Monthly Archives: June 2016

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.

Somebody is all grown up.

Muah! Mom lays one on Peter Duff

Muah! Mom lays one on Peter Duff

Okay, not quite. But Peter Albion Duff is a high school graduate! So very exciting on oh so many levels and a major milestone for his mother as well. Seeing Peter graduate has been one of my goals and I am absolutely thrilled that I was able to be in attendance on this special day. Peter’s father David, godfather Frank, Melinda, Kihan and I weathered the storm (literally) as we watched Peter receive his diploma. He graduated Cum Laude and with two awards–The Lt. John A. Larkin Jr. Memorial Prize in Art for outstanding work in drawing and ceramics and The David M. Bitman Prize for excellence in a wide range of science subjects. We couldn’t be prouder of his hard work and accomplishments!

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Linnea, Peter, Frank

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Photobomb: Linnea, Peter, David, Frank

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Linnea, Peter, David, Frank

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Linnea, Peter, David, Frank

 

*Thank you Phillips Exeter Academy for providing our son with an incredible education and the generous financial aid package that made it all possible. Frank Hundley, you have fulfilled your godfather duties nicely. Melinda Lee, we couldn’t have done it without you. Any of it. Kihan, if you ever want to quit your day job, I think you have a future in photography (all pictures by Kihan). Peter, keep up the good work and we are so excited to see what the future holds for you.

xo

Please don’t call me a survivor

Survivor: a person who survives, especially a person remaining alive after an event in which others have died.

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Today is National Cancer Survivor’s Day. I’m happy for all that find reason to celebrate but this particular person with cancer won’t be in attendance.

Being (still) alive is both swell and notable, but I am going to be a party pooper due to some ongoing issues with the terminology associated with today’s celebration.

The distinction between a survivor and a non-survivor not only disregards, it is also somewhat disrespectful to everyone who really wanted to stay at this party but could not; the many who cancer has forcibly taken. Labeling someone a survivor seems to imply that remaining alive is merit based when in fact, so much of who gets to stay and who has to go is attributed simply to chance.

Secondly, I don’t care for the been there/done that feel of a noun such as survivor. My relationship to cancer is not and likely never will be past tense. It may look easy, but this staying alive stuff is hard, hard work. It’s a full time job and I am laboring all the time; there are no days off when you have terminal cancer. Therefore, I prefer an active word–a verb. I am surviving cancer.

Words have power. I feel that survivor is meant both to honor (sort of the anti-victim) and to comfort–to help those who are labeled survivors to feel both safe and victorious. I appreciate the intention but honestly, I have no use for either recognition or a false sense of security while fighting my disease. What I do require is knowledge, courage, strength, hope, love and increased funding for cancer research. These are tangible tools that I can actually utilize as I go about the real work of staying alive.

Moving up in the world

I just moved to a higher plane; literally. After two and a half years as a resident living on the ground level of a two story building, I have developed a truer understanding of what it means to be a member of the underclass. I am referring not to economic status but rather to the literal state of living under others. Downstream, if you will. Subject to the whims and living habits of those you are in close proximity to; reliant upon their consideration and mercy (or lack thereof).

I now understand the derivation of the expression ‘waiting for the other shoe to drop‘ as my sleeping habits became dependent upon those of my upstairs neighbors. An offer of felt pads for the bottom of their chairs went unheeded, my last complaint about noise well past the quiet hours was met with ‘perhaps it is a ghost’. Eventually it became clear that I must either move out or up. My commitment (and reliance upon) this community is so strong that the choice was clear—I would find a unit on the second floor.

Our building, a renovated mill, is two stories tall but not equipped with an elevator. When I moved in, my health was on the decline and there was no way I could imagine carrying all of my possessions up a flight of stairs. At the moment I am hale and hearty and my bank account able to support the small but necessary luxury of hired help.

Loft on the second floor secured, I had the opportunity to begin moving in some weeks early. I took advantage of this situation as I carted ten to twenty loads up the steps daily. It was like a free gym membership, and the changes in my body (from fit to fitter) have been gratifying.

By the time moving day came, I was certain I had everything under control. Alas, my movers were several hours late and although very careful (a plus), incredibly slow (a big, big minus). Five hours in it was 11 pm, half my stuff was still downstairs, I was over budget and they were ready to leave. I was assured that someone would return on Monday afternoon (this was Friday of Memorial Day Weekend) but honestly that didn’t leave me much time in which to clean my old unit. And if they were late again, I’d be screwed.

I went to bed on my upside down latex mattress which was lying on the floor and woke up sore and pissed. We have a a loft-wide email group and I crafted a plaintive message detailing the pickle I was in. Minutes later the beginning of a rag tag crew began to appear at my door and within three hours a small group between the ages of 25 and 73 had moved the rest of my stuff upstairs. George, Eric, Heather, Machiko, Koichiro, Konnor, Dane, Jay, Susan, Barbara, Brian, Howie—you guys absolutely rock.

One week later, my new loft is still far from assembled. However it is as quiet and peaceful as I had hoped. I think the change in altitude/attitude is going to be a good one.