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.
A picture of me and my sister in early 2012, about 6 weeks before she died.
Some days are about longing.
There is a door, so I submit this to Norm2.0 Thursday Doors.
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.
I attended the Swedish Hospital Update on Chronic Pain in Seattle two weeks ago on the stormy Friday. The power went out and we were without slides from about noon on.
The first two hours and three lectures were about marijuana. Including medical marijuana and one speaker for and one against. So here are some of my notes.
In 1960 and 1970, the marijuana had about 4% THC. Now some strains have 30% THC, so long term there is no data about what 30% THC will do to a person rather than 4%. THC in strains ranges from 0% to 30% and CBD from 0 to 3.5%. However, those two are not the only active ingredients, so to speak. 537 constituents have been identified that work at the cannabinoid receptor…. that is impressive. I think it might take a while to sort out what they do.
At any rate, we don’t know what smoking 30% THC will do, because it’s new. 4% had pretty minimal psychotropic effects. 30% has a lot more. The average now is 12%. Hashish is closer to 66% and hash oil 81% THC. A patient recently told me that she fainted within the last year. She got butter from the fridge at a friend’s and buttered her toast. Turned out it was THC infused butter and she was taken by surprise on a walk 30-60 minutes later. Luckily someone was with her and she was not hurt.
Recent data is showing that there is not much tolerance smoking 12% THC regularly. However, higher doses show tolerance in about 2 weeks in a study of HIV patients with dronabinol, which is 40% THC. Another study of multiple sclerosis patients with 15/15% CBD:THC reduced pain, reduced spasticity and did not show tolerance.
There is anecdotal evidence about seizures, but no study yet. There is some evidence that CBD reduces THC induced paranoia and/or hallucinations. THC side effects from dronabinol include drowsiness, unsteady gait, delusions, hallucinations, mood change and confusion.
The growers are being very creative in names and marketing. This is re recreational pot.
There are hundreds of names and hundreds of varieties and they make interesting claims as to effects. For example:
AK47 with 36.6% THC and 0.3% CBD ….. creative, euphoric and hungry
sage with 27.5% THC and 0.7% CBD ….. attentive
flow with 23.2 % THC and 0.6% CBD ….. happy, relaxed, alert
Super Sour Diesel 22.7 % THC and 0.8% CBD ….. attentive, giggly, hungry
707 Headband with 22.1% THC and 0.7% CBD ….. euphoric, lazy, inspired
How amazing the difference less than a percent of THC makes… oh, wait. There aren’t clinical trials on this, hon, this is MARKETING.
Onset for oral is 30-90 minutes
peak in 2-4 hours
half life 8-12 hours but sometimes 20 hours
onset 30-45 minutes
peak 60 minutes
half life 3-5 hours
Smoked onset quicker and I did not get those numbers.
The emergency rooms in Colorado saw lots of people who were “trying it” but if they had only tried smoking marijuana in the 1970s, a strain with a much higher percentage made many people sick or hallucinate or frightened. The gummi bears look just like the ones for kids, so kids got sick. More sick people with edibles, as some eat too much.
People using THC before age 25 who have risk factors for schizophrenia are more likely to develop it. Family history, other hallucinatory drugs, mental health problems. The age 21 limit should be taken very seriously.
In Arizona re medical marijuana, 90% of the prescriptions were from only 24 physicians. In Colorado, 94% of the patients applying for medical marijuana did so for “severe pain”. Two of my friends in their early 20s got medical marijuana permits in California for “back pain”, um, ok, hooey. Some people DO have severe chronic pain….
The history of medical marijuana is that Eli Lilly produced a medical version from 1850-1940 for pain. It was removed in 1942. In 1970 it became a schedule one, that is, illegal, drug. There are a few randomized clinical trials for pain, the best ones with high CBD/low THC treatments. Marijuana smoke alone has not been proven to cause lung cancer, but combined with tobacco or other smoke, the evidence is that it is synergistic and makes things worse faster. Dependence can occur, an increase in antisocial personality disorders and there is a withdrawal syndrome for dependent folks. For the small number of people I have had working hard to stop, sleep is the most difficult issue. Anxiety as well.
If people state that they use pot a small amount a couple of times a week, their urine sample should clear after a week. If it’s not clear they 1. couldn’t stop and/or 2. were using quite a bit more.
As far as Washington state law, it was described as a mess. Physicians can’t prescribe, they can only “attest” that the person has a problem treatable by medical marijuana. To attest, the physician has to sign a document saying that they are sure that not only has the patient READ the law chapter 69.51A RCW but also “understands the requirements of being a patient”. There are 24 sections. The physician doing this part of the talk said that he would only prescribe to non-driving MS patients in wheelchairs. Because he finds it hard to read the law himself, so the signing that the patient has read and understood it…. well, the driving legality issue is huge. And the provider, including NDs (naturopaths) and ODs (Doctor of Optometry) in Washington can attest. They are then immune in Washington but not at the federal level.
Every marijuana store is legally obliged to have a medical marijuana consultant present at all times that they are open. The medical marijuana consultant has 20 hours of training to get certified. Patients that are certified with an attestation can grow 6 to 15 plants but ONLY after they have been entered into a database which includes the person who signed the attestation and a photo of the patient. If they grow without being entered, they are breaking the law.
Use of THC long term, the risk of addiction is 25-50%. 17% of the addicted folks started during adolescence. Addiction is currently estimated at 9% of people who have tried it overall. About 30% of users have “problem use” and starting before age 18 increases the problem use 4-7 times. The DSM-V has diagnostic criteria for “marijuana overuse syndrome”, including not being able to stop even though the person wants to. Risk factors for addiction and problem use include early use, family history, PTSD (especially sexual abuse), bipolar diagnosis, ADHD, conduct disorder, oppositional defiant disorder. Mediating factors include parental disapproval, parental supervision, academic competence, higher perceived risk and availability.
And am I attesting? No. My MS patients get the attestation from the neurologist if they want it….
Medical marijuana consultant training: http://www.doh.wa.gov/YouandYourFamily/Marijuana/MedicalMarijuana/RulesinProgress/MedicalMarijuanaConsultantCertification
Washington State Medical Marijuana attestation form: http://www.doh.wa.gov/Portals/1/Documents/Pubs/630123.pdf
WA law: http://app.leg.wa.gov/RCW/default.aspx?cite=69.51A
And pain clinics getting closed down: http://www.seattletimes.com/seattle-news/health/pain-patients-scramble-for-care-after-clinic-crackdown/
The tree trunk is a bonsai from the Lan Su Chinese Garden in Portland. I like the thorns…..
I just want you to know
even if I never see you again
even if I never touch your hand
even if I never hug you again
even if you don’t answer
even if you don’t let me in
even if you are deaf to anything I say
even if you forget the moment you stop reading
I just want you to know
you are loved you are loved you are loved
for my lost ones, living and dead 9/15/16
The photograph is from 2004, in the Hoh Rain Forest.
I am submitting this to the Friday Night Music Prompt #62 : Never too late for love & Keep me in your heart