Cancer Super Achievers: An Unproductive Lament

The world of cancer is peppered with super achievers. For some people, a cancer diagnosis propels them into a flurry of mountain treks, book deals, year-long walkabouts, profitable blogs, the starting of foundations. They do cleansing diets, quit or change their jobs, marry or get divorced, adopt children, remodel their homes. The wind machines of productivity blow their long, flowing (metaphorical) hair into the photographer’s lens, and the world, it celebrates their proliferating efforts.

woman wearing gray shirt and black overalls on boat
I wish I had her hair. 

“You don’t have long to live,” cancer says. It is, to be sure, a wake up call.

Respect. And it’s no one’s business how we react to cancer or any disease. The music of coping has a wide, wide range.

And yet I can’t help feeling pressured, at times, to do. I realize this is partly cultural. Americans value productivity, work, achievement, productive leisure (think high-end tents, travel, what did you do this weekend?). Even cancer is no ticket out of this race. Even the cancer patient (and the chronically ill in general) must justify their rest, their healing, their not-productive-sitting-reading-resting being. We don’t honor enough that healing is an active, regenerative process in which the body’s reserves must be deeply tapped. This causes fatigue. It can cause grief. We don’t honor rest. We don’t honor the trauma that cancer heaps on the mind and the body, and the concentric circles it then echoes into family, friends, community.

In this vein, I want to say that I haven’t been terribly productive. This has its pluses, its minuses. Working outside the home is a way of staying engaged with the world, is a way of having another thread of meaning woven into your life. And I have been away from a job I love for nearly seven months.  Working inside the home is a series of tasks that are constantly being undone, and therefore there’s little to show for it.  And I haven’t written a book, haven’t remodeled a room. Kitchen cabinets remain in disarray. The wet mop is still outside, the linoleum has holes.

Not productive.

I ask myself: What should I be doing, exactly? Should I be sorting through the old books, cleaning the garage? Another Costco run? More vigorous meditation, reading professional manuals? Piles of poem and other drafts stack each household table, as do my husband’s paints, brushes, figures. I wander and sit. I read, then rest. I cook a little, grocery shop. Then rest some more. I spend 2-3 hours a day doing physical therapy exercises. “What do you do all day?” someone asked. Cue maniacal laughter.

Not productive.

I once scrolled past a Twitter post that read something like, “Click to see how breast cancer inspired this woman to climb Mt. Everest!” I replied, semi-snarkily, “Breast cancer made me cranky and tired.” Oh, the dark humor of it. But it was the truth.

And you know what?

It was the most productive thing I did that day.

 

How do you cope with your body’s need to heal? Its unpredictability, the need for rest?

 

What We Carry

Hello again.

It’s been three weeks since surgery. I’ve been really, really wiped out. I’ve spent most days in bed or on the sofa, wandering the house, doing this or that odd chore, but mostly resting. My oncologist said I probably won’t even start to feel recovered until four weeks, and not “normal” until eight weeks out. This, to my need-to-be-productive-self, helps me feel better.  Two drainage tubes have made it impossible to sleep in any position except my back, and my right arm is slowly gaining range of motion back. Today’s the first day I feel like I can type for any length, and this, too, gives me hope.

green leafed plant on sand
That small flower is finding its way. 

If you are a regular reader of this blog, thank you for your patience.

This surgery sent me into a tailspin of depression. The truth about general anesthesia is that it is a temporary coma, and can have major effects on mood. Post-operative depression is not something I anticipated, but immediately after surgery I fell into a well of despair that had me near some monster edge. My husband and daughter were bewildered and concerned. Combined with the pain medications and the lack of mobility and drain tubes and magnitude of this surgery and this diagnosis, I was in a very dark place. I would walk into the kitchen and just stand, bearing wave after wave of utter, complete grief and despair. I’m not sure I’m describing the physical aspects of the sadness enough – my body felt physically dropped into some hopeless, dark well and I was flailing for air.  Dear friends and colleagues reached out, and let me tell you every text, every visit was a life buoy. There is a kind of salvation on this Earth, and it is called Kindness. And each day is one inch better. That is my measure. One inch, or one half inch. That is what this body can do right now.

shallow focus photography of green caterpillar on green leaf
You will not fall prey, little one.

 

The surgeons (thoracic and plastic) took out one rib. This was the rib that was borrowed from Adam, and he can have it back.

What’s next?

In a nutshell: wait, see, hope. Checkups every three months. Periodic scans. Because this is a local recurrence of TNBC, there’s no hormone treatment I can take. There’s no other preventative chemotherapy available. The new immunotherapy treatments are for metastatic disease, meaning disease that’s spread to the bones, or organs, or brain, and consequently they don’t apply. I could search for a clinical trial, but my case is not typical, and I don’t have the cognitive bandwidth to do much more than read magazines and watch TV. I’m in remission now, and yet the risk for recurrence is high, over 50%, and happens within 1-2 years.

We are in uncharted territory, said my doctor, gently. We sat in silence.

What can I do? This is the part where I look down into the valley and decide. Despair or hope? Another step up the mountain, or quit?

I look around and down and see the faces of my family, friends, coworkers and a world of sisters and brothers and I draw on the kindness that is there. I am so grateful. To extend the metaphor, the air gets thinner as treatment continues. The body wears out. A person has to make more frequent stops and gather strength. But you, readers, friends, family, cancer sisters and brothers, are my oxygen tank.

Breathe.

photo of mountains
There is still so much to see

 

 

 

One Rib Part Removed, Not For Adam

Surgery was on 10/2 and this past week has been a daze of pain medications, rest, and not much else. In the process of navigating this week, dear friends have brought meals, checked in, driven, and then I lost my phone and got appointment dates mixed up and felt sheepish all around. Apologies.

Here’s what we know: the surgeon thinks he got all of the tumor, and part of one rib was removed. Part of my latissmus dorsi muscle was also removed, and I’m going to have permanent disability in my right arm. I already feel some numbness, some difficulty moving. Thankfully I can type and write with some small difficulty but it can be done. My lung capacity is slightly impacted but this should change with physical therapy. Walking 1/4 mile tires me out, but dad gum I’m walking the block. I’m adding a few more steps each day. Slow but sure.

Triple negative breast cancer has a high risk of recurrence. That is a fact I must face squarely. But we’re hoping this surgery gave us some extra time – months, years if we’re lucky.

In the meantime it’s back to enjoying the basics: coffee, my fam, my cat, wonderful friends, colleagues, community, this beautiful Bay Area autumn weather, and healing slowly. Sitting in the sun. Reading good books. Naps. Letting the body heal itself. I must learn to be kind with my currently limited capacity, and rest when the body asks for it. I’m at about 35% of “normal” right now, and even getting clothes on requires a level of contortion and new sensations that cause pause.

white and gray cat paw
My right arm is a large, dangling comma. Sans fur. 

Sadness comes and goes. Yet another body part carved up, yet another loss. This is the truth of chronic illness – each shift and change is a new normal.  I try to remind myself that I can walk, talk, see, dance, eat, drink, laugh – most of all the things from before. But I also refuse to pressure myself, or anyone, with the tyranny of positive thinking, which often does not allow space for grief. Grief is as necessary as breathing, creates space for truth and healing, and must not be hurried.

I honor it, as much as I honor joy.

moon and stars

Magic Hour

We recently had a company called Magic Hour provide a free photo shoot for our family. They do this work pro bono for people with cancer, and we are so grateful. The photographer who worked with us, Melissa of Icarian Photography, was wonderful. She made us feel instantly at ease. I have been in the mind of legacy lately, and what could be left for my daughter and husband, and so it was such a relief and gift to have this offered.

Here are a few shots:

Rauhala-Herskovich-34

I like to read. A lot. On days when fatigue wears me down, I rest here. Sometimes I close my eyes and the same soft breeze that brushes the Golden Gate wafts through those curtains. I remember the outside world, and I remember the long wide ocean that moves not far from me.

Rauhala-Herskovich-18

Our messy garden. The cherry tomatoes have gone bonkers. The colors and bees and flowers cheer me up. Sometimes the best living is not organized. In disarray you might find your heart.

 

Rauhala-Herskovich-40

And here, with my daughter, is mine.

Love out.

 

I Bunt, I Trip, I Get Back Up.

It’s been a rough patch.

This last chemotherapy treatment, the 6th out of 6 cycles of Taxotere/Xeloda, has caused fevers, flu-like bone aches, and general misery. I’ve been in and out of bed for days in a haze of napping and trancelike kitchen/bathroom visits. The pain in my bones and shoulder became so bad that the oncology nurse prescribed Norco, a known opioid. I plan to be judicious and careful about its use.

Today is the first day in over a week that I’ve been able to go outside and walk more than a mile anywhere, and just sitting in the sun gave such relief. Looking at the yard, at the tufts of clouds, at the sunlight and tomatoes and lobelia draping over the planter boxes, I couldn’t help but marvel at the gift of health. Of energy returning. Of life.

person standing on sunflower field
FYI: I am not this woman. This is not my yard. I don’t wear white cotton dusters and I currently have no hair. But I do love sunflowers. And living.

I’m very fortunate that I did not get HFS, or hand-foot syndrome, a potentially debilitating side-effect that causes deep peeling/cuts in hands and feet. I’m fortunate that neuropathy has never been more than a few short tingles in my toes. But this last treatment knocked me out, and the fevers  – which fluctuated between 99 and 101 for about two days – and deep bone pain, and dizziness, and fatigue, were hell. It was worse than the worst flu.

What makes these episodes so difficult is their unpredictability. My fever came on an hour after waking up. After a nap I felt slightly better, until nausea and severe nerve pain knocked me back down. This went on for a few days. But it is precisely this roller coaster of side effects and unknowns that has made it difficult for me to return to work, or to commit to activities, or coffee, or dinners,  for any consistent time period. And it’s frustrating, tiresome, and it takes a toll on our whole family.

So, I’m hoping the worst – the chemotherapy nadir – has passed, and that soon white and red and stem cells will begin reproducing quickly again. I’m hoping this treatment has sucker-punched the tumor into oblivion, or at least into operability, and that the word “cure” might be bandied about again. I’m hoping my health will begin its slow crawl back. The odds are smaller this time, but I take my cue from the Yankee Clipper.

Play ball.

two female in baseball gears in stadium ready to catch and swing baseball

 

 

Taxotere and Xeloda

I am recovering from my fourth cycle of Xeloda and Taxotere, and I’d like to talk about how things are going. This treatment plan is for a recurrence, a 5 cm tumor that showed up during my annual MRI in March of this year. The goal is to shrink this tumor in order to make it operable, and therefore remove it.

I receive Taxotere every three weeks, and, on the same day as the infusion, begin a two-week cycle of 4000 mg of Xeloda. Four pills in the morning, four at night.

As of today my eyes water constantly. My nose is an incessantly dripping faucet, causing me to wipe, drip, wipe, drip, and because of this I’ve become wary of cooking and paperwork. Restless legs make it difficult to fall asleep, leading to a cycle of fatigue and sleeping until 9 or 10 AM that has thrown my summer for a loop.

bed bedroom blanket clean
This is not my bed. Artfully decaying foliage plays no role in my sense of decor.

So far, I feel fortunate that I haven’t experienced Hand/Foot Syndrome, a common and difficult side effect that causes peeling, itching, and can cause the permanent removal of fingerprints. And so far, I have no neuropathy. Knock wood.

But the fatigue. I’m writing this to share with others in treatment, other survivors – you will know what I mean when I talk about the crash, the far, low tide that comes with waking and feeling as if some deep core of bones and blood has been removed, and all that remains is an easily-toppled monument of skin. You become a heap of unmoving muscle, resolved only to rest. Rest and sleep are what the body orders. Mail opening or reading an email becomes an orbit of language that revolves but does not land – I can’t wrap my head around any cognitively demanding tasks after infusions. Give me TV, give me easy magazines. Youtube cat videos and naps.

close up portrait of cat yawning
The National Enquirer!

I find myself cueing up bingeworthy shows: old episodes of The Office, Handmaid’s Tale, Sherlock Holmes, and soon the latest Orange is the New Black. Some of these I watch at night when my husband and daughter sleep. Others I fall asleep to. Dr. Phil is another favorite. After all my losses, I can at least assure myself that I am not duped by internet Don Juans, or that no one in my family has been kidnapped by a cult.

The fatigue, it comes and goes. It is unpredictable and when it comes it must be honored. This is one of the many lessons of cancer: Listen to your body. It is its own untameable animal that requires tending, and if you listen it will lead you well.

How do you deal with fatigue? What are some ways you pass the time when your body says Stay?