Saturday, August 13, 2016


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.