Long before I was born, my mother found that she was not able to have children. She kept having miscarriages. Then Dr. Burkholder gave her this new very high dosage hormone treatment. Specifically, DES (diethylstilbestrol), a synthetic estrogen. Well, it did the trick, here I am. I’m glad she took it. But DES did give me a lifetime of bad health, especially hormonal bad health.
I have to admit that my memories before I was 6 are not the same quality of memories as I have after that age. Child memories are stand alone stories, later when we are older the stories blend and are fluid. And much of this next bit of story is based on early childhood memory.
I remember adults saying that I was not a healthy child. My mom blamed everything on allergies. I did have allergies. I would break out in hives or asthma if I ate peanuts, shrimp, oranges, and there was also pollen. There were times l had difficulty breathing, my dad told me it was because of asthma and allergies. I remember going twice to a little clinic on Arizona St and being put in an oxygen tent. And there were other times when I was given a mask (because I was a homely child)
I was a child before the world had many vaccines. The only widely common vaccines were for smallpox and polio. Without the vaccines I got most of the childhood illnesses pretty hard. The only one that was mild was mumps. Maybe the worst was chickenpox. Fifths disease really itched and ached. Both of the measles were gross.
I was also very prone to bruising, my arms and legs were often covered in bruises. I remember someone (the school nurse?) making a big deal out of it in kindergarten. For decades I explained the bruising by saying I still didn’t have glasses and kept bumping into things. And roughhousing with cousins and friends. My legs were often more bruised than not.
The most dramatic symptom were the glorious bloody noses. I got them all the time, and everyone had a cure or a treatment, put your head back, pinch your nose, put on ice, pack your gums with toilet paper, all kinds of things. I went to a doctor at Good Samaritan who cauterized the inside of my nose, painful and smelly. It didn’t help
There were times the bloody nose would not stop. Sometimes I hid it when the nose bleed went on too long. I have vivid memories of how I would just press my nose shut, then gulp the blood clots.
Actually, only two ideas did work. Dr. Burkeholder showed me how to find the blood vessel that fed the blood to the nose, and push it against the edge of the nose bone, and it just shut off the supply of blood to the bleeding parts of the nose. To adults it looked like I was pushing near my eye. They’d tell me to stop.
Also effective was my Uncle Marcos’ cure. He suggested vitamin C. At the time vitamins were not as available as they are now, we couldn’t find them at grocery stores. So we went to the good old Thrifty Drugstore on Fetterly and Whittier Blvd, but they didn’t have vitamin C on the shelves. Then my uncle spied across the street a Seventh Day Adventist food store. We walked in and the pinch faced old white lady, who didn’t really want to see us come in, gave me the fisheye, because I was a chubby child, and really gave some body shaming looks to my Uncle Marcos, who weighed 300 pounds. But then he bought a shit load of vitamin C and other things and she lightened up a bit. The next time he was in town my uncle found for us another Seventh Day Adventist store, with a friendly person, on Figueroa and Avenue 59.
My Uncle Marcos made me very aware of the idea that we are what we eat, and what we eat will influence your health, for the better, and definitely for the worse. And he held that perspective without being a fanatic. Without trying to proselytize. The vitamin C definitely slowed the excessive bleeding.
My uncle was the first person to really pay attention to me and my health.
Read more about him here and also here.
My memory of this time is from the perspective of my eight-year-old eyes. I was experiencing a lot of discomfort. My arms and legs were always bruised badly, my shins were bruised very badly. My glands were swollen, my hips and knees hurt, and the dramatic bloody noses. And often having great trouble breathing. I remember a number of adults making snide remarks that I needed more exercise or I needed to lose weight or I read too much, and that’s why I couldn’t breathe.
Then, the final sign that something really was wrong. My parents had a dichondra lawn. They would send me out to pull weeds. I was sitting on the lawn, resenting my parents, breathing very heavily, and the next thing I knew I woke up in an oxygen tent at the little clinic on Arizona St.
After that they took my problem more seriously. Off we went to different doctors. They didn’t tell me, but I had leukemia. My parents and doctors told me it was asthma. For decades I took their word for it.
At the yarn store with two friends trading stories and I told this story. They looked at each other and told me I had had leukemia. One was a childhood cancer survivor and the other was a retired nurse. It didn't take much research to verify their diagnosis.
The treatment my mom got with DES, probably gave me life. It also gave me many hormonal problems and a couple of interesting birth defects. It is not uncommon among children born as a result of this drug, to get cancer, it gave me leukemia. It also gave my mom cancer, but not till I was 19.
I learned a few years ago, from an old oncologist at Children's Hospital, who may have seen me as a patient when I was 8, that the survival rate at that time was 5%. Learning I had leukemia gave me a new perspective of my childhood.
That old oncologist doctors guessed that the doctors saw that the cancer was probably too far along, and they probably told my parents to take me home, make me comfortable, not to tell me what was going on, and to let them know when I died.
My dad did not accept this.