Editing in the age of precision medicine

I want a plug-in for Siri on my iPhone that recognizes the names of all cancer drugs. I’m getting really tired of correcting “and tractor new” (entrectinib), “croissant live” (crizotinib), and “a lot of them” (lorlatinib). You should see what Siri gives me when my chemobrain is too tired pronounce the longer ones correctly! I still can’t wrap my tongue around the generic name for Tecentriq. 

Feel free to share your Siri/Cortana/Dragon medical transcription snafus in the comments.

Care Partner on Deck


Today hubby Gerry (my care partner) and I had a good start to our morning: we discussed how cancer affects relationships, then reviewed some time-critical household management chores over breakfast. Afterwards, he went out to paint the deck, and I prepared for some medical appointments and errands. Before I left, I poked my nose out the deck door to let him know I was leaving (carefully keeping both cats inside), then closed the door and departed.

After Gerry was through painting the deck, he was greatly surprised to discover his chemo-brained wife had locked the deck door from the inside (as was her routine) while he was outside (which was not routine).

He was alone on a freshly-painted deck at 11 am, ten to fifteen feet off the ground, knowing that I wouldn’t be home for another seven hours.  He tried to get the attention of some workmen two yards away so they could call me, but they couldn’t hear him over their lawnmower.

Ten minutes of staring at the earth motivated his engineering brain to develop a plan that (he hoped) wouldn’t contribute to our medical bills.  I cringed to hear the route my 77-year-old spouse chose to climb down to safety.  I won’t bore you with all the details, but he successfully dealt with the challenge so he could care for me another day.  This evening as the sun was setting, he graciously re-enacted the moment so I could take a picture.

I’m glad this didn’t result in a care partner role reversal.

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?


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.

Lessons Learned on a Yucatán Vacation

Tulum ruins and beach

  • Arriving at the Cancun airport requires tolerance for chaos.  On the other hand, it’s a great place to meet persuasive people who want to take you places.
  • Treat all red octagonal “ALTO” road signs as recommendations.
  • Hearing “Have Yourself a Merry Little Christmas” simultaneously with the pounding of ocean surf on fine sand creates serious cognitive dissonance.
  •  (air conditioning)+(incomplete door seal)+(tropical thunderstorm) = damp musty bedding
  • 92% relative humidity leaves fascinating streaks in excess sunscreen.
  • Uncontrolled experiments prove UBF50 swimwear protects you longer in the ocean than the waterproof sunscreen you put on your face.
  • Standing in the surf provides a feast of sensory delights — if you keep your mouth shut.
  • White sand beaches migrate into hotel rooms.
  • A Spanish-English dictionary app radically reduces time spent ordering and shopping for food.
  • When boiling tap water for drinking the next morning, the kitchen timer is your friend.
  • Tropical tours that depart early in the morning will reduce exposure to heat and cheap souvenirs.
  • Lisa Simpson becomes an alto in Spanish. That’s just wrong.
  • According to my blistered toes, those newly-rediscovered sandals I packed were lost for a reason.
  • Every breakfast buffet should feature chocolate sauce for omelets.
  • Departing from the Cancun airport requires running an upscale shopping gauntlet.
  • Ending a tropical vacation with an aerial view of the Northern Lights is pure awesomeness.

Image credit: Creative Commons License
Tulum Ruins and Beach by Janet Freeman-Daily is licensed under a Creative Commons Attribution-ShareAlike 4.0 International License.

Why I’m Behind on My Patient Advocacy Projects

Today is a relatively typical day.  I’ve been up for 2.5 hours.  I haven’t tackled any major projects yet. Why?

6:50–7:20 AM
Wake up a few minutes before the alarm, take anti-reflux pill, check email, get up, step on scale, be bummed (again) about my post-cancer-treatment weight gain, resolve to spend at least 30 minutes on the treadmill this afternoon, brush cats

7:20-8:20 AM
Get dressed, help with family breakfast, help son get ready for school, help hubby with shopping list, eat breakfast (had to wait an hour after taking anti-reflux pill), log food intake in LoseIt! (only 360 calories for breakfast–yay!), take cancer pills, check Twitter, pet cats

8:20-8:45 AM
Load dishwasher, have several writing ideas flood into my head while washing big pots, clean up mess I made on the counter while distracted by writing ideas, realize my chemobrain has forgotten all writing ideas, play with cats

8:45-9:20 AM
Check Facebook while drinking milk/coffee, look at pile of urgent family paperwork, decide I should start on a lung cancer advocacy article, go see what cat is playing with, write blog post instead (with feline oversight)

But the day is young, the cats are now napping, and coffee is kicking in.  I still have hope I shall actually accomplish something today.

Oh, look, the hummingbird feeder is empty …


My Orycon 2013 Science Panels

I’m going to Orycon 35, a science fiction convention held November 8-10, 2013, in Portland, Oregon. The programming folks have dreamed up some interesting science panels! I’m especially looking forward to the panel Jay Lake and I are doing on “Living with Late Stage Cancer,” which was very well received at the World Science Fiction Convention in San Antonio last August. If you’re attending Orycon, I hope you’ll attend one of my panels or find me in the halls (I’m not a night owl nowadays, so I’ll be scarce at parties).

The Science of Funding Science
Fri Nov 8 4:00pm-5:00pm (Alaska)
Are we missing out on gaining knowledge because of political correctness?

Living With Late Stage Cancer
Fri Nov 8 5:00pm-6:00pm (Alaska)
What it’s like to live from scan to scan, how we learn about different treatment options, coping when treatment fails, and answering questions from the audience.

Would you go to a doctor whose professors were witch doctors?
Sat Nov 9 10:00am-11:00am (Idaho)
What medicine has gotten right and wrong over the eons.

Do we all really need to know calculus?
Sat Nov 9 1:00pm-2:00pm (Alaska)
Is it really necessary for everyone to graduate from high school knowing physics? How much math do we really use on a daily basis?

I want to get my science on?
Sat Nov 9 4:00pm-5:00pm (Alaska)
Where does the lay person keep up with the latest developments

Ask Dr. Genius: Ad-Lib Answers to Audience Questions
Sat Nov 9 5:00pm-6:00pm (Alaska)
No, really, they’re real scientists, honest. Bring your science questions, and if they don’t have an answer they’ll make something up, and it might even be sort of right.

Cancer sucks-is there hope?
Sun Nov 10 11:00am-12:00pm (Alaska)
New insights into cancer provides glimmers of hope for victims and their families. How are new treatment options shaping up? How soon can we hope for a cure?

Midi-chlorians? Really?!
Sun Nov 10 1:00pm-2:00pm (Alaska)
Best and worst science in the movies.

A Blue Sky Cancer Cure

New treatments for cancer are being discovered at an ever increasing rate. Unfortunately, no single treatment can yet successfully treat all cancers that arise in the lungs, much less cancers that arise in all parts of the body. Cancer is not one disease, but many, featuring many types of cancer cells with different (and sometimes several) mutations in those cells, originating in various parts of the body with different cell structures, and threatening different bodily functions. A single tumor can even contain more than one type of cancer cell. There are as many different cancers as individuals who have cancer.

Here’s a science fiction concept:

Let’s invent a artificial intelligence device that enters the body via a single small injection, travels through the blood stream, locates all cancer cells, determines their characteristics, surveys them to determine how many are susceptible to drug A, drug B, surgery, radiation, or nutritional supports, then reports out to the doctor on the optimal treatment for this individual’s cancer.

Or, better yet, the device completes the cell inventory, instructs the immune system how to eliminate each type of cancer cell without harming healthy tissues, and reports out to the patient and their doctor on whatever assistance the immune system needs to do it. Maybe an alert shows up on the patient’s wristband or Google glass and reads, “Drink 0.25 liters of green tea with 3 ml lemon juice daily for 2 weeks, avoid shrimp, eat an oreo before bed, and get radiation treatment for your liver.”

Yeah, that should be easy.

Yes, Sheldon Cooper, that’s sarcastic.

Coping with Side Effects

I have a 20-pound lifting limitation on my right arm from radiation damage. My right brachial plexus — the nerve bundle that controls the right arm — took a full dose hit last summer.

I take an engineering approach to such limitations. I find myself looking at boxes I need to move and thinking, “If I take out these books, then the box is only 40 pounds, and if I divide that by two arms …”

I do not tell my radiation oncologist about these moments.

I hope he’s not reading my blog today.