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

 

 

 

These are the (Detached, Strange) Voyages.

The CT and bone scans came back negative for metastases.

I should feel elated, grateful, should be jumping for maniacal, life-affirming joy.

But I’m not. I feel like: whatever. Meh. As if in a Star Trek episode, my shields are up. Odd, huh? The closest description I can come to this feeling is that of an abused lover. Cancer is the abuser. He (and it could just as well be she) punches me out with a diagnosis: stage 3, triple negative, lymph node involvement. I am injured, and then I grieve, and slowly begin healing. Cancer gets quiet. Goes into remission. Behaves, offers hope.

background beautiful blossom calm waters
For a brief moment, you could stand here. You might feel relief.

And then he returns with another punch: the tumor’s back. And then another: surgery. And then another: high likelihood of recurrence. And each time my ability to emotionally engage with the process is reduced. I’m not talking about depression. I’m talking about a step by step process of detachment from a body that no longer feels trustworthy. All news is now to be listened to and taken like a memo, and I’ll consider only the action items. And the abusive lover’s apologies – cancer’s temporary respites from terror – are not to be believed.

animal animal portrait animal world annoyed
Back again, little fucker? Seriously? Don’t even.

Surgery is now possible and my doctors are planning to remove the tumor. Two ribs will be excised, and permanent nerve damage to my arm is likely. The tumor has grown, even from last month. I picture it, sometimes ask it what it wants, and all I see is a little dark factory that has programmed itself to proliferate. It’s like V’Ger from the original Star Trek. A satellite that was originally built to gather information, it eventually became self-aware, and then colossally destructive. I think the cancer cells are a little bit like that: they are cells that got programmed incorrectly, and now are replicating and replicating in a lethal effort to survive.

Please stop, I want to say.

Take your efforts elsewhere.

In the meantime, one day at a time. We wait now for the surgery date and plan for four weeks of recovery. Maybe I can have my ribs from the surgery.

Maybe I can turn them into salad spoons.

food on table
That would be strange. And yet: 

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:

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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.

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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.

 

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And here, with my daughter, is mine.

Love out.

 

What We Talk About When We Talk About Work. And Cancer.

Should I work during treatment?

Can I go on disability?

What about health insurance? My finances?

How do I talk about my cancer? Should I?

 These are just some of the questions that many of us, myself included, consider when dealing with a cancer diagnosis. If you were diagnosed before retirement, questions about work, your work life, finances and benefits may weigh heavily. This link to the American Cancer Society answers some of those questions, but the bottom line is this: It’s personal. And there’s no one right way to go.

nature red forest leaves
Forward, backwards, or off the beaten path? Part time or full time? Or maybe a walk in the woods to think it through.

I’ve been incredibly fortunate. Lottery, pot of gold, best-ever fortunate. And I’m saying this here not to boast, but to hopefully help those of you whose co-workers might not be responsive, whose superiors might not understand, or whose work conditions might not support your needs. Let me tell you why I’ve been so lucky, and grateful:

  1. Supportive, sisterhood-level colleagues. For confidentiality, I won’t describe the details of my job, but my coworkers are incredibly supportive. Sometimes this means checking in, sometimes it means silence, but it is always surrounded by kindness. I wish I could send them all to Hawaii with mai tais and a warm quiet sandy beach. They are, each to each, a hallelujah chorus. I love them.
  2. Supportive boss. My higher-ups have pretty much said, ”We’ll have a job for you whenever you come back.” I can’t tell you how much this has meant. Even though my prognosis is currently in flux and unknown, to know that this one certainty exists acts as one small light in the darkness.
  3. Work I love. I find it challenging, engaging, meaningful, and it stretches my capabilities as a human being. To be in an environment where we all are learning and practicing and supporting each others’ growth is a privilege, and one that I hope to return to.
two person in formal attire doing shakehands
This is a picture of two white men shaking hands. WordPress needs more diverse work photos. 

Practices that have helped my employment situation:

  1. Transparency. But, caveat emptor: your diagnosis impacts coworkers, and it’s important to be judicious and mindful in how it’s communicated. Others may be struggling with ill loved ones, or in grief, or not wanting to deal – and that is to be respected. Everyone is in a different place. I have deep trust in my coworkers and so communication and transparency were not an issue, but your work place may be different. If your situation is hostile or not supportive, I am truly sorry. This might be the time to look at your legal rights, or call your local American Cancer Society for guidance.
  2. Assistance with disability and other employment paperwork. Your benefits and/or HR department should direct you, and sometimes other coworkers have excellent insights into sick leave benefits, disability, and/or other options.
  3. Flexibility. The ability to return to work part time after my first treatment cycle ended was incredibly helpful. We know that fatigue, depression, anxiety, and post-treatment pain can come suddenly, and that our new, post-treatment bodies need time to heal. Part-time work can act as a bridge to help you return to full-time employment.
  4. Communication. Letting your superiors know what’s going on and providing even tentative timelines is important. Others may be carrying a larger workload in your stead, and your coworkers need to plan and organize their work lives. Check in. Keep your employer in the loop.

Work is personal, and carries so much weight. It impacts how we live and our finances. And with a cancer diagnosis, I think it symbolizes our ability to return back to the river of normal life. In that sense, work is powerful. It is a step back into the continuum of living.

green grass field and mountain
Beautiful, but not my backyard. You don’t want to see my backyard.

I wish you, or your coworkers, or your spouse or relative, a supportive and meaningful path back to work.

 

The Ice Cream and F*%k it Diet.

I’ve had it with cruciferous vegetables.

I’m sick of brussels sprouts, cabbage, broccoli, watercress, and other vegetables like artichokes and garlic and peppers and beets. I’m tired of walking the Green Mile for produce and minding each health-conscious bite.

close up photography of cat
One more cup of green tea and “kitty” will puke.

When you are not a cancer patient (and I am impatient, wanting this to be over, which perhaps it never will be), food is an ally, a benevolent companion. You buy and eat, and cook and eat, in a set of light, repeated gestures that do not cause much pause.

cat paws in shallow focus photography
These are actual paws.

Cancer shifts the scales.  Food becomes more fraught. It becomes more heavily weighted with meaning, assessed on a scale of its antioxidant values and not of taste or flavor. I have found myself looking up food names and “cancer” many times during the course of a day in order to reassure myself that my meal is fighting free radicals.  Searching for “maitake mushroom” and “cancer,” for example, brings up a list of products, research, and formidably-medical sounding articles that paves the way for each reassuring bite. I have felt, at times, a zealous worshipper at the secular altar called “health.” Too much.  A person can become obsessive or worse, self-righteous.

Certain foods can become “good.” Some “bad.” And these judgements can extend to ourselves. You are a “good eater.” (Healthy, weight-conscious, working hard to resist with produce.) You are a “bad eater.” (Steak, chips, soda, sugar. Meh. Pass the beer.)

Well.

To. Hell. With. That.

I am starting a new diet called the Ice Cream and F&*k It Diet.

person holding ice cream with cone
Hold that mother high.

Because, sisters and brothers, you’ve lost enough. You’ve worried enough. You’ve googled and read enough. Stayed up late through the night, scrolled through your phone, lost a body part or tissue, reeled through waves of nausea, stayed in while your friends played, lost a sure future, and wondered-what-you-did-to-cause-it enough. You know what? Here’s the answer: We don’t know. People who jog and do yoga and eat vegan get cancer. People who smoke and drink live long lives. This isn’t an excuse to chuck all effort, but it’s a way to give yourself a break.

In that spirit, which is the spirit of  We Don’t Know, So Go Ahead and Live, here are the essential principles of the Ice Cream and F*%k it Diet:

  1. There are no essential principles.
  2. Eat what you want.
  3. Cruciferous (which means, by the way, “of the cross,” as in crucifix, a cross to bear) vegetables are great, but they will not save you.
  4. Because:
  5. We will all die. (Don’t say this at parties.)
  6. Is there syrup on it? Frosting? Fat or sugar? You know what to do.
  7. I know I know– “not every day.” Of course.
  8. Popcorn with butter first, then the seats. Bonus if you scarf it before the trailers end.
  9. I am so tired of caution.
  10. What is the food for danger? The Carolina Reaper? The Naga Viper Pepper?
  11. Read Derek Walcott’s poem.

And do what he says, and live. With culinary and sensual abandon, in whatever forms those take.

I wish you a great feast.

 

 

 

 

Bodega Bay, CA

We love the sea.

My husband, daughter and I spent a few days at the coast just getting quiet, reading, drinking coffee, walking and listening. The landscape, it is not especially glamorous or light-filled, but we like it that way. I like the quiet serenity of it.

 

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The subtlety of the colors and layers reminds me to look more deeply.

Not everything has to be bright, or vivid. Not everything needs to move.

And yet it does.

 

 

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?