My daughter took the photograph. This is the first summer after my sister died.
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.
Does pain mean danger?
From a physician standpoint, sometimes the answer is “No.”
One example, sent by an alert friend, is a lump on the back of the neck, with pain radiating downwards.
This could be an abscess or an infected cyst, but since they didn’t mention infection, it is most likely an enlarged lymph node. This is one example where the doctor or nurse practitioner or psychic healer will look at it, say “Does it hurt?”, poke it and then be all cheerful while you wonder WHY they have to poke it* after you say, “Yes, it hurts.”
A newly enlarged tender painful lymph node is usually a reactive lymph node. It is swollen with cells from the immune system and is trying to heal something in the vicinity. A cut, irritated acne, a cold virus, that shaving accident, a low grade infection, an ear infection. Usually I talk about it and recheck it in two weeks.
The lymph node that will make your healthcare person worry is the one that DOESN’T hurt. A slowly or quickly enlarging lymph node that is not tender is worrisome for lymphoma or for metastatic cancer. Once it gets to 1 centimenter, I am calling the surgeon to consider doing a biopsy. We have lymph nodes throughout our body, but the ones that we can feel on the surface are only in the neck, the supraclavicular nodes, the axillas (aka underarms) and groin. The rest are under bone or muscle, though they can show up on CT scan or xray: enlarged mediastinal nodes along the great vessels and trachea in the middle of the chest.
So pain does not always correlate with the level of danger of an illness. The reactive nodes hurt because they swell quickly, and they usually go down quickly as well.
*They poked it to be sure that it is not fluid filled, that it is firm but not hard and fixed, so not an abscess or cyst, and doesn’t feel like a cancer.
I took the photograph last night with my cell phone, during a rare thunder and lightning storm here… beautiful.
In 2011, when my sister wrote Beast Cthulhu and bone metastases, about her breast cancer being a treatable chronic illness, I was so sad…..
….because it was not true, even though I wished it was.
The perils of being the doctor sister.
It was clear that her cancer was progressing. Yes, she could request to continue treatment. Yes, they would keep treating her….
….but it wasn’t working.
The hematologist-oncologist chooses the best treatment first. Chris Grundoon was 41 and very strong and healthy so they hit the cancer as hard as they possibly could. Chemotherapy, mastectomy, radiation therapy, a second degree burn on her chest wall. It was stage IIIB to start with. Cancer is staged 0 to IV. Zero is “carcinoma in situ”, cancerous cells that have not even invaded their neighbors. Stage I is very local. Stage IV is distant metastases. Stage IIIB of ductal breast carcinoma means multiple lymph nodes, but not the ones above the collarbone, and no cancer in bone, brain, lungs or liver.
She had two years in remission.
The cancer recurred with a metastasis above the collarbone. The cancer had morphed as well, as it often does. Most, most, most of the cells were killed… but those that survived… were different. Now she was estrogen receptor negative, progesterone receptor negative and her2 negative. All genetic markers which help decide which treatment is best and how to target the cells. More and more are being found.
Our mother died of ovarian cancer. I went with her to her oncologist only once. My mother said that her CA 125 was rising, and of course she could do more treatment if she needed to. The doctor said something positive. I followed her out of the room. Once the door was shut I said, “My mother is talking about another clinical trial! She can’t do that, can she?”
“No,” said the oncologist, “Of course not. She is too advanced. But we will treat her for as long as she wants.”
Whether it works or not. Because she wants to be treated. In spite of diminishing returns.
My sister passed her five years from the day treatment ended. So technically she is in the five year survival group even though then she died. When she was diagnosed, the five year survival for her type of breast cancer and stage was about 5%. It had improved to 17% by 2011.
Her oncologist told her “I am referring you to hospice.” in the spring of 2012. She went to San Francisco to talk to another group about a clinical trial. But it was too far and too late. She refused hospice until about two weeks before she died. Fight to the end, she was willing to fight even when the oncologist said, “You are dying.” She had promised her daughter and promised her husband.
I saw her three times in the last two months before she died. She seemed angry to me on the last visit, glittering, knife edged. I tried to sing a lullaby, but she wanted something else. “Samuel Hall?” I guessed. She smiled and I sang it. My name is Samuel Hall and I hate you one and all. To the gallows I must go, with my friends all down below. Hope to see you all in hell, hope to hell you sizzle well, damn your eyes, damn your eyes. Then she trusted me to be present whether she was angry or sad or confused or once even happy, glowing, transported, transformed….
Some people do not go gentle. That is their right. It is their death, not ours, not mine.
The photograph is from the memorial here… My father had end stage emphysema, on steroids and oxygen, and I was hospitalized with strep sepsis the weekend of her first memorial in California. We could not go. Many people from our chorus Rainshadow Chorale came and we are singing the Mozart: Requiem Aeternum. My father died fourteen months later.