Thursday, August 29, 2013

Chemo brain

I’d been thinking my next blog post would include some kind of derisive commentary about “chemo brain,” a term I’ve run across on cancer discussion boards and some of the cancer literature, where it is sometimes listed amidst the A-to-Z compendium of misery called chemotherapy side effects. 

Here’s what the Cancer Alliance for Research, Education and Survivorship says (it's one of those gimmicky acronyms, so naturally I discount their literature):

The phrase “chemo brain” has come to be used by cancer survivors to describe changes in memory, attention, concentration, and abilities to perform various mental tasks that are associated with receiving chemotherapy treatments for cancer.[i]   

I take roughly the same view of chemo brain that I take of “pregnancy brain,” “widow brain,” and all the other excuses humans devise for our failings.

With that caveat, I may invoke it  to explain my particular failing for today. But first, some context. I had my last adriamycin-cytoxan (AC) infusion last Wednesday. Either the side effects accumulated, or I let my emotional guard down and allowed myself to feel them more. I also bagged regular exercise to relieve the strain on my kids and others (needless to say, it is beginning to feel like an interminable wait until Sept. 6 when kindergarten starts).

And so from about Saturday to Tuesday I felt unwell. Fatigue, lightheadedness and a chemical smell coming from inside me made me want to crawl under a rock. Basically, I started being a total baby, and fantasized about skipping the four taxol infusions, which among other things can cause permanent neuropathy. I posted this on a cancer discussion board yesterday:

I finished AC last week, have felt kind of "off" since then. My dread of taxol increases with each day, to the point that I am performing google searches like, "stage 3 breast cancer outcomes without taxol." (My scant findings suggest skipping taxol does decrease survival by some 10-20 percent).

I'm about to call my oncologist for advice or maybe just some cheerleading. In the end I expect I'll do it--I'm the sole living parent of two kids I want to raise--but the emotional toll of poisoning myself is beginning to get to me. I have this deep inner feeling that the chemo gives you kind of a false sense of security--you win the battle but lose the war--as it ultimately weakens you...

Any thoughts or insights? Thanks.

I didn’t call my oncologist, and I haven’t checked the discussion board to see if anyone responded, and I’ll get over my little snit and do what I have to do. I don’t want to set off World War Three with this posting—I know there are those who claim to have healed themselves with broccoli sprouts and turmeric and cannabis oil. Despite my whining and my preference for broccoli over neurotoxins, I plan to stay the course. That doesn’t change my belief that in 100 years medical historians will view today’s chemotherapy as little better than bloodletting, but as they say of democracy, “It’s the worst system there is, but it’s better than all the rest.” 

So, on to today’s mishap. In short, I destroyed the front end of my sister-in-law’s car. No humans were injured. It was wholly and unquestionably my fault. And no, there was no cell phone involved (if you must know, there was a water bottle involved, but I don't want to talk about it). I was heading to the ferry to go to Swedish for my nadir counts, which is cancer-speak for a blood draw one week after chemotherapy, the low point in a two-week infusion cycle. To date my white blood counts in particular have been quite low at nadir (at which point I am instructed to act like someone with HIV or OCD), but they have rebounded to acceptable levels by the time the next infusion comes along.[ii]
Back to the story. The car was butt-ugly but driveable, and the people I rear-ended kindly took some photos and let me try to make the ferry. You should have seen the looks I got, a bald lady behind the wheel of a mangled Subaru on picture-perfect Bainbridge Island. It almost made me smile.

I parked my newly-minted junker, ran for the still-docked boat, and was turned away by one of the more mean-tempered ferry workers I’ve encountered. I allowed myself a couple tears by the gangplank as I watched the vessel depart.[iii] Then I called my doctor (read: nurse) to say I would miss my appointment, and convinced her to let me get my blood drawn at a Virginia Mason clinic I’d spotted on the island.

I drove to Modern Collision (as opposed to old-fashioned crashes?), where I left the car for an estimate with a guy named Tim who seemed to feel my pain. Suffice to say, if the car weren’t so new and so nice (i.e., if it were my car) it would be totaled. Contrary to my longtime understanding, my Juneau State Farm people told me when I called insurance doesn’t follow the driver, it follows the vehicle. Grrrr. Car insurance is a lose-lose gambit and I'd rather pay than raise someone else’s insurance premiums forevermore.

I left Tim and the wreck of a car and walked to the Virginia Mason clinic. More stares at the bald lady lurching along on the four-inch shoulder. The walk was about four miles and I needed it.

On the way I passed Temple Kol Shalom, which looks like a house and, I’m told, was someone’s house until she died and bequeathed it to the tribe. Rosh Hashana, the Jewish New Year, is next week, and I peeked into the empty house-cum-synogogue vaguely looking for a High Holidays schedule. The building’s origin reminded me of Temple Sukkat Shalom in Juneau, which was an abandoned childcare--complete with unused diapers and inexplicable crates of rotting eggs--when we "won" it by sealed bid ten years ago. I hope to make it to services next week, though it coincides with my taxol infusion.[iv]  

After getting my blood drawn, I went to a cafĂ© to indulge in a bowl of soup and got a pterodactyl-shaped cookie to bring back to Alder. I then availed myself of Bainbridge’s public transportation system, concluding that while the bus driver is nicer than the ferry loading guy, the bus schedule and route are vastly inferior.

I don’t have any great insight to draw from today’s misadventures, except to say that life ebbs and flows, and I’m repeatedly humbled and buffeted and baffled by the unexpected. Life is one long lesson in letting go... and as soon as I let go of the mistakes, I recall the many beautiful moments of this past week and a half, which I will try to highlight with photos. (Sadly I neglected to take pics of my dad or Emma, Libby and Steve, whose visits truly cheered us.)

One thing that helped right my sense of wrong today was doing a mitzvah[v] for a friend. After nearly three years of being on the receiving end of others’ generosity, being able to extend tangible help to someone else buoyed my spirits. I can understand why some who find themselves at the bottom rungs of society become embittered, even or especially toward those who offer aid. It saps a person of vitality and pride to perpetually take. I see how my own children respond when they feel they have been genuinely useful.[vi]  

Speaking of my children, I want to close this with a paean to Rosie and Alder, who showed me so much patience and gave each other so much love this past week. I told Rosie before she left Monday for her Big Bad Back-East Middle School Adventure that I’m proud of her.

She asked why. There were so many reasons but I said, for your resilience.

She asked what that means I said it’s like when a flower gets stepped on, and it pops up and blooms again. She didn’t say anything else. I hope she understood how much I admire her strength.

[i] The Mayo Clinic is more skeptical:

Chemo brain is a common term used by cancer survivors to describe thinking and memory problems that can occur after cancer treatment. Chemo brain can also be called chemo fog, chemotherapy-related cognitive impairment or cognitive dysfunction.

Though chemo brain is a widely used term, it's misleading. It's unlikely that chemotherapy is the sole cause of concentration and memory problems in cancer survivors.

Despite the many questions, it's clear that the memory problems commonly called chemo brain can be a frustrating and debilitating side effect of cancer and its treatment. More study is needed to understand this condition.

[ii] Today’s results: white blood count is low, but consistent with my other nadir counts. Red blood count is the lowest it’s been and according to my nurse would explain this week’s fatigue.   

[iii] While these were rare real tears, my eyes have been watery the past few weeks. This is another creepy chemo side effect, as explained by National Cancer Institute: “Sometimes, chemotherapy can seep out in your tears, which can cause your eyes to water more than usual.”

[iv] WHOOPS! I just checked on line and they want $250 per person for non-members for tickets for High Holidays services. Ha ha, and I thought it was like Juneau!  

[v] Usually translated from the Hebrew as “good deed;” also means commandment. I’m partial to the Hebrew as it sounds less puritanical than the English.  

[vi] Completely gratuitous footnote for cousin Cory.

... and now for some pics

A bagel and a snuggle at the park.
Loved visiting Heather and family in Bellingham

YUM! Our friend Antonio opened Cafe Rumba, a Peruvian sandwich place in Bellingham!

My high school friend Emma came all the way from Spain to snap this pic :) 

With my girl at Island Cool for frozen yogurt.

Playing at the beach. That's a dilapidated picnic table they upended.

Rosie and Alder spent an entire day building this fort.

Interior of said fort, which they slept in.
Self-portrait following today's debacle. 

Sunday, August 18, 2013

All that we don't know

I don’t spend a lot of time wondering how I got breast cancer. I basically believe we encounter a lot of non-point-source carcinogens throughout our lives, and cancer’s genesis in a person largely remains a medical mystery. We know that certain factors are correlated with an increased risk of breast cancer, including:

-sedentary lifestyle
-moderate alcohol consumption (3 drinks/week or more)
-early-onset menses
-family history/breast cancer gene
-diet high in animal fat
-not bearing children or bearing first child after age 30
-not breastfeeding
-advanced age

I don’t have a single one of these risk factors, and two years ago a life insurance company examined me inside and out and deemed me fit for the ultra-healthy rock-bottom rate (ha, fooled them!). But that doesn’t mean I couldn’t or shouldn’t have gotten cancer, just that it was statistically less likely. Overall, a woman’s lifetime risk of developing breast cancer is about 12 percent. For women with more risk factors, that risk increases; with fewer, the risk declines, but it's not zero for anyone.

When I first met with a surgeon at Swedish, he took my medical history and I could see his internal head-scratching (I really am ridiculously healthy apart from this little cancer thing)… until he took my social history and learned my husband died two years ago in an accident.

“No wonder you got cancer,” he said. “You’ve been under a lot of stress.”

I felt an immediate warmth toward him, an intuitive feeling that this was the right person to lop off my boob. He gets that we don’t understand everything, I thought, that there is a connection between our social-emotional situation and our bodies.  

I don’t necessarily think stress “caused” my cancer any more than Chernobyl did (the latter is one of my physician father’s theories--it's a long story). But I’m intrigued by the connection between our feelings and our health.

One of the most fascinating pieces of journalism I have ever read is Tara Parker-Pope’s “Is Marriage Good For Your Health?”, published in April 2010 in the New York Times Magazine.* The short answer is, generally yes, but the more interesting and complex part of the story is that researchers have begun to correlate physiological responses to marital interactions.

One study used a suction device to make eight tiny blisters on a married couple’s forearms; the couple was then asked to discuss something pleasant and, in a separate session, a topic designed to evoke conflict. Researchers measured the rate of healing after each session:   

“After the blistering sessions in which couples argued, their wounds took, on average, a full day longer to heal than after the sessions in which the couples discussed something pleasant. Among couples who exhibited especially high levels of hostility while bickering, the wounds took a full two days longer to heal than those of couples who had showed less animosity while fighting.”

Lots of other studies corroborate the narrative. A Swedish study of women who had heart attacks found that women who reported marital stress had three times the rate of repeat heart incidents. Another researcher “coded” the emotional tone of married couples’ interactions and compared it to the subjects’ coronary calcium scores, concluding, “the emotional tone of a marital fight turned out to be just as predictive of poor heart health as whether the individual smoked or had high cholesterol.”

At the time I read it, I resolved to be a better, more loving spouse. I was also deeply struck by the notion that stress and negative emotion can destroy our bodies, and that kindness and affection can help keep us healthy. And of course, I wish the medical world would focus more on humans and less on interventions and pharmaceuticals, but that's another story. 

Pics of the week...

I was surprised and so deeply moved to see this postcard from Juneau ... I love my friends and community so much. Thank you. (Photo by Steve Quinn)
My beautiful daughter also turns out to be a kickass runner. With my lovely friend Sonia in background. Love this pic! (Photo by Steve Quinn)

If I suck it up and drive a few hours, I can find something approaching the beauty of Alaska! Camping and hiking with KK and kids at Mt. Rainier was wonderful. (Photo by Guy On Trail Who Cut Off Our Legs)

Exploring the White River, near our campsite.

A visit with Brian and Hatcher capped the week. (Selfie)

Sunday, August 11, 2013


A friend who beat endstage cancer wrote that work and his colleagues pulled him out of the disorientation of his unexpected second life, and anchored him to his future. While I’m not facing the emotional confusion of stage 4 cancer, I’ve been thinking about what anchors me to life.

Clearly, my children are the unbreakable link. I distinctly recall, upon learning of John’s death, feeling that I was now the one remaining lung, the one kidney, and had to guard my life that much more carefully. I thought of our friend’s daughter, born with with only one functioning eye. She wears clear eyeglasses to protect her good eye. The risk calculus changes when there is no back-up, and I have made more conservative decisions than I otherwise might have, turning back in uncertain snow conditions, avoiding small planes. I have been keenly aware that widows have a high rate of death, especially in the early years, from disease, accidents, self-destructive behavior.

Wanting to stay alive for my children is a given. The question my friend’s email precipitated was, what anchors me to my past and future self? I am currently in a sort of limbo, without my usual home, work, community and even family as Rosie will be with my parents for the school year. (I had to laugh when I read a book given to me by and for young breast cancer patients in which I am advised to keep all routines as normal as possible for the children. What routines? What normal? Ha!)

The outdoors has become, at least for the past few years, my anchor. I miss the landscape of Juneau fiercely, the mountains, shorelines, beaches, the endless wonder. After John died, I was determined to continue to raise the kids active and close to nature. It took a lot of help from friends to get us skiing and camping and hiking when Alder was three and four, but we got up Mt. Jumbo, spent magical nights at John Muir cabin and Pt. Bridget and Eagle beach, hiked and biked and picnicked. This summer Rosie can carry weight and Alder can hike longer distances. More importantly, they have internalized the routine.

When you lose your co-parent, you lose that person who stands with you, doubling your strength when you proclaim, “This is the way things work in this family.” It’s harder to establish the family values, to hold to a vision, when you are one reed weathering the winds of two children, And so it means more to me perhaps than it should, to be with my family in the mountains and wilderness. To me, it's our anchor to our family identity, to our past and our future.

As for cancer, it was a good week. I did three relatively hard runs Monday, Tuesday and Wednesday, and chemo was no match for me Wednesday afternoon. My white blood counts were high and my energy didn’t plummet, cementing my conviction that exercise is the elixir of life. Alder and I are heading to Mt. Rainier shortly for two nights of camping and hiking with KK, one of my earliest Juneau friends, now living with her family in northern Idaho. 

Have a great week, friends...

My mom, Rosie, Katie and Alder, who has learned to loathe the camera...
Wednesday chemo. Oh, thank you for the poison Kool-aid!
My kids, friends from Juneau, my niece and nephew! An impromptu post-chemo party definitely helped allay any side effects. 
Rosie and Portia at the top of Mt. Jumbo yesterday. Proud of my girl, it's as good as doing it myself. (Yes, she is getting around this summer!)

Tuesday, August 6, 2013

Addendum: water rocketry

I wanted to add pictures to the last post but had technical difficulties. Now partially resolved. Instead of a picture, however, I offer a moment (31 seconds, actually) of levity. Tonight we finally launched the water rocket Alder got in December at Corrine and Jamie's gift swap (thank you, Rorie, MK and Susan!).

Monday, August 5, 2013

Death, life and trauma

I just read the number-two-most emailed article in the New York Times, “The Trauma of Being Alive,” by psychiatrist Mark Epstein. He argues that grief and trauma are real and enduring, and we do ourselves a disservice by suppressing our emotions. In his words: 

“In resisting trauma and in defending ourselves from feeling its full impact, we deprive ourselves of its truth. As a therapist, I can testify to how difficult it can be to acknowledge one’s distress and to admit one’s vulnerability. My mother’s knee-jerk reaction, ‘Shouldn’t I be over this by now?’ is very common. There is a rush to normal in many of us that closes us off, not only to the depth of our own suffering but also, as a consequence, to the suffering of others.”  

His words are a relief, a sort of balm in themselves, offering the soothing reassurance that it’s ok to not be ok. The trauma of John’s sudden death, followed a year later by Ali’s sudden death, followed lately by the shock of breast cancer, has shaken my sense of security and my sense of self. I resist the PTSD label and remain outwardly blase about risk in general, but the truth is I harbor an insidious conviction that more disaster awaits me.

At the same time, I'm leery of psychiatrists and their ilk, who tend to pathologize everything and everyone (job security, right?). When I check my young widow websites and the breast cancer sites there is so much “woe is me,” so much lament and self-absorption. Usually it brings me down, so I’ve learned to avoid them unless I have a specific question. I’m impressed that strangers offer each other heartfelt compassion and support on these sites, but I wonder how productive it is. People many years out from their trauma seem mired in their own suffering.  

Epstein tells us we do better if we “lean into the trauma,” but gives no real evidence for this. And what does “leaning into trauma” mean, exactly? More crying? More therapy? Neither of those seems to help me as much as running, laughing, and friendship do.

 “Fake it til you make it” is an alternative strategy, the stoic approach. It has its downsides—obviously, you can’t live a lie—but if you lean into optimism, aren’t you more likely to fall into the positive side?  

I don’t know the answers. As facebook would say, “It’s complicated.”

On a lighter note, my head is now lighter. Santino buzzed my hair off yesterday. My stubble-riddled bright-white scalp is one ugly sight. And it’s not one you will be seeing pictures of any time soon!

With thanks for your love and support,