Waiting is part of this. Always. There are always lines and people who are sick and frustrated and coughing. You must learn patience as a huge part of this lesson. Nothing happens in the time you imagine it will.
Chemo goes easily. I bring in the photos and the cards of the Yew trees and Platinum. It is early morning and not so busy, so Steph, my nurse today, asks if she can call the other staff over. I do show and tell about the photos. They are all so excited about this and so appreciative. They check out my “altar” The room feels quiet. OH these rooms need to have facelifts!
Chemo goes easily, although slowly because my lab results were late due to the back up in lab on this post holiday morning. My vein is easily accessed and the process begins.
Danielle sits and draws, helps me with tea, etc. It is actually a pleasant morning.
Later in the afternoon, the single Chinese woman sitting kitty corner across from me, is talking to her infusion nurse about not feeling well. The RN talks to her about the importance of hydration, etc. She asks : didn’t you meet with the Chemo nurse before all this? You should have paperwork that describes all these things.” The woman clearly does not remember. English is not her first language. Disease is not familiar. Communicating with our medical system in English is challenging enough. She has no advocate.
We speak across the room and when I am getting ready to leave, I walk over to her. Bring her a cup of my mint/ginger tea to taste, but she does not like it. I go over the fact that hydration is critical to getting through chemo. She tells me she has horrible headaches for 2 days after chemo. Again, I say, you must drink, you must take in at least 2 quarts of water, non-caffeine teas, broths. You must take the medicines they give you as well.
“Do you have anyone to help you at home,” I ask.
“No,” she answers simply. Then she says there are some people she can call.
I ask if she has heard of the Symptom Management Service here at UCSF. Of course she reponds “no.” I sit amazed that no one in our system as yet—her Oncologist, or any of the nurses she has encountered– have even offered this. She is a single middle-aged, Chinese woman, with no solid support and no one to advocate for her. She has breast cancer. She is traumatized. She so clearly needs support—so WHY is it not automatically offered?
I talk to her about acupuncture and chinese medicine as well, but let her know that it is not covered by insurance.
I give her the name and numbers for SMS, and tell her to ask her doctor to make a referral.
I have done what I can.
As I am putting on my coat, the other gentleman who had been getting chemo across the room, a middle aged African American man, there with his wife who took care of him during infusion, came over to me and said “Thank you so much for helping that woman and treating her with such respect.” I thanked him also, and acknowledged that when we have people with us to support us, it makes this journey so much easier. He agreed.
My role as nurse/advocate/teacher never stops. It is just part of who I am.
Then, I get a ride home from “John” who works for a friend of mine. Turns out he is a Chinese man, who lived in China until age 21. His medical care growing up was with “barefoot” doctors, and long walks into villages with his grandmother, as his mother died 49 days after his birth. We had quite a talk about medicine and healing. Another wonderful surprise in my day.
And NOW , the day after chemo, I get to begin the cycle of self-care again. Remembering to take my good energy for ME, for healing. For writing and contemplating life. I am anticipating these days of not feeling well, but also grateful for time to just BE, in such different ways than I am accustomed to.
WALKING AFTER 2ND CHEMO
I still have some energy after I get home from my “infusion” of Taxol and Carboplatin, and Pepcid and Benadryl and Decadron and Zofran!
So I walk the ‘hood’
at a slower pace than usual
Noticing more
The single middle-aged Chinese men on Sanchez
Slowly walking their small single dogs
Looking down at the sidewalk so as not to make eye contact
I pass them smiling anyway
Today feels like a good day to be alive
despite my dis-ease
Chemo enters my body easily, cold sensations through my blood stream,
But otherwise un-noticeable
And strange that this intense level of medicine can just slip into my bloodstream, my cells, my bone marrow and for weeks on end disrupt and rearrange the DNA at the very core of my being
In 10 days, my white blood cells will be destroyed
My red blood cells diminished
My hair cells gone (most of them are already)
And who knows what else?
I tried to believe that I would be an exception to the rule—
That my “healthy” diet and attitude would prevent my blood cells from destruction, but ah no, I am no exception to this rule
In this realm, just another “cancer patient”
Who must endure the full extent of cellular suffering
That comes with this territory:
Depressed immune system, anemia, lack of energy
And all the existential questions that come along
With these physiological changes
What is it to live with suffering?
How DO we live each day, knowing we will die at some point, always hopefully later, than sooner?
What is our responsibility to the suffering of others? Of the world? How Do we practice Tikkun Olam—the “repair of the world?”
Is it alright to focus on our own private suffering without guilt?
I must say YES to this, because if I cannot ease my own, surely I know I cannot ease others
As I come up the final street of my walk in the hood,
A pale white sliver of moon is setting in the later afternoon blue-grey sky
above Twin Peaks
My view of her is caught in the tangle of wires
that stretch from pole to pole
and buzz their ominous noise that I try to ignore
I compare this to the unfettered night sky in Albion
a veritable planetarium above the Trillium meadow
and I am saddened at my missing
and knowing that these years, this time of living a city-life
a different life, MY LIFE in all its aspects
is critical to the growth of this Spiritual Being who has chosen
to come into a human body, even with a BRCA1 gene,
to serve humanity
I am certainly NOT in control here.
This plan is so much greater than I am
The complexities of life and love and illness and suffering and killing and trying again and again
to imagine PEACE and EASE and LOVING KINDNESS for all
in the face of a world that is so out of balance
This is my work these days:
To remain creative and faith-full
To heal my self
To let go of old patterns that no longer serve me
To awaken to the present moment, with my heart open
And my Spirit ready