JUNE - where has it gone? National Caribbean American Heritage Month. LGBT Pride Month. PTSD Awareness Month? African-American Music Appreciation Month.

   Perhaps I haven't written all this month - despite the many issues and causes -- because I've had my mind on my cancers.  I admit I am somewhat absorbed by the process, as well as the side effects. The way I look has also been somewhat absorbing - although I find selfies aren't the best way to capture the process.  I have two cancers - - ovarian and endometrial.  Most of it was removed by way of an operation ( non-invasive luckily ) but they feel they have to try to kill anything that might remain.

Here is one photo I took to show my red face and wounded chest sores,  as well as using a wonderful cap I bought through the Internet and a beautiful turtle scarf given to me by my friend Jim.   The redness is from Dexamethasone a steroid.   I am not sure why the sores form on my skin. A type of burning perhaps.  Why I take a steroid isn't totally clear to me. I do remember my mother's Bell's Palsy -- the first time around the time of the Rosenberg's execution when there were no steroids and she had to sit in a dark room for days and months I think to heal.  The second time was much later but unfortunately my father was dying of horrendously painful bone cancer. My mother was his caretaker - impossible for an 83 year-old woman to care for an 83 year-old man who couldn't move.  But this second time she was cured rather quickly with steroids.

This one I took at my first chemo.  I had three chemo treatments with 3 weeks in between, starting in March.
That took me up to May when I had 3 radiation treatments -- one each week for 3 weeks. Radiation seems less intrusive in my case. Don't think it's true for others. One finds out that no one else is going to be able to tell you what you will experience. CANCER IS DIFFERENT FOR EVERYONE!  

 My hair started to fall out after the second treatment I think. Or maybe the third.  This shows areas of thinning.

So I decided to get a professional hair cut from Don Morand who has been haircutter to the stars for many many years. So much so that his stars are going to be very upset when he has to retire, which I think he finally does at age 85!! He has lived in a beautiful little funky cabin that my mother owned for years. It has no street access so feels very much like the country, even if it is located above a freeway.

Below are some photos of how to cover a bald head. Scarves and tattoos are good. I'm pretty lazy so I wear the "sleep caps" mostly.  I'd rather wear nothing in the heat.

 

 

 

In the photo above I was practicing tying scarves with beautiful Janice Ramkalawan, one of my oldest friends. We were at Echo Park Lake.      
Here I am with very red cheeks - the first day after a chemo treatment.  It's a reaction to the steroids they give us the day before and morning of.  Not sure why.
I take so many meds --  Dexamethasone is the steroid.  Ondanestron (Zofran) for nausea but it has side effects (they all do).       Cetirizine (Zyrtec) to prevent possible allergic reaction.  Famotidine (Pepcid) because there is always stomach upset.   I can take something called prochlorperazine for nausea and vomiting but for some reason I haven't had that reaction.

After a day I have to take much more for an upset stomach.  These pills are very binding.
I take senna, Magnesium, Milk of Magnesia and more sometimes.
I try to drink a ton of water every day.

This is a photo of my hair almost gone.
The bald head with the turtle above was an idea I got when
looking for henna tattoos.
I am hoping my son-in-law can do it since he is a fabulous
artist.  I bought some henna and applicators. We'll see.
It washes out eventually anyway!

Best is if you can eat really healthy food -- especially protein. I'm a vegetarian but I eat nuts, beans, miso, and mostly fruits and vegetables.  Rice noodles are good. Bok choy is great.  But lately I have been sneaking in fish since I love it and it does give me a bit of energy.  Not enough energy of course.

Today after my 4th chemo treatment I feel like sleeping all day. But I also don't want to sleep that much. But sleeping is healing.

My darling friend Linda Perez came to visit me and Brian at one of my chemo sessions!! That was such a treat! She is so gracious and generous.

She is a new grandma now too! Congratulations Linda.


To the right is my first effort at typing a scarf.  It worked okay but looks better with a bit of hair sticking out. And I don't have any at the moment.

So Brian generously shaved my head after it mostly fell out.  It is very difficult to shave a bald head.  It isn't as smooth as you think -- it has crevices and dents, etc. etc.   So he found a way to go back and forth in a rhythm that was very effective. It took a long long time to do, and it was cold and almost raining the day we did it.  Felt good though.

During the 3 weeks of radiation and 3 weeks before the next chemo my hair started to grow back a little bit. Even the eyebrows grew some.
It is very hard to apply make-up if you aren't accustomed to doing it.  I cannot draw eyebrows very well.
The American Cancer Society generously gives a class in make up and gives a free kit full of it.  I used some of it and found it helpful.  But mostly I like to stay clear of chemicals, including make-up.  How ironic is it to use chemicals when you are trying to heal from cancer.  I believe they provide people with on wig - but the weather seems too warm for a wig.

Many wonderful people have suggested I steer clear of all of this and just do alternative methods.  I would but I have no idea how far along my cancers are.  The ovarian is stage 3 they say but they don't have any idea about the endometrial.  I felt more confident trying conventional medicine first.   Radiation wasn't bad because it was internal in my case. No skin effects except the usual dryness. And there was exhaustion too.  Chemo gave me many many more side effects -- some are detailed here.   One I forgot to mention is tingling of feet. Yesterday the nurse gave me the names of 3 natural supplements I could take to counter some of the effects of tingling or numbness in the feet, which unfortunately can lead to much worse effects.

My oldest friend Heidi died at 41 from melanoma -- I feel they would've caught it sooner if it had happened to her much later.  It was from all the x-raying they did of her scoliosis inflicted back.   She refused radiation and chemotherapy.  I think I can understand why -- it was just too much suffering for her to go through in her already physically challenged life.  She had scoliosis and no money to really treat it.  She suffered from Addison's Disease (president Kennedy had it).  She was brilliant, an artist, a genius. She had painted 60 paintings at the end of her life -- and UCLA even studied her end of life to show how much the mind can affect prolonging one's life.  She lived about a year and a half longer in order to paint all these paintings.  I have one -- of a duck with chicken babies she saw in Europe once.  She painted beautiful cows and rural paintings.    But here are the two things she gave me when we were sixteen -- celebrating the Great James Baldwin:

It was 1963 or 1964 and we were emotionally and politically caught up in the Civil Rights movement.  But Heidi always dug deeper than the rest of us, read the most relevant works, and sought to represent them.

I think it would help me if I went back to the book about my father and actually wrote as much as I can.  It would probably keep me going too.  But I am a very superficial person in some ways -- I feel I am alive to support the efforts of others.  All the fights going on in our world today -- we need to support peoples' efforts as much as possible.  I am mostly wrapped up in trying to support others.  At this point I think we all deserve the most support we can muster.

And I do find alternative salves and potions and liquids very important in the healing process. I use a beautiful salve for my skin that a friend made and sent.  She also sent me a healing and preventive liquid to keep me safe while around others.  My body is very susceptible to disease right now.

I also use straight Vitamin E oil on my very dry skin and it seems to help heal.  

I get very bad arthritic pain with chemo for some reason. So I found a source for a wonderful salve made with coconut oil, other oils, and a tincture of Cannabis.  It definitely helps.

I know there are lots of Cannabis products that might help but let me try to explain why I am waiting to do the healing thing once this toxic mix is over.

HEALING PRODUCTS SUCH AS CANNABIS, IV VITAMIN C, AND OTHER WONDERFUL HERBAL AND NATURAL PRODUCTS WILL POSSIBLY ENCOURAGE GROWTH INSTEAD OF ALLOWING THE KILLING OFF OF ALL THE DEADLY CANCER CELLS.  This may not make sense because I am allowing my body to get run down and tired. But I feel that this process will soon be over and I can finally do the healing things I need to do.  I'll go back to my naturopath, my acupuncture, my massage, etc.  These things are important now but part of my problem is that I can't drive much (my eyes are dry, my eyesight impaired, my reflexes are slower) so I can't go to all the alternative activities I'd like to do.  But I know I will return to my chair yoga and dance.  

I'd like to end this with a tribute to Harry Belafonte -- one of our greatest living Caribbean Americans and a fighter for civil rights and against poverty, etc, etc,  Harry Belafonte's was one of the very first LP records (vinyl of course) that my family ever owned.  He was always a hero to us.  So I learned his songs very early on.  Harry gave up an even more lucrative career to support the Civil Rights movement.  He was highly successful as an actor and singer, particularly when he sang Calypso songs. But his heart was with the struggle. He had witnessed too much oppression and experienced it as well in his young life. 

   For example, from the Bio linked below: "Always outspoken, Belafonte found inspiration for his activism from such figures as singer Paul Robeson; writer and activist W. E. B. Du Bois; and civil rights leader Martin Luther King, Jr. In the 1950s, Belafonte met Martin Luther King, Jr. The pair became good friends, and Belafonte emerged as a strong voice for the civil rights movement. He provided financial backing for the Student Nonviolent Coordinating Council and participated in numerous rallies and protests. Belafonte was with King when the civil rights leader gave his famous "I Have A Dream" speech in Washington, D.C., and visited with him days before King was assassinated in 1968."

So I thank you Harry Belafonte for your inspiration and your talent!! You have given so much to the people of the world.

   I would wish that I could do a quarter as well as you have in making this world a better place.

Sherry Skipper-Spurgeon gave me this incredible scarf from West Africa, with earrings which you can't quite see.  It is beautiful!! I'm wearing an East African shawl from Zanzibar that says "Pole Pole Zanzibar" and Hakuna Matata!     Gracias!! 

http://www.biography.com/people/harry-belafonte-12103211#early-years    Biography of Harry Belafonte.

RADIATION IS ON THE RADAR SOON - what to expect??

   I have completed three cycles of chemo in the last two and a half months, which has left me feeling exhausted, burnt, feeble, brain addled, unsteady on my feet, decaying teeth too, lips so burning I can only taste burn, tongue and glottis swollen, face red and swollen and itchy, skin in patches is swollen red and itchy, stomach aching badly, serious lack of digestive function, feet tingling with neuropathy, knees and wrists painful all the time, and more. Oddly the only sensation I don't recall is a headache this time.  I  should also mention that my body is so seriously compromised that I am open to infection from any source. Even the mold in my refrigerator could be dangerous (I know, it is to anyone!)  Just kidding. But going out in public is not a great idea at this point.

   So my next step will be radiation which I admit is frightening me even more, although I think chemotherapy is more invasive and overall affecting of the body.  Radiation is confined to the area where the cancer was found -- at least in my case -- because of the way it is administered. I promise not to go into any details because they are not good enough for polite company.  I have ovarian and endometrial cancer, so perhaps you can guess.

   I am going to share my friend Scott Folsom's account of the radiation department at Kaiser Sunset which is also where I will go for treatment.   His words are so much more eloquent and expressive than mine ever could be:  

IN THE SUBBASEMENT of a building at Kaiser Sunset – on a floor called – in an architectural anomaly – ‘The Atrium” – is the Radiation Oncology Lab. The waiting room is the atrium, the ceiling four or five floors above, all skylit+airy, ranks of seats facing large screens that summon the next patient into Radiation Therapy – into Rooms 1A, 1B, 1C and 1D, plus 2A, 2B, 2C and 2D. You meet good people in the waiting room – waiting for their names to go up on the screen. We are going to be treated. We are going to get better. This is not the dismal institutional waiting room from Aleksandr Solzhenitsyn’s Cancer Ward. Also in the seats are those waiting for patients to be treated: spouses and family members, friends and caregivers. Next of kin. They are worried. They have seen the actuarial tables. My name comes up and I head down the hallway to your room, 2B. or not 2B. Past the lead lined doors and the shielded+reinforced concrete partitions. The path is a maze of turns; radiation travels in straight lines. That stuff I learned in Physics comes in handy. I would imagine that the entry to the Pentagon Situation Room is like this, but with more flags. 2B: The Machine waits, all apple green and huge. A proton beam linear accelerator, to be specific a Varian TrueBeam™ Radiotherapy System. The internet says these puppies cost upwards of $3 million each. Helpful young technicians are eager to help – after asking a few trick questions to make sure I am who I am say I am. (The danger of someone else getting my radiation therapy must be huge!) I am laid on a table and aligned with lasers to discrete tattoos on my body: Aim radiation here! I am a specimen on the stage of a microscope – like the old Monsanto Ride at Disneyland. The table rises and pushes in, into the center of the Varian TrueBeam™ Radiotherapy System as the helpful technicians all leave the room and the door closes with a click; they will be watching the rest on computer screens – remotely targeting invasive malignancies like drone pilots in the Nevada desert. (Needless to say your cell phone stopped working the second you left the waiting room; the wi-fi here is for different purposes!) You are left alone with Your Machine, which whirrs and clicks and buzzes, rotating about you on its multiple axes, delivering death to your enemy – which is ironically you, gone ironically wrong. Alone with your machine your mind wanders to the poem by Richard Brautigan: I like to think (and the sooner the better!) of a cybernetic meadow where mammals and computers live together in mutually programming harmony like pure water touching clear sky. I like to think (right now, please!) of a cybernetic forest filled with pines and electronics where deer stroll peacefully past computers as if they were flowers with spinning blossoms. I like to think (it has to be!) of a cybernetic ecology where we are free of our labors and joined back to nature, returned to our mammal brothers and sisters, and all watched over by machines of loving grace. And as this seems to make cosmic sense the background music, which has been piped in from the eighties for this particular moment, segues to a new tune: Well now, I get low and I get high, And if I can't get either, I really try. Got the wings of heaven on my shoes. I'm a dancin' man and I just can't lose. You know it's all right. It's OK. I'll live to see another day. We can try to understand The New York Times' effect on man. Whether you're a brother or whether you're a mother, You're stayin' alive, stayin' alive. Feel the city breakin' and everybody shakin', And we're stayin' alive, stayin' alive. Ah, ha, ha, ha, stayin' alive, stayin' alive. Ah, ha, ha, ha, stayin' alive. And ironically, with a smf hat-tip to the Brothers Gibb, that’s why we’re all here …wherever here is. ¡Onward/Adelante! - smf

 Varian TrueBeam Radiotherapy System

   Sometimes I think reading all of this information is not the best way to keep calm. I know I can't be brave and positive. But I do think arming myself with information is a good idea.  Another friend who has been in remission for 15 years after he was told he should be dead told me to do as much research as I can -- do an International Google feed.  That seems a great idea!!

   But will I have the ability to read it all?  Right now my eyes are suffering. I'm surprised I can keep reading my email.  But I feel compelled to tell this story.  To share the ordeal so others won't feel alone.  WE DID NOT CAUSE OUR CANCER.  WE ARE NOT AT FAULT.  WE ARE NOT BAD PEOPLE.  Yes, we can try to be positive, but we also need to feel those deep, down, dark feelings of forboding, that this may be the last spring that I can see the goslings at the lake, or the flowers in bloom, the narcissus, the wisteria, the roses, the cherry blossoms, the imported iris, etc. etc.   I hope it won't be but I really don't know.

A guide to radiation therapy from the American Cancer Society - http://www.cancer.org/treatment/treatmentsandsideeffects/treatmenttypes/radiation/understandingradiationtherapyaguideforpatientsandfamilies/understanding-radiation-therapy-toc  

Scott Folsom's Blog -- really great to read this!  http://4lakidsnews.blogspot.com/2016/04/hollywood-high-school-teaching-career.html    

Radiation Therapy from the Mayo Clinic - http://www.mayoclinic.org/tests-procedures/radiation-therapy/basics/definition/prc-20014327  

Varian TrueBeam Radiotherapy System described -- https://www.varian.com/oncology/products/treatment-delivery/truebeam-radiotherapy-system    

If you really want to know how endometrial cancer is treated by radiation - http://www.cancer.org/cancer/endometrialcancer/detailedguide/endometrial-uterine-cancer-treating-radiation  

GETTING CANCER IS NOT YOUR FAULT

   

   On February 25th I underwent an operation to remove my ovaries and fallopian tubes because an ultrasound had found growths on my ovaries. At the age of 69, doctors recommend complete removal. Before I went under I was told they would biopsy what they found, and go further, possibly doing a complete hysterectomy.  All completed in one session with complete anesthesia. I admit I was worried I might wake up midstream.  In fact, I didn't and did need not only a complete hysterectomy (cancer was found in both the ovaries as well as the uterus) but also removal of the omentum.  What the H is that?  

noun

ANATOMY

noun: omentum; plural noun: omenta

"a fold of peritoneum connecting the stomach with other abdominal organs."

I was told that in fact I had two kinds of cancer -- ovarian and uterine -- and would need chemo, radiation, and again chemo.  The ovarian was early stage 3, but the uterine was not easily determined -- it could be stage one, or it could be stage four.

   "Although ovarian cancer accounts for just 3% of all cancers in women, it’s the leading cause of gynecological cancer deaths. Less than half of all women diagnosed with ovarian cancer survive more than 5 years. Early symptoms, including abdominal discomfort and bloating, often go unnoticed or are misdiagnosed as irritable bowel syndrome. Because there are no routine screening tests and few markers to identify groups with increased risk of ovarian cancers, most cases are found when they are beyond the point of curing. Age is one risk factor—more than half of all ovarian cancers are diagnosed in women over the age of 63. Heredity is another—10% to 15% of women diagnosed with ovarian cancer have one or more known genetic risk factors."

   I am assuming that I have to have both chemotherapy and radiation because I have two cancers. I will have a third chemo treatment on Wednesday. After this they will test me again - perhaps to see how successful the chemo has been?  Can they test for that? And then recommend which type of radiation to employ to destroy other types of cancer cells.  The radiation that was described to me sounds positively ghastly and impossible to describe in mixed company.  But the good thing is, radiation is much shorter at each sitting. Chemo takes five hours each time.

   Why did I title this "Getting Cancer Is Not Your Fault"?  Perhaps because the unfortunate part of my personal life is that I have both a sister and a daughter (and only one of each) who believe that my cancer is my own fault.  Had I been a better mother, a better sister, a better person in fact I wouldn't have contracted cancer. In some ways, I too believe this because my mother's sister died of ovarian cancer at the age of 50.  I should have been more vigilant in my own behalf.   I am finding many women have died of it, and some relatively young.  My sister claims she has gotten checked every year. Yet everyone admits THERE IS NO RELIABLE TEST FOR OVARIAN CANCER.  I WRITE THIS TOO BECAUSE I WANT WOMEN TO KNOW THAT THIS FORM OF CANCER IS NEARLY UNDETECTABLE.  WE NEED TO AGITATE TO GET MORE RESEARCH DONE.  I believe if men came down with this it's early detection would be solved! 

  Because of this I bristle when anyone tells me to THINK POSITIVELY, or STAY STRONG, YOU CAN FIGHT THIS.  To me this implies that I am TRULY at fault for my cancer, and that my will can win the fight against it.  This is highly UNLIKELY, and certainly not helpful. 

 

   My reference is BARBARA EHRENREICH - who wrote a wonderful book when she got breast cancer.  It is called Bright-Sided: How Positive Thinking is Undermining Our Country.  I hope not to offend anyone who truly believes in the power of positive thinking.  Most of what I have experienced in my life around this type of thinking is that ultimately it is pushed on us to serve the bourgeoisie. Oh yes - have I told you lately that I believe in socialism?  Really, I believe in small-c communism as well, and I always have (since I read C.Wright Mills in high school).    More recently we in this country have been subjected to "mindfulness"  - another claptrap theory of the bourgeoisie to keep us from questioning the absolutely HORRENDOUS ACTS the 1% are perpetrating on the 99%.     But here is something of what Ehrenreich says [paraphrased on her website] :       "Americans are a “positive” people—cheerful, optimistic, and upbeat: this is our reputation as well as our self-image. But more than a temperament, being positive, we are told, is the key to success and prosperity."

   "In this utterly original take on the American frame of mind, Barbara Ehrenreich traces the strange career of our sunny outlook from its origins as a marginal nineteenth-century healing technique to its enshrinement as a dominant, almost mandatory, cultural attitude. Evangelical mega-churches preach the good news that you only have to want something to get it, because God wants to “prosper” you. The medical profession prescribes positive thinking for its presumed health benefits. Academia has made room for new departments of “positive psychology” and the “science of happiness.” Nowhere, though, has bright-siding taken firmer root than within the business community, where, as Ehrenreich shows, the refusal even to consider negative outcomes—like mortgage defaults—contributed directly to the current economic crisis.

   "With the mythbusting powers for which she is acclaimed, Ehrenreich exposes the downside of America’s penchant for positive thinking: On a personal level, it leads to self-blame and a morbid preoccupation with stamping out “negative” thoughts. On a national level, it’s brought us an era of irrational optimism resulting in disaster. This is Ehrenreich at her provocative best—poking holes in conventional wisdom and faux science, and ending with a call for existential clarity and courage."

    If you're not doing well it's because you sent out the wrong vibrations to the universe.  A secular religion. Diagnosis of breast cancer brought about her reaction to this philosophy - be positive, embrace your disease, you're going to come out of this a better person.  But she says, I didn't.  I came out nastier.  It doesn't boost your immune system.  It doesn't make you wealthier either.  Still have to get chemo - but think positively while you are getting it.  This is the opposite of what we should be telling people who have cancer.  WE SHOULD BE VALIDATING PEOPLES' FEARS!!!    Watch and listen to the interview with Ehrenreich on Democracy Now:

 

   "In “Bright-sided,” [Ehrenreich] traces the roots of the nation’s blithe sunniness to a reaction against Calvinist gloom and the limits of medical science in the first half of the 19th century. Starting with Phineas Parkhurst Quimby, perhaps one of the first American New Age faith healers, she draws a line to Mary Baker Eddy, the founder of Christian Science; the psychologist William James; Ralph Waldo Emerson; Norman Vincent Peale, who published “The Power of Positive Thinking” in 1952; and the toothy television minister Joel Osteen, who preaches the gospel of prosperity."      

   "To Ms. Ehrenreich, the reliance on one’s personal disposition shifts attention from the larger social, political and economic forces behind poverty, unemployment and poor health care. “It can’t all be fixed by assertiveness training,” she said wryly."

[Related
Excerpt: ‘Bright-Sided’ (October 10, 2009)
Times Topics: Barbara Ehrenreich
The Sunday Book Review on ‘Bright-Sided’ (November 8, 2009)
Janet Maslin’s Review of ‘Bright-Sided’ (October 12, 2009)]

"Ms. Ehrenreich found that the more she listened, the surlier she became. All that shiny optimism, she said, was “like sitting in a warm bubble bath for too long.” Luckily she found other churlish comrades, scholars and doctors who were similarly skeptical of undimmed positivity. "

“We began to call ourselves the Negatives,” said Micki McGee, a sociologist at Fordham University and the author of “Self-Help, Inc.: Makeover Culture in American Life.” The group would meet on occasion and discuss their research and the news of the day. The thread of positive thinking that runs through self-help culture says, “If you dream it and believe it, it becomes reality,” Professor McGee explained. “That kind of thinking contributes to the economic bubble that we just saw explode in enormous ways. Barbara’s take on it is very important.”

   I am not interested in arguing with anyone since this blog is simply meant to express how I feel.  I think there isn't very much you can say to someone who has just been presented with a near-death sentence, or certainly a very bleak outlook for the near future -- and a great deal of pain and suffering.  Chemotherapy is not a cakewalk.  Slowly your body begins to destroy itself to get rid of both good and bad cells that might cause you to die.  You feel significant amounts of pain particularly if you already had same.  I have arthritis all over my body -- I often have to take pain pills to sleep [meaning a few times a year].  I have sought many many alternative treatments for pain, including acupuncture, chiropractic, naturopathy, hundreds of dollars worth of natural supplements:  glucosamine, MSM, turmeric, Boswellia, and more.  I have spent too much money trying to lessen the pain I feel all the time, every day, and especially when the barometer is changing.  Also when it is cold - at least for Los Angeles, when cold might mean 65 degrees. That is enough to keep me from sleeping.   Chemotherapy has the unfortunate effect on me of more than quadrupling the amount of pain I feel, so I have to writhe in pain for at least a week after each treatment.  Worse than a bad flu, I can only lie in bed and hope for sleep.

   So if I am unable to keep a bright and cheery outlook, if I sometimes snap at people, or refuse to see others, I hope I will be forgiven.  This is a completely new journey for me, and I have no idea if I will be one of the 70% who die, or the 30% who don't.  Because of this, I might decide to throw away everything I own, cash in all my money, and go for an extended (as much as possible) visit to the museums of Europe.

   

Cancer Risks - http://www.sciencemag.org/news/2016/04/irregular-periods-could-boost-ovarian-cancer-risk

National Ovarian Cancer Coalition - http://www.ovarian.org  

Barbara Ehrenreich - Bright-Sided -- http://barbaraehrenreich.com/brightsided-by-barbara-ehrenreich/   

Author's Personal Forecast: Not Always Sunny, But Pleasantly Skeptical - http://www.nytimes.com/2009/10/10/books/10ehrenreich.html?_r=3  

American Cancer Society - http://www.cancer.org