Love story

Day 28: for my final post devoted to Lung Cancer Awareness in the month of November I am going to talk about my superhero: Dr. Alice Shaw.

Alice and I met under what then felt like sad circumstances. It was the spring of 2009 and I was several months into my snatched from the brink of death fairy tale; aka crizotinib. As far as I was concerned (and I still feel this way), my original oncologist Dr. Tom Lynch walked on water. However, I woke up one morning only to read in the Boston Globe that Tom was leaving MGH to become the head of Yale’s Smilow Cancer Center. I was devastated and sent him a quick message saying I felt like he’d broken up with me via email. In my head I was already thinking I’d have to move closer to New Haven as I viewed my continuing survival to be inextricably linked to Tom Lynch–as an oncologist he was always on the cutting edge, having tested me for an EMLK4-ALK translocation in June of 2008, long before most of the world had even heard of an ALK mutation.

Tom replied quickly and with assurance; he had hand-picked my next oncologist and he was certain I would adore her.

I was at MGH for a long trial day (PF-02341066) when Alice introduced herself to me. We chatted for more than an hour as I had soooo many questions regarding my cancer (she was the lead investigator for PF-1066 as she was for ceritinib, the next agent I would go on trial for). She listened carefully, compassionately and answered with honesty but also great detail. The treasure chest that was my own personal medical information had finally been opened and I was smitten.


Dr. Alice Shaw (thank you MGH The One Hundred)

So what makes Dr. Alice Shaw so special? I had some fun researching her online in order to write this post and it amused me when I’d run into something I’d written when googling Alice Shaw (I have been rather vocal in my adoration). She was honored as a caregiver at MGH’s The One Hundred celebration in 2012 and at that time I said this: “Alice is an uncommon blend of brilliance and compassion. My relationship with her has greatly advanced my understanding of lung cancer while validating my personal experience–when coping with a serious illness that validation is empowering.”

That’s sort of Alice in a nutshell. Harvard educated (B.A. biochemistry, MD, PHD) she is an associate professor of medicine at her alma mater in addition to being a clinical oncologist at Massachusetts General Hospital. She has been awarded numerous research grants and awards and on November 2nd was appointed as the inaugural incumbent of the Paula J. O’Keefe Endowed Chair in Thoracic Oncology. I was fortunate enough to be in the audience, as was Dr. Thomas Lynch, my original oncologist–he has returned to MGH in the position of Chairman and Chief Executive Officer of the Massachusetts General Physicians Organization. Dr. Jeff Engleman, no slouch himself in this crowd of crowds, gave the introductory speech and noted that Alice is simply the best at everything she does. But that she is also incredibly humble and down to earth and places the utmost importance on patient care–that she is fully invested in securing the best possible outcome for every single person she treats.

When Alice came to the podium that evening, she expressed her gratitude to all those who had supported her. Mentors, colleagues, fellows, research assistants, members of pharma, benefactors, family–including her Husband Stan and two lovely sons who were all in attendance. But she also thanked her patients.

Dr. Alice Shaw is a rising superstar in the field of thoracic cancers. I recently heard her husband Stan make the humorous comment that he knew her before she was famous. The beautiful thing is, the only way in which fame has changed Alice is she’s slightly less accessible due to demand. However, as I noted in my blog about my friend Christian, although he is no longer getting his care at MGH, she still calls to check up on him. Somehow, some way, she finds the time.

In 2012 I had this to say about my oncologist and I wouldn’t change a word today: “Alice is my super-hero. She is contributing to the future of cancer research and treatment. And she is doing her best to make sure I have a future as well.”

Love you Dr. Alice Shaw!


I am the lowest common denominator when it comes to instructions/rules/general compliance etc… This post is intended to be part of a blog chain this month (along with my blogs about Christian and Diane) but I failed to list the blogs prior to and following. I shall this time, however!

Yesterday: By Craig Blower about Dave Bjork found at

Tomorrow: By Dann Wonser about Genevieve Wonser found at


Let me tell you about my friend Christian: Day 26

Two blogs in less than twenty-four hours! Whoa! As part of Lung Cancer Awareness Month (brought to you by November) I am going to share a little about someone who is very special to me.

I met Christian Nataline five years ago—we were guests of our mutual oncologist Dr. Shaw at a function where she was being honored. I was struck by how young Chris looked and learned that he’d been diagnosed just after turning thirty-one. He’d been married less than a year (to his amazing wife Karen) and was the father of an eight month old. Like me, he was also a mutant—ALK+ and stage IV.

Christian and Karen Natalie

Christian and Karen Natalie

As it would turn out, Christian and I often had appointments in the cancer center at MGH on the same day and our relationship started to grow. As many of you know, there are certain things about this journey that can’t be understood by anyone other than a person who is walking the same path. Like me, Christian has had a wide variety of treatments (which is another way of saying the response/progression cycle). He started out with chemotherapy, moved to crizotinib and then zykadia and is now on alectinib. Along the way he’s had a good deal of spot-welding (radiation) too. And in the midst of all of this, Chris and Karen became parents to a second daughter.

Christian, Danielle and Christina

Christian, Danielle and Christina

As fellow warriors (apologies to those who dislike the military language, but the two of us really have been on the frontline together for quite a few years now) we have provided each other with encouragement, love and a ready ear. We’ve each talked the other off the wall a time or two as well–sometimes this shit gets all too real. He calls me mumma and I think of him like a son/true friend. I love this kid.

Yesterday I called him to ask him a couple of questions. First I wanted to know what kept him going. His children, Christina and Danielle–Chris is a stay at home dad now. And his wife, Karen, who has never for a moment doubted Chris (he’s had a crazy idea or two along the way) and has always believed in his ability to prevail. I opined that she is his rock and he laughed and said she (Karen) says the same thing about him–he is her rock, her home. She is also his best friend and he ‘loves her so much’. It’s a pretty powerful foundation, this little family of four.

Last year Christian relocated his family to Florida. I was sad and worried about his leaving Dr. Shaw’s care (she still checks in on him), but the warm climate and slower lifestyle seems to suit him. Karen works in a health food store now which is a good thing, because Christian pays a lot of attention to what he eats–I get a huge kick out of the photos he will put up on Facebook with the ingredients for a fresh smoothie. Prior to his diagnosis, Christian was a martial artist; practicing jiu jitsu. He can no longer compete, but he is instructing his eldest daughter in the art. There are good schools close by and family too, and Christian seems happier so I think he made the right choice.

Christian’s approach to care is somewhat unconventional as well. He takes a “let’s just do everything” viewpoint, embracing both western medicine and alternative treatments. He has utilized cannabis oil for tumor reduction and pain management. Psilocybin, peyote, and san pedro have all played a role for Chris spiritually. However, it is ayahuasca that has been the real game changer; the drug that Chris says ‘saved him’.

When I ask him to explain, this is what he said (ayahuasca is a powerful hallucinogen): “When you see your own death…it relieves you of the sense of fear and you realize that everyone is suffering, but in different ways. You work through losing your attachments to living including family…but you see the vast internal life in all of us. Our next step is to transition to energy and a never ending cycle. You see the bad, the love, but also that life is a gift. You understand that we’re all interconnected to each other and with the planet.”

I think for Chris his spiritual work with the hallucinogens has helped him to wrestle with the twin demons of fear and loss; he’s come a long way. I wondered what message he would like to share with others. First, if someone wants to pray for him that would be wonderful. However, he doesn’t want anyone to think for a minute that he’s not going to make it (I hear the defiance in his voice and I’ve got to say, I like it :) He also wants everyone out there to know that he loves you (and he means this). It is also important to him that people believe that what we are doing (walking this cancer path) is not in vain—that each of us is a guiding light for those to come. That what we are suffering/going through now will help our grandchildren to come.

It is a lovely sentiment on this Thanksgiving Day. I am thankful for my beautiful, powerful, ever evolving friend Christian.

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.


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.

Spotlight on an advocate: Day 13

*In November (the month dedicated to lung cancer awareness), bloggers are highlighting a different advocate everyday. My first post is about Diane Legg and it is on Day 13.

It was March of 2006. Dana Reeves had just died and I was reeling. As a young woman with lung cancer, I’d hitched my star to Dana’s, and her loss felt terribly personal. But then I happened to pick up a copy of the Newburyport Daily News. Inside was a story about a young mother of three with lung cancer; Diane Legg. I found her phone number online and called her that afternoon. We chatted a couple more times but our plans to have coffee somehow never materialized.

Diane Legg and Hildy Grossman: two super advocates!

Diane Legg and Hildy Grossman: two super advocates!

In 2008 my path and Diane’s crossed once again. I was attending Lung Cancer Alliance’s annual Shine a Light on Lung Cancer at the Prudential Center in Boston because my trial buddy Kevin Brumett was speaking—Kevin and I were early participants in the first clinical trial for an ALK inhibitor. Well, as a co-chairperson, Diane was there too and we finally got to meet. And the rest, as they say, is history.

I treasure Diane as a close friend but also as an inspiration; the first person I saw a little further down this path than myself.

Diane was only 42 when she was diagnosed with NSCLC. She’d strained a muscle while picking up her one year old and when the pain didn’t go away, she was scanned to rule out a pulmonary embolism. What they found instead was lung cancer.

The fact that Diane has lung cancer is not the reason she became a passionate advocate. Instead it was the death of a close family friend who had been diagnosed at the age of 43 just a few months prior to Diane. Devastated by how quickly her friend passed, Diane was galvanized into action: “I turned her loss into advocacy.”

Her first act of advocacy was to become co-chair of the Massachusetts chapter of the Lung Cancer Alliance. All those Shine A Light on Lung Cancer events? That was Diane’s brainchild. She also teamed with her husband Dave to form TeamLUNGStrong, part of the annual Pan-Mass Challenge. Monies that they raise are earmarked for lung cancer research at Dana Farber and Massachusetts General Hospital. Despite the fact that her cancer is now advanced Diane herself rides in the PMC (amazing, truly amazing).

I asked this mother of three and super advocate what motivates her. She responded very matter of factly that ‘you don’t have a choice, you just go on–everyday is a gift.’ And then I wondered what she would want if she could have anything in the world. Her answer? ‘Not to worry.’

Fitting somehow that this post is going up on Friday the 13th. Diane and I both had some really bad luck; non-smokers diagnosed with lung cancer at a young age. However, we also know when to count our blessings. More than a decade after diagnosis we’re still here. Through this journey we have had experiences and forged relationships that have helped make the unbearable bearable. Diane, I am grateful for all you do on behalf of everyone with lung cancer. And I am oh so proud to be your friend. <3

#lcsm  #LCAM

And this is on a good day

I’ve been out of control the past few months—driving, flying and riding trains. Taking care of shit and visiting folks. Having adventures. Tying up loose ends. And damned if it isn’t fabulous that I have the energy to do all this.

PF-06463922 has been my drug of choice (makes it sound a little bit sexier, no?) for more than seventeen months now and my cancer remains stable. That’s the longest I’ve ever gone on a therapy without progression and continued stability is my new mantra. The troubling side effects that I experienced initially have mostly disappeared although time management and memory remain a challenge and the neuropathy in my hands and feet is not going away. Some days I feel like I’m living with a very young child and someone who is elderly—they’re both me.

I am sharing my latest radiology report to lend some perspective. As I look so very healthy, (healthier than most healthy folks) it’s easy to forget that since the beginning of this journey (April of 2005), I have never been cancer free. That’s right—removal of my lower left lobe and four rounds of cisplatin and taxotere was not enough to push this crud out of my lungs. Since then I have always had a varying degree of cancer hanging around. At the moment, the situation is pretty good but this is what a good day looks like:

Lungs and Airways: Central airways are patent. A 1.9 x 2.8 cmlingular subpleural opacity and 5 mm subpleural right upper lobenodule (image 40) are unchanged from 10/7/2014. Several 3-4 mmpulmonary nodules are unchanged from 10/7/2014 and are found in theright upper lobe (image 29, 37, 46, 52) and left upper lobe (image45, 54). A 5 mm subpleural anterior right upper lobe ground glass nodule (image 48) is unchanged from 11/19/2014. Subpleural ground
glass nodule in the anterior right upper lobe measuring 6 mm (image
45) is unchanged from 10/7/2014. A 4 mm superior segment right lower
lobe groundglass nodule is unchanged from 1/19/2014 (image 43).
Additional left upper lobe groundglass nodules measuring up to 6 mm
(image 50) are unchanged from 10/7/2014.

If I was just being diagnosed we’d all freak out. As it stands, this is a great report.

My cancer and I have been sharing the same body for almost eleven (known) years now—that’s 1/5 of my lifetime. Wrap your head around that. During that time I have been to the edge of possibility and back again, a looping cycle of dying, hope, disappointment, loss, more hope and a whole lot of living mixed in.

It can be a real mind fuck.

The Boston Globe has a new online medical magazine called STAT. I was interviewed (print and video) for an article about the emotional roller coaster faced by terminal patients who are given the opportunity to try high risk experimental therapies. Clinical trials offer hope (our favorite word) but responses are not guaranteed and when they do occur, are of unknown duration. All that uncertainty can really mess with your head.

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.