Three pavement dives make a trend

falling

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)

WOMAN-RAISING-HAND

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.