Tag Archives: Dr. Alice Shaw

In gratitude

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So I’m about to tell you something that is either going to make you laugh or cry. Or not. Maybe you’ll just want to punch me in the face.

Sometimes I get really, really tired of being grateful.

Awful, isn’t it. I know how flipping lucky I am to be alive and most days, my gratitude is boundless. However, twelve years of being grateful for something most people take for granted (waking up in the morning) actually can get old.

As a cancer patient it is expected and accepted that you will feel all sorts of less than pretty emotions. Anger, sorrow, frustration, fear. Confusion. Depression. Bone deep weariness. All taken in stride.

But ingratitude?

The minute I start feeling anything resembling self pity I quickly self admonish. Because I am only too aware what the alternative is.

Those of us with terminal illnesses set the bar both impossibly high but also brutally low.

There is a self conciousness to life when every moment is fraught and at times I dearly miss the insouciance of before. As in, before cancer. The self awareness I have gained has been prompted by significant and persistent provocation. I am both wiser and sadder. And some mornings I’d just like to skip that part about being grateful.

Not because I’m not, but rather because there was something glorious about being so certain that something was due you that giving thanks never even crossed your mind.

I am beyond either innocence or assumption. And that’s ok. I have scans tomorrow, and an appointment with Dr. Shaw next Tuesday. The scans I could do without but the appointment with Dr. Shaw? There is no place I’d rather be. And yes, I will be feeling enormous gratitude.

Me and my hero

 

Linnea (me!) and Dr. Alice Shaw

Linnea (me!) and Dr. Alice Shaw

Just thought this was as good a time as any to post a recent photo of me with my personal goddess/oncologist Dr. Alice Shaw. She is a rock star and with Alice by my side I feel as safe as a person with stage IV lung cancer can possibly feel. Better than that, actually. I know my doctor will do everything within her power to achieve the best possible outcome in regard to my future. That when she says we are a team, she really means it.

Her role is to watch my cancer like a hawk and to stay abreast of any developing treatment options. She’s got that. My task is to work on being as strong as I am able–emotionally and physically–so as to better bear up under both changing health conditions and new treatment regimens. To hang onto optimism and to keep the faith. And, perhaps the most challenging of all, to continue to sit with uncertainty.

It takes commitment and an incredible amount of confidence; on the part of my doctor but also myself. Alone, I don’t believe I could manage. Together, we’re a formidable team. Cancer better watch its back.

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.

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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 http://craigblower.wordpress.com

Tomorrow: By Dann Wonser about Genevieve Wonser found at http://www.dannwonser.com

 

Once upon a time

L1020735In early spring of 2010, the NY Times asked their online readers a question: “How is life different after cancer?” Those who had been touched by this disease were encouraged to send in a response along with a photo, which became part of an (ongoing) interactive collage. I was an early responder in what turned into an enormously popular feature. Some weeks later, the NY Times promoted this project on the front page of the Health Section and my photo and comments were included.

The New York Times and The American Cancer Society have just published aL1020555 book, Picture Your Life After Cancer. It shares both the photos and comments from a broad sample of nearly 1500 people who have now participated. I am proud to be among them.

You can see my gap toothed grin in the introduction, along with some comments I submitted as part of an online discussion about this multimedia project and what it meant to those of us impacted by cancer:

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And then my original submission, which appears on page seven along with one from Cara Howell of Albuquerque New Mexico. I think they might have matched up our smiles (although she had a better orthodontist or was just born with perfect teeth):

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And, if you’ve not had enough Linnea yet today, I was asked by Quantia MD to talk about a doctor who had made a significant difference in my life. I chose the two very excellent oncologists I have had; Dr. Tom Lynch and Dr. Alice Shaw. I both idolize and remain forever grateful to each of them. And by the way, it is an audio presentation, which I recorded after my first 24 hours of insomnia. Until I get rolling, my voice is a bit robotic. Very careful enunciation. Have a listen if you like:  http://quantiamd.com/player/yywhviczd?cid=1689

Not your average cupcake.

Marguerite’s famous cupcakes

First, thank you all for the messages of support; whether is was a comment here, on facebook, or a private message, they are all so very appreciated.

What a week! I’ve not written sooner as there has simply been no time. In anticipation of an upcoming biopsy and perhaps the start of a new clinical trial, I had left my days rather open. Well, nature abhors a vacuum and once we got the good news, my calendar filled up fast. David had a business trip planned to France that had been put on hold, but it too rematerialized, and he has been out of the country for seven days now. There has been a good deal of general scrambling this week; on more than one occasion, I’ve driven Peter to school still dressed in my pajamas.

I may struggle to keep my own house in order, but at my home away from home, The Yawkey Center at MGH, calm prevails.

The level of care I receive is extraordinary. When I walk up to the desk in 7B, I am greeted warmly and by name (as are all the other patients). The trio of phlebotomists are cheerful and exceedingly competent and getting blood drawn is drama free. Generally I recognize a patient or two, and on this past Monday my friend Christian and I had some time to socialize before being called in for our respective appointments.

When first led to my private room, I am weighed, my temperature is taken and my oxygen saturation and blood pressure are measured. On Monday I was just making myself comfortable when Marguerite came in, bearing a dozen red velvet cupcakes. For ME.

I met Marguerite four years ago, on October 1st of 2008. It was the day that I was first dosed with PF-02341066; now known as Xalkori. Marguerite was the phase I Research Nurse and she quickly became my go to person for support. I jokingly called her Mother Superior; she was so obviously in charge and yet also entirely accessible. Recently she transferred from phase I to the thoracic unit, which means I will be seeing her much more frequently. I couldn’t be happier; I adore Marguerite. And the cupcakes? Just the icing on the cake.

When Alice (Dr. Shaw) came in, we went over the scans side by side with the images from six weeks prior. Clearly, the cancer covers exactly the same area as before. No better, no worse. However, to my eye there appeared to be areas of less consolidation in the current image. Alice cautiously concurred, although our observations are not supported by the radiologist’s support. Encouraged, I resolved to shoot for the moon and hope for more resolution on my next scan.

We then discussed the congestion in my lungs, which is again becoming more problematic (it seemed to clear up somewhat after the course of antibiotics for the UTI). It is a relief that my symptoms do not seem to correlate with progression of the cancer, but it is also a bit confusing. I wondered if it were possible that anatomical changes might a contributing factor and Alice said that it is certainly possible; scarring in my lungs could in fact lead to a decrease in function. We decided that daily use of a nebulizer might help.

As Alice listened to my chest, I showed her the middle toe on my left foot, which I had stubbed rather badly the day before. After she left, my scheduler Mike came in and I exchanged my dosing diary and old bottles of drug for new, before grabbing a quick lunch with Christian and then heading north to pick Peter up at school.

By the following morning, the appearance of my stubbed toe had changed dramatically; an angry throbbing red, I felt pretty certain it was becoming infected. Peter had an interview at Exeter that afternoon, and I was unable to get into my GP in the window of time I had before I needed to pick him up at school. So I called Alice. We agreed that I should go to urgent care after Peter’s appointment and that the attending physician would call her before prescribing an antibiotic. “But Alice”, I said, “I won’t be able to get there until at least six and it will be after hours for you.” Her response? “So?”

In short, I was diagnosed with mild cellulitis. Alice was called and an antibiotic prescribed. It was after dark when Peter and I got home and there, sitting on our doorstep, was a box containing a nebulizer. No prescription to fill, no discussions surrounding insurance, no arrangements to make. All the hard work had been done for me, and now all I had to do was plug it in.

Extraordinary.

One magical evening

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On Thursday, June 7th, David, Peter and I attended The One Hundred gala. Our dear friend Melinda joined our little party, and the four of us were fortunate enough to be seated at the same table as Alice (Dr. Shaw) and her husband Stan.

It was an amazing as well as highly emotional evening; a night not only to honor one hundred individuals and organizations, but also an important fundraiser for the Cancer Center at Massachusetts General Hospital.

Actor Matt Damon kicked off the program, just one of several charming and well spoken presenters to take the podium. As the guests enjoyed dinner, large screens displayed a rotating gallery of the honorees. Peppered amongst the presentations were special tributes to a handful of those nominated, including Dr. Shaw.

I was given the privilege of reading a prepared narration for this sequence, which had been recorded several weeks earlier. In addition, photographs of Dr. Shaw and myself in clinic were edited together with earlier images from my journey. Diagnosis, the summer I almost lost hope, and the moment hope rushed back in. And, of course, the integral role Alice (Dr. Shaw) has played throughout:  in essence a very public love letter to Alice from one very gratified patient. I was smiling hard through the tears.

Of course, ours was only one of a hundred inspirational stories that evening. Cancer may be a formidable foe, but the human spirit remains indomitable and everyday heroes abound. In fact, if you know someone who is trying to make a difference in the war against cancer and you would like to have them recognized, nominations are already open for next year.

One in a hundred

There is a special evening coming up. For the past five years, Massachusetts General Hospital has hosted an annual fundraiser where one hundred different individuals or organizations are honored for contributions they have made to the cancer community. Happily, Dr. Alice Shaw will be recognized this year. Surprisingly, so will I. It should be one fun soiree, and all are invited. The down side: the tickets are bloody expensive ($500 each). However, $300 of that is tax deductible and the money raised benefits the MGH Cancer Center.

The venue is the Westin Boston Waterfront and there will be cocktails at 6:00 p.m. and Dinner and the Program at 7:00 p.m. Should additional incentive be needed, Academy Award winner Matt Damon is a special guest.  For a complete list of nominees as well as more information:

Cheers!