Christmas – Pink Stinks

…means everything takes longer, everything is basic. Followers of this blog will know that all of the cancer surgeries and treatments have caused a rare but known side effect called radiation-induced brachial plexopathy. Basically, my right arm is paralyzed. I can no longer use my arm or hand or fingers.

And that doesn’t undo me. Oh, no. One-armed me is still me, only danglier. Slower. Pokier. Accidentally slappier . And this year, even with this new, unanticipated diagnosis, I’m hell-bent on making a heavenly, albeit klutzier, holiday. Laissez les bon temps roulez!

But how will I manage? How to set up the decor, the cuisine? Here’s the one-limbed plan:

Let the tree standards sag. Yes, I said “sag,” and I am unashamed. (Skin and body parts are already there.) This year’s tree has fewer ornaments, fewer lights, and less perfect spacing. Silvery strings of faux pearls asymmetrically skim the branch tips in an uneven spiral ladder that, in past years, would have badgered my sense of organization into nighttime handwringing, but, lo, I have but five functioning digits this year, and this, dear reader, saves me. The stringed pearls and all the ornaments are uneven, atilt like drunken orbits, and I am, oddly, not unhappy to allow this unruly state of festive whimsy to take precedence over my need for faux-fir control. Let the ribbons reign askew, let the star steer south. All systems are jaggedly GO.

2. Packages shall remain in their original mail wrappers. Observe the box. Observe the plastic bag.(See photo below.) There will be no coiled ribbon adornments, no glittery paper sheen to enhance the gift itself. I am not yet able to use scissors with my left hand, and cutting and taping would require an ambidextrous choreography of such complication as to induce hysteria. I am somewhat sad about this. Otoh, it saves resources and paper. Boxes and plastic it shall be.

3. Vegetable chopping will be done by our teen and by my patient husband. From our teen I anticipate globally-circumnavigable eyerolls. She will likely take frequent breaks to scroll on her phone; I will gently urge her on to continue slicing the celery bits. But the mood shall remain lighthearted because beets, potatoes, beans and barley are a bounty to push back sadness. Like the oats and peas song, who knows how they grow?

4. I will remember what I can do. One arm is useless, the other has flourished. But two strong legs carry me to forests and trees and water. When I close my eyes, I can hear house finches and mourning doves singing the start of a day. Poems like this one, by Thomas Centolella, illuminate the ache, wonder and mystery of being here at all. And I can still read them. I can cackle and jump. I can plant and sautee garlic, hoard chocolate and recline. And food! One arm means an artfully poised wineglass during dinner. Let the singularity of my upper limbs not deprive me of a smooth cabernet, which I will gladly toast to this season. Glog, sugar cookies, rib roast and pie. A caress. One arm, ladies and gentlemen. The cat’s soft fur, a little spritz of perfume, a fistful of soil; cloudberry jam and a steering wheel in a car going who knows where. One arm, one arm, one arm can hold it all. Fist bump!

Thus the holiday goes. Everything will take longer and will be wobblier. Do not hand me the hot soup tureen. But look in our kitchen window and you’ll see the soft edges of steam from something warm, a dish probably held by two or three of us, ready to pass, season, or heartily eat.

Cheers.

This disheveled tree is a testament to lower standards.

It’s the post-Thanksgiving hubbub and cozy couch life. We’ve eaten as a family and hung out with dear friends, and gratitude for each small bite abounds. We bought and decorated our tree yesterday, which was strategic planning on our part, as my next chemo cycle started Friday afternoon and we knew it would wipe me out. So Friday morning, we scrambled. The tree is lopsided, imperfect, and beautiful. There’s a metaphor there for living, I think.

Xmas Tree

I’ve started a new chemo cycle. The immunotherapy I was on, Tecentriq, nearly eliminated the larger tumor under my armpit. Unfortunately, as cancer will do, some cells developed resistance to the immunotherapy and moved into my lungs. I now have 5+ tumors in both lungs. It’s impacting my breathing and causing some coughing. This was terrible news for our family and has caused yet more grief. We’ve told our daughter about this recurrence, that it’s treatable, and that we’re taking things one step at a time.

Those conversations with our child – they are the worst, most wrenching part of this dread tunnel.

And so I’m now on Carboplatin, Gemcitabine, and Tecentriq, all at once. After my first dose last month I slept for nearly 36 hours, with one – or two- hour wakings for water and food. I kept very little down. This treatment plan, if successful, might add another year to my life, but I will be on it forever or until it stops working, and sick for 1/3 of the time.

It’s the worst treatment to date. For about 7 days after, I am very sick, despite anti-nausea medications and steroids. Carboplatin and Gemcitabine can really knock down blood counts. Some people need transfusions, and I hope I do not.

How do I feel about this? How does one go forth, knowing that 1/3 of his/her foreseeable life will be flu-like nausea and pain?

I still choose to remain in gratitude for each day. Each day these eyes manage to open is one to be thankful for. I planted daffodils and crocuses to invest in next spring, and I make wishful, hopeful travel plans. My daughter still has homework, my husband likes a good meal. Friends are treasures, better than gold.

And yet I’m so sick of being sick. So sick of relating to people through the lens of disease. There are times when I wonder if someone is reaching out because of obligation, or because of something else. I blame no one for this. It’s the nature of cancer, and people mean well. But the lens of cancer forces all kinds of urgency, can make people want to be a “good person” and reach out, when really it’s not necessary. And yet sometimes it is. And the hard part is to navigate asking and receiving, distance and proximity, and knowing it’s clumsy and hard and the forging of a new relationship with people around you.

And understanding that the lives of others go on. Your disease is not the world. People have kids and dilemmas and issues and stories that I want to hear about, and to be a part of outside of cancer. The continuum still goes on.

In a lopsided, beautiful tree, the continuum still goes on.

Tag: Christmas

A One-Armed Christmas

Updates. Also, Sick of Sickness.