My sister in 2005, watching while our daughters play in the slip and slide.
For the Ragtag Daily Post: past.
This is my sister and me in early 2012. She died on March 29, 2018, from breast cancer. She was 49.
A patient told me about the “cancer pen” yesterday. I promptly pictured Star Trek’s Bones holding his device over patients, but no, this has to touch tissue…aka a piece of you…and do a chemical evaluation. It is to be used during surgery.
This is neat new technology… but. I can hear my sister saying, “Uh, so what about PREVENTION?”
This is technology to remove cancer after it’s already grown. And presumably metastasized. So this is stage II, stage III, stage IV cancer.
Cancer deaths are the second biggest cause of death in the US. Around 23% of yearly deaths and that does not count the people who survive cancer. At present we do not have many screening tests for cancer: pap smears continue to evolve, and now the recommendation is an HPV test or pap smear every five years AND we have a vaccine for the high risk HPV.
We can screen for colon cancer.
Mammograms for breast cancer.
The screen for prostate cancer sucks.
We can do skin checks.
The screen for lung cancer is now a low dose CT in a certain population that is high risk, that is, smokers. The recommendations have not addressed smoking marijuana.
Recommendations in the US are here: https://www.uspreventiveservicestaskforce.org/.
There are lots of cancers that we don’t have screens for…. yet.
Proteomics is on the horizon. Genomics is looking at the genes, but it turns out that lots of cancers and infections and other illnesses have particular protein patterns. There is TONS of research in this area. Someday we may have protein tests: put a drop of blood or urine on it and say, “Hmmm. Looks like you have a positive test, probable lung cancer.”
That in turn creates problems. Initially we may be able to diagnose a cancer but not FIND it. Also not know how to treat it. The first big study trying to set up lung cancer screening had over 600 worrisome CT scans out of 1000. How many lung cancers did they find? Nine. And half of the nine had symptoms and could be found on chest xray by the time they did repeat CTs. Think of the anxiety of the 600 people who might have cancer and “We will repeat the CT scan in four months. Don’t worry too much.” Also there were complications from biopsying the lungs, like bleeding and pneumonia….
The best bet to avoid cancer is still living in a healthy way: don’t smoke anything, avoid addictive substances, eat good food, exercise, have friends and loved ones, work for yourself and your community, do some things you love…..
I took the photograph of my sister in 2011. She died of breast cancer in 2012. Her blog is here: butterfly soup.
For the Daily Prompt: strut. Struts support things: airplane wings, cars, things that move. How do we as a culture support people to live healthy lives?
There is more than one list of seven virtues. Courage, or bravery, goes back to Aristotle and Plato as one of the four cardinal virtues.
What is bravery to you? An extreme sport? A warrior?
My sister endured cancer treatment for 7 years, over 30 rounds of chemotherapy. She said, “People say I am brave, but they don’t understand. I don’t have a choice. It’s do the therapy or die.” It’s still brave, though, isn’t it.
The person who comes to my mind for bravery is a woman, a long time ago. She spoke Spanish and we had a translator. Her son had had rheumatic fever and they had gone to the pediatric cardiologist for the yearly visit. Her son had a damaged heart valve that was getting worse. He was somewhere between 9 and 12.
“The heart doctor says he needs surgery. He needs the valve replaced. But the heart doctor said he could die in surgery.” she said.
I read the notes and the heart ultrasound. “The heart valve is leaking more and more. If he doesn’t have the surgery it will damage his heart. He will be able to do less and less and then he will die. If he has the surgery, there is a small chance that he will die. But if he doesn’t, he will be able to grow and to run and to be active.”
She said, “I am so afraid.” But she returned to the pediatric cardiologist. And he got through the valve replacement surgery and did fine.
That is courage to me. The parents who take chances for their children: get into boats to escape war. Search for treatments. Fight for their home, their children, their loved ones. It is both men and women, mothers and fathers, grandmothers and grandfathers, and people who have no blood relation to a child that they reach out to help. Adoption, volunteering in schools, supporting a student, supporting an organization that helps children grow and thrive.
A picture of my sister in 2005. She died in 2012 and today is her birthday. Her blog is at http://e2grundoon.blogspot.com/. We were at Lake Matinenda in Ontario, Canada.
When Beth is dying in Little Women, she says that it is like the tide going out….. sometimes I miss my sister so much. I am trying to make sense of the third stage, the stage after mother. With my daughter in college, I am living alone for the first time in 28 years. And I don’t have my sister or my mother or my grandmother to accompany me.
I took the title from one of my sister’s essays: An early promotion to crone. Here: http://e2grundoon.blogspot.com/2007/08/early-promotion-to-crone.html
I want to discuss my sister’s essay with her …. I can’t, except in dreams.
mother, maiden and crone
small child in my heart
baby cuddled warm
safe and loved
small girl dancing
sing run shout
woman seen and heard
woman silenced dressed undressed
woman learning searching writing
woman held and loved
woman gravid bearing carrying
woman feeding raising nurturing
crone quiet watching
white haired dismissed old
unseen unknown ignored
laughing playing dancing
sing run shout
When my mother was dying of cancer, she did not want us to cry.
So we didn’t. We had her at home in hospice for nearly six weeks and we did not cry. Almost.
My sister called me. “I started crying today, at the kitchen table.” My mother was in another room in the hospital bed. “Everyone left. No one stayed with me. Everyone left.”
I didn’t cry but when people called to say how were things, I couldn’t speak. I sat there with the phone, silent. Because what I wanted to say was my truth and I knew very well that that was not what they were calling to hear. So I did not speak.
After my mother died, time passed. I felt…. many things, but the strongest one was “I wish my mother had let me cry.” We did what she wanted. But I wanted to cry.
My sister got cancer and fought it ferociously. She refused hospice until the last week. I flew down three times in the last two months.
Six days before she died, her friend and I were helping her. “I’m sad!” said my sister.
“Don’t be sad.” said the friend.
“It’s ok to be sad.” I said. “What are you sad about?”
My sister started crying: “I won’t be at my daughter’s high school graduation! I won’t see her get ready for prom! I don’t want to leave her!”
“You won’t leave her.” I said. “You will be there. Not in this form.” I meant it absolutely.
“I want to stay!” she said.
“I know.” I said. “I am so sorry.”
With my sister, I did not do what she wanted. I thought of my mother and that I wished she had let me cry. With my sister, I tried to listen to what she wanted and listen to what I wanted. I tried to be honest with her. She even got mad!
But… I watched her go in the cancer bubble. Where fewer and fewer people were being honest. They were afraid. They did what she wanted. They wanted her to be happy. And she tried so hard….
When I had arrived for the last visit with my sister, she was sitting with my cousin. I hugged her. She was not speaking much. I asked if she would like me to sing something and she nodded. I started singing “I gave my love a cherry”, a sweet lullaby. My sister shook her head, angry and fierce. I studied her. “How about Samuel Hall?” I said. My sister smiled and nodded. I started singing “My name is Samuel Hall.” It is about a man who is going to the gallows for killing someone and he is entirely unrepentant and angry. My cousin looked at me, startled. “I haven’t thought of that song in years,” he said. We both sang it to my sister. “To the gallows I must go, with my friends all down below, damn your eyes, damn your eyes.” That was the right song, angry, resisting, raging. “Hope to see you all in hell, hope to hell you sizzle well, damn your eyes, damn your eyes.”
I flew back to work three days before my sister died. I am told that she was scared when she died. “I said, don’t be scared.” said a friend.
Why not? I thought. Why can’t the dying be scared, be anxious, be angry? Why are we afraid to let them? I would have said, Why are you scared? And I would have said, I am scared too. And sad. And angry.
I told my counselor once that my husband was on the couch, angry, and I had to leave the room.
“Why?” she said.
“I am afraid.” I said.
“Why?” she said.
“I am afraid he’s angry at me.” I said.
“So what?” she said.
I thought, so what? “I want to fix him. I want him to not be angry.” Even if it isn’t at me.
“Why can’t you stay in the room?” she said.
I practiced. I stayed in the room. He was angry, grumpy, acting out. It’s not my anger. I don’t have to fix it. It may be just or unjust. Does it really matter? It is his anger not mine. I can stay present.
A friend said that his friend was dying leaving small children. “He was so angry that almost all his friends stopped visiting.”
A man and his sister are not speaking four years after their father died because they disagreed so strongly about how his lung cancer should be treated.
An elderly woman in the hospital agrees to go home for care with her son when he is present and with her daughter when she is present. When neither is present she will not make a decision.
A woman says to me that she is angry that hospice didn’t tell her which drug to give at the end to keep her friend from being anxious.
I hope that we learn to stay present for the dying and for the living. For all of the “negative” emotions. I see most of my hospice patients want LESS medicine rather than more. As their kidneys fail, the medicines last longer. They do not want to be asleep. They may cry. They may be angry. They may be unreasonable. Why should they be reasonable or nice or peaceful?
We want most to be loved entirely. Even when we are sad or whiney or angry or anxious. Who wants to be left alone when they are afraid? I hope we all learn to stay present.
And when we were alone, in that last three days, my sister said “I’m bad!” I said, “You are not bad. You’ve done some really bad things.” She said, “I’m sorry.” I said, “I love you anyway.” And she lit up like a buddhist monk, like an angel. And we both cried and I am so glad I was there.