect. When I got home I googled ‘what does an undercover cop look like’ and was surprised to see that I fit the description perfectly. Tall, fit, hair cut short. Wearing jeans, t-shirt, athletic shoes. Yep, that was me.

The second time it was just a bunch of kids smoking weed and I think I simply glanced a little too long in their general direction.

And as for the prostitute–I was coming home from Boston one night on the train and got in well after dark. I wore a summer dress as I walked home from the station–alone. I was waiting for the light to change on Lord Overpass and an older guy in a car slowed way down, leaned out his window and said something that made it clear he thought I was soliciting. Well now.

But yesterday took the cake. Two days ago a woman was murdered several blocks from where I live and her suspected killer, who had previously served time for slitting another woman’s throat, has not been apprehended. A couple of helicopters had been hovering overhead for thirty-six hours, presumably part of the search. I took Kumo out for his afternoon walk and as we headed downtown, almost two dozen squad cars, marked and unmarked, went whizzing by–sirens wailing. I thought perhaps the manhunt was coming to a conclusion.

As we circled back to our neighborhood, I saw that there were now five helicopters. A block from home I took out my phone to video this crazy scene and had the distinct feeling that I was being watched. I looked up and one of the helicopters was hovering directly above me, where it stayed for some time. What the hell, I thought.

Finally it moved on and when I got home I opened an email from one of my neighbors with a description of the suspect. Male, with my coloring, neck tattoos, 5’10” tall and wearing jeans, a blue zippered hoody, and black and white tennis shoes. Wrong sex, same height, but damned if I wasn’t wearing exactly the same clothing.

I have to imagine that up there in those police helicopters, they have some sort of way of estimating height but probably also a facial recognition system, which would have quickly let me off the hook. However, sometimes it’s all just a little too close for comfort.

Each of these instances is also an interesting commentary on the assumptions we make about each other based strictly on appearances–how extraordinarily off base those assumptions can be. In my case, I am who I am. Someone who is both less healthy than she looks and more healthy than her diagnosis would suggest. Strong enough to be out and about and even mistaken for those in wildly different walks of life. So much more than just a lung cancer patient 🙂

The downstream effect of two miracles of science

My friend Dr. Tom Marsilje wears a number of hats–devoted parent, dedicated scientist, cancer patient and absolutely amazing advocate/activist.

Tom holds a special place in my heart and personal history but sometimes I have to stop and remind him; we both suffer from chemo brain, a subject he recently covered in his column for the The Philadelphia Inquirer.

He was in town briefly last week so we met for lunch and a photo op in front of Miracle of Science in Cambridge. I mean, how could we not.

Linnea and Tom: two miracles of science

Linnea and Tom: two miracles of science

After snapping our selfie we headed down Mass Ave to Flour, one of my favorite little cafes. Lunch banter was about any number of things including Tom’s relatively new role as a writer, and he noted that it makes him feel good to be really making a difference. I just looked at him incredulously before exclaiming “Dude!”

At this point I should remind you that Tom codeveloped LDK-378, the second ALK inhibitor I was on trial for. Also known as ceritinib and now marketed as Zykadia.

I then used my finger to draw an imaginary line on the table. “This” I said, “is my lifeline. And this is where I started taking ceritinib. No ceritinib and my lifeline stops right there.” And then, for further emphasis: “I am alive because of you and don’t think I ever forget that, even for a moment.”

By this point I was getting a little weepy. I went on to say that if Tom were a war hero rather than a scientist who developed a lifesaving drug for a pharmaceutical company, than his role would not be so seemingly anonymous and that he would be celebrated. But that the lack of accolades in no way diminished what he had already accomplished, which was to extend the lives of so very many ALK positive cancer patients. Including yours truly. And that I was grateful to the moon and back.

Such a tight connection between the individuals who come up with these drugs and those of us who take them. A lot of cause and effect going on there and to think that Tom and I would have the opportunity to also develop a human connection is just way, way cool. This guy had my back long before he ever met me (but must of known of my existence as an ALK+ individual). Gotta say I’ve got his back now but sometimes that just feels like hanging onto contrails as he’s jetting around with astounding energy and putting his fine intellect and experience to work as an advocate/activist for patients with advanced cancers. I feel both honored and blessed (and damn fortunate) to have him in my life.

Which leads me to this closing thought: maybe we should nave a national hug a medical researcher day. Followed by a bunch of bang up fundraising.

xo

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.

Downs and ups

I’m going to begin with another blanket apology. Not only have I been a poor communicator when it comes to blogging, I’ve also not been very consistent about returning personal emails, texts and phone messages. Somehow I lost my date book (in a snow drift somewhere, I betcha) and chances are excellent that if I’ve not done so already, I will miss some appointments.

This galls me because I don’t like being a no-show. In a world rife with promises and proposals, showing up is the only real currency, and I’m afraid I’ve fallen behind in my accounts.

There. Now I’ve at least acknowledged my shortcomings and offered an apology (perhaps preemptively in the case of upcoming appointments).

On the home front, I’ve been back in my apartment for a week and a half now. Servpro did a wonderful job and once again my landlords are to be commended for their quick attention to the mold situation. My eyes are no longer red each morning and my rash has disappeared as well. The only thing that has lingered is my cough, and that, unfortunately, is due to the progression of my cancer.

Yes, when progress is anything but. I saw Alice last week to review my latest scans. Compared to the previous CT scan (six weeks earlier) my cancer is picking up its pace. The largest area of tumor in my upper left lobe increased in size  from 4.0 cm x 1.9 cm to 4.2 cm x 2.5 cm. Noted on the radiology report (and quite obvious when viewing the earlier scan side by the side with the most recent one) is increased prominence of the ground glass opacity. And of course there are numerous little nodules in my right upper lobe as well.

The plan is to start back on Xalkori (crizotinib) asap. First, however, my insurance company has to approve the prescription. To that end I’ve received an automated phone call making certain I was me (social security number? mother’s maiden name?) but no other word and certainly no drug showing up in my mailbox. In the meantime, I’m continuing to enjoy grapefruit, which will soon be verboten.

How am I feeling? Overwhelmed. Sad and occasionally very frustrated. Tired and weaker; both of which I attribute to the progression of my cancer. Sore—I’ve screwed up my back something wicked. I was carrying my easel across the parking lot and slipped on some black ice and fell down hard. Unfortunately I think it was the last straw for my back. So, now I’m sporting a brace, sucking down advil and just hoping that time (and, finally, some respect!) will heal.

Of course, in addition to the trials and tribulations there is the wonder and not some small sense of pride at this fresh chapter. I’ve made fantastic new friends and gone to parties, potlucks and art openings galore. In a further sign of my commitment to the future (rsvp-ing, if you will), I have rented some additional studio space at the mill next door. It is where I shall paint but also set up shop—soon I hope to be offering for sale not only my photos and paintings, but a slew of vintage clothing.

Yes, in those months when I was getting chemo I was busy. Shopping. Hanging out at thrift stores and buying up a rather impressive array of clothes, shoes, hats, scarves, bags, ties and jewelry. In April the doors will open to The House of Redemption: Second Chance Clothing.

So you see, as I said to Alice, I’ve got plans. Big plans. And although cancer may mess with them a little, it’ll just be a temporary setback. All this stuff I’m hoping to do is a form of positive visualization; my rich fantasy life put to therapeutic use. And I am certain it can be realized. To wit: after my appointment with Alice last week I placed a phone call to a woman who was selling some inexpensive teak storage units on Craig’s List. I liked the sound of her voice and as I drove to her house I fantasized that she would be really great, we’d become fast friends, and she would invite me for dinner.

Well, when she opened her front door I was enveloped by the smell of curry. We began to chat about this and that. I agreed to purchase the shelving and went out to my car to get it ready for loading. When I came back inside, this very nice woman said that she had just spoken to her husband on the phone and if I waited twenty minutes, he would be able to assist me. And then she asked me if I would like to stay for dinner.

I laughed and told her that I was almost embarrassed as I had in fact imagined this particular scenario. I suppose some people might have been alarmed at this point, but as it turned out, we were two peas in a pod. Her husband came home, we (well, mostly he) loaded my purchases, and then the three of us sat down for a delicious meal. It was a magical experience and, I am certain, quite out of the ordinary for a Craig’s List transaction.

Moral of the story—go ahead and hope. You never know where your imagination may lead you.