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.

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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.

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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.

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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.

 

There is Only One Door

We are having to weigh several treatment options, none of which are sure, none of which are pain or suffering-free. None guarantee cure or long life or certainty. All carry risks and further side effects, some debilitating, some permanent.

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Hours or days may go by. 

It is a matter of degree, of where the pendulum stops.

My husband and I talk. I look things up, I contact my doctors, I look at websites, I sit with coffee, we talk some more, and think. Project the future. What ifs? What if this works, this doesn’t? Do we have a window for this now that we won’t later for that? And what if that (treatment) turns out to be unnecessary, a mistake given the later option of this?

My old life is becoming a farther harbor, seen from a boat at night.

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It is/was such a beautiful city. 

My heart goes out to all the other people with this terrible disease, who have to process the litany of grueling options, uncertainties, and unknowns. And it strikes me that much of cancer is in-betweenness: processing information, treatment, physical therapy, medication, relearning movement, resting when the pain comes and goes, appointments – waiting for a resolution that will not come. That may not ever come. Preparing for an uncertainty that can, and will, continue.

I wish you strength and courage.

 

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.

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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.
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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.

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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.

 

In Which the Lens Breaks.

Bad news.

The chemotherapy didn’t work, and the tumor has grown. Nearly doubled in size. “Suspect lesions” are on my lungs, three of them, and indicate possible metastases. We are meeting with the doctor on Monday to discuss next steps.

The whole goal of this last round of chemotherapy was to shrink the tumor in order to make it operable. But it’s not. And the aggressive regimen,  Taxotere and Xeloda, didn’t work. This tumor, it is wily. It is a fist that wants to gain strength, knock me out.

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Fuck you back, cancer. Fuck to the fuck to the fuckety fuck you. 

I am trying to breathe. Trying not to weep. Trying to go through the motions of going through the day, coffee and dishes and laundry and errands – but it’s all clouded with: How much time do I have left? And grief. An undertow of grief that wipes my vision, causes my muscles to fail. When I think of my daughter, I cannot – cannot –

We haven’t yet told her. We’re waiting for a plan.

Already I’m feeling the physical losses: nerve pressure and pain under my arm, fatigue, an inability to stand for more than 10 minutes at a time. I know, from friends who’ve passed, how quickly things can go. One month, six weeks, six months, a year? And how much pain will this body have to endure?

I am trying to keep calm. Trying to make coffee. Trying to think of tomorrow’s dinner, the next home project, the next writing piece.

How much time left?

Fracture. Breaking glass.

Shards and shards and shards.

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.

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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.

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Solo Tahoe Hike. Bucket List. File Under “Not Dead Yet.”

I’ve always wanted to hike the Lake Tahoe mountain range.  It’s been a dream of mine to hike the Tahoe Rim Trail. According to the link, it’s considered one of the most scenic hikes in the world, and I can see why. Starting from the Tahoe Meadows Trailhead, the valley views are incredible.

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Altitude: 8, 740 feet.

I went alone. I was a little nervous – not about safety, but more about my health. I’ve had a large number of lymph nodes removed due to cancer metastases, and one of the side effects of this (not mentioned in the “happy pink” and “you’re a survivor” positivity ticker tape) is the lifelong risk of permanent arm swelling, cellulitis, risk of cuts, bites, and possibly permanent manual massage and pumping and physical therapy that comes with lymphedema. After my breast cancer surgery, the list of “things to avoid to prevent lymphedema” included: high altitudes, vigorous exercise, pet scratches, dehydration, weight lifting, vigorous and regular movement of the right arm, saunas and hot tubs, and so on. The list was a devastating litany of losses.

The physical therapist told me, “You might want to think of getting rid of your cat. Also, avoid air travel.” More than the cancer, I felt like my life had been taken away. How much more of my body would be carved, how much more to lose? I went home and wept. I hated it all – the cancer, the lost tissue, the loss of activities I loved. Life.

But, as we must do to continue living, I regrouped. Such gratitude to my support group, to include online ladies, a hallelujah chorus of friends, family, writing group, community, my husband and daughter and wonderful colleagues. This pool of support buoyed me, kept me grounded, prompted (and prompts) me to get back out and live.

And so this hike, 6 miles in high thin air, was more than walking. It was a kind of milestone, a kind of fuck you to the limitations of this disease. It’s not the 10 miler I’d hoped, or the full 15-day outback trek I’d dreamed of, but it’s a start. A small victory.

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And afterwards?

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The best, sauciest, crab cakes EVER. With wine and a sweet lake breeze.

Cheers.