Category Archives: Announcements

Twelve. And counting.

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Twelve years ago today I was forty five years old, my youngest child was seven and I was sitting in a hospital bed. I’d been admitted four days earlier after several weeks of antibiotics for a walking pneumonia that just wouldn’t clear up. A CT scan the previous Monday had revealed a large mass in the lower lobe of my left lung and the differential diagnosis was recalcitrant pneumonia, fungal infection or a neoplasm.

I didn’t know what a neoplasm was but my husband’s face had fallen when my general practitioner spoke that word. After she left the room he explained that it was another word for cancer. We’d then driven directly to the local hospital where I was placed on IV antibiotics.

Those first days were awful. I was in a room with three other woman, one of whom was dying and another who’d had a severe asthma attack. As I lay in bed I worked incessantly on my laptop researching everything I could about lung cancer. One thing stood out–the dismal five year survival statistics–15%.

The day of my biopsy the patient before me was a prisoner, handcuffed to his wheelchair and accompanied by two officers. When my turn came the surgeon performing the procedure told me that it was highly unlikely that I, a young never smoker, would have lung cancer and that what he was seeing on the CT scanner looked like a fungal infection.

After the biopsy I had to lay very still for several hours without speaking so as to minimize the chances of a pneumothorax. This was difficult as one of the attendants was someone I casually knew, and she kept asking me questions. My lung did partially collapse, as it now has every single time I’ve had a biopsy.

On Thursday morning my doctor came to my room first thing. My husband hadn’t arrived yet and she stalled, telling me a protracted story about her daughter and some dramatic production that featured a field of sunflowers. She said “You know, a sunflower represents hope.”

When my husband entered the room my doctor got right to the point. “I’m sorry but you have lung cancer.”

I really don’t remember anything she said after that as both my vision and my hearing seemed to have suddenly constricted. I had this sensation that I was in an airplane and it was going down. My husband would end up having to call my family members–I was simply too devastated to speak to anyone.

However something incredibly fortunate happened later that day, something that changed everything.

I was assigned an oncologist, who spoke to me only briefly. That evening my husband called him with a question and this oncologist was incredibly rude. We decided that he was not someone to whom I would like to trust my care. And so my husband immediately called one of my dearest friends, whose husband was a surgeon, asking for their opinion as to a good doctor.

Her husband had done his residency at Massachusetts General Hospital, and he gave us the name of the thoracic surgeon he had worked under. And that is how I ended up at a major research center rather than a local hospital. Because of one rude oncologist. To whom I actually now owe a thank you.

#twelve&counting

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

About time

Sort of ridiculous, but my About on this site was some 4 1/2 years out of date. Whoa, good problem to have, rewriting Abouts. So, it’s been freshened up a bit. About time I might say. Little preview here (to save you from having to push that About button):

Time for a new About! The last one had me six and 1/2 years out from diagnosis, on crizotinib (Xalkori) and happily married. So much water under the bridge since then, my friends!

So, updated version. I was Linnea Duff, but I’ve been divorced since 9/1/15 and have reclaimed my birth name, Linnea Olson. I am now 56 flipping years old–old enough to qualify for a senior’s discount at Salvation Army and Saver’s thrift stores. And I couldn’t be happier. Old age is not a problem, it’s the goal!

Crizotinib bought me close to three years, but in the time since I spent 18 months on trial for ceritinib (Zykadia—where do they get these names?), returned to chemotherapy (carboplatin and pemetrexed), took a breather, returned to crizotinib and then in May of 2014, started my third phase I clinical trial for lorlatinib. Despite having acquired some secondary mutations along the way–S1206Y and G1202R–I have had both a positive and sustained response to my third ALK inhibitor.

In April, it will have been eleven years since I was diagnosed. My three kids are all adults now, at ages 31, 30 and 18. The youngest, who is in the college application process, wants to be a cancer researcher. Mama couldn’t be prouder.

And me? Living in a renovated mill in Lowell Massachusetts in a community of artists. I am once again a practicing artist and also sell vintage clothing on the side (The House of Redemption). I continue to devote a fair amount of time to lung cancer advocacy and in addition to my blog here, I write for CUREtoday.

Best news of all? I feel great, absolutely fabulous.

And I think I’ll hang onto the video—even though it is out of date. It just makes me SO happy.

Thought bubble: stuff on my mind

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I’ve got a lot of catching up to do and the longer I wait, the more daunting the task becomes. As my one and only resolution for this year is to not procrastinate (an utterly self defeating behavior), I best get started.

Oh, man. Where though, how? Maybe with the fact that my sister Binky pointed out to me that this is the first time in my entire life that I have lived alone. I’ve always had parents, brothers and sisters, roommates, partners or even my own small children as a hedge between me and loneliness. Now, it’s me, myself and I.

Fortunately, there have been only a handful of days where my newly solitary lifestyle has felt like a negative. For the most part, I am reveling in me-ness. But separating me from the mess; me-ness, messiness, has been quite the project.

You see, I love stuff. Books, beach glass, buttons (and that’s just some of the B’s). In my 54 years I’ve amassed a fair amount of treasure. Thank goodness I’ve moved into a space large enough to contain it all, but I also need to wrestle these stacks into submission. Go through it all, assess what I really want/need, and then find good homes for the rest.

A peaceful environment is enormously important to my sense of well-being. My life has been disordered for some months now, and some healthy routines have fallen by the wayside. Eating well, exercise (yoga!), catching up on email and yes, writing. However, I’ve got to stop using the chaos (however compelling) as an excuse.

It’s been far too long, and I apologize. To you, and to myself. This blog is enormously important to me, and the ability to maintain it a privilege that I never wish to take for granted. Me, myself and I; we are honored to be able to share our life with you. Even the messy parts.

Sharing on

Publishing will share in one place.(change)

Publish

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Good news to share and one proud mama

So this story has its beginning over a year ago, while I was recovering from my first bout with liver toxicity.

Although I am well acquainted with my own mortality, generally I feel as if I am viewing it from a reasonable distance. At times that distance has been measured in months but generally I am confident that I’ve got another year or two (and I reset the clock every morning).

However, in the days following the precipitous rise of my liver enzymes, I had to acknowledge that my continued existence is potentially rather tenuous. And I put myself into then fourteen year old Peter’s shoes. I imagined what life would be like for him not only without a mother, but living alone with a father who spends a good deal of time on the road. I realized that it was necessary to, somehow, someway, beef up his support system.

Several months later I was on a plane to Colorado for my thirty-fifth high school reunion. Seated next to me were a mother and daughter. The young woman, name Sarah, was a student at Phillips Exeter Academy and she was flying home to the west coast for summer break. The three of us began to talk, and soon I was asking Sarah all sorts of questions. I was so impressed by her intelligence and poise, and by the fact that she portrayed Phillips Exeter as such a supportive community.

I realized that boarding school might well provide the haven I was seeking for our son.

Soon thereafter Peter and I began the process of applying to private school. And what a process it was. We visited seven campuses and each did eight interviews. Peter took the PSAT’s and SSAT’s. Ultimately we narrowed the field to five excellent schools; all within two hours of our home. With applications due in January, crunch time coincided with the switch-up of my treatment. But, and I’m going to repeat myself—somehow, someway, we did it. Applications, short essays, transcripts and letters of recommendation. All in by the deadline.

On March 9th there were two thin letters at the post office. Peter had been waitlisted at Deerfield Academy and St. Pauls. We held our breath. And then he opened an email—he’d been accepted to Phillips Exeter Academy, which, frankly, is one of the best private schools in the world.

The email (which included a very fun video) was followed by an acceptance packet with a personalized letter (kudos to the marketing department at PEA). If I may quote:

“This year, we admitted only a fraction of particularly interesting students from a large and extremely talented pool of candidates–you should be proud of your selection. The Admissions Committee was impressed by your intellectual curiosity and compassion for others, along with the strength of your recommendations and your academic record at Academy for Science And Design.”

And then: “Exeter’s classes next fall will include many outstanding young people from more than 23 countries and nearly all of the 50 states…Your class could include an award-winning traditional Hawaiian dancer…an acclaimed poet and bee-keeper…and, we hope (this is in reference to Peter) a budding engineer from Amherst who is an ESL teacher for political refugees, an avid reader and talented writer, and a freshwater fish-keeping aficionado.”

To say we are excited is an understatement. There is a lot to figure out yet, and financially, this will create new challenges. For Peter, it is the opening up of a fresh world of possibilities. The opportunity to live in a community (he will board), to engage in a plethora of extracurricular activities, to make new friends, all while getting the best education possible.

Of course, even as my heart sings, there is a heaviness. We will see much less of this child we adore, as his new school will become a second family. But that’s okay—as they say, sometimes it takes a village.

A couple of days ago I got back in touch with Sarah, the young woman from the plane. And I told her how a chance encounter had become so much more. Sarah-ndipity, if you will.

Post-it note that was affixed to the door of Peter's bedroom for six months

Post-it note that was affixed to the door of Peter’s bedroom for six months

Thriving with Yoga: Yoga for Peace 2012

One week from today Jemesii and I will be attending the 5th Annual Yoga for Peace. An all day love/wellness/yoga festival, participants may choose from a wide variety of workshops. Healthy food, a gong bath, dancing and chanting shall make for an eventful day which will close with a healing ceremony.

Already, more than 400 people have registered to attend, but there is room for more at this donation based event, which benefits the Peace and Social Justice Studies Program at Nashua Community College and  Thriving with Yoga, a program of YogaCaps, Inc.

I have been a beneficiary of Thriving with Yoga since the early spring. Taught by Jay and Terry Gupta, these free yoga classes for individuals with cancer are truly special. Basic (but low impact) yoga, breathing exercises and visualization help strengthen body and spirit both. Students become devoted, not just to the practice, but to Jay and Terry as well, who bring such love and caring to every session.

If you live within driving distance of Nashua, NH, I urge you to come to Yoga for Peace, and experience yoga first hand. As that fine fellow Dr. Seuss once said:

“If you never did you should. These things are fun and fun is good”