During the Winter & Spring of 1991, my friend Evelyn and I were working in Downtown LA and going out every weekend. The weekend started on Thursdays. It was during this time that we decided to take a trip to Cancun Mexico – we bought our tickets in February for a June trip.
I was on a very low dose birth control pill from February to May, to try and control the heavy bleeding without raising my estrogen levels to much, when I developed a cyst. It burst in early May and sent me to the ER.
My Grandmother would have told her friends I was “not well” and the tone of her comment or the movement of her head would signify the severity of “not well”. By the Spring of 1991, I would have had only the disapproving tone level of “not well”.
I was taking a cocktail of antibiotics & hormone therapy in the days leading up to the trip to Mexico and the treatment ended about 3 days before my flight. For the entire month of May, my family did everything they could think of to persuade me to cancel the trip. I coped by working, running, going to the gym and of course drinking heavily.
At the time, my stubbornness in going on my vacation was fueled by the illness. If I was really that sick, I at least deserved a tropical vacation. I was supposed to be thinking about the side effects of Lupron and using surgery with Lupron therapy for 9 months. So if I had to have another surgery, I wanted to go out having seen the Yucatan Pyramids, specifically Tulum & Xelha and Chitzchenitza. After all, I had served my Country did my duty and I deserved something out of it…. Right?
Of course they were right. By the last week of May I was back to myself, not sick but rather healthy, and we were off to Mexico. From the get go it was a catastrophe, and it was the most exciting trip of my life. I missed my non-stop flight out of LAX and had to take another route, LAX to Guadalajara to Mexico City to Cancun. By day 5 of the fabulous 7 day 6 night Mexican Riviera Vacation, I was sick again.
Mexico was after Danocrine, but before Lupron. At the time these drugs were not referred to as chemotherapy drugs, but that’s what they are. Danazol (Danocrine) and Leuprolide (Lupron) are both generic chemotherapy drugs. Both have a maximum treatment of 6 months. When I agreed to the Danazol treatment, I really didn’t know or understand the impact of the side effects. All the literature at the time stated the side effects would wear off in about a year. It was 3 years after the Danazol treatment in May of 1991.
I was truly ill on that vacation and I am lucky I made it back to the US before I collapsed. The transportation plans for the Airport changed last minute, and I asked my Grandmother to wake me up when she got home. Well, she didn’t, and I missed the Shuttle. I arrived at the airport just as the plane was taxing down the runway to take off for Mexico. When I got back from Cancun, I heard their message to me on the Voice Mail. Through some miracle I got re-routed for a mere $50 on a multiple stop Flight from LAX to Mexico City, where I changed planes at 8am for the final leg arriving in Cancun at 10am the next morning June 6. If I was lucky and made all my connections, I could get to Mexico City and go stand by to Cancun, arriving at 8pm on June 5th. Yea, I’m not lucky – the flight was booked solid.
The first night of my trip, June 5, I spent sleeping on the floor of the Mexico City Air Port. I kept getting lost, having just previously meandered around the Guadalajara Airport before skiddadling back to my seat on the plane. It was when they asked me to go through customs, under the Great big “Bienvenidos a Guadalajara Aeropuerto” that I realized I was in the wrong place.
The second night of my trip, June 6, through June 9, I spent dancing and club hopping. It was June 6 at Senior Frogs for Dinner & Daddy O’s for Dancing. That was the night I met the Stranger. We sat at his table, we ate with his friends, and I danced with him for 2 hours, until our other girlfriends were ready. The only reason we sat with them was because they were in the window booth. It would enable us to see our girlfriends when they drove by and gave us the wave. I gave the Stranger my phone number and off we went Dancing. I never saw him again.
The cyst burst on June 9, the morning we were on our way to Cozumel. By the time I got on the plane on June 11, I was grey. I saw the doctor on June 17 and by June 26 I was in surgery. The four hour surgery took 8 with an additional 12 hours in recovery – I had a reaction to the Anesthesia. The insurance company would not authorize ovary or uterine removal, only cysts. They removed 6, including 1 in my uterus which required surgical repair of the uterine wall.
Six weeks after surgery in August 1991, I received my first shot of an experimental treatment called Lupron. The experiment was for 9 months, 1 shot every 3 months at 12mg per dose. Without it, the doctor explained, I would not live to see 28, and I might see 30 if I’m lucky. The doctor had qualified me for the clinical trial so my Lupron treatment was free. I just had to answer a detailed questionnaire. It really didn’t matter what the side effects were, my options were limited.
When I got my shot in October, I needed migraine medication.
When I got my shot in January I renewed the Migraine medication and added Prozac.
By February of 1992, I had been working in Downtown LA, living with my Grandmother in Pasadena, and visiting my doctor every 11 ½ weeks for a Lupron treatment. I would schedule them on a Thursday or Friday. That way I could drink my way through the aches, pains, migraines & night sweats that a jolt of Lupron will give you. By Monday or Tuesday I could get back to work as usual.
I was 5 weeks into the third shot – six more weeks to go– and I lost it all. Over the course of a two week period, I woke up on the front lawn when the sprinklers kicked on just before Sunrise, and then I woke up…. In an unknown location – I used the valet ticket to backtrack to my car and get home, again, at Sunrise.
I called the good doctor and begged for relief. He prescribed some Anti Depressants to help with the mood swings to compensate for the lack of estrogen. The dosage was tremendously high, and required regular monitoring. So, I went to bed.
Keep in mind; I am 24 years old, with a budding Corporate career. I made it off the Flight Line and into the Conference Room. I was on my way to the Board Room when the Endometriosis came back. I went on unemployment and disability. I moved out of the City and into Perris, the Family Vacation home. Our Cottage in the Desert.
It was my Grandmother’s idea. I had a better chance of survival if I just held on and made it through the treatment. Having an affordable, safe place to wear out the migraines and the depression and the hot flashes and the night sweats would be easier with additional therapy, was achievable with the Cottage.
I packed up my clothes and my cat and my books and my music and off we ventured to The Country. I was moved in 2 weeks before the next shot. I spent the weekend in Pasadena after the shot, and then drove “home”.
Indian Summer was Grampa’s favorite time of year. Late August through Mid-October, every year from 1972 until he died in 1978, he pick us up and take us to the Cottage in Perris. We played in the desert while he puttered around the property – laying bricks, pouring concrete, planting trees.
In August of 1992, I was still living at The Cottage and I was 4 months post treatment. I was back at work in a Light Standard Manufacturing Company, working with book keeping & Plan Review for Cost Control. I kept the house tidy and the yard clean and by the end of August had hired a local Landscaper to help me tame the bougainvillea.
Mom & Gran came out one weekend to talk about the bougainvillea and that’s when I asked about the notes. They told me he was a local boy who used to work for Grampa and he stayed in touch with Gran by leaving notes at the Cottage. It seemed odd that he left the notes on the door and not in the mailbox – meaning, he felt comfortable enough to climb the fence and walk up the drive way.
In any case, he was no longer local and we would have to find someone else. I can’t remember how I found the Landscaper, but within a week he had the bougainvillea tamed, the grapes tied and the trees trimmed. By the second week he had the gardens tidy, and by the third week he brought his assistant to trim and rake and cut while we ate lunch on the patio. This routine went on until December 1992, the Landscaper and I drinking beer on the patio or going for a ride on the 4-wheeler once a week. Sometimes twice if the weather was nice for a ride.
It was also during this time when my kidneys developed Chronic pyelonephritis. I was in and out of the hospital until I was diagnosed in January 1992.
By April of 1993 the first clot appeared and by May I was bed ridden for 3-5 days a month. I was living with The Make Up Artist whose love of Science Fiction and Victorian Horror convinced me I had met my “soul mate”. Having been sheltered within the Catholic School System and then the USAF, I thought I was the only geek outside my immediate family. He ran off somewhere in July of 1993 and I’ve never seen him since.
I went to the Free Clinic and got myself on a low dose Birth Control to slow the Endo’s progress.
I began working in Downtown LA again, this time in Telecom. I changed my diet and lived predominantly on rice, vegetables and the occasional fish or chicken. In the Spring of 1994 I moved back with my Grandmother and once I secured health insurance, I immediately went back on Low Dose Birth Control to minimize the clots.
I met the VP of Finance while working in Downtown Los Angeles in September of 1994. The Low Dose was working fine, so therefore I was fine. I had a great career and had met a great man.
When I realized The VP of Finance and I were going to marry, I told him about the Endometriosis. He knew going in what the risks were.