Are you a connected cancer patient? Tell the President’s Cancer Panel what you think!

This blog was originally published July 6, 2015 on my Cure Today blog.
hcldr connected cancer patient chat

Like many cancer patients, you are part of connected health: by reading this blog, you are using technology like the Internet, computers and smartphones to access information about a disease or patient experience.

This year the President’s Cancer Panel workshop series is addressing various aspects of connected health. Their third workshop on July 9, titled The Connected Cancer Patient: Vision for the Future and Recommendations for Action, will be open to the public (see agenda and attendees ).

Cancer patient advocates Corrie Painter, Stacey Tinianov and I will be participating in the July President’s Cancer Panel Workshop.  To help gather input for the event, we will be guests on the Healthcare Leadership (#hcldr) tweetchat Tuesday, July 7, at 8:30pm Eastern Time.  The questions we will be addressing are… [read more]

Brain fog: the subtle side of scanxiety

Image credit: Microsoft

Image credit: Microsoft

Tomorrow morning I fly out for another Monday PET-CT scan at University of Colorado (CU) in Denver. Tuesday I start cycle 35 of Xalkori on my clinical trial (cycle = 4 weeks). If my Tuesday clinic visit reports a clean scan, I’ll be almost 30 months NED on this targeted therapy.

Because my injured left shoulder is so inflamed, I asked my oncologist if I should have a CT instead of the usual PET-CT this time (inflammation shows up hot on a PET scan), but he says he will just ignore that shoulder. Since I had a detailed MRI of that area a couple of weeks ago when diagnosing my shoulder problem, I’m not concerned a metatasis might be missed. I do wonder how my shoulder will feel after having my arms over my head in the scanner for over 20 minutes, but that’s not a big concern either.

While at University of Colorado, I’ll also be meeting with a CU communications staffer (to discuss cancer center public relations), a molecular pathologist (to discuss ways to explain benefits of genomic testing), and Lung Cancer SPORE members (to discuss a SPORE project). I’m really enjoying my work and friendships with all of them, and love getting to learn about cutting edge science from those who are doing the research. Alas, Dr. Camidge is away on travel, so I won’t get to work on any videos with him this trip.

Interesting projects are definitely worthwhile distractions at scan time. I’ve been so busy with lung cancer advocacy and travel (26 days out of the last two months) that I haven’t had time to feel any conscious scanxiety. However, I still haven’t packed, completed household pre-trip tasks, or written items with impending deadlines, and I’m moving slower than usual. I find myself having difficulty thinking beyond my next cup of coffee. It’s sunny and clear outside, but gray and fuzzy inside my head. So maybe I’m not yet entirely immune to scanxiety’s influence.

Then again, the brain fog could simply be lack of sleep due to Seasonal Affective Disorder (the sun is up 16 hours of the day right now in Seattle), time zone tango, and travel schedules. The source of the fog doesn’t really matter, I suppose, as long as I warn my family of its presence. Otherwise they may wonder why the dirty dishes are in the microwave instead of the dishwasher.

Pavement Diving Is Not My Best Event

On May 28, I blithely strolled the streets of Chicago and stepped in a missing sidewalk square.  My right toe caught the edge as I stepped out, and momentum carried me forward.  I lunged several steps, trying to regain my balance, but my shoulder bag (with my iPad and other weighty items) threw me off balance.  All 230-ish pounds of me crashed in a face-down baseball slide, arms outstretched like Superman, onto the ChiTown pavement.

Credit: Sandro Giordano (Instagram)

Credit: Sandro Giordano (Instagram)

Fortunately my husband was only a step or two behind, and stayed with me as the dizziness of shock dispelled.  Eventually he pulled me to my feet with my left arm (I protect my right arm after radiation damaged its nerves) and he steadied me as we wandered to our hotel, followed by a solicitous street sweeper who insisted the pavement would be repaired immediately.

Heck of a way to end our anniversary celebration, much less start a five-day conference (ASCO) in which I daily log 3-4 miles of walking.

At the hotel, I discovered I’d skinned my bare left elbow as well as my right kneecap (despite being covered by jeans and compression hose), and my shoulder hurt.  I hadn’t noticed any pain before.  I wondered aloud if my neuropathic tootsies perhaps contributed to the fall, then applied bandaids over the raw skin and iced the joints.  The iPad seemed unfazed.

The next morning, my knee was bruised, but supported my weight and allowed me to walk comfortably. However, my shoulder didn’t want to move or be touched.  Putting on a bra became an Olympic challenge, only slightly more difficult than pulling on pants and a t-shirt. I didn’t use the arm much for the rest of the week.

Two days after we returned home from Chicago, I saw my primary care provider. He said the knee was healing, but suspected a rotator cuff tear in my left shoulder.  An orthopedic specialist  ordered an MRI.  

The good news:  the shoulder shows no torn tendons or muscles, just a bad bone bruise, tendon strain, and a ton of inflammation. I came very close to breaking my shoulder (the socket does have a tiny crack), but no surgery is necessary. The shoulder gets four weeks rest in a sling, then physical therapy.

The bad news: since I’m on warfarin, I can’t take anti-inflammatories (NSAIDs), and I can’t have a cortisone shot to reduce the inflammation because the bone won’t heal properly. I can have Tylenol and, if I need it, Vicodin (which, thankfully, my clinical trial allows me to take).

To celebrate, I bought myself a rolling case for my PC, and washed sports bras to wear the next few weeks.

Yet (despite my dramatic retelling) the entire episode seems no more disruptive than a scratch.  I will recover.  Life goes on, with only a temporary adjustments in activities and few hours lost in the clinic.  Compared to cancer, this is a minor bump in the road. Or a dip in the sidewalk.

So what if pavement diving isn’t my best event?  I’m damn awesome at living.

What’s the best part of National Cancer Survivors Day?

To celebrate National Cancer Survivors Day, I’m sharing a recent picture of me with Linnea Olson, a sister metastatic lung cancer patient and one of the bloggers (Outliving Lung Cancer) who inspired me to become a lung cancer blogger and advocate.  She and I are both alive thanks to research and clinical trials.  As Linnea phrased it on Twitter, … read more

#LCSM Chat topic 5/21: Living with and Beyond Lung Cancer

This is a reblog of a 5/18/2015 post on the #LCSM Chat site (reposted with permission).

You mean I have to say something

Lung cancer patient advocates are beginning to make their voices heard and gain acceptance in the medical world.  For the first time ever, patient advocates will be speaking from the stage at the World Conference on Lung Cancer (WCLC), the largest meeting dedicated to lung cancer anywhere.  The meeting, which runs September 6-9 in Denver and is sponsored by the International Association for the Study of Lung Cancer (IASLC), will have sessions on research, treatment, biotech developments…and patient advocacy topics.

In the session titled “Advocacy in Practice,” #LCSM Comoderator Janet Freeman-Daily will be speaking about “Supporting Lung Cancer Survivors–Living with and Beyond Lung Cancer,” which will inform lung cancer healthcare providers … read more

“Moving On” — a yarn about knowing when to let go

The short film “Moving On” touched me both as a daughter who made care choices for dying parents, and as a metastatic lung cancer patient who is likely facing death sooner rather than later. It’s especially poignant since I spent yesterday in a workshop about palliative care and end of life. I needed several tissues after the subtle headshake, yet the tears were cathartic.

I pray all of us and our loved ones will  make the most of whatever time we have together, and know when it’s time to let go of the yarn — whether for ourselves or for those in our care.

Please remember to touch and be touched by your loved ones before the yarn is all gone.

Thanks to Lucy Goddard Kalanithi for sharing the link.

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 

My drug is a breakthrough!

Woohoo!  My clinical trial drug may get FDA approval soon!   It’s about time.

The clinical trial in which I participate has been running for over three years.  I take Xalkori (crizotinib) for my ROS1-positive non-small cell lung cancer.  Early phase clinical trial results  announced last year show around 72% of patients experienced measurable shrinkage of their tumors, and another 12% achieved stability.  This is remarkable, considering most chemos have a response rate around 20%.

The average crizotinib response lasted about 17 months, with half of the patients still responding when the data was collected for the journal article.  I personally know at least four people (including me) who responses have lasted over two years (two of them are not on the trial).

Today Pfizer announced it had received US FDA “breakthrough” designation for Xalkori treatment of ROS1+ non-small cell lung cancer.  This means it is on the fast track for FDA approval for treatment of ROS1 NSCLC (after already being approved for treatment of a different lung cancer mutation).

My marvelous clinical trial drug may finally get FDA approval.   It’s sort of moot, in a way, because the evidence of its effectiveness is so outstanding that most US insurance companies are already paying for crizotinib treatment of ROS1 NSCLC.  But it is still cool.

Pfizer Receives U.S. FDA Breakthrough Therapy Designation For XALKORI® (crizotinib) For The Treatment Of Patients With ROS1-Positive Non-Small Cell Lung Cancer

Coincidentally, I have my clinical trial appointment today, and I’ll be talking with one of the lead investigators (my oncologist, Dr. Ross Camidge) about what this announcement means for those of us still on the trial.

Can I fly when I have cancer?

Many patients with active cancer can fly safely.  If you have concerns about your fitness for flying, ask your doctor — some cancer patients (such as those who have had lung-related problems, edema, or recent surgery) might be at risk for complications if they fly.  Cancer Research UK’s brief list addresses situations when you shouldn’t fly.  The National Comprehensive Cancer Network’s online article offers general tips about traveling with cancer.  However, even though you and your doctor think you can fly safely, sometimes the airline might prevent you from flying … continue reading

Distraction is the better part of valor

Photo credit: Flickr user Francesco (Creative Commons)

Photo credit: Flickr user Francesco (Creative Commons)

Today I’m again boarding a flight to Denver, Colorado, for my bi-monthly scan and clinical trial check-in. Packing and traveling for my clinical trial is pretty routine after  2+ years. Despite the best effort of my conscious mind and having No Evidence of Disease for 28 months, some small part of me still gets nervous as scan time approaches.  Even seasoned cancer survivors can sometimes experience scanxiety.

Perhaps spending March dealing with pneumonia prompted this feeling. I caught an upper respiratory virus shortly after my husband did. Since I could see his symptoms were similar to mine, and my symptoms started only a few days after my last clean scan, I wasn’t worried the severe goopy cough might be lung cancer progression. However, the goop got caught in my radiation-scarred lower lobe of my left lung, and set up residence. It took me two Z-paks of antibiotics and a couple of extra weeks to knock it out.

I suppose that reminder that my lungs are vulnerable could be enough to explain my edginess and need for more hugs. It’s not overwhelming, it just slows me down a bit. I just wish my rational mind and faith had learned by now how to silence the vague unease.

Fortunately, a new science fiction story idea popped into my head yesterday and is vigorously trying to elbow out an article I’m struggling to finish this week. I’ll try to capture the concept on my flight to my Denver clinical trial today, before it fades in the chemobrain fog.  My mind will be productively preoccupied during this trip.  Maybe if they work together, the two writing projects can throttle this low-level scanxiety.

Distraction is the better part of valor.