Category Archives: metastatic cancer

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Diagnostic quest

Some diagnoses take months or even years. How can that be?

A patient comes to me with right shoulder pain. His pain is “out of proportion to the exam”. His shoulder exam does not fit with a rotator cuff tear, he has good range of motion, it is weird. I hospitalize him and ask orthopedics to see him.

The orthopedic surgeon agrees with me. It is not a musculoskeletal shoulder problem. We do xrays and labs. We do a chest xray as well as a shoulder xray because on the right side of the body, the recurrent laryngeal nerve goes down to the diaphragm and then returns to the shoulder and neck. So sometimes shoulder pain on the right is referred pain from a problem or tumor or pneumonia at the base of the lung.

His chest xray is normal.

We are having trouble controlling his pain even with morphine.

I call the general surgeon. My patient has some small lymph nodes in his supraclavicular spaces. We actually have lymph nodes all over, but many are hidden deep in muscles or under bone. We can feel them in the neck, the supraclavicular space, under each arm and in the groin.

The surgeon says there isn’t anything large enough to biopsy.

I call the oncologist in the next county. We are too small a rural hospital and do not have an oncologist at that time. I say, “I think he has cancer, but I can’t find it.” The oncologist listens to the story. He agrees. We do a chest and abdominal CT scan and some blood tests. The patient has had his colonoscopy. Nothing.

I send the patient to the oncologist’s bigger hospital. They can do some tests that I can’t. A bone scan and a PET scan.

The oncologist calls me. “I think you are right, but we can’t find it yet. Send him back when there is something to test.”

My patient goes home with pain medicine.

He then calls me every week or two. “It still hurts,” he says. “Please come in and let me do another exam,” I say. “No,” he says and hangs up. I am a Family Practice physician so his partner is also my patient. She comes in and rolls her eyes. “He complains, but he won’t come in!”

At last he shows up in the emergency room and now he has enlarged supraclavicular lymph nodes. The general surgeon biopsies them. It is an undifferentiated carcinoma. That means we don’t know where it is from. We don’t know the primary.

The oncologist says, “Send him down, so we can do the tests again.”

The patient is at home and refuses.

I call the oncologist back. “He’s refusing.”

“Oh.” says the oncologist. “Well, we can treat it with chemo blindly. We can try to figure out the primary and treat it more exactly. Or he can choose hospice.”

Ok, yes, three choices. I call and leave a message to go over the choices with him.

He comes up with a fourth choice: he refuses to talk to me at all.

I call his partner. “Yes,” she says, “He’s grumpy.”

“We are happy to help with whatever choice he makes.” I say.

“I’ll tell him.”

He continues to refuse to talk to me or the oncologist. Eventually he goes back to the emergency room and goes to hospice at the local nursing home.

I tell the oncologist. He comforts me. “Yes, sometimes we are pretty sure there is a cancer, but it has to get big enough to find.”

I am not comfortable with that but medicine is way more complex and messier than people realize. Sometimes it is really nice to have a patient with something where I know what it is AND it can be treated. Appendicitis. Gallstones. Strep throat.

But sometimes it is complicated and can take months or even years. Stay present and keep checking in.

Diagnostic quest.

_____________________

The boat is returning to the water after work in our boatyard. Healed and seaworthy.

For the Ragtag Daily Prompt: quest.

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We want to believe

My cousin said to me once: “We want to believe what we want to believe.”

This was right before Mr. Trump was elected President.

After my cousin said that, I was unsurprised that Mr. Trump was elected. He was elected out of fear and anger and shame and grief. He was elected by people who are afraid that people rising out of discrimination will take things from them. Lower their standard of living. They are afraid that they will have to give things up.

A friend was working on my boat. He said that if I paid in cash, it would be less. Because, unspoken, he would not report the income. I thought about it. I said, “My medical practice is mostly medicare and state insurance. That is paid for out of our taxes: yours and mine. Therefore I am giving you a check and I don’t care if it costs more.”

There is a big culture here of not paying taxes. Cheat the government. Pay cash to each other, nod, nod, wink. It is tempting, takes a percentage off what I pay. But…. the people who I know are doing this are mostly conservative. They say drain the swamp. They say the government is cheating us. But THEY are cheating all of us.

I asked my cousin why he and my maternal family believed a story masterminded by my sister. That my father and my neice’s father and I were villains. One of the villainies was the our grandmother’s money had paid for MY graduate school but not my sister’s graduate school.

But that is not true. My grandmother paid four years of medical school tuition. 21K. I paid my own loans.

After my grandmother died, and then my mother died, my father used “my grandmother’s money” to pay off my sister’s graduate school loans. 36K. My parents also cosigned on a house, that my sister walked away from. They wrote 30K off thier taxes that year selling it. My father bailed her out of 7K on a work credit card. My father called me crying when she bullied him out of another 30K for another house. And that is when I said to her ENOUGH. I refused to visit for a year: until she went into hospice for her cancer. I visited three times while she was in hospice. We made peace. But she did not tell anyone else the truth.

I said to my cousin that I could send the bank statements showing that my father paid for my sister’s graduate school. That is when he said, “No. We want to believe what we want to believe.”

I thought really? So you want to believe my sister because she is dead. We will not speak ill of the dead, so you are ok with me and my father and my niece’s father being villainized and you will not even look at the lies.

VOTE and VOTE against FEAR, SHAME, DISCRIMINATION, ANGER AND GRIEF. We have to stand up. I loved my sister even when she was dishonest and bounced 1000$ worth of checks in my small town with people I knew. My father got threatening phone calls and he paid. That was the last straw for me.

So guess which politician stirs up fear and hate and discrimination and anger and grief? Well, honestly, both sides are guilty of that, but I stand against discrimination. We all shall rise up.

Love and Blessings and Peace you.

The photograph is on one of the last three visits to my sister. She died in March 2012.

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My mom loved me

I struggled after my mother died of ovarian cancer in 2000. She was 61 and our love was complicated. Two years after she died I hit an emotional wall and had to go find help. My marriage was showing cracks too. I have written about Adverse Childhood Experiences, but there can be love too, even in a difficult household. I wrote this poem during that time.

My mom loved me

It’s herself she didn’t love
She didn’t love her anger
She didn’t love her fear
She didn’t love her sorrow
She didn’t love her shadows

She packed all her troubles in her saddlebags
and rode forth singing

When I was angry
she felt her anger
When I was scared
she felt her fear
When I was sad
she felt her sorrow
When I felt my shadows
she felt hers
I hid my shadows

I hid my shadows for many years
and then my saddlebags were full
They called me

I dove in the sea
I rescued my anger
I rescued my fear
I rescued my sorrows
I rescued my shadows

At first I couldn’t love them
My mom didn’t; how could I?

But I loved my mom
I loved all of her
Her anger
Her fear
Her sorrow
Her shadows
Her singing and courage

I thought if I could love her shadows
I could love my own

It was hard
It took months
I looked in the mirror at my own face
And slowly I was able to have
Compassion for myself

I am sad that my mom is not
where I can touch her warmth
and tell her I love all of her

I tell her anyway

I’m finding many things as I surface from my dive
Sometimes I feel the presence of angels
I was looking for something else
I found a valentine
that she made me
No date
Many hearts cut out and glued
to red paper

I am so surprised

My mom loves me
shadows and all
now and forever.

__________________________

My mother used to quote “Pack all your troubles in your saddlebags and ride forth singing.” Does anyone know where this if from? I have not found the source. It could be her mother or her mother’s parents.

The photograph is my father, the year my sister died of cancer, 2012. He died in 2013.

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Is this a tree?

Is this a tree?

I would not call this a tree. I would call it a cone. It contains seeds. It is not a tree.

A pregnancy is called an embryo until 8 weeks after conception and then a fetus until birth. It is not a baby, any more than a seed is a tree. Here is a link to a picture of the embryo developing:

https://en.wikipedia.org/wiki/Human_embryonic_development#/media/File:HumanEmbryogenesis.svg

It’s a bit difficult to call the embryo a baby.

After 8 weeks (10 weeks from the last menstrual period) the developing pregnancy is called a fetus. It cannot survive outside the womb. A term pregnancy is 37 weeks, and the due date is at 40 weeks. The earliest survival, certainly not natural, is around 24 weeks. This takes heavy intervention and technology, a premature infant on a ventilator for months. There is risk of damage to the eyes from high oxygen and risk of spontaneous brain bleed and cerebral palsy, because the newborn can weigh half a pound. Once born, the fetus is termed a baby.

This is important from a medical standpoint and pounded into us as physicians. WHY? Because in a trauma situation, the life of the mother comes first. In Obstetrics and Family Medicine, the life of the mother comes first. In Oncology, the life of the mother comes first. My sister was diagnosed with stage IIIB ductal breast cancer at age 41. She was engaged and it turned out that she was pregnant. She wrote this essay on her blog, Butterfly Soup:

The hardest loss of breast cancer.

She had an abortion and chose chemotherapy, because it was her or the fetus. If she had chemotherapy pregnant, at that time she was told that it would probably kill the fetus or cause terrible birth defects. If she held off on chemotherapy for seven months, her oncologist thought she would die. She had a very very aggressive cancer and she already had a daughter who needed her.

She lived until age 49, with multiple rounds of chemotherapy, radiation, gamma knife radiation, whole brain radiation. And she lived until her daughter was 13. Without the abortion, her physicians thought she would have died when her daughter was 7.

My ethics in medicine are that patients have autonomy. I would NOT have wanted my sister to choose to refuse chemo and try to bring a baby to term while dying of breast cancer. However, it was HER CHOICE, not mine. It was private and no one else’s business and how dare people make moral judgements about another person’s medical choices. I give my patients CHOICES. They can choose not to treat cancer and go into hospice. They can choose surgery or refuse it. They can choose to treat opioid addiction or refuse. They may die of a heroin overdose and I grieve. I try to convince them to go to treatment and I give them nalaxone to try to reverse overdoses. I refuse a medication or treatment that I think will harm my patients, but my patients have autonomy and choices. That extends to women and pregnancy as well.

It is NOT a baby in the womb, however emotionally attached people are to this image. It is an embryo first and then a fetus. And in a car wreck, the woman comes first and the fetus second.

For the Ragtag Daily Prompt: explain.

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behavioral health, cancer, and the immune system

There are more and more articles about immune causes of “behavioral health” diagnoses.

The latest I’ve read is about schizophrenia:

https://www.nature.com/articles/s41598-020-63776-0

Auto-antibodies are antibodies that we make against something else that then attack a part of ourselves. The most well know version of an auto-antibody is Rheumatic Fever, where an antibody to streptococcus A attacks the joints or skin or heart. I had a patient in Colorado who needed a new heart valve at age 10 or 11 because of Rheumatic Fever.

I have written a lot about PANDAS and PANS (respectively Pediatric Autoimmune Neuropsychiatric Disorders Associated with Strep A and Pediatric Acute Neuropsychiatric Syndrome) because an older psychiatrist was suspicious that I have PANS. I have had pneumonia four times and it is accompanied by anxiety and fear, part of which turns out to be hypoxia and tachycardia. I think a heart rate of 135 makes just about ANYONE feel anxious. It feels awful.

But what about other Behavioral Health Diagnoses? Remember, we are on the DSM V, the fifth manual of psychiatric diagnoses. We have not had markers or a clear cause. That is, we are aware that serotonin is low in the intracellular spaces in the brain with depression but we don’t know what the mechanism is, what the cause is and what exactly is happening in the neuron or brain cells. A paper on a particular rat neuron said that there were 300 different types of serotonin receptors on that neuron. Blocking one type caused rats to act in an obsessive compulsive manner. But there are 299 others and then combinations. Whew, there is a lot to be learned about the brain.

Fibromyalgia can be caused by autoantibodies, at least some of the cases: https://www.sciencedaily.com/releases/2021/07/210701120703.htm

Chronic fatigue: https://pubmed.ncbi.nlm.nih.gov/34441971/

Lupus and fibromyalgia overlap: https://pubmed.ncbi.nlm.nih.gov/9207710/

Autoimmune disorders are more common in women. We think this is because of pregnancy. The woman’s immune system has to tolerate a pregnancy where half the genetic material is from the father. Yet the immune system also has to recognize “not me, infection” and be able to distinguish that from the pregnancy. This is tricky. The most common autoimmune disorder currently is believed to be Hashimoto’s Thyroiditis, where there are self antibodies to the thyroid. Post covid could potentially beat this out.

Chronic fatigue and fibromyalgia have been orphan diseases in that we do not have an inflammation marker that defines them. The ESR (erythrocyte sedimentation rate) and CRP (um) are usually normal. These are often elevated in rheumatological disorders. Not having a marker doesn’t mean that the muscles are not painful and doesn’t mean that the fatigue is not real.

I am hopeful that we are on the cusp of a true revolution in medicine, with more understanding of the immune system and behavioral health disorders, as well as post covid, fibromyalgia and chronic fatigue. I worked at the National Cancer Institute in the 1980s before medical school, with Steve Rosenberg, MD. He was trying to get the immune system to fight cancer.

Now there has been a cancer treatment with 100% success: an immune treatment for people with rectal cancer with a particular immune profile. This is AMAZING! https://www.zmescience.com/science/experimental-trial-cancer-complete-remission-02725735/

Only 18 patients, but 100% success! No surgery.

The patch for the National Cancer Institute shows a man fighting a crab: Cancer, the crab. Dr. Rosenberg talked about Sysiphus, who was rolling a stone up a mountain eternally while it rolled back on him. From here: Later legend related that when Death came to fetch him, Sisyphus chained Death up so that no one died. Finally, Ares came to aid Death, and Sisyphus had to submit. In the meantime, Sisyphus had told his wife, Merope, not to perform the usual sacrifices and to leave his body unburied. Thus, when he reached the underworld, he was permitted to return to punish her for the omission. Once back at home, Sisyphus continued to live to a ripe old age before dying a second time.

Maybe the stone has reached a resting place. Blessings and peace you. Please peace me.

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mother

It is my mother’s birthday today, May 31. She died in May 2000. Helen Burling Ottaway and I miss her daily. Hugs to all the mothers and the fathers and everyone who has lost their mother one way or another.

I took this photograph in the mid 1980s, borrowing a camera from a friend.

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website ethics and mine

Two days ago I wrote to the owner of the website that “separated” me for “not explicitly breaking the rules”.

I have not gotten an answer.

Doesn’t matter, you say. I disagree. I think our ethics matters and it matters on line. Isn’t that part of what we are fighting about?

Let’s drill down. The editors stated on this obscure not to be named site that they were tightening rules and removing write-ups that should be logs or are just not high enough quality, and letting the writers repost them as logs. So far they have removed over 250 of my writeups. Ironically, I was one of the two most prolific writers in the last year. Let’s kill the golden goose because she’s annoying, won’t we? The other writer has not been “separated”.

I note that they have removed my write up called “birth of ——–“. Now, this interests me. This was a well received write up, had up votes, and was the start of a category. The category was people explaining how they chose their on line name.

So: the editors are liars and abusing their power. They have removed a well received and well liked write up because they have personal animosity towards me. I have protested the removal of 250+ writeups and asked that they be reposted as logs. No answer.

The other writeups in the how I chose my name category are still there. So this is PERSONAL and the editors of the site are unethical.

Therefore, I hope the site dies. Or gets rid of those editors. I think I want it to die, even though it has writing by my sister. This does matter. As a species, we will either learn to be fair and human on line as well as off line, or we will end in conflagration. The site will certainly not be there if we start lobbing nuclear bombs at each other. The owner works for the US government. Why is he/she not paying attention to this obscure website that he/she owns?

Whether or not the world burns this month, if the editors are manifestly unfair on the site, the site will die and deserves to die. I wish that I could have my sister’s drafts before it shuts down.

I ended my email that is not answered with this: Good luck. I hope that ethics matters to both of us.

Thank you.

on line site name

_______________________

I will not name the site here or anywhere again, until and unless those editors are shut down and the site becomes ethical.

We are fighting this fight as a species, as humanity. We have to learn to be as ethical on line as we are in person. Well, you say, some people AREN’T ethical. Yes, that is true. As a rural physician, my goal is to take care of ANYONE WHO COMES IN. The emergency room physician cares for the family of four hit by the drunk and the drunk too, even if there is a dead child in the family of four. We set our judgement aside and do the best for each and every patient, regardless of the story. At least, that is the goal. It is the highest goal I know of.

Blessings and be your ethical self on line. As my children said to me when I threw their father out of the house once, “We don’t care what he does. We want you to be polite to dad no matter what.” And they were RIGHT! We answer to ourselves and to the Beloved and to our children.

Blessings.

The photo is me and my sister, dancing before my wedding in 1989. She died of cancer in 2012.

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memorial

Today is my sister’s birthday, Christine Robbins Ottaway. She died of breast cancer in 2012 at age 49. She had gotten stage IIIB breast cancer at age 41. She went through mastectomy, chemotherapy and radiation and was clear for two years. Then it recurred and she returned to treatment, rounds of chemotherapy, a gamma knife radiation, another gamma knife and whole brain radiation. She was very very strong and tough and fought the cancer right up until the end.

This photograph was taken at my father’s 70th birthday party, in 2008. My friend Maline took the photograph. She and other old friends gathered and we sang the family folk songs.

Here is a drawing that my mother Helen Burling Ottaway did in 1978 of Chris. My mother always had a sketchbook. This is one she sent to me, because I was an exchange student in Denmark that year. At Christmas I received the wonderful sketchbook with my mother’s comments. My sister was 14 when I went to Denmark and I was 17.

Chris Ottaway by Helen Ottaway, 1978
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Sorrow

I used to stop by more

but the people were less and less

the interactions faded to grey

I didn’t feel loved

I used to be ok with that

not feeling loved

not feeling valued

but now I want to be loved

And I am loved, to my surprise

as if a little love

has opened longing

so that I want more love


I want to be loved and feel loved

I send everyone love

even those who have been mean

and the incessant downvoters

and those who have me blocked

or don’t answer or ignore

or leave the catbox when I show up

I send love to you too


but now that I have a small crack

of love in my life, like the sun

shining on a crack in concrete

the seed stirs in sun and water

and grows

written 12/26/17. I wrote this about another writing site. It is falling to bits, like a old building not maintained. It makes me sad, because it is where my sister used to write. She died in 2012 and I still often miss her.

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Damaged or blessed?

Am I damaged or blessed to have PANS?

Damaged because it has put me out six times? Four times with pneumonia, once with preterm labor, and once with mononucleosis. Plus getting really sick with strep A as a kid, an earache that had me crying with pain at age 8, coughs in medical school that would hang on for six weeks and not respond to albuterol. Only rest would help. A year this time and not better yet, 6 months out last time and then seven years working half time. In 2012 out two months. 2005 out two months. Preterm labor out 6 months. Mononucleosis: dropped ten pounds and did not feel better or gain it back for two months. How much income have I lost? A lot. Am I damaged?

Blessed because I am not dead? My sister dies of cancer at 49, my mother at 61, my mother’s father at 79. All three married people who had “anger issues”. And all three got cancer.

I think that they had anger that they could not reach.

I do not think that ALL cancer is buried, unexamined, unresolved anger. But I am starting to see a medical pathway that could lead from buried anger or other buried emotions to illness and death. The buried emotions are stressful. The body tries to hold the stress. The body works very hard at it. The conscious mind is not aware. This is the realm of the unconscious. The stress, the unresolved trauma, anger, grief, whatever, triggers antibodies. Heightened sympathetic nervous system, higher adrenaline and higher cortisol. Cortisol is the steroid system. Steroids help to lower inflammation but they also impair the immune system. The immune system is chronically suppressed, trashed, and then it can’t do its job. Anti lysoganglioside antibodies form and block the lysogangliosides. The lysogangliosides are supposed to clean house in the brain. They can’t clean house, they are paralyzed. And the brain forms plaques: dementia. Or some other antibody forms that blocks cancer removing cells in the immune system: and there it is. Cancer.

We all have cancer all the time, that our immune system is removing. That’s a little weird to think about, isn’t it? So we need healthy immune systems, we need the parasympathetic nervous system, we need to relax, we need to play, we need to laugh ourselves silly at stupid cat videos, we need to make ridiculous memes go viral on TikTok, we need to use the power of the internet to drive the cost of a share up just to fuck with the rich Bosses, because we are tired of them fucking us over.

So, says my sig other, or he who used to be. You need to avoid stress, in order to not get sick again.

Well. I stopped eating on Saturday a week ago and ate minimal calories and mostly high protein and fat. Because I was pretty sure he was breaking up with me. He felt the same about me. I was terrified when we walked two days ago, so I wore the dragon shirt. Most of all I wanted not to yell.

Neither of us yelled. We both listened. He doesn’t know why he has shut me out of three areas of his life, and the three most important ones. It isn’t me. He is aware that it is him. He was not really aware that he was doing it. I am trained to hide emotions, from childhood in my crazy family and then physicians are trained as well. I cry with patients sometimes, when we find that their cancer is back, or other things like that. The child dying. But I can hold a calm expression even when a person tells me that they are hearing voices telling them to kill themselves and would I please take out the antenna in their tooth. So I sat hard on my emotions for ten months. Until I thought the right time had come.

Even then, I did my best and screwed up. We’d opened up one thing and I thought the rest would be ok. I sent an email. Whoa, boy, it was NOT ok, and I got yelled at. I burst into tears. I didn’t feel like yelling at all, I was crushed. But it is ok, it had to come out. The Year of the Ox is almost over. I hope the Year of the Tiger is less horrible. But at the same time, I would not trade the time with him for anything.

Damaged or blessed? Cursed or blessed?

Both, I think. All of us.

I am submitting this to today’s Ragtag Daily Prompt, though it is not a hawk.