PT: Physical Therapy, Post-op Torture, or Potential Travel? Oh, and Lymphedema.

After the surgery, the work.

In order to remove all the cancer, the surgeon excised a rib and a “significant portion” of back muscle. But time has gone on.  The drains are out, the surgical tape is gone, and now it’s scars and stretches and reaches and grit. Argh!

blue and red superman print tank top shirt
DON’T EVEN THINK ABOUT EATING THAT BRIOCHE. 

Step 1:  Exercises for the lymphedema I’ve developed in my right arm due to the surgery. For those not familiar with it, lymphedema is a temporary or permanent swelling of the extremities (usually arm or leg) due to lymph node damage. Lymph node removal, often a part of later stage cancer surgeries, can result in a backup of fluid into the arm or area where the nodes were removed. And it’s what’s happened to me. My right arm swells and ebbs in accordance with my movement and idleness, and it’s now another side effect of breast cancer that I must – grudgingly – face. Next week’s agenda involves appointments for arm measurements and compression sleeve fitting. And if I must – and I must – get a compression sleeve, I’m going to get one that screams “DIRT BIKE SLAYER,” or one with dangerous-looking tattoos. Because sisters and brothers: Badassery is not solely for the able.

woman with black and red flower tattoo standing behind blue flowers
My compression sleeve will have scrollwork, and it will emerge from an unfriendly and barlight-lit field of hydrangeas. 

Step 2: Stretches. Oh, what fresh hell is this? My right arm currently swings like a dangling banjo. It is awkward, bumps around, is unsure of what gross movement and gesture it needs in order to return to the chorus. And so the kind physical therapists at my HMO have embarked gleefully (and oh how they laugh and type and so cheerfully cheer the grouchy patient on),  on a program to challenge my movements. I stretch with bands, exercise balls, a pulley, and a cane. I reach up the wall to expand the chest and shoulder. I lay down and pull and reach and groan, soaking up hours of each day in order to knead and raise the bread of my tendons. Hello, serratus anterior. Hello, pectoralis minor. 

(Pulley drop.)

Have a nice day.

closeup photo of gray cat
Die, very kind physical therapist, die.

Step 3: Aerobic exercise. I must now begin walking again. Months ago, pre-recurrence, I was regularly running 3-5 miles several times a week and lifting weights as well. I was in probably the best shape of my life. And now, after chemo and weeks of rest and tottering around like the old man Tim Conway,  I am ready for the streets. 1 mile, 2 miles, and then back to running. Travels around the neighborhood, scouting the town. Sunrise and sunset, calf and bone.  Trees.

Starting today.

light road landscape nature
“It’s a dangerous business, going out your door. If you don’t keep your feet, there’s no telling….”

 

I hope you, reader, are finding your own road too.

And keeping your feet.

Love out.

 

 

 

Current Status: Pending. Better.

It’s been about a month past the actual surgery, and I am slowly, slowly, feeling the tide of “normal” energy return. It arrives briefly, a teaser, and then fatigue kicks in again.

But it’s coming back. I can feel it. And this gives me strength.

Pluses:

  1. The surgical drain will be removed this week.
woman in pink dress doing jump shot while extending arms under white clouds
I would probably pop a bunion if I did this, but still. 

Freedom! What people don’t tell you about surgical drains is that they are clumsy, they stink, and they make normal movement difficult. Here’s a link for more info about the Jackson-Pratt drain system.

 

  1. I can drive again.
low angle view of cat on tree
I will be alert. I will look both ways. 

This, ladies and gentlemen, is also a freedom. No more do I have to call Uber. No more will I be confined to the walls of this (admittedly loved) house, trapped between naps and half-hearted attempts at chores. I can get drive-thru coffee. I can drive to forests.

Woot!

 

  1. The holidays are coming.

This one is balanced with some cons as well. I struggle with envy of those who are healthy, have intact, functional families that come from all around to visit. Cutting back on social media – the showcase of our hoped-for selves – will be a requirement. I can’t handle the perfect Facebook posts and the full-haired mothers and clean houses and cousins and grandparents. It makes me sad, and jealous. This is petty, isn’t it? I should cheer, root for them all. I should be a better person, meditate on it, extend the full light of compassion. And in my better heart I do. But not now. I’ve still got grief on my shoulder, fatigue on the other, and the twins of hope and fear to contend with. They take up a lot of my time.

On the other hand, there is the food. And the color. And the celebrations and neighbors and friends and candy and presents and watching my daughter open presents. There’s my husband’s goofy good cheer when I cook his favorite roast. There is the yearly ritual of baking a fabulous cake. There is packaging, pumpkin spice, coffee and pastries. This whole season: It’s too much sugar and carbs and drinks combined with the ancient warmth of huddling together against the darkness. Diwali, Hanukkah, Christmas, Kwanzaa, or just the tree.  It is this rallying-together-against-the-cold, this gratitude and kindness across the set table that says I’m here –  that I love. It’s the human condition. It’s us.

And hallelujah for that.

  1. I can write again.

 Recovering from both chemotherapy and surgery dragged me into a depression. Fatigue sapped my thinking into some vague void where words float, linger, don’t connect. This meant that writing anything – even reapplications for disability, let alone phone calls to the wireless service – were Sisyphean tasks that were best left gathering on the kitchen table. And they piled and piled until this past week.

New motto: When all else fails, make piles.

But leaf by leaf, this leaning tower of smog certificates and insurance notices is coming down. Like The Thing from the old Fantastic Four comics says right before a fight: “It’s clobberin’ time!” Instead of fists, I’ve got a dark roast, my papers, and a pen.

IMG_9336

Cheers.

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

 

 

 

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.

 

 

 

 

What is Triple Negative Breast Cancer? Hint: Not a Lottery Win.

It’s also not as terrible as the Internet searches would have you believe. Here’s the lowdown:

  1. It’s a breast cancer that has no hormone receptors, and therefore currently no targeted treatment.
  2. It’s a rarer type – 15-20% of breast cancers are triple negative.
  3. It’s more common in African-American and Latina women. Diagnosis and treatment equity are a real need.
  4. It has a “worse prognosis,” but if you are a newly diagnosed TNBC (triple negative breast cancer) sister reading this, know that it is a hotbed of research, and new treatments are coming out all the time. Old statistics are not your friend. There is hope.
  5. It is aggressive and tends to spread/grow more quickly than the other types.
  6. It has a higher rate of recurrence, mostly within the first three years.
  7. It tends to be higher grade (more quickly and aggressively proliferative) and is also discovered at later stages.
  8. Due to its high recurrence rate, most treatments tend to include chemotherapy. Good news: Chemotherapy tends to work very well for TNBC.
  9. Like all other cancers, it stinks.

What Triple Negative Breast Cancer is Not:

  1. A death sentence.
  2. A slow moving, hormone-receptor positive breast cancer for which targeted treatments like Tamoxifen are available. (Although: some TNBC tumors have slight estrogen-receptor positivity, and so at times TNBC patients are prescribed Tamoxifen.)

In talking about this type of breast cancer in my support group and in the world at large, I often find myself having to place TNBC on a hierarchy of ease-of-treatability types. This is understandable. The world of treatment changes constantly, and clinical trials and subtypes and genomic testing are – happily – complicating and more specifically targeting treatments to every woman’s benefit. Yet: TNBC almost always comes out the worst, is still, in some circles, considered the diagnosis to deliver with a sigh and a pause, and Google/goggle/ogle/oogle aka do not Google will only offer doom. Don’t do it.

So, if you have it, I welcome you with open arms to this most unexpected club. We’re a rarer sort, part of the “danger” side of breast cancer. I think of us as the Austin Powers version:

danger-is-my-middle-name

 

Except we have better teeth.

Yeah, baby.