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!! 


  1. You have such a wonderful attitude, Joan, and your concern for others in the midst of your medical challenges and pain is so incredibly admirable. You are going to beat this!

  2. Thank you Jane Lofton! And congratulations on your recent retirement!!