Updates. Also, Sick of Sickness.

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.

 

4 thoughts on “Updates. Also, Sick of Sickness.”

  1. Lopsided, imperfect, and beautiful – that is a good metaphor for life as you said. I am sorry to hear of new lesions. I hope the carbo gem works well. I was able to stay on it for a year and a half.

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    1. Thank you so much, Kristie. And thank you for nominating me for the Sunshine Blogger award. I’m not great at the logistics of posting the logo and treatment fatigue has prevented any extras. But I am grateful.

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  2. So well put. I relate to your feelings regarding the gold of friendships being tarnished through the lens of cancer. Is it obligation? I can only speak from my own experience that when I was with the shoes on the friend foot it was not obligation that drove my actions but pure care and the life long philosophy that you act as you’d wave others to if you were in the same situation. So far, no dice, but lots of rolling away from the table for the old friends. The pre diagnosis friends. Engaging with people who know me as I am now is far easier for them since they had a choice to take an acquaintance deeper into a true friendship. The formerly good friends fell away like leaves on an oak in the fall. They turned red and fled the living assuming I’d be soon crossing the River Styx waving at them on the shore as they waved on their way down to the ground never to be seen again. It may seem melodramatic, but people I thought would truly be there weren’t.
    And people who now choose to get to know me I think I enjoy them equally if not more than the career focused women and men I intermingled with pre stage 4 diagnosis. I remember the last lunches with a few of them. This terminal illness can make ghosts out of even the strongest of us all, on either side of the diagnosis line.

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