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.

It was good while it lasted.

Stability, that is.

As any metastatic cancer patient understands only too well, what doesn’t kill you often just keeps trying.

I’ve been in this battle for so long now–more than eleven years–and most of that time has involved active combat with an ever advancing foe. But thanks to lorlatinib, my disease has been stable since June of 2014; my most sustained period of response yet. As a bonus, I’ve felt so damn good it’s been easy to imagine myself cancer free.

However, my scans have always told a slightly different story, with remaining nodules and opacities scattered here and there.

Lungs and Airways: The patient is status post left lower lobectomy for lung
cancer. There is a left lower lobe solid nodule on image 41 series 201 measuring
5 mm unchanged dating back to 5/14/2015. There is also subpleural patchy opacity in the left lower lobe image 63 series 201 that remains stable compared to 5/14/2015. There are small centrilobular groundglass nodules in the left lower lobe image 51 series 201 also stable compared to 5/14/2015 the largest of which measures 9 mm. There is a stable 2 mm right upper lobe nodule image 32 series 201. There is a stable subpleural groundglass nodule in the right upper lobe image 48 series 201 measuring 5 mm. A second groundglass right upper lobe nodule measuring 5 mm but is essentially unchanged from 12/10/2015 and 4/14/2016. A 4 mm solid nodule along the right minor fissure is stable. There are no new nodulesPleura: There is a small left basilar postoperative pleural effusion that remains essentially stable.

The words unchanged and stable are absolutely key here.

However, on my scan report today it was noted that one nodule had in fact changed size: There is a 5mm nodule on image 52 that appears to have grown since 5/14/2015 when it measured 3 mm but is unchanged compared to 3/6/2016.

Obviously it had escaped the notice of previous radiologists. However, upon reading today’s report, my oncologist Dr. Shaw reviewed the scans and agreed that this particular nodule had in fact enlarged and likely represented progression.

Nothing to panic about but a potent reminder that shit is still real.

Dr. Shaw is already talking game plan. We will scan again in three months. If the nodule continues to grow, we might biopsy in an effort to determine what the mechanism of resistance is. If it can be identified, I might be a candidate for a combination therapy of ALK inhibitors. As this is a solitary nodule and in my right lung this time, surgery is a possibility. So is radiation.

Stability may have been rattled but I’ve still got options.

And honestly, that’s the most important thing.

Just not a just world

There are two kinds of people. Those that believe life is fair (everything happens for a reason) and those who don’t (shit happens).

These differing viewpoints may seem like no big deal until you start thinking about the moral implications of belief in a just world. I suppose if everything is working out for you it’s a pretty convenient philosophy. However, if life has thrown you some major curves (such as a diagnosis of terminal cancer) than you probably don’t believe we all get what we deserve.

My own diagnosis of lung cancer left me completely gobsmacked. How on earth did a young, seemingly healthy woman who had never ever touched a cigarette (me) get lung cancer. And yes, I was struck by the unjustness of it all. I mean, why me?

Well, first of all, lung cancer in non and never smokers is nowhere near as uncommon as most people believe. Approximately 60-65% of newly diagnosed cases occur in former or never smokers.

Secondly, life is not fair.

However, most of us grew up believing in a just world, a well ordered place where sensible and good behavior was rewarded and risky or bad behavior duly punished. This viewpoint not only shaped our moral code, it lent us an invisible cloak of safety.

This philosopy is the very reason that those of us with lung cancer are consistently asked as to whether or not we smoked. The asker wants to be reassured that our lung cancer is the direct result of cause and effect. Of course they haven’t stopped to think about how this question will impact us. If the answer is yes, the implication is that we are the agent of our own misfortune. And if it is no, we are reminded once again of our extraordinarily bad luck.

Belief in a just world is the thinking behind the stigma associated with a diagnosis of lung cancer. Stigma is defined as ‘a mark of disgrace associated with a particular circumstance, quality, or person’. In the case of lung cancer, our diagnosis is inextricably linked to shame and a blame the victim mentality.

Which makes us all incredibly sensitive to any suggestion that cancer, and our disease in particular, is almost entirely preventable. ‘Helpless to Prevent Cancer? Actually, Quite a Bit is in Your Control‘ reads the catchy title of a recent article from the New York Times. The author, a professor of pediatrics (and therefore, I think, not an expert on adult cancers) makes statements such as this: ‘… you’d have to be living under a rock not to know that smoking causes lung cancer…’ Or this ‘About 82 percent of women and 78 percent of men who got lung cancer might have prevented it through healthy behaviors.’ The author makes a stab at empathy with this observation: ‘You don’t want to get into situations where you feel as if people don’t deserve help because they didn’t try hard enough to stay healthy’. However, the word deserve and that bit about not trying hard enough harkens right back to shame, shame, shame.

The way in which disease is characterized matters. Talking about lifestyle changes that can optimize health is always a good thing, but it is important to remain sensitive to the language that is used.

Calamity of all sorts and cancer in particular is often beyond our control. Nobody deserves lung cancer, whether they smoked or not. But sometimes, shit just happens.

 

This matters

For me, the meaning of life is life. I place such a high value on living that all of it (the good, the bad and the ugly) is a privilege. I would do just about anything to stay alive.

As a young woman, my immense respect for life extended to the unborn, as was demonstrated when I became unintentionally pregnant at the age of twenty-four. My parents put enormous pressure on me to have an abortion but I refused and my daughter Jemesii was born nine months later.

I abhor capital punishment and am a fervent pacifist; believing that neither war nor violence is ever justifiable. However, even given my strong beliefs if I needed to kill another person in order to protect someone I love, I wouldn’t hesitate (a personal amendment to never justifiable).

So what does this have to do with anything?

The events of the past week. Two more young black men slain by police officers and now five officers killed in supposed retaliation. Tragic all the way around.

Much hurt, lots of questions and more anger to come. However, if history is any indication, one thing is certain. The killing of the five officers is undeniably homicide–an ‘atrocity’ according to the New York Times. I don’t disagree. Had the sniper not already been killed by a police robot, he would almost certainly face capital punishment. But the police officers who shot the two black men? It is unlikely they will face any charges whatsoever.

A badge should not be a license to kill. Anyone who has watched either of the videos should be shocked and appalled; this too is an atrocity.

I don’t condone the killing of the officers in Dallas and my heart goes out to their families. Knowing that they were targeted, police officers across the country are probably feeling pretty vulnerable right now.

However, there’s the rub. That’s exactly how young black men have been feeling for, well, as long as they have been in America. Vulnerable, disrespected, disregarded and certainly not protected. Profiled. Targeted. It sucks. The situation needs to change stat and frankly, this time love is not the answer.

 

It ain’t over ’til it’s over

Several weeks ago I got a call from a friend who is also battling stage IV lung cancer. He’d gotten bad news; very bad news. His cancer had spread in such a way that his oncologist felt he had only three months to live with treatment but half that long without.

My friend was devastated, as was I. We talking openly about dying—something he couldn’t do easily with his family. I told him that our connection would remain no matter what happened next. He said he loved me. I had the feeling that this might be the last time we spoke.

But I also reminded him that there was really no way to know if this was it—that I too had once been told I had come to the end of options and yet here I was. That he should hold onto hope, because his situation could still change.

Yesterday I got a text message from him. His latest MRI and CT scan had showed reduction of tumor throughout his body.

We spoke again last night–this time the mood far less somber. He was still in a tough spot, but could once more see the horizon. A return to chemotherapy had reduced his tumor burden but he was already looking for the next potential therapy. He sounded like a man with a future.

Home & family

When I made the bold but also long overdue decision to leave my marriage, I had to find a new place to live. Working within the constraints of a limited budget, my options were few. However, I had a hunch that being an artist might just play to my advantage and I began to look for live/work spaces in old mills.

And damned if I didn’t find exactly what I needed. Big enough (1500 square ft), open floor plan (one large room), huge windows abutting water (the Pawtucket Canal) and within my budget. However the very best part about my new home would turn out to be the community.

There are fifty lofts at Western Avenue filled with an incredible assortment of people employed in creative endeavors/vocations. Painters, photographers, writers, musicians, actors, fiber artists, dancers, teachers, metal smiths, ceramicists, glassblowers, jewelers, clothing designers, sculptors, printmakers and a resident drag queen (our facilities manager)…we’ve got it all.

It is a wonderfully funky, fun and supportive crew, and sometimes I feel as if I’ve landed in Oz. We even have a Toto, although his hame is Luke. Besides Luke there is a supporting cast of cats, more dogs of all sizes, a turtle and a rabbit too (oh yeah, I inherited a fish from one of Peter’s classmates).

The one thing we’ve been missing is a baby.

However, my friends/neighbors J. and Joelle took it upon themselves to address this issue and Miles Franklin Haley was bestowed with the title of First Loft Baby on June 16th.

Joelle and Miles

Joelle and Miles

I love my home and the people in this community have become an extended family for me. J. and Joelle, who used to live across the hall from me, have a special place in my heart. One day, about a year into my living here, I impulsively knocked on their door. Joelle answered and I burst out with ‘I just want to tell you that I love you and J.’ Joelle, who is incredibly serene, calmly responded ‘We love you too.’ Five minutes later there was a knock on my door and her husband J. (who is not serene) rushed in and gave me a big hug. Didn’t say a word but we both knew what it was about.

Now I get to be an honorary auntie to the newest member of our community, Mr. Miles. And my family just got a little bit bigger.

The heart of advocacy: AACR Scientist↔Survivor Program

An advocate is someone who takes a public position on a cause or policy. My initial steps into lung cancer advocacy were as a spokesperson–I shared my story with the goal of spreading awareness (even a young, never smoker such as myself could get lung cancer) but also hope–although given a dire prognosis I was alive, thanks to an experimental therapy.

However, I was soon itching to do more and became a peer reviewer for the CDMRP—Congressionally Directed Medical Research Programs. My background as an artist did little to prepare me for the rigor of scientific proposals, but I found that I really enjoyed the intellectual challenge.

I owed a lot to medical research and as a participant in three phase I clinical trials, I had some hands-on experience (fieldwork, if you will). It became clear that medical research was the aspect of advocacy that I was most interested in focusing on. When I heard about the AACR Scientist↔Survivor Program I knew it was the perfect fit for me.

The program coincides with the Annual Meeting for the American Association for Cancer Research and this year it was held in New Orleans. As anticipated, I refined my understanding of the basic biology of cancer (particularly a wonderful Mini Med School presented by Dr. Carolyn Compton on our first day) and also had the opportunity to sit in on not only plenary sessions but smaller presentations around topics including precision medicine and genomics. We attended a policy overview and a special session with the FDA, led by Dr. Richard Pazdur, who lost his wife to ovarian cancer (and also learned a lot about the drug regulatory process from a different perspective, that of the patient). Dr. Pazdur said something during this session that I found very impactful: ‘Patients aren’t for clinical trials. Clinical trials are for patients.’

Being at Dr. Jean Cui’s (she developed crizotinib) poster session and having her greet me as if she were expecting me for tea was pretty darn special. And I even had an out of body experience when I saw my lungs on the big screen during one of the plenaries (the presenter was Dr. Jeffrey Engleman and the topic was resistance to therapy, for which I am a poster child).

C'est moi.

C’est moi.

The single most significant thing I learned from my experience can be found in this statement from the AACR SSP online site:

The AACR Scientist↔Survivor Program is designed to build enduring partnerships among the leaders of the scientific, cancer survivor, and patient advocacy communities worldwide.

The word partnership. Far too often Patient as Partner–a term bandied about in medical circles now–is mere rhetoric. Western medicine is still in the process of transitioning from a very paternalistic practice to one in which the patient is in fact viewed as a partner in his or her own care. The AACR SSP program is trying to push that needle forward by empowering patients/advocates with true knowledge and understanding. It is an incredibly respectful viewpoint, and I am so grateful to Dr. Anna Barker for creating and sustaining this unique program. I encourage anyone who is interested in sharpening their advocacy skills to apply.

As for me? I came away committed to not just medical research, but the patient voice, and particularly that of patients with advanced, or metastatic disease. I’ve already had several opportunities to champion that cause, including a seat on a panel (Stakeholder Panel Discussion: What are the challenges and opportunities for research and delivery of care across the cancer journey?) at the American Cancer Society’s New England Cancer Center Leadership Roundtable this past Monday. At the conclusion of the meeting participants were queried as to the greatest takeaway from the day. And the unanimous response? The patient voice.