UNSUNG HEROES

Keeping the river clean

Humans are lucky. Almost all the grunt work happens without our knowledge. Oh sure, we can tell our bodies NOT to do something. We can hold our breath. Wait our turn at the bathroom. Swallow a burp--or maybe make it bigger. Most of our bodily functions don't need our conscious thought. This allows our brains to be very busy with lofty ideas. Like writing songs and blogs.

But sometimes our bodies say, "Hey, Pal. Pay attention!" Maybe you get a fever. A sore throat. The runs--as in running to the bathroom. In my case, last March, my arm swelled up to twice its normal size. I had what most breast cancer survivors dread--lymphedema.

Now I HAD to think about my arm. And the lymphatic system. Which I knew very little about.

Blood gets all the glory, right? The heart is the subject of countless stories and songs. We feel it do its work. We see blood when we are careless with the kitchen knife--or embarrassed by being careless with the kitchen knife. But lymph? What even is it?

Lymph is a colorless, watery fluid. It travels through our bodies in a network of vessels somewhat parallel to our veins and arteries. The lymphatic system has no pump like the heart. The contraction of our muscles keeps things flowing. The lymph carries white blood cells to and from our organs. It also picks up the trash. Dead cells, bacteria, viruses, and yes--cancer cells. These bits that our body recognizes as NON-SELF would build up in the gap between the cells if the lymphatic system didn't carry them off. At various points along the way, nodes filter those NON-SELF particles from the fluid. Eventually they get pissed or sweated or breathed away. Our bodies can take out the trash without extra help--unless there's too much trash or something presses on the pipes. Then there's a problem.

When I had my mastectomy in 2001, several lymph nodes were removed from my arm pit. Many others were scarred in the radiation treatment. Lymphatic fluid still flowed through my arm. Until lots more NON-SELF cancer cells started clogging up the pipes. And those pipes were narrower because the source of those cells--the tumor--was pressing on the pipes.

So I got my body some help. Thanks to the oral chemotherapy, the tumor shrank. There were fewer cancer cells. Lymphatic fluid started flowing normally again. My armpit is still missing a few nodes, but I do have over 600 more throughout the rest of my body. Taking out the trash.

My arm is back to normal size. My wonderful physical therapist doesn't need to see me anymore. I can lift weights. I have resumed some household chores. (Thank you, Lee, for picking up the slack without complaint. You're an unsung hero too!)

I have a new appreciation for this critical part of our body. 

So . . .

Put a little love in your lymphatic system!

How can you heal a clogged lymph node?

Everybody's got a hungry lymphatic system!

I want to live, I want to give. I've been a miner for a lymphatic system!

No? Well, okay. I guess the lymphatic system will continue to be an unsung hero.

Alice Runs Marathons

 

 

 

Alice was a runner. She had the easy gait of someone with long, beautiful legs. She ran up and down Irish Mountain. She ran on beaches all over the world. She ran many New York City Marathons. When she ran, her skin glowed with sweat. Her body became fully alive with exertion. Her big heart pumped blood and oxygen--and love. Love for the race. Love for us all. Love for life. In fact, after pounding 26 1/2 miles of  NYC pavement, when everyone else would have collapsed on their couch, Alice threw a party. 

Eventually she had to run a different kind of marathon. Trying to stay ahead of the mutants multiplying inside her and chemotherapy's unpleasant side effects. She did her best. Better than her best. But two years ago, Alice crossed the final finish line. And yes, there was a party to celebrate everything she had done in her amazing life. 

We have to keep on running without her. Whether it's an actual marathon like her son Lucas will do in November. Or somehow just putting one foot in front of the other for whatever challenge we face. Step by step. Block by block. Mile by mile. 

Sometimes, you turn a corner and find a hill you hadn't expected to climb. Sometimes the sidewalk is cracked. Sometimes your shoes give you blisters. And sometimes you discover that a few of your own cells are mutants. 

I never ran with Alice. I didn't have that power. She kindly walked along with me. She still does. As I go on this particular marathon, I carry her love of life.

THERE ARE WORDS!

 

Contrary to what some sympathy cards say, there are over 600,000 words in the OED. 

But which ones should we say to someone who is struggling?

A friend just told me he has cancer.  Several of my friends have recent diagnoses. Other friends have other illness, aches, pains, and profound losses. I spend a lot of time arranging words on a page (aka writing). I still don't know how to say--or even what I want to say to these people. 

Now that I'm back in the cateogry where people express sympathy to me, you might think I'd know what helps, what hurts, and what's just pure Hallmark.

For a while I thought, 'I'm sorry you have to go through this' worked well. Expressing sympathy is good. Also 'going through' implied that this was a bumpy, but temporary, part of life's journey. The road ahead would be better. After I said that--and heard it from people--the phrase lost its power. Overuse had diluted its meaning. 

So what do I recommend? What do I want people to say to me? What to I want to say to others? What ARE the words?

Alas, there is no magic sentence. No acronym, meme, or emoji. But I do have a little advice.

Be specific to the person and their circumstances. That's true for any good communication, whether you're telling jokes or making a persuasive argument.

Pay attention to the individual you are talking to. Do they want to be helped? Heard? Hugged? And don't ask them that exact question which, I fear, has already become a cliché since I read it in the New York Times a few months ago. 

Have a conversation. Don't just hand someone words on a platter. Listen to them. Empathize with them.

And please do reach out. I have sometimes been silent for fear of saying the wrong thing.

Yes, communicating is hard. But it isn't harder than whatever your friend is going through.

FORGIVENESS

 FORGIVENESS? That’s an unusual topic. I didn’t expect to be thinking about that!

An old log, battered by the waves, comes to rest upon the shore, and somehow sprouts new growth.

 

Forgiveness, however, is a huge step on my journey to . . . what exactly? Recovery? Health? Accepting this altered life. So okay then. Here goes.

I forgive the Universe. Whoa – pretty grandiose, there, Jane! But I do. I forgive the flaw in its design that means battling for life isn’t always straightforward. We must be on guard against these sneaky little mutant cells. I suppose I must forgive those mutations too, because humans wouldn’t even be here if cells didn’t change over time.

I forgive my ancestors. Actually I don’t need to forgive them because it turns out I didn’t inherit my mutants. Even if I had the notorious BRCA gene, I still forgive whoever gave it to me. They also gave me the parts of myself I like.

I forgive the poisoners. I don’t want to, but I do. The ones who didn’t care about the environment in which we live. The ones who didn’t know the consequences of pollution. The ones who did know but preferred to ignore it. The ones who are still spewing poison.

I forgive the people who helped me and the people who are still helping me and the people who sincerely believe they are helping me. There are limits to what anyone can do.

I’m trying to forgive myself. This is the hardest of all. I can forgive my sins against healthy living. Others indulged in riskier behavior and aren’t battling cancer. It’s harder to forgive myself for squandering this gift of life. Why haven’t I done more? Why didn’t I make more of a contribution? Even having a few hobbies would be money in the sense-of-self bank. Sadly I had let my account dwindle.

But hey, who knows, this may in fact be the perfect time to reinvent myself!

As Machiavelli said, “Never waste the opportunity offered by a good crisis.”

Rahm Emanuel interpreted that to mean, “Take this opportunity to do things that you think you could not do before.”

So I will! Because I can! So far, the health report is pretty good. My body is coping with the drug. Blood counts are normal. My physical therapist and my oncologist are happy. So am I—sometimes.

And on the days when I’m not, I forgive myself for that too.

OUT OF MY COMFORT ZONE

On the last day of 2023, I made a resolution. I would step out of my comfort zone! 

On the first day of 2024, I plunged into the cold waters of Lake Michigan.

In February, I shared the musical my team is writing with way more talented and experienced writers.

In March, I traveled to Colombia--8,500 feet higher than where I live.

And in May, I learned that my cancer has come back. 

Yes. In 2001, I had a mastectomy, six months of chemotherapy, one month of radiation, and started ten years of hormonal therapy. Because of all that, I had 23 great years. I published over 30 fiction and non-fiction books. I traveled to many countries with my husband. I saw our daughter channel her creative skills into the practice of law. In other words, I lived. And I intend to keep living.

I just took three pills. They're so powerful that I was cautioned to wear gloves when handling them. And yet they seem pretty small considering the job they must do.

I must fight an equally important battle. I have many memories of 2001--some of which I'll share in future blogs. But one is very clear to me now. Just after the drama of the surgery, when people had moved on to their own problems, I was left alone with my darker thoughts. I lay in bed feeling sorry that my life could be cut short. I was jolted by this realization. If indeed that were true, then why would I waste one single precious second of the time I have here on Earth in a cloud of misery? Why wouldn't I do whatever I could to make the most of what I have while I have it? None of us will live forever. 

Now it's June. I will continue to leave my comfort zone. I will not abandon comforts! I need sunny days, walks in the woods, bird song, and time with friends more than ever. I must strive, however, to avoid sinking into the lazy-boy-recliner of self-pity, resentment, and railing against the mutants who live in my body now. 

I have decided to use this blog as a place to explore my thoughts about illness, identity, but most of all my quest for life.

Writing it will help me. Thank you for reading. 

 

I LOVE MY PEN

What does it mean to write? I’m not talking about the implications of crafting stories to inspire or inform or amuse. I mean to make words show up on what was originally a blank space. In order to WRITE, an idea somewhere in my brain acquires language. Then a different part of my brain sends a signal along my nerves to my fingers. They tap the keys of this laptop. And then – by an even more mysterious process – those keys signal the word-processing program and letters appear on the screen. These words seem professional. They are tidy. They are uniformly shaped. My bad spelling has been magically corrected. My lines are straight. I appreciate all this help in making my ideas look good, no matter how incomplete. 

Writing is different when I use my cartridge pen. The line from my brain down my arm to the ink feels continuous – almost as if my blood were being spilled on the paper. All my first drafts are written in that way. So are my notes on my projects, my comments, my  maps of fictional places, and my emotings.

This method has drawbacks. Penmanship is a problem. There are times when I cannot read my writing. I'm not exaggerating. I cannot. So I think of something better.

The pen will run out of ink at the worst of all possible moments. Sometimes when my brain is struggling with a thought, I watch the words grow fainter and fainter – a literal manifestation of what’s happening in my brain. I insert a new cartridge. I return to the page – the sentence broken – and I can’t remember what I was trying to write. So I think of something better.

Or the smears – the blots, the blobs, the times when I pressed too hard on the poor nib and something illegible gushed onto the page. Or when I have neglected my pen. Been busy. Been typing not writing. If I pick it up after a long absence, nothing flows. Dried up inside. So I take it apart. I flush it with water. I put in a new cartridge. I start to write. At first, the words are pale. Watery. Eventually the ink is flowing as it should. Because I have thought of something better.

I love my pen. It forces me to think. To take my time. It enables my words to be more than a string of discrete letters. I would never for a moment think of writing with anything else. Except maybe this?

Miraculous Writing Machine made by Friedrich von Knaus 1760

 

FAREWELL TO THE MEWS

The connection between writers and cats is almost a cliche. I wouldn't be surprised if MFA programs offer courses about sharing your desk with a cat. There is a reason for this. I had been putting words on paper for years, but I didn't become a real writer until after we brought Blackberry into our home. I will always be grateful for what she taught me.

BE CURIOUS



Cats are  interested in everything––except what is shown on a screen. And they never look in the mirror. Blackberry and I spent a lot of time watching the pigeons across the street.

KNOW WHAT'S IMPORTANT



Blackberry had an uncanny sense of which particular piece of paper was the one I needed the most. Here she is taking a bath on it, as if to say, "Clean this part up."

CONCENTRATE



Her stare was so powerful that it was unsettling.

BE HUNGRY



Her appetite was tremendous. Once she got a whiff of something she wanted, she pursued it relentlessly. She obeyed no rules. No shelf was too high. She even opened cupboard doors to get food we tried to hide from her. She took what she wanted, even if it was a sip from my husband's cocktail.

BE FEARLESS



Yes, she is sitting on the peak of a pitched roof.

BE WILD

 

Blackberry never ever forgot that she was a hunter. Even toward the end of her life, whenever dusk lengthened the shadows in the woods, and other animals crept from their hiding places, she wanted to leave my lap and run off to be part of that other world.

Blackberry was my inspiration and my companion for many years. We will be telling stories about her life for many more years to come.