Warm hats, bald heads; or, could I get that recipe for parmesan chicken?

What a thing of beauty is my support group.  Zoom allows us to meet in way seemingly impossible before the pandemic--those who are house or bed-bound, those of us in the hospital, those of us in hospice--we can all Zoom.  There we are each week, all of us lined up in rows--we could be a book club, but we are not.  We are bound to one another through the diagnosis of metastatic cancer.  We have our own separate group--we don't hobnob with the breast cancer group, unless and until someone's disease progresses; we aren't invited to the young people with cancer group; we will never make it into the post-treatment group (that ship sailed at diagnosis, even if it took some of us longer than others to realize the ship was far from shore, headed to different waters).  I'm sure the theory is that there are commonalties, fears, concerns, terrors that make the metastatic group a closed community. I'm sure that these other groups don't want to sit companionably with someone who might represent the loss of hope to them, to someone who is going to die.

As we all are.  Having stage four cancer makes me confident about the way I will die.  I don't expend much energy worrying about being abducted and dying in the trunk of someone's car.  I used to worry about that, if I was on a dark road, or out of gas. 

You should see the deep beauty of the women in my group.  We could be meeting to talk about racism in our communities, we could be crafting together, we could be old friends from college.  On the face of it, you wouldn't guess that our bond is metastatic cancer.  These women are lovely, and whip smart, and hilarious, and wry, and realistic, and dreamy.  Some of us look how we expected we would look when we found out we had cancer: warm hats over bald heads, a kind of thinness which could be mistaken for fragility, but that would be wrong. What moves me is the tremendous strength in this group of women.  We tell each other stories of wounds that won't heal, of allergic reactions to chemo that leave us gasping for air, of braces around our heads which keep us still while our brains are radiated, of pain that leaves us speechless.  And yet we gather, and say, it's okay, or, I'm scared, or can you send me that recipe for parmesan chicken.  

I think if you passed any one of us on the street, you would not guess at the courage and strength.  You likely wouldn't notice us at all.  But I have been forever changed by traveling with these women--I know I can bear so much in this pursuit of life.  You can too.

May her memory be a blessing.  I have said that, written that, so many times in the last several years as my circle of friends began to include friends with metastatic cancer, as I began to spend time with facebook groups like EGFR Resisters, which is a particular group for people with a particular mutation.  It's a global group: I see what it is like to try and get these specialty targeted chemo drugs which have prolonged my life in other countries where there is no insurance, where families sell their belongings to try and eke out another month of medicine.  How one buys the generic from India.  How treatment differs so much depending on your geography.  How lucky I am.

It's hard, when someone is in pain, to know what to say, and harder to know what to do.  It's hard not to respond to an expression of pain with information: I had great success with the fentanyl patch; my aunt had a marvelous physical therapist; my integrative medicine doctor suggested these meditations to help with pain.  Information is usually not the solution, but it's so hard to sit in the space in-between, to acknowledge someone's pain without feeling the urge to fix it.

The realities of our bodies in pain, the limits of medicine (to cure, to alleviate pain), that instinct to pursue life at all costs.  It's so much more complicated when the patient is a loved one.  When the patient is you.  Sometimes the answer is to look the person in the eye and sit quietly with them.  Sometimes the answer is a warm blanket and curling up to that person in bed to watch the next episode of Lupine.  For our doctors, and for our loved ones who want us to preserve living--at what cost?--the space between what is possible to do for someone and what someone needs is the place to which to attend. 

We are all walking in this landscape of the realities of our bodies, the reality of our ailing planet, our specific loves and our specific fears. Stage four cancer, with its scans--every three months, every two months--where you see if and just how far your cancer has progressed tends to keep people on high alert about the landscape.  I think about the Puritans--and the famous sermon "Sinners in the Hands of an Angry God"--Jonathan Edwards draws out a terrifying, fiery, very real hell to scare unbelievers.  His God chooses whether or not to cast wicked people into the furnace of hell.  God's grace is the only chance we have to believe and trust in Jesus Christ.  The sermon must have been terrifying to hear--it is still, for this modern reader, unsettling to read because the God imagined is so angry.  Something about the image of beleagured Puritans in their black and grey clothing walking across a fraying rope over the depths of hell, praying an angry God does not simply toss them off of the rope, reminds me of the gut-emptying, shivery feeling before hearing the scan results.  Am I safe for another three months or am I untethered from hope, searching for another drug, a clinical trial, another way to have three months?

I don't believe in an angry God and I don't believe in a fiery hell, although I will admit that both ideas make me anxious in a way that belies my surety about a kinder version of sin, judgment, and forgiveness.  I have met people who are absolutely sure, or at least present themselves as so, of the opposite vision--the heaven where our old dogs and our beloved relatives appear, burnished with a golden glow, a heaven where we remain ourselves in some way.  For me, that lamb and lion vision fits squarely within Joan Didion's insistence that we tell each other stories in order to live.

I do believe that knowing something about what the person in pain believes, or fears, or desires after death is a way into that space between what could be done and what should be done in the face of pain, or, in the presence of a body that is failing. I do believe that in addition to the warm blanket, or the morphine drip, or the pain patch, there is a place for holding hands, for listening, for being courageous enough to ask the hard questions, or hear the hard answers.  I am finding it hard to have hope.  I am in pain that is not tolerable anymore. I am afraid to die. I am ready to die.

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I haven't written in a long time--for various reasons, but I hope I am back.  My health is good right now--I have been on regular chemotherapy and continuing on the targeted chemotherapy for about a year now.  My next scans are in March--I'm always hoping for stability, and also braced for the other shoe to drop.  I'm deeply tired of covid--we all are.  I get scared that so much of my last years on earth are going to have been spent in quarantine, but there is nothing to be done.  I am waiting to become eligible for the vaccine, which can feel crazy-making when you think about the overlap between covid--which affects the lungs--and my cancer, which is also about the lungs, but so be it.  The roll-out is imperfect but it is happening, and that makes me feel optimistic about the spring and the summer.

In the meantime, the snow is deep.  Sebby, our goldendoodle, adores the snow, and comes back in with these clumps of snow on his legs that are fairly intractable.  I saw someone on Youtube using a wire kitchen whisk to get the snow out--perhaps I'll try that.

We had a big spread yesterday while we watched Tom Brady's magical dance with Time--everything from chicken wings in gold sauce to dal with basmati rice.  Superbowl cake with sprinkles.  It's really good to be alive.