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.
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.
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.
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.
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:
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.
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.
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.
Practices that have helped my employment situation:
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.
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.
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.
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.
I wish you, or your coworkers, or your spouse or relative, a supportive and meaningful path back to work.
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.
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.
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.
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.
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.
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.
The best, sauciest, crab cakes EVER. With wine and a sweet lake breeze.
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.
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.
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.)
To. Hell. With. That.
I am starting a new diet called the Ice Cream and F&*k It Diet.
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:
There are no essential principles.
Eat what you want.
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.
We will all die. (Don’t say this at parties.)
Is there syrup on it? Frosting? Fat or sugar? You know what to do.
I know I know– “not every day.” Of course.
Popcorn with butter first, then the seats. Bonus if you scarf it before the trailers end.
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.
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.