Alice called me two days ago to share the news that she would be leaving MGH at the end of November for a position at Novartis as VP, Global Head of Translational Clinical Oncology.
My first thought was that I was grateful she was staying in the Boston area. And then my heart sank anyway. However Alice quickly assured me that she would retain one half day of clinic and so could still see patients. I was also concerned as to the impact on the clinical trial I am waiting for (it is a trial she has designed), but evidently that will still be a go.
Obviously this is something of a loss on a personal level, but I nonetheless greeted the news with overall enthusiasm. Alice will remain a champion of ALK+ and ROS1+ cancers and will be directing her energy in the lab to developing more treatment options. I am relieved that she will remain a clinician but I also believe that by focusing on discovery, Alice will use her formidable talents to the benefit of many more people.
Change is difficult and I know this was not an easy decision for Alice. I’m excited for her and incredibly proud of all she has accomplished. I also believe her experience in the clinic will translate to a sense of urgency in the lab–she will remain a fierce advocate for patients.
My dream team is going to get a remodel. I will miss the old look. But I also want Alice to be in a position where she can do more faster–to the benefit of the greater good. Alice wants that as well, which is why she is making this career move. So really, there’s just one thing to say.
And you damn well better use it. Even if—sometimes especially if—it hurts. Love is the heavy lifting when it comes to this little pump. Love, love and more love.
Heartbreak? It’s real but, in the same way a tree requires wind in order to put down deep roots, a heart can do with a good gale now and again. Yes, really. Loving and losing is our greatest fear. But that is also what makes love so very precious.
The hardest part of living with a disease like lung cancer is the loss. If you make the decision to establish connections with people who are facing the sort of survival stats we have, well, you need to understand from the get-go that death is going to be a frequent part of the equation.
It sucks, and sometimes it overwhelms as well.
I asked my oncologist, Dr. Alice Shaw, how she dealt with losing patients. Her response was that she viewed her role as a thoracic oncologist as a privilege. That caring for someone (in all senses of the word) as they faced extraordinary circumstances was an honor.
Her response struck me, because it is exactly the way I feel. Privileged to love so very many. Honored to share this fucking journey. And in awe of the fact that my heart–although at times so very heavy–has only grown stronger.
Life is hard, and avoiding that reality is not going to make anything easier. Nor is letting your heart go all flabby, just because you’re afraid of giving it a workout. Use it or lose it y’all. Live. Love. Heart, eyes and mind wide open.
When I awakened yesterday morning my first thought was that I would be getting bad news at my scan review later that day. And then my second thought was that if I was truly experiencing progression, Alice was already both aware of and on it.
Two for two.
Like some pernicious weed, my cancer is cropping up again in the same exact spots it always does. Nothing drastic yet—interval thickening and slight increase in size—but the concerning part is how quickly I have become symptomatic. That and the fact that I have now acquired resistance to three ALK inhibitors, with lorlatinib being the biggest hammer in the tool box and supposedly covering most resistance mutations.
Slice of me
So I’m up a bit of a creek. Last night I got a text from my youngest in which he said he was so sorry and then ‘I’m scared.’ I wrote him back saying that I was also sorry and scared but that I was strong and Alice is smart and we will figure this thing out.
At the moment I am staying the course on lorlatinib. We did discuss going up in dose but Alice felt I would experience no true therapeutic advantage while increasing troublesome side effects.
I will scan again in eight weeks and Dr. Shaw is looking into whether it would be safe to perform a needle core biopsy. One area is too close to the diaphragm and the other is inconveniently located underneath my left breast. The last time I had a biopsy it was straight through my boob (as uncomfortable as it sounds).
Hopefully that will be possible though as it could help us figure out possible avenues. Discussed so far have been radiation on the area furthest from the diaphragm and a combo of lorlatinib and some other agent.
Mostly I am sad. Feeling fine (not so very long ago) was absolutely amazing. I’m on a roll with my art/writing/gym/dating and I realize this is going to put a major crimp in things. In short, logistically life is going to get a hell of lot harder and I’m not looking forward to it.
Per the bigger picture, I’m trying to keep my head from going there. Focusing on what’s right in front of me is going to help me maintain my cool and my courage. And I’m gonna need them both.
However, I’m not in this alone. The outpouring of messages after I made a post on Facebook confirming progression has been astounding. As I left my appointment yesterday Alice and her PA Jen Logan both hugged me hard. And then Jen looked me in the eye and said ‘We’re going to fight this together.’ I know she means it.
Or rather, they paid us a visit, as I had the privilege of being interviewed for a story in the May/June issue of Harvard Magazine. The news just came through that I am a cover girl as well.
The article, Targeting Cancer, features Harvard researchers, including my personal goddess/oncologist, Dr. Alice Shaw.
Jonathan Shaw, the managing editor of Harvard Magazine, has written a marvelously comprehensive overview as to where the treatment of cancer is currently but also the directions in which it is heading. Says one researcher about acquired resistance: “We’re not going to get there in one fell swoop…We’ll get there by keeping people alive longer and longer, until eventually, it becomes a numbers game where the goal is to eradicate all the tumor cells and leave none behind that have drug resistance mechanisms that allow them to escape.”
It is the sort of heady stuff that inspires hope, and a potent reminder that some truly great minds are in this battle with us. And, that in this numbers game, each day is a little victory.
Damn. I’ve been so busy living (!) that the thirteenth anniversary since my diagnosis with lung cancer–on 4/5/05–just whizzed right on by.
And really, that’s how it should be. It’s the journey that counts, right? And I am enjoying one hell of a scenic ride. Art, advocacy, a little bit of loving (more on that later–wink, wink). Up to my neck in the wonderful details of this one and only life that I call mine.
Which is not to say I’m taking anything for granted. No, far from it. I still begin my days with ‘I’m alive, I’m alive, I’m alive.’ And now I am apt to add in “I’m in love, I’m in love, I’m in love.’
I think it is no coincidence that live and love are separated by only one letter. In fact, i directly precedes o both in the list of vowels and on my key board. I am wont to sign my personal missives ‘love, Linnea’ but quite often I hit the wrong key and instead type ‘live, Linnea’.
I am also delighted by the fact that my personal goddess/oncologist Dr. Shaw is named Alice. C directly precedes v on the keyboard and once again, It is not uncommon for me to type Alive rather than Alice.
It’s all so nice. As is being both alive and in love (with life) thirteen years post diagnosis–at least a decade longer than I or my oncologist once thought possible.
Thank you innovative medical research. And keep up the good work. I’ve got plans; big plans.
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.
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.
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.