My Free-Write Life, Medical Update, & Blizzard Photos (all over the place, like me)

I had the chance to do three free-writing sessions in the last week. Free-writing offers me an opportunity to be prompted by some brand new idea. It provokes writing I don’t always expect and helps me consider and reflect on the present (and the past) in new ways. I love doing it in community as well because I get to listen and learn from others. It’s always meaningful and usually joyful. When I need help processing the big stuff, like managing the confusing and challenging parts of living with terminal cancer, I turn to free-writing. Free-writes don’t require me to be concrete or linear. Instead, it’s a more playful and mysterious process. Below, are three short free-writes, a medical update, and some blizzard-related snow photos.

From Soul-Writing with Joy Reichart
Prompt: Meeting a Mentor

How much of my life have I searched for someone or something that would give me the secret ingredient, a method, the message, or some pathway to follow?

How many times has this seeker turned to song lyrics, poetry, libraries, and bookstores? How often have I looked for someone or something that would serve as my Sherpa, would show me the rocky terrain, and where and how to place my foot where it seems there is no ground or to get balance or footing?

At some age or stage, was it my 30’s…. I stopped searching for an expert, a how-to guide, a 10-step list of how to be a human. What I wanted, craved, and needed was simple but extraordinary – someone I could relate with who spoke up and out openly and without shame about all she had lived through, been through, suffered, and survived. She would be the one who would know how to laugh, who would have arms open for hugging, would be greedy for gathering up plants to plant, grow in her garden, and share. She’d be the one who could pull the leaves off of the kale at the sink and be patient with a salad – adding in sunflower seeds, strawberries and making homemade dressing with lemon and garlic. 

I have not been a patient person or even a happy one for many years. I felt forever behind, an adult perpetually recovering from childhood, trying to learn about love and attachment and trust, and trying to unlearn how people charged with your care can hurt or harm or leave you. I was so stuck.  

I didn’t know my biological father. He, like my mom, was a teenager when he became a parent. He had a childhood that was running him and that he was running from. He didn’t race like a sprinter or a marathoner. He ran like running from a burning building that’s so hot, smoky, and scary he was just desperate for air not who else he stepped over or left behind.

We weren’t a nuclear family that knew how to lead with love from the start. We didn’t know how to tether and bind in a way that lets the sun bask and bake or bring us together. We turned on each other for the last scraps, scratched and clawed, and were too desperate to share. Had we grown so used to shade, and hiding and not being seen that we couldn’t get the hair from our eyes, wouldn’t take off the hoods or pulls the shades and when the sun tried to guide and lead and spell warmth and hope – we closed our eyes tight. The sun, when you’ve been starved of it, seems too big, strong, and bright. Even the far-away sun can be cuttingly sharp and overpowering when you’ve not been taught not to stare right into it. I envied the people who grew up with sunscreen and visors, sunglasses, and bathing suits who know how to be in all climates and seasons, who knew how to meet all elements and were parented so well they didn’t even have to know that all of these things are taught are learned.

The world can feel like a maze to an adult who held her breath through childhood, who had to try to be her mentor piecing together hope, experiences, and observations but who came to so many mismatched conclusions about life and people in the process. It is hard to build a life that feels like your own when the only bricks you have to use are made of what you don’t want to do, be, or repeat.  

Who I wanted to meet was someone grounded and anchored in her ordinary life who was able to live with, not deny, pain, suffering, and trauma, but who had learned to live another way so deeply and completely that it was not a hopeful future she reached for but a way of life she could pass down.

From Soul-Writing with Joy Reichart
Prompt: To the mystery…

You don’t need me to notice you but I do. You don’t need me to explain you to yourself but I keep trying to explain you to me. When you are terminal at midlife hardly anyone asks if you are thinking about dying. The doctors and nurses ask about symptom management and how you tolerate treatment. Loved one’s check-in, sending texts, cards, food, and endless love. They want to know about the scan, the new trial, or whatever the oncologist now thinks or is planning. They want to know how you are managing with the day to day. I am so loved by my loved ones. I am so grateful it makes me teary.

But few people talk about death even as you are slow dancing with the future.  

I remember when my Nana had cancer, and how in the end she got super restless at night. She couldn’t sleep and kept dreaming of all the people who died before her who she would see again. It was as if these ghost people were now starting to line up, calling to her, saying “hey over here,” and she had to get ready to switch worlds and to leave all of us, daughters, grandkids, and friends all circling, hovering, nurturing, and still praying for some miracle. There was the birthday cake, the candles, and song, the game of trouble, watching Jeopardy. We tried to keep things normal or festive or calm or celebratory. We didn’t want Nana to miss out on anything. We didn’t want her to miss out on our everything either so we tried to jam it all in.

We’d say the wig with the bangs looked nice as well as comfortable (which my aunt Worry made as well as most of her meals). We’d try not to notice the weight she was losing. There were times she was sick, going from couch to bathroom to bedroom and back again, and we’d have to weigh the pros and cons of her going to the hospital vs. staying at home. We couldn’t always ease her discomfort which was maddening and hard nor could the doctors, nurses, or hospital which was even more infuriating. 

Sometimes, she had a far-away look. There were places we couldn’t go with her and thoughts and feelings she didn’t choose to share. The unanswered questions or comments or memories she would hold in or back at times. But I was a reporter, a writer, a blabby and intrusive student, and also her granddaughter. I wanted to know what she was thinking and feeling.

“Do you want to talk or write or journal or beat pillows?” I’d ask.

Sometimes she would tolerate me as I probed, pushed and questioned. Some times she would say she wanted nothing other than her perfect and ordinary life, and to feel well enough to enjoy her routines. Sometimes, she’d wave me off as if to say, “I don’t have time/energy/the desire to think about all that,” and I have to say I get that better now. Sometimes I feel bad that I didn’t respect her way of being and coping more as I read self-help books or listened to audio tapes on “exceptional patients” who defied all the odds.

But there were times we’d have long conversations.
There were times we had long talks and she shared memories.
Sometimes we just did our nails or watched a movie.

And also, there was silence. And those times we’d be together keeping all of our thoughts and feelings to ourselves, but we weren’t hiding from each other or avoiding one another we were just together in the silence. It’s a space between us shared in her old living room that I can still feel and touch and taste. She is still with me. I know something of the mystery of death and love and what remains even after someone dies. Death is like the moon in the window which we only sometimes remember to remember. Sometimes we’re too busy to pause and honor the wider world. Still, the moon shifts and changes, cycles through all her phases and shines even if we’re too busy to pause. 

Death is like that as well. Eventually, we all tune in and can’t keep our eyes off her. She doesn’t clamor for our attention. She doesn’t have to. In the end, she gets us all. 

Free-Write with Creative Coven (Lynn found a prompt from a David Whyte poem)
Prompt: To live more generously

“Do not lift anything,” Heidi said in reference to the snow that is coming knowing I had surgery on Monday to put in a PleurX catheter to drain the fluid around my right lung.

“Do you have salt for your stairs and walkway?” she asked, telling me she was buying some and picking some up for me. 

“There is a gift certificate in your inbox,” Deb said, “And I’m sure the food is better than my cooking.”

Before eating a bite I was full up on her kindness. 

“I’m at the grocery store, do you need anything?,” Su said. I didn’t but it was lovely to know I was being thought of. 

“Beth is a trooper, huh?” my sister Karyn said because Beth comes to the hospital for all my treatments. I told my sister Beth couldn’t come with me because she was COVID exposed. 

“Please don’t go alone again,” my sister said, “Let us know so we can go.”

I thanked her but told her my motto is to:

 do all I can, as independently as I can, for as long as I can. 

I told my other friend Kathy that as well when she was checking in on who was with me for surgery. 

Her response to my motto was, “Well then I’m glad you can go alone.”

I was glad. I felt seen and believed. I wasn’t being a martyr but I don’t want people missing work, risking COVID for boring waiting around hospital stuff. 

“We don’t mind driving a bit,” my aunt says, “and we can take you to or from the hospital.”

I am grateful for each and every offer, gesture, and expression of love. Even when I don’t need anything, at the moment, each and everyone makes me feel loved, supported, and reminds me that if things get tougher, I am not alone. 

So far, I feel o.k managing the practical stuff and I am lucky I can walk, shop, clean, feed the animals, and water the plants. I am grateful I can walk to the train and drive and have a warm and cozy place to rest. 

“I know it might sound strange,” my bother said, “but I’d like to go with you to one appointment.”

“That can be arranged,” I said, wondering if he was using reverse psychology to play me so effectively. 

I am trying to accept and appreciate all the help love and care. I am trying to remember I can still be helpful, loving, and caring to others as well. 

I’m also working at “being on my own side,” as Donna Jackson Nakazawa says rather than turning on myself. Lately, my body has been a pain portal. Lately, it is not easy to stay present with my pained body but I refuse to abandon, berate, and turn on myself. I got ice packs and heating pads, got myself water and fluids, rotated ibuprofen and Tylenol, and let my loved ones love me.  

I did not dissociate or get drunk, did not lie about the discomfort but also didn’t exaggerate it. When people ask me to promise to take it easy I don’t just “yes” them but do try to take it as easy as possible. I meditate. I do guided imagery. I let the weight of the back of the couch soothe and comfort me. I watch dumb TV while the fireplace is on. I drink hot cider. I welcome my pets all around me.  

I let each text or phone call feel like a hug. 

I limit how much I ask of my body like last week, when I left the hospital early after my MRI without going to blood at the lab.  

The clinical trial nurse called me while I was on the train ride home. “Did you know you had labs today?” she asked. 

“Both arms are too beat up,” I told her. “I doubt anyone could find a vein,” I said. I explained that the surgery was unable to get the IV my left arm on Monday because I had to fast the night before and without a gallon of water before an IV, my veins can no longer be accessed (which is why I know it’s time to get a port). I shared how it took a bit to get the needle in for the IV contrast and so I just went home. 

“That’s fine,” she said as though I were looking for permission or approval.

I didn’t say, “It’s already decided,” because I love this nurse who has been very good to me. 

“I hope that’s not a problem,” I said, “I can come back later in the week if need be.”

We made a new plan and I felt relief. I’m finally learning that I’m always the expert and authority on taking care of myself. That day, it meant skipping the lab drawer. This day it means, enjoying the loud purr of sprinkles by my right leg and taking pictures of the white nasturtiums blooming on my porch, in winter (a gift from my friend Margaret), and thinking of one of my favorite Raymond Carver poems (that Lynn loves also) – the one he before dying at 50 of lung cancer: 

“Late Fragment And did you get what you wanted from this life, even so?
I did.
And what did you want?
To call myself beloved, to feel myself
beloved on the earth.”

Medical Update:
I got my PleurX catheter put in on Monday. It was a long and hard day that I am glad is behind me. I’m doing much better now and while I still can’t lift anything heavy for a few more days, I now just have discomfort but no pain. I’m bummed I can’t swim anytime soon but I am glad I’ll be able to return to the gym and use the elliptical starting on Tuesday. I’ve noticed that on days I work out I sleep much better than when I don’t so I’m trying to keep up with that as much as I can.

I also got my brain MRI done last Tuesday and am thrilled that the cancer did not spread to my brain. My oncologist texted to say, “I thought you’d want to know you have a beautiful brain.” It was a huge relief because I have cancer in several lymph nodes around my neck, chest, and armpits and was concerned about what direction things could be heading. This is one hurdle I had to get through to remain eligible for the clinical trial and I have a few more to face this week.

I will have a PET CT, an echocardiogram, and an eye exam in the next 48 hours. If those tests are all clear I’ll have a procedure at the end of the week to get a port put in which makes it easier to get infusions. I had put the port off as long as I could and that made sense when getting treatment once every three or four weeks, but not now that treatment will be weekly.

If I am lucky, I will be able to start the trial a week from tomorrow. I am nervous as well as excited about this trial.

I read a great quote from the Nadia Bolz-Weber’s newsletter that I love. It’s by Richard Rohr and it reads:

“You can tell a lot about someone by what they do with their pain… do they transform it, or do they transmit it.”

Isn’t that powerful? I wish I could say I never transmit pain but that would be a lie. However, I transmit it far less often and strive to transform it (for myself and others if I can).  

Joy-Stalking through the Blizzard
Finally, we got hammered with a ton of snow. However, because we didn’t lose power, it was a calm and pleasant experience rather than a cold and stressful part of what we New Englanders sometimes have to deal with. My friend Kathy refers to it as a “gentle blizzard” experience. I am grateful it was this way for most (and sorry to sound smug if you are cold, got flooded, or weren’t so lucky). Here are some pictures from the storm. The awesome dog pictures were taken by my brother Joey (isn’t he talented?).

Stay warm and as well as you can!