10 years with lung cancer. Grateful for the ride.

Exactly 10 years ago today, I was diagnosed with lung cancer.

It’s been a wild ride thus far. When I was diagnosed in 2011, the majority of lung cancer patients died within a year of diagnosis. I was considered curable, so I had chemotherapy combined with radiation. My cancer grew immediately when I stopped treatment. I had more chemo, followed by more radiation, but again my cancer grew immediately after I stopped treatment. You can read more details about my cancer ups and downs elsewhere on this blog, so I’ll keep the history brief. The upside is that I learned about clinical trials and biomarker testing from patients in online lung cancer communities, got my tissue tested for biomarkers, and joined a clinical trial for ROS1+ cancer.

I’ve been on the same oral cancer treatment (a targeted therapy pill) for over eight years with no sign of cancer on my scans.

I’ve run the gamut of emotions over those 10 years. Some days I felt horrible physically and/or emotionally. A very few moments, I felt hopeless.

Today, however, the predominant feeling is gratitude. Gratitude for the healthcare providers who took care of me. Gratitude for more time for life with family and friends. Gratitude that I was able to watch my son mature and build an independent life. Gratitude that I was diagnosed during a revolution in lung cancer research that generated new treatments, measurably increased lung cancer survival, and gave me a relatively normal life despite metastatic lung cancer. Gratitude for the growing community of lung cancer patients and advocates, and the deep friendships formed therein. Gratitude that I’ve found a new calling as a cancer research advocate.

Especially, I feel gratitude that I have been able to make a difference in the lives of other patients in those 10 years. My current focus is on supporting two programs I cofounded: the IASLC STARS program (which helps lung cancer patient advocates evolve into research advocates), and The ROS1ders (a nonprofit that aims to improve outcomes for ROS1+ cancer patients like me).

If you want to help me celebrate surviving 10 years, please consider donating to The ROS1ders. You’ll be helping me in my research advocacy work, as well as helping find better treatments and care for my cancer. I truly appreciate any support you can give. Just click here: Janet’s fundraiser for The ROS1ders

Exactly 10 years ago today, I was diagnosed with lung cancer. Today I’m going to walk in the sun and revel in the life blooming all around me. My lease on life is renewed yet again. I’ll hold on and ride it as long as it lasts.

Image credits:
Rollercoaster: © Helioshammer | Dreamstime.comRoller Coaster Photo
Scrabble image: public domain
Flowers: Janet Freeman-Daily

Reflections on a Cancerversary

Today is my fourth cancerversary.  Four years ago–May 10, 2011–I first heard a confirmed diagnosis of lung cancer.  On cancerversaries I review events of the past year and assess how I’ve spent my time.  I’m not looking to pat myself on the back for my accomplishments, or check locations off a travel list.  I’m looking to see if I stayed focused on what means the most to me, and whether I need to adjust my priorities.  My time is too precious to waste… continue reading 

Third Time’s a Charm

Today I celebrate my three-year cancerversary. It was May 10, 2011, when biopsy results confirmed my lung cancer diagnosis.

My life has evolved quite a bit since that day. My first cancerversary in 2012 fell two days after my sixth (and last) dose of second line chemo, and a month before my second series of radiation treatments. I was stage IV, continually felt like I had the flu, and though hopeful, didn’t feel much like celebrating. My second cancerversary in 2013 fell sixth months into my current clinical trial. I had achieved No Evidence of Disease (NED) and focused on enjoying life, but was nearing the timeframe when others who took the same experimental drug typically progressed. I flew to Denver every 4 weeks for trial check-in, juggled side effects of treatments past and present, and felt anxious about the future.

My third cancerversary is different. Life no longer revolves around cancer treatment. I’m 17 months NED in my clinical trial, and the drug’s side effects are minimal. My visits to Denver every other month seem almost routine, with only a hint of scanxiety. I’m exercising most days, rebuilding my fitness level, and starting to lose the 60 pounds gifted to me by various cancer treatments. Physically, I’m less a cancer patient and more an out-of-shape fifty-something.

My life still revolves around lung cancer, but not in the same way. I’m busy most days with lung cancer patient advocacy. In addition to writing this blog for over a year, I moderate Lung Cancer Social Media (#LCSM) chats on Twitter and work with lung cancer nonprofits, healthcare professionals, researchers, and patient advocates to raise awareness and support of lung cancer issues such as benefits of mutation testing, screening with low dose CT, living with metastatic cancer as a chronic illness, and the need for increased research funding.

To celebrate this cancerversary, my husband and I spent a quiet vacation week in Whistler BC. The drive from Vancouver along Howe Sound into the volcanic coastal range (via Sea to Sky Highway) showcased Mother Nature at her finest. I enjoyed exploring Whistler Village and surrounds as well as writing. As I watched the snowboarders walking down from the Blackcomb gondola, I did feel a twinge of regret that I can no longer ski. However, I later reveled in the warm sun as I walked the mile around Lost Lake (2200 feet elevation!) at a moderate pace, with only a few stops–I could not have done that in 2011, 2012, or 2013.

So life has returned to an acceptable state of normality. At this point in time, a headache is just a headache—it doesn’t automatically trigger anxiety about brain mets. I look forward to seeing my son graduate from college next May. I accepted a commitment in fall 2015 without first asking if I’d be alive on that date. I know my targeted therapy cancer pill likley will fail me someday, but I now can go weeks without thinking about that.

As Trillian says in Hitchhiker’s Guide to the Galaxy:
“We have normality. I repeat, we have normality. Anything you still can’t cope with is therefore your own problem.”

Howe Sound, British Columbia

Sea to Sky Highway, British Columbia

Lost Lake Outflow near Whistler BC

It’s My Cancerversary — And I’m Choosing to Live

Today is my cancerversary. Two years ago on this date, I was diagnosed with advanced lung cancer.

While my current status is No Evidence of Disease, I know the cancer is still lurking in my body; it’s only being suppressed (not cured) by the targeted drug crizotinib.

I’ve felt myself sliding towards depression this week. I know from past experience what depression feels like, and I do not want to go there again. I suspect subconcious awareness of my cancerversary is part of the reason. Physical discomfort due to treatment side effects (especially hand pain), steroid-induced excess weight and a newly-diagnosed partial hamstring tear aren’t helping matters. It also bugs me that fatigue has kept me from being as supportive as I’d like when my husband recently had cataract surgery.

When I woke up this morning, I realized that somehow, sometime, I had adopted a victim mentality. I have been passively accepting the crap that my body was handing me. That is simply not acceptable.

True, the cancer ain’t gone, but neither am I! Through no small effort of many people, including myself, I am alive. I am not going to waste the gift.

I can’t choose not to have cancer, but I CAN choose how I want to feel about it. Today, I choose to feel empowered and hopeful.

I can’t choose not to have side effects, but I CAN choose not to let the discomforts of my body keep me from exercising. Exercise makes a huge difference in my mood. Today, I choose to go swimming for the first time in years.

I can’t choose not to be fatigued, but I CAN choose how I react when the irritability rises unbidden. Today, I choose to hold my tongue and listen for understanding.

Today, my cancerversary commemorates not just the start of my cancer battle, but my renewed efforts to LIVE.

To celebrate, I bought new underwear. Take THAT, cancer! 😛