Wednesday, October 12, 2016

A LITTLE ABOUT A WHOLE LOT OF NOTHING

 

Kitties when we first got them.








   It's October 11 and I haven't written for two months.  I think that the recovery from six months of chemotherapy and radiation has been much worse than I ever imagined.    Meanwhile, we rescued two kittens from a No Kill Shelter about six weeks ago and they have distracted me somewhat from my own ailments. They are darling but full of illnesses themselves.  Viruses have given them terrible coughs and sneezing, and stomach issues. But in the end the final straw was when we saw their fur starting to fall out in places around their heads and on their paws.  We have taken them to three Vets and found that diagnosing their ailments isn't that scientific. We have forced tons of Amoxicillin down their throats and experienced their withdrawal from us.  Finally when we stopped trying to administer the meds they came back to life and happiness.  But then this skin ailment took over. So we took them to a third Vet who diagnosed ringworm.  And somehow I realized that I had a spot on my arm as well.  I rushed off to Kaiser Urgent Care to be given over the counter meds for it. But no one said, you must wash everything in hot water and hang out in the sun. You must wash everything with a bleach solution and preferably not sweep or vacuum so you can kill all the airborne spores that aren't easily killed.  No one said that it is easily spread, and highly contagious.  So now I just stay home and only go out if I absolutely have to do so.  I have applied the medicine religiously and the spots are going away (they showed up on the bridge of my nose).  But my lack of immunity to anything means it may pop up again.





   And meanwhile we are boarding the kitties at the Vet where they are getting their meds properly administered and are together in a cage. But we feel completely guilty about it. There is nothing we can do but try to get them healed, clean our house thoroughly and many times, and rid my body of any infection.  I haven't wanted to write about this even though I know that ringworm (NOT A WORM AT ALL) is as common as Athlete's Foot.  In fact, you can use the same medicine for it.  You cannot use creams on the kitties because they lick it off. But the meds, I believe, are toxic to them.  I will be amazed if these darling cats live very long given all the torture they have had to go through.


   In some ways I wish the No Kill Shelter had warned us more -- they did say they might carry some disease and to keep them separate for a week.  We didn't heed this because we have a tiny house and nowhere to really isolate the kitties.  One remedy we may try is to keep them in a separate building on our property until they test clear of the spores.  That may be best for me as well although I still worry about how their psyches are faring.  It is also very expensive to house them at the Vet.  I'm sure they are delighted to have them knowing how much money they will take in.



   Meanwhile, I still have symptoms that don't go away.  I have neuropathy of the feet which seems to be getting worse, not better. I have feet that swell up by the end of the day, so I have to sleep with my feet elevated on a towel to try to bring down the size.  I was told I need to wear a mask any time I go out in public because my immune system (two months after the last chemo) is still compromised.  I have a persistent cough and going up stairs knocks me out (my stairs - about 21 up from the street).  I am dizzy and the tendency to hit my head is fairly prominent and persistent.

   I took these photos so I wouldn't feel so badly about having them at the Vet.  They seem to be a good and caring bunch there and know how neurotic we are about this.  They are together in a cage which isn't large but is bigger than the one they lived in at the No Kill Shelter.




 

   They are free to roam in the exam room. When we visit them, we can take them out of their cage (they are together) and let them roam outside there as well.  There are no other animals in their area which is probably good.  No scary big dogs who are kept in the next room. The Vet seem to be able to keep the animals well segregated.  They only let us visit at designated times in order to control everything but they keep records of all that they do - partly because they charge for everything they do.  Giving pills, changing pee pads, throwing out poop box, etc. etc. are all written on a chart. The meds are administered in the morning early before the clinic opens.
   One day we will have to visit and have them show us how to administer pills.  It wasn't easy giving them liquid so I can imagine pills will be much worse.   Neither of us is patient unfortunately.  And I am having an operation on my wrist on Thursday and will have my wrist in a cast for two weeks for it to heal, even though it's a minor operation to remove a ganglion cyst.  I have to be put out because it is in a dangerous place over a major artery or nerve (I forget which though it seems to be both).  Perhaps that's why this blog post is titled "a little about a whole lot of nothing" because if it weren't for cancer, this wouldn't even be worth mentioning.


Saturday, August 13, 2016

WANT TO LOSE WEIGHT? SAVE MONEY? -- GET CANCER (IF YOU HAVE HEALTH INSURANCE THAT IS)


So I am not trying to scare anyone, but I am wanting to keep track of what has been happening to me, and especially this last chemo treatment.  I landed in the ER the week before my last planned chemo treatment on August 4th due to a severe attack of Acid Reflux.  And this time I did nothing extreme to cause it to happen.  The first time in the ER, after my fourth chemo, I thought it was because I ate some very chocolaty coffee infused ice cream.  But after talking with the nurse prior to August 4th I realize that this is just a side effect of the meds I had to take the night before and the morning of the chemo.  Steroids can cause very strange reactions, and acid reflux is one of them.  Others have told me that they didn't have it before chemo, and that it went away after. But because I already had it, the pain was excruciating.  My lovely chemo nurse Sunni said they would give me the steroids by IV this time.  Sure enough, that and eating very little has caused me no pain from acid reflux (GERD is probably the proper term).   At least so far - I am crossing my fingers that this will last as it is only day 9.

The next time I have to have chemo (unfortunately the death rate for ovarian cancer is 70% and I have uterine as well) this lovely private room won't exist. Kaiser, as I explained in the previous two blogs, has been taken over by an MBA from USC so it is cutting its staff as much as it possibly can without compromising care (BS - they have always compromised care - I will go into my mother's death at the hands of Kaiser hospital but that's another story).   So the nurses told us that this special unit that was for GYN Chemo patients only and advocated by their previous head doctor who unfortunately retired in April.  As soon as he retired they informed the nurses they would be moved to another building and would be serving many patients in a large room with only curtains for privacy.  This is truly tragic.  Having cancer is just about the worst news anyone can receive. Knowing that I was able to go to a small caring unit for treatment has made all the difference.

This photo is just because my amaryllis keep popping up during this fairly hot but not too hot summer. This surprising development has kept me fairly entertained.  I take the dish water outside every day to water them and they are doing well.  Still, I don't think this is normal for bulbs but who am I to question them?
   At this point I think I should explain the silly title of this blog.  I have lost about 12 pounds since this whole ordeal started.  Some of it was quite fast due to the complete hysterectomy and loss of omenta (OMENTUM).  Further weight loss was brought on by the severity of pain I felt every time I ate anything that brought on acid reflux.  I figured out finally that if I didn't eat too much, nor anything too greasy or smelly, I would avoid the pain.  This time it has worked. I have lost more weight since the last chemo, but it is due to eating very very little.     Unfortunately I think I should eat very little for the rest of my life.  I don't really need much.
   As for saving money, that was truly serendipitous.  Although I sit and read catalogs every day and find books or appliances or clothing that I desperately want, I still don't spend as much money as I did when I was perfectly healthy and mobile.  I would say I spend a third less.  No meals out with friends, no unnecessary purchases from something glimpsed in the various stores I pass, no trips to my favorite places (Berda Paradise thrift shop, Ten Thousand Villages, Grassroots  Health food store in South Pasadena, etc.).  Somehow it isn't the same. I am proud that I am spending less money and know that I want to cut down even further.


   So here are the two darling girls who should be the center of my life.  Elena is ten years old and Dakota is five.  They are the daughters of my one daughter Jennifer, but have different fathers.  I never see them and have never met Dakota.  They are lovely children.  I hope one day to see them again.

 I am reading this book - I think Alma Flor Ada or another person with experience of cancer recommended it. It's highly readable and makes me feel I can follow his recommendations without too much stress.  So many people have given me advice that it has been difficult, especially with diet. GIVE UP COFFEE, EAT ONLY PROTEINS AND GREENS, EAT ONLY GRAINS AND VEGETABLES, ETC.  The one thing that all diets agree is that NO SUGAR - that is a certainty! Somehow sugar contributes to the growth of cancer cells.
   But another part of this book truly grabbed me:  Chapter 9 is "The Anticancer Mind" and basically he comes to the conclusion that "no psychological factor by itself has ever been identified as being capable of creating that bad seed [of cancer]. In other words, nothing permits us to state that psychic trauma can be the sole cause of cancer."   However he does say that certain conditions can "profoundly influence the soil in which the seed develops."  He then goes on to tell us about his own history which includes separation from his wife after their child is born, and the effect it has on him. He talks about a "Type C personality" - "psychological characteristics" that make up the person who gets cancer. [My own knowledge of people I know refutes this analysis but I still find this interesting.]
   I will quote this part in full because unfortunately it seems to apply to my own life:
"Those exhibiting this type C personality are often people who, rightly or wrongly, never felt fully welcome in their childhood. Their parents may have been violent or irascible [my dad], or simply cold, distant, and demanding [my mom].  Often these children received little encouragement and developed a feeling of vulnerability and weakness.  Later, to be sure of being loved, they decided to conform to the best of their ability to what was expected of them rather than follow their own desires.  Rarely angry (sometimes never!) they become "really nice" people as adults..."always ready to help others"..."saints!"  They avoid conflict and put their needs and aspirations on the back burner, sometimes for the rest of their lives. In order to safeguard the emotional security that they so value, they may over invest in a single aspect of their lives: their profession, their marriage, or their children.  When this investment is suddenly threatened or lost--by a professional setback, a divorce, or retirement, or simply when children leave the nest--the childhood grief returns.  Often it is more devastating still because it elicits the feeling that whatever one does, emotional suffering is inescapable."
   Dr. Schreiber says this is no longer accepted scientifically but he included it because "it drew attention to the role of an important factor in cancer development--the feeling of helplessness, which has since attracted great interest and been the subject of a large number of scientific studies."
   We cannot subject humans to tests of this, but scientists have subjected rats to situations of helplessness and shown how rapid is the growth and spread of cancer in them as a result.      He then asks the question:  "If the experience of helplessness and despair promotes cancerous growth, will a state of serenity, on the contrary, slow it down?"   Most of his observations are anecdotal but he refers to other similar studies made to bolster his argument.



I have never felt serene, I have always been anxious.  It might be difficult to become serene now. One good thing I am doing is not drinking coffee -- just a couple of swallows in the morning to try to stave off the inevitable headache.  I drank coffee from about the age of 11 and have never stopped. I created a false energy for myself by drinking coffee, smoking cigarettes, and eating bad sugary foods (croissants, ice cream, etc).  This was my basic diet for many years. I thought I would die at 30.   I had a love-hate relationship with food. I hated being the fat little girl that I was so when I got away from home I started smoking, drinking coffee, and eating very little. I lost 20 pounds and stayed that way for many years. Even when I was pregnant I looked like a skeleton.  It was only when I gave up smoking at age 50 that I gained more weight than ever in my life. I am an addict. I freely admit it. Just not enough to seek the help that I needed.
   So serenity is not in my makeup.  Anger is, depression (anger turned inward they say), fear, anxiety, are mostly what are there. So I'll have to find some other way to live. Is that possible?  Can I just calmly cultivate my garden, write my memoir, and quietly pass away? Or will I always have to run out to the nearest and latest cause and join my voice in a chorus of 'OFF THE PIG' or whatever it is we yell these days?  Or eat out with friends even though I can't enjoy food at restaurants anymore?


Or perhaps I can learn from Emily Dickinson.  In any case, I would like to change whatever it is that will help those cancer cells disappear and not return. Somehow being serene inside does not seem very likely.  But perhaps I'll try to emulate my friend Robin who had breast cancer and gave up anger. She has been a great survivor!

Here is where I'd like to be in future - at the next Sauti Za Busara concert on the island nation of Zanzibar. I went in 2015 and there wasn't one in 2016. In any case I couldn't have gone. But maybe next February and I can meet and talk with some of the Maasai to find out how their lives are really going now that they are dispersed.  Wrong in my opinion but perhaps better than killing them.


This photo I thought came from the parade prior to the concert (three days I think of great music from all over Africa).   But it may be for some other event.   We met Maasai everywhere but especially on Zanzibar. They sell jewelry and other crafts at the event.

Here is Brian buying a painting at a cooperative of artists. The sales benefit all of them. It's a very tough and competitive market now but this is really the best way to do it.  This was in Dar Es Salaam.

So my future will involve more travel I hope, and perhaps going places I have never gone. But part of me wants to return desperately to Tanzania where I lived long ago in 1971-72.  And I would like to give money and help Salma Babu open a school for girls on the island of Zanzibar in the name of her wonderful father Abdulrahman Mohammed Babu.

Babu Family - Babu, Salma in his lap, Abdi, Ashura with Mohammed in her lap.


Sunday, July 24, 2016

DAYS OF PAIN AND THE ONLY REMEDY LEADS TO MORE PAIN

 




   Part of me says this is a big mistake as a blog post since it will only serve to depress people. The other part says I need to write this for myself and apologize to anyone who might be offended by it.

   On February 25 I underwent a complete hysterectomy while the wonderful surgeon biopsied the growths  found in my ovaries, my uterus, etc. as she went, finding two kinds of cancer, unfortunately. One was 3rd stage ovarian, the other ? stage uterine.  The operation should have taken care of all the cancer they found, including removing the omentum .  YES - this is a real thing and you can read about it on the link.  Some of my details are much too gross to write about.   What seems remarkable to me is how this was all done in one operation, with three small incisions, and my recovery was quite rapid.  A friend who had a hysterectomy about 15 years ago took six weeks to recover.  I am grateful for the advances, some of them, that have been made in medicine.



   I began my issues with pain at about 50 years old - serious arthritis in my left thumb, and inability to move my head completely (due in part to hours spent on the computer which I started using in about 1980 and have used ever since on every job I've had).  At first I dealt with the pain using alternative methods - luckily found a health food store across the street from my school - 32nd Street - where I'd been hired as the Teacher Librarian.  I have a long history with that school, starting in 1965.  Anyway, this wonderful man from Gambia ran the health food store serving the African American community. He didn't make much money but I think ran it out of love.  I could tell him my symptoms and whatever he recommended always did the trick.  I moved away from 32nd St in 2002 which was a big mistake, since I stopped going to my friend Mr. Braithwaite for advice.  He cured my neck pain back in 1997 with Glucosamine and MSM.

   So what was this pain a sign of in my life that needed to be changed?  I was starting a totally new profession at the age of 50, I had to work 8 hours a day, and then attend college on weekends, with loads of homework.  I still had a teenage daughter at home. My life was complicated. Perhaps too complicated for my nervous system.  I've long thought that had I been born in the 1700s or so I would not have survived because I was born with allergies, and never did have a strong nervous system.  But as Dr. Gabor-Mate might have explained, I was also born into the time that my parents were fiercely persecuted by the federal government. My anxiety and fear had a basis in fact. My father was in danger of being executed.  I was merely reflecting the fear of my parents which they tried to hide, but it was impossible.

           "The brain is affected by the environment not only during critical periods of early childhood development, but throughout the human lifetime. In Hold On to Your Kids, co-authored with Dr. Gordon Neufeld, Dr. Maté provides insight into the environmental factors necessary for healthy child development."

    Back to the question of pain, which I have been enduring these past five months, and have tried to understand.  I have had to undergo six sessions of chemotherapy which were broken up by three sessions of radiation.  Radiation, although uncomfortable, did not seem to have side effects. So for about 9 weeks I was fairly symptom free.  But the chemotherapy, unfortunately, is much more fraught with side effects that leave one feeling hopeless, helpless, and desesperada.  Not quite desperate, but with an emotion that I somehow cannot explain in English.

   Two WORDCLOUDS about my pain:



I never imagined one could experience so many side effects from a medication. Of course I stupidly forget that chemotherapy is meant to KILL the cells in your body -- but what I don't understand is why they aren't applied more selectively.  For example, in my case, internally the drug could be applied in just the area where my cancer resided.  In a way, this is what the radiation therapists did. It
 was very concentrated and focused.  I'm sure I had side effects from it -- but not nearly so many.

   I asked the nurse practitioner (who is no longer there sadly) on the Oncology Gyn unit what I could do for the pain.  It was as if I had a serious flu that knocked me down for at least a week, and now ten or 12 days.  Wonderful nurse that she is, who believes in marijuana use for some things, and wants to run for president on the marijuana ticket, told me to use pain meds.  She generously gave me enough to last a lifetime -- only because I can't really take them.

   So the only remedy for all this pain is more pain.   Did I mention that for the first few days I am so backed up from all the medication I have been given to prevent nausea and vomiting that the effort to go is enough to make you feel like committing suicide or a crime.  I have never experienced such horrible pain before.  Childbirth in my experience was not painful - I know, that isn't really fair.  But I had no real contractions.  It was a strange birth process.  But since then I have experienced many other painful episodes that have left me breathless.  This one was the worst.

   And I cannot take the pain meds -- they don't really help me except to give me a few hours of sleep. And the result of taking them is even more pain. And probably light headedness and dizziness which are also new symptoms.

   Now they tell us that serious pain medication has led to suicide.    People are taking too much of it. So they won't prescribe medication that actually works.  When my father was dying of bone cancer, a pain that radiated from the top of his head down to his toes, they gave him morphine.  I watched him writhe in pain when he thought we weren't looking.  He had been six feet tall and probably 180 pounds of muscle and bone, not really ever fat.  I looked upon him nearly as a skeleton as he shrank away to nothingness with bone cancer.  A humane society would provide him with all the dope it could find, and in fact speed up the pace of his death.   A wild and wonderful friend later told me I should have "scored some heroine" for him on the street. As if I could've done that. But I do wish I had.

Some of the pain meds I have used in the past:   [one I believe affected my developing acid reflux]



 






   Actually I never did try oxycontin - though it was available in Costa Rica over the counter strangely (while more common drugs had to have a prescription).  I can see how people could be hooked on one of these or more.  Pain is debilitating, exhausting, enervating -- it takes away your will to live, your joy of life.    Luckily I have had luck with MSM as I said, as well as acupuncture.  Before this last infusion I went to an acupuncturist in Silverlake.  I truly think it helped but not as much as I would have liked.

   By the end of August I hope to be finished with all my chemotherapy and on the mend. Most importantly I need to resume my four day a week exercise schedule.  Preferably I would like to get a pool put in my backyard so that I could swim every day. I am convinced this is the perfect exercise for people with arthritis.   Meanwhile, I wish with all my might that capitalism goes away, socialism is installed in every country, and all our money goes to finding a cure for cancer instead of starting wars all over the world.  

 


Greater OMENTUM -   https://en.wikipedia.org/wiki/Greater_omentum 
Dr. Gabor Mate - http://drgabormate.com 
Free online word generator - http://www.wordclouds.com 
Irina Tsoy Acupuncture - http://www.irinatsoy.com/Home.html 

Friday, July 15, 2016

JULY 14TH - FROM TEAR GAS TO CHEMO -- FROM PEOPLES' PARK TO NICE, FRANCE AND ECHO PARK TOO.


 

   Today over 70 people so far have been counted as killed by a "suicide vehicle weapons attack" in Nice, France-- on BASTILLE DAY - which has actually been superseded on Google by reports of the attacks and murders of people in Nice.  Now up to 75 as I write this.  On Bastille Day it says:  
"The French National Day commemorates the Storming of the Bastille on 14 July 1789,[1][2] an important event in Paris in The French Revolution, which had begun two days earlier,[3] as well as the Fête de la Fédération which celebrated the unity of the French people on 14 July 1790. Celebrations are held throughout France. The oldest and largest regular military parade in Europe is held on the morning of 14 July, on the Champs-Élysées in Paris in front of the President of the Republic, along with other French officials and foreign guests.[4][5]"  Most important was :    "The French Revolution (French: Révolution française [ʁevɔlysjɔ̃ fʁɑ̃sɛːz]) was a period of far-reaching social and political upheaval in France that lasted from 1789 until 1799, and was partially carried forward by Napoleon during the later expansion of the French Empire. The Revolution overthrew the monarchy, established a republic, experienced violent periods of political turmoil, and finally culminated in a dictatorship under Napoleon that rapidly brought many of its principles to Western Europe and beyond. Inspired by liberal and radical ideas, the Revolution profoundly altered the course of modern history, triggering the global decline of absolute monarchies while replacing them with republics and liberal democracies.[1]Through the Revolutionary Wars, it unleashed a wave of global conflicts that extended from the Caribbean to the Middle East. Historians widely regard the Revolution as one of the most important events in human history."

   And tonight a helicopter has been circling over my house for 3 hours and we don't know why. Can't ever find out from the news. And there were many cop cars coming into the street. I don't go out to find out -- don't trust the infra-red technology used to find warm bodies.  Is this being influenced by the attack in Nice, France?  Here's an NPR story about LAPD helicopter policing.






On July 14, 1969 I was working at Yenan Books in Berkeley, selling books from China. It was run by a collective and no one made any money off it. Right next door to us was "Peoples' Park" where folks had gardens, hung out to smoke dope, and just have fun.  An empty lot with trees and grass, how could you lose.  And it was in the busiest part of Berkeley not far from the university.  Meanwhile on campus there was a demonstration against the university turning the park into a huge parking lot.  I of course agreed with this sentiment so I went over to the campus to check it out.  Or perhaps I was still in my summer school class and went outside to join the demonstration, I hoped.  I was met with such ferocious tear gas that I had to retreat to the closest bathroom and try to wash it out. I wasn't prepared with a wet cloth to hold over my face and my body just couldn't withstand the attack.  I felt like such a wimp.   Physically I was weak, emotionally I wanted to be there to support the demo. But it wasn't to be.  See https://en.wikipedia.org/wiki/People%27s_Park_(Berkeley)   which explains the mess in Berkeley, including the death of a worker [student] by buckshot and gassing 30,000 Berkeley citizens indiscriminately.  Governor Reagan was in charge, though I doubt many other governors would have done differently.

"1969 July 14 (Bastille day) Protestors march from Ho Chi Minh (Willard) Park to People’s Park. Organizers have wire clippers, baked into loaves of bread, and lo and behold - the fence was down. Police attack and a riot ensued."  Apparently this was not a big deal compared with other demonstrations against the University.  Seemed so at the time to me.  [See blog about UC Berkeley for a history -  https://barringtoncollective.org/files/Disorientation/Disorientation%20Zine%202004.pdf    ]
We were living in a police state with national guardsmen at every corner. At the time I lived in south Berkeley close in a Black neighborhood. We felt the guardsmen were provocative since African Americans were not involved in Peoples Park. Here are two photos that seem indicative of the times. I did have a boyfriend then who picked up a tear gas canister thrown at us by the police who then threw it back at them. Don't think this is him. He was working at a university office at the time and was fired.  The police picked him up bodily and threw him against a wall.  Months later we had Moses Hall demonstration to protest the University's refusal to hire Eldridge Cleaver because he lacked university education. Funnily they hired true believer Eric Hoffer and gave him an office. He'd never finished high school.  My boyfriend was the first the police came for to arrest at Moses Hall - a shock to me since he was new to Berkeley. But he had a long active history that followed him around the country.  Like so many young people then, he now works for the World Bank and doesn't think our views were right.  I had told him at the time I knew he didn't care about the struggle -- he was fighting his own demons.


    Being gassed by tear gas or pepper spray - not sure which -- was linked in my mind to my chemotherapy session today.  Bastille Day 1969 was painful but not as bad as Bastille Day 2016.  And then I came home and turned on the television to the attack in Nice, France by a suicide driver of a truck who killed 75 people (84 count July 15).  So what more could go wrong on Bastille Day?  And what role do chemicals playon this historic day?   Here's a photo of me at Kaiser on the Obgyn Oncology unit, specially set up for patients with gynecological cancer issues. We have private rooms or shared ones with TVs.  The nurses are fabulous and the setting is quite lovely. Up until April of this year the head of the unit had advocated for this special place. He retired, and Kaiser is now breaking up the unit.  Why? to save money? To force the nurses who are already under another management to be spread thin so they don't have to hire more?  These are nurses who have settled with Kaiser unlike the ones in the hospital, who demonstrate periodically. Kaiser has successfully divided and conquered these strong nurses.



   All of this makes me wonder about health care. France has the best health care in the world - or they did at the time Michael Moore made the excellent movie SICKO.  One can get amazing health care in Cuba despite the fact that Cuba is a very poor country.  So meanwhile, Kaiser, which originally was the closest my parents could find in 1954 when we moved to L.A. to socialized medicine, is now being run by USC MBAs who give the CEO his highest profits.  Apparently he is competing with other CEOs of "nonprofits".  Such garbage. The entire country is being privatized by the greedy 1%.   Oh excuse me - I misspoke. Here is a quote about the compensation  earned by the CEO of Kaiser back a few years:  "Other top CEO earners for 2012 included George Halvorson, then in his last year as CEO of Oakland, Calif.-based Kaiser Permanente, who received $9.9 million in total compensation in 2011, up 24.6 percent from the prior year."   Why was such a low figure as $800,000 bandied about last year when the nurses were striking? Clearly to show that the CEO was just a modest earner.
   And more -- Kaiser Los Angeles now makes us pay exorbitant fees for parking in lots that were built years ago, and whose parking attendants have long ago been fired. No over head. This is pure profit. And as my nurse today told us -- many of the poorer members can't afford to park and wouldn't come for treatment if they nurses hadn't fought headquarters to give them the power to cover the parking. So we are lucky, for 5 hours we can get our parking validated. But not for much else.



   So Kaiser is now run by a USC MBA who is cutting corners everywhere.  He/she is sending all patients to be put in a huge room with only curtains to divide them to go through chemotherapy. No privacy, no special care.   He also has understaffed the Family Practice doctors -- mine is excellent but he now has twice the patients he had.  He is a tough guy and keeps up with it. But I know he doesn't like it.  He has always listened to me and supported me. Even commented when a surgeon told me that my acid reflux was all in my head.  He never says no to a procedure. Or rarely. He only says no to meds.  But most all of the doctors are told not to give painkillers or effective sleep meds. Ridiculous!

It's 9:45 on Bastille Day eve. The helicopters stopped finally around 8:20. I have no idea if they found who they were looking for, but I doubt it.   None of this will be in the newspapers since they like to let us think this gentrified neighborhood doesn't have crime.  Of course it does.  Nothing changes that  quickly and gentrification just brings more hatred and more crime.

I hope one day the people of the United States wake up and take to the streets as they have been in France. Something that is never covered by the mainstream media owned by the 1%.  Only the World Socialist Web Site  covers these magnificent strikes.


   HERE IS MY FAVORITE IMAGE FROM THE 60S - Hippies they say putting flowers in the ends of the bayonets of the National Guard occupying our city and our university.  Make love not war essentially was what they told them. And that we understood that most of these Guards were just poor people who enlisted so they could get a job or pay for college education.  Essentially true.  [And still true.]




It's 10:05 pm and the final count in Nice was 80 people killed.  Probably more tomorrow.
Yes - July 15 - 84 people killed.  [See below.]


Additionally some images of my bookstore Yenan Books - no real information exists about it.  I have a photograph of it that I found amongst my old stuff.  It was a great experience. Other members told me they sold books to famous people. One I remember was Jane Fonda married at the time to Tom Hayden.  The first photo is of Judi and Tim - two of my favorite people who worked at Yenan standing at the front of the store.







This is another story I have - Dr. Ma Haide who was Mao's physician in Yenan, who marched with them during the long march, who wiped out leprosy and certain venereal diseases and who married Su Fe, a beautiful actress he met in Yenan.  I had the honor of meeting them at my parents' home when he finally came back to visit the United States after 50 years gone.

[Latest count in Nice -- 202 hit, 52 seriously injured.  84 dead so far 10 were teens or children. ]




LINKS:
Bastille Day as defined by Wikipedia - https://en.wikipedia.org/wiki/Bastille_Day
LAPD helicopter policing - http://www.scpr.org/programs/airtalk/2015/03/10/41901/criminologists-debate-lapd-s-predictive-policing-b/  
History of Peoples' Park - https://en.wikipedia.org/wiki/People%27s_Park_(Berkeley) 
History of Berkeley Protests in Pictures -- https://www.theguardian.com/us-news/gallery/2014/nov/15/berkeley-a-history-of-disobedience-in-pictures
Sicko - https://en.wikipedia.org/wiki/Sicko  
Pay Hikes for non profits -- http://www.crainsdetroit.com/article/20140811/NEWS/140819983/another-year-of-pay-hikes-for-nonprofit-hospital-ceos
National Nurses strike for adequate coverage of patients - http://www.nationalnursesunited.org/press/entry/rns-at-kaisers-flagship-los-angeles-hospital-to-begin-one-week-strike/ 
Strikes in France happening now - we never hear about them  --- https://www.wsws.org/en/articles/2016/05/26/fran-m26.html 

Friday, June 24, 2016

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!!