Three pavement dives make a trend


Yesterday morning I repeated the pavement diving stunt I pulled in Chicago last May that broke my left shoulder: I caught my toe, staggered a few steps, and played Superman on the hard deck.  My official “Klutz” merit badge is due to arrive any day now.

This time I had the foresight to fall just as I entered the University of Colorado Cancer Center for my monthly labs.  The staffers at the information desk rated it a 5 out of 10 for style, and a flurry of doctors and nurses descended immediately.  The nurse who drew my labs insisted on walking me to the ER for a quick x-ray, which showed I had not reinjured my left shoulder (**whew**).  I was discharged from the ER just in time to drive to the airport for my flight home. I still have full range of motion in both arms, but movement is a bit less comfortable. Since I still can’t take anti-inflammatory drugs like NSAIDs (due to blood thinners), I might choose to get that second cortisone shot I’ve been avoiding, unless icing can adequately soothe my angry tendons (good name for a rock band, isn’t it?).

My legs have seemed weaker recently.  I’ve been traveling a lot lately, and therefore walking and climbing stairs more than usual, which might be at least partly responsible.  Also, my feet are getting more vocal in recent months about their objections to past chemotherapy — a paper published in January found peripheral neuropathy greatly increases the risk of falls among cancer survivors  (to which I reply … ya think?).

This is my third fall in nine months, which set off alarms for my docs at my check-in today.  They say three falls  in a year counts as a “trend.”  I’ve been referred to physical therapy for an evaluation of leg muscle strength, range of motion, and other possible mechanical reasons for my falls.  If this doesn’t reveal anything useful, my next stop is a neurologist. I had another clear brain MRI in January, so brain mets are unlikely.

A potential neurological issue seems relatively trivial compared to my metastatic cancer, but it does mean more medical appointments when I’d rather be writing.  When will I learn to be a boring vanilla cancer patient?


Tips for Coping with Cancer: Make a “Grateful” List

In 2013, the website Moments A Day posted a lovely list to help moms remember why they’re grateful for the irritations in their life. It’s a great example of recognizing that how we choose to think about events can make a difference in how we view life.

Grateful from MomentsADay_com

Cancer patients occasionally need similar reminders. Some days we may have difficulty seeing the upside of anything, especially when in active treatment, experiencing unpleasant side effects, or facing cancer progression. On such days, we need to be creative and write a list  … READ MORE

This post was first published on my Cure Today blog on 14-Oct-2015.

Building cognitive skills after chemobrain

Earlier this month the MIT News published an article titled, “The rise and fall of cognitive skills.”  It discussed research that found different types of thinking skills peak at different times in life.  I particularly like this part:

… crystallized intelligence — the accumulation of facts and knowledge … showed a later peak, in the late 60s or early 70s.

People who participated in this online study demonstrated their ability to build their vocabulary continued to increase into their 60s and 70s, which indicates their ability to accumulate facts and knowledge also continued to increase.  This is awesome!   As a person in my 50s with cognitive impairments from cancer treatment, I’m reassured to know that at least some parts of my brain may continue to improve.  Woohoo!

Now if I can just remember what I learn …



My Physical Therapist Was Right (Darn It)

OK, physical therapist.  You made your point.

When I first worked with you in early 2013, about six months after cancer radiation therapy zapped the nerve bundle for my right arm (the brachial plexus), you gave me wonderful exercises to strengthen my rotator cuff muscles.  At the end my scheduled visits, you said I would have to keep doing those arm exercises daily for the rest of my life, and I shouldn’t lift more than 20 pounds with that arm, ever.

After months of daily exercises, those muscles grew strong.  I REALLY wanted to think my arm was normal again.  I thought I could be done with physical therapy and go back to lifting everyday things like kitty litter and groceries and storage boxes in the closet.

NOW, a year after our last visit, I get it.  Now, when I can’t raise my arm over my head without shoulder owies.  Now, when two sequential PET-CT scans show degeneration in the right shoulder joint. Now I’ll go back to daily arm exercises with the wimpiest exercise bands and no hand weights, like a newbie.

At least I kept the printouts of all the exercises so I know what to do.  I may take a while to get the point, but I CAN learn.

Maybe on my next flight to Denver for my clinical trial, I’ll be able to raise my right arm comfortably again.  If so, I’ll raise my arm …  and ask the flight attendant to help me by lifting my bag into the overhead bin.

Cancer reality: 20-something
Me: 1 (extra credit for keeping the exercise printouts)


A Fog of Feeling

An onshore flow is washing over the Puget Sound this morning. The mocha-thick fog smells of shoreline and decaying leaves.  Fall is wafting in, and it soon will be dark when I get up at 7 AM.

If you detect a bit of melancholy in my words, you’re right. My emotions are foggy.  It’s been a week of highs and lows.

Yes, the highs outnumbered the lows. Friend and lung cancer advocate Tori Tomalia (who has the same type and stage of lung cancer as me) gave an inspiring and moving speech at a lung cancer event.  Someone found my blog by googling “wonderful late stage cancer blogs.”  A Facebook friend said my Stanford Medicine X speech on lung cancer stigma changed her life.  And a new lung cancer drug received Breakthrough designation by the FDA for those with ALK-positive non-small cell LC.

But the down came late, and hard: another stage IV lung cancer patient with my genomic mutation (ROS1) died yesterday.  Burton, a Harvard grad, was only 26.  He didn’t even have time to marry his fiancée, Emily (who’s been blogging about Burton’s lung cancer since April).

Being part of lung cancer community that includes advanced and late stage patients means the community, however educated and motivated, will lose members. I’m almost numb to it by now.  But I still feel something, even when the lost member is someone I’ve known only through Emily’s “ros1positive” blog.

For no logical reason, Burton’s death also makes me a bit anxious about my monthly blood work tomorrow. I’ve had so many blood draws over the past 3 years that I don’t really think about them.  But now, for the first time, I’m wondering if the blood draw will hurt, or if the nurse will even be able to draw my blood.  Last month my power port was seriously misbehaving, so I had to have the PET scan tracer and CT contrast injected into a vein on the flat inside of my left arm.  The tracer injection was fine, but the pressured injection of contrast HURT.  By the next day, I had a lumpy blood vessel at the injection site, and skin around the vein was angry red.  A month later, that section of vein is more black than blue.

My port is misbehaving on most scan days now, and the fibrin sheath I’ve grown over the tip of my power port’s catheter is getting tougher and tougher to remove. It may be time to have my port replaced.  Yes, it’s only minor surgery, but it means losing a day to the anesthetic  and accepting considerable discomfort around the surgery site for a week or so.

Being good at growing a fibrin sheath is not a useful skill. I wish I could grow something over my emotions when yet another friend who has lung cancer dies.

Neuropsych Serendipity

I visited the Virginia Mason Neuropsychology and Rehabilitation department today for a consult about dealing with my chemobrain symptoms.

I expected the appointment to be an introductory session: the counselor and I would spend the time recounting my cancer history, detailing my symptoms, explaining the chemobrain study in which I participated at Fred Hutchinson Cancer Research Center last year, learning about therapy options, and discussing possible neurocognitive testing.

Turns out the Ph.D. psychologist I saw was the lead researcher for last year’s chemobrain study!

She knew me.  She knew my history. She had access to my previous neurocognitive results from the trial.  The available therapy options were the techniques she and her team had taught me last year.

So, we spent a VERY productive hour talking about coping strategies for my particular symptoms and situations.

Might this be cosmic payback for volunteering for clinical studies?

Serendipity rocks.


brain 2 graphic

Weighing In (Reluctantly)

I hoped it wouldn’t happen.  But it did.

I stepped on the bathroom scale, and my weight was higher than “that number.”  You know, that number all women have in their heads (even if we say we don’t), the one I can’t possibly weigh because it absolutely, positively, undeniably means I’ve hit an unhealthy benchmark.

I’ve tried to be patient with myself.  I know much of the sixty pounds I’ve gained since my cancer diagnosis can be blamed on chemo-induced menopause, metabolic changes, reduced activity due to side effects of lung cancer treatment, a year of steroids, and edema caused by my current targeted therapy, crizotinib.  (Notice I’m not mentioning my fondness for chocolate—allow me the comfort of a small rationalization.)

Yet the scale kept creeping upward until it hit “that number” a week ago.  I suppose I subconsciously acknowledged the possibility when I donated all my large-sized clothes a couple of months ago, when I had to buy 2X jeans to be comfortable.

I had hoped I could ignore it, that I could just say I’m happy that I’m still alive three years after my cancer went metastatic, that I could settle for being “that number.”  But BMI doesn’t lie.  My every-8-week PET scans consistently show fatty liver.  I am not just overweight.  I am OBESE, and putting myself at risk for lots of nasty health conditions. This doesn’t make a whole lot of sense, given I’ve worked so hard to beat the lung cancer odds.  All my cancer doctors say it’s OK if I want to lose weight intentionally, in a reasonable manner.

Over a decade ago, I lost 50# and kept most of it off until I got cancer.  However, I’ve not had much success with moderate measures since my cancer diagnosis.  I’m going to have to be strict with myself, and keep it going for months.  I’m not looking forward to it, but that’s how it is.

So into the weight loss trenches I go.  Tossing out the tempting goodies and hiding the Halloween treats.  Aiming to eliminate simple carbohydrates.  Saying no to some foods I prepare for my family.  Tracking my fat, carbs and protein with the LoseIt app on my phone.  Tracking my steps and calories burned with my Fitbit band (good thing the two devices talk to each other).  Keeping my calorie deficit above 500 calories per day.  Exercising at a moderate pace over 30 minutes per day.

You’d think my body would appreciate this.  You’d think it would reward me by showing at least a little weight loss after the first few days of self-discipline.  Instead, I gained.  But I have a legitimate excuse, honest:

Fat piggies (2014-09-30)

Apparently my edema doesn’t agree with my new diet.  Sigh.

Beyond First Base

Yesterday I played softball.

Nothing formal — a group of friends played a leisurely, good-natured game on a seriously foreshortened backyard diamond after a meeting. It was practice for my 40th high school reunion in August, when 42 of us who grew up together are going to play softball in Tacoma’s Cheney Stadium–home of the Tacoma Rainiers (the Seattle Mariners’ AAA team).

This may not seem like a big deal to you. People play casual softball at family gatherings and summer picnics all the time. So what?

Well, it’s a milestone for me. You see, my body is different now. Yes, I’m two decades older and considerably softer than the last time I hefted a bat. But the real difference is not immediately visible: cancer treatment changed how my body performs.

I was a tomboy, relatively athletic for a girl growing up in the 60s. I could run and jump and throw, and I was pretty fast. As a kid I played sandlot ball with the boys because I “didn’t throw like a girl.” I played softball most every summer after I turned ten. I played the available intramural school sports and lettered in track in the first year it was open to girls. In college, I continued playing intramural sports and spent a year on the women’s club softball team. After graduation, I joined a Masters swim team and hiked with The Mountaineers. Later I ran 5Ks, rode my bike for miles, and played adult slow pitch for several years. I wasn’t truly a “jock,” but I knew how to move.  As I aged, I moved less, and would occasionally allow myself to get sedentary and out of shape, but in a bout of remorse I would get myself back into shape again. I was fit and healthy when I got diagnosed with lung cancer in 2011.

Now? Chemotherapy left me with peripheral neuropathy that occasionally interferes with walking and balance—my feet can’t sense the ground reliably. Radiation to my chest caused scarring and volume reduction in my lungs, so my oxygen level drops when I walk at a modest pace. Radiation to my right collarbone area hit a main nerve bundle, which causes some weakness in my right arm and a risk of damage if I lift too much weight with it. A year of steroids packed on the fat while decreasing my muscle tone. My current targeted therapy causes edema in my legs and hands that affects their movement and comfort. Some combination of side effects keeps my red blood cell count just below normal, which saps my stamina and ability to move quickly. I do exercise regularly on the treadmill and elliptical, but I can’t yet get the pace anywhere close to a brisk walk for more than 30 seconds without breathing fast and hard.

I’m not complaining, mind you–I’m happy to be alive and have a relatively normal life on my current targeted therapy. But I must face reality: the body I have now is not the same one I had Before Cancer.

That’s why that low-key softball game was such a revelation for me. The moment I put the glove on my left hand, my body recalled those days on the softball diamond. After some initial fumbles, I caught the ball easily when it was thrown to me. After a few gentle tosses, I could throw the ball to another and actually hit their glove. After couple of wimpy at-bats, I connected with the ball. And when I ran to first base, I moved faster than a walk. I’m not exactly sure what to call that gait (it wasn’t running, it wasn’t jogging, and it certainly wasn’t graceful), but I got to first base before the ball did, probably due to the good graces of the fielders—thanks, guys, I love you.  For about twenty minutes, I was a softball player again.

When the next batter hit the ball, I just barely made it to second base, but I was safe. I stood tall with both feet on the bag, reveling in my accomplishment as I gasped for air. And it occurred to me that maybe, just maybe, regular training could get me to second base in August without breathing quite so hard. I had been thinking I would only pitch during the game and let others do the batting and running. But maybe I COULD bat, and “run” too–especially since the game rules allow players up to five minutes to get to first base (note to future reunion attendees: Reunion Committee members get to write the rules).

After crossing home plate, I excused myself from the game and sat down to catch my breath. My friends played on. I resolved that I would be on that field in Cheney Stadium as long as my breath and body held out.

I WILL get beyond first base in August. I know there’s no stealing in softball, but to steal a James Bond phrase: there’s no point in living if you can’t feel alive.

20140721-224516-81916172.jpgSee? I DID make it to second base! (Credit: Sandi Allen Estep)

Any port in a scan

I’ve had a Bard power port in my upper left chest almost 30 months, since December 2011.  This consists of a small titanium reservoir with a layer of silicone under my skin, connected to a catheter than runs into a vein near my heart.  I originally had it implanted so chemo could be administered through the port, sparing my veins.  While I don’t need it right now to receive treatment–I take my targeted therapy as a pill–the port is accessed every month for my clinical trial blood draws, and every other month to administer contrast and the FDG tracer for my PET-CT scans.

Ports are really convenient.  I don’t have to get poked every month, I can shower and exercise with it (unlike my former PICC line), and after so many months, the scar from the implant surgery isn’t even noticeable.  All that’s visible are three tiny bumps on a slightly raised, faintly bluish area under the skin. The only accommodation it requires is a small pad between it and my seatbelt when driving.  I’ve heard of people keeping a port for several years.

Here’s the hitch.  My port has misbehaved fairly often since it was implanted. I am apparently very good at growing a fibrin sheath over my port’s catheter. When a sufficiently long fibrin sheath , similar to the stuff in blood clots, forms over the catheter, it’s impossible to draw blood–the suction from the blood draw pulls the loose flap of the sheath over the tip of the catheter and closes it off.  The problem seems to be worse if I’m dehydrated.

To keep the port accessible, it gets flushed with drano on average every 1.5 months. No, not Drano the household chemical.  Drano is my not-so-affectionate name for TPA (sometimes called Cathflo), a chemical which dissolves the fibrin sheath and clears the catheter. Typically, a small amount of TPA (just enough to fill the catheter but not go into the bloodstream) is injected and left in the catheter for about 30 minutes, then withdrawn.  Usually this clears the port, although sometimes I’ve had the stuff left in overnight to clear a particularly persistent blockage–one interventional radiology xray showed I had a sheath about two inches long at the tip of my catheter. Well, everybody needs a skillset.

The fibrin sheath also sucks up the FDG tracer used for PET scans, so I often have a very bright spot on my scan right at the tip of my catheter.  The radiologist can see the catheter in the associated CT scan, so he knows that hot spot is just the fibrin sheath, but sometimes I wonder if that spot could overshadow a tiny cancer nearby.

I’ve considered having the port removed surgically and just tolereating the monthly needle pokes for my labs and scans, but to be honest, my veins aren’t very cooperative nowadays either. I’m going to keep the port in as long as the drano can keep it functional.  I just plan to drink a few quarts of water the day before it’s used so I’m well hydrated, and show up early for lab work in case my port needs a dose of drano.

My monthly labs today required more than the usual amount of blood. However, my port worked perfectly! I felt like celebrating, so I ordered a grande soy mocha at the clinic’s coffee stand.

I forgot to say “half-decaf.”

I expect to get an amazing amount of work done this morning and early afternoon. Just don’t expect much from me after 3 PM.

#LCSM Chat Preview March 13 – Stress, Anxiety and Lung Cancer: How Do You Cope?

The post below is reblogged with permission from the LCSM website.

Patients and caregivers experience considerable stress and anxiety as a result of lung cancer diagnosis and treatment. How do you handle stress? Is it possible to prevent stress or is it ‘just a part of life’?  Some individuals handle stress and anxiety better than others. We want to explore this topic in more detail during this week’s #LCSM chat.

T1: What kinds of stress do lung cancer patients experience due to their cancer diagnosis or treatment?

 T2: What can healthcare providers do to help reduce stress for a lung cancer patient or caregiver?

 T3: What can patients and caregivers do to help reduce stress for themselves and each other?

Our guest for this chat will be Dr. Niki Barr, (@nikibarrphd), a Dallas, Texas, based psychotherapist who specializes in working with cancer patients and their families and teaches them how to “move through the continual challenges of cancer with emotional wellbeing”.

We know this is a very sensitive subject and we don’t expect anyone to share his or her most personal stories in such an open forum.  So we are offering an opportunity for you to submit questions to Dr. Barr in a confidential setting.  If you have a question you’d like answered or addressed during the chat, please email us at  Only those of us associated with #LCSM Chat will be privy to the contents of the email. We will then forward the questions to Dr. Barr for possible use during the chat. Please note that if we use your question, we won’t use your name. 

 Please join us Thursday, March 13, 7 CT/8 ET, for an in-depth conversation about stress and anxiety associated with a lung cancer diagnosis. 

Thoughts or questions? Email us directly at, leave a note on our blog or send us a direct message on Twitter, @lcsmchat.