Once upon a time, there was a girl who grew up healthy and frisky in a suburb of Chicago, Illinois. She enjoyed a normal childhood, dreaming about being a grownup, while sitting with her best friend under a towering weeping willow, and spending happy hours lost in good books. Health issues were nothing to think about, except for the occasional cold or flu, nothing out of the ordinary.
At the end of the ’60s, the girl became a coed at the University of Illinois, Champaign-Urbana. That’s when things changed. The changes were subtle: pain and severe cramps in the female area caused alarm. But she checked out normally. Lots of coeds, the nurse said, shared a similar fate. No big deal.
Skip a few years… While in college, the co-ed met her husband-to-be who was on leave from the army, in town to visit the coed’s roommate: his former girlfriend.
Skip another year and a half and meet the coed and Army veteran, now married and setting up house. After only eight months of marriage, the ex-coed, now a young woman, went in for her annual gynecological exam. The doctor looked concerned during the exam, and without any anesthetic (!) performed a biopsy. Then, he told her something startling: Even without the biopsy results, he suspected cancer. Of course, the young woman, just twenty-two and married only ten months, didn’t believe cancer would creep into her life. Still, she did as she was told and immediately went to visit the specialist.
All the lab results returned negative, as they had in all her previous exams (laboratory errors!) Strange, that, because the specialist found a huge tumor during the exam and confirmed the cancer diagnosis. The young woman asked the doctor, “Am I going to die?” The doctor stared blankly at me.”We’ll will do everything we can,” he said. The young woman wanted to know how long she had to live. The doctor told her two years, but with the surgery and additional treatment the outlook for a long life looked positive, as long as the tumor hadn’t yet spread. Then, the doctor looked at the young woman and said, “By the way, you will never have children.” Oh. OHHHHHHHH! The young woman and her husband did not plan on having children for a long time, as they were both too young for such responsibility, but they certainly wanted the option.
Option gone. Now it was a battle for life.
During the first week of 1974, the young woman had her cancer surgery. Though an extensive team stood by, anticipating complications, no extra specialists were needed. The surgery took 10 hours, and in the end, all looked well. After a month in the hospital, the young woman was dismissed.
Though the doctors had decided that though the cancer was clear and the tissues healthy, they decided massive doses of radiation should be given as a precaution. The young woman was not told about the complications of radiation, though, and not given the choice whether to have the treatment or not. Patients didn’t question doctors’ treatment plans in 1974. Patients didn’t get involved in treatment plans or understand ramifications from radiation.
And so, the young woman was given six weeks of radiation therapy, turned and roasted like a pig on a spit, enough radiation, said the radiologist, to be a human night light. All as precaution. The young woman asked what it meant to have the radiation. The radiologist said it was better to take the precaution and not worry about the consequences. What consequences? The radiologist told her she shouldn’t worry her head with medical matters. And as usual, the young woman acted complacently and did as she was told.
Hit the fast forward button again, a decade up this time…
The young woman resumed working full time, but now she was getting medical problems, problems she never had before. She had to have a bathroom nearby, because sudden trips became a fact of life. She went in for testing– debasing bowel tests. The tests revealed radiation colitis, a progressive, incurable condition.
Just the beginning of fun to come.
The young woman, now approaching middle age, noticed her health deteriorating rapidly. By the mid ’80s she was no longer able to work outside the home. She liked working outside the home, but her bosses knew the sick days were adding up too quickly and they couldn’t afford to have an employee who missed many days. Of course the woman understood. The young woman sadly resigned.
Next, social life plummeted. The couple loved to entertain and to give parties for their friends. But the woman’s condition worsened, making social commitments, even talking on the phone, nearly impossible. The newly developed side effects from the radiation therapy caused the woman to spend long hours in her bathroom. This was not party fodder!
The couple could no longer stand Midwestern winters, so they packed up their dogs and bird and moved Westward Ho, to a milder climate.
In the ’90s, the woman’s GI tract deteriorated further, until she was totally homebound (except for an occasional errand or dinner out– always a gamble). The couple stopped taking vacations so the woman could be home near the bathroom.
What the woman didn’t know: radiation is cumulative and many side effects and complications sometimes don’t happen for years. When they happen, they don’t go away. They worsen.
Here is a list of what the woman battles every day. Most of the problems are a consequence of radiation therapy, though some are not. There are medical problems from from head to foot.
Secondary Lymphedema (a progressive condition, causing the limbs to swell with protein-rich fluid, caused, in my case, by either the cancer surgery or radiation therapy).
Cyclic Vomiting Syndrome (abdominal migraine).
Radiation Proctitis (radiation colitis)
Radiation cystitis
Migraines
Hypertension
Vision problems.
Mitral valve prolapse. (Started after the surgery, not related to the radiation.)
Paresthesia in the bladder (Like living with a cattle prod in your body 24 hours a day.)
A chronic foot infection.
So, every day one or more of these delightful treats call out to be dealt with and managed.
The woman, despite her illnesses, loved life. She became a writer and published magazine articles in national and regional magazines. She started three novels, and later became a Web columnist for One Woman’s Writing Retreat, and in later years for Naked Humorists . She has written for other respected Web sites like Nurse Zone and others.
Still, something was missing. She wanted to connect with others of all ages, from all areas of the globe, who had been battling illnesses or physical challenge. She wanted to start an online community dedicated to people trying to live their best lives beyond their illnesses or physical challenges. And so began Everyday Warriors.
And so …
If you stuck with me this long, thanks for reading. We all have stories to share. Let’s do so. Let’s learn from each other. Why am I telling you this? Because we all need to feel connected, especially if we battle health problems. I don’t feel sorry for myself. Frankly, I’m happy just to open my eyes each day. Still, the days can be rough to get through. That’s why we need to brainstorm ways to make our lives count, to reach out to others and let them know their lives count, too, and they can contribute great things to this world.
I left out a lot here. Since you’re probably deep in slumber land now, from this lengthy speech, I’ll bid you farewell and wish you health and happiness.
Live your best life!
PLEASE BE ADVISED: If you need radiation therapy or any other type of treatment, DO NOT refuse it because of my story. Every case is different. If your doctor says you need it, discuss it, ask dozens of questions and then at least you’ll have made an informed decision. Radiation has saved thousands of lives, and if you need it, it could save yours, too. Remember: I’m still alive almost thirty years after the fact and I don’t know if the radiation treatment had anything to do with it or not and never will for sure; so, if you face this decision arm yourself with all the facts and choose a doctor who willingly addresses all your concerns
All Rights Reserved
Jillian Leslie
