On death and feelings

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.

Update on marijuana 2016

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

sublingual tincture
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 20sΒ  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…..