OVARIAN CANCER 1978
I had no alarming symptoms ahead of time. My jeans started to fit tight. I had just turned 41. The night everything happened at once started out to be my husband's birthday party at an Italian restaurant. I was dressed up and wedged at the back of a horseshoe booth. I didn't feel well during dinner, and by the time we got home, I was unable to walk upright to the front door. I scooted along in a crouched position. I was sure I had suffered food poisoning. I spent the night on the bathroom floor suffering vomiting, diarrhea, and passing out. At 5 am I awoke my husband, who contacted a doctor. The doctor said, "If you want to save her life, call an ambulance."
At the hospital I underwent a sonogram, CT scan, and other tests, but they showed no clue about my problem. Finally, a surgeon came in to just "cut it open" to see what was happening. That was OK with me. I just wanted the excruciating pain to stop. Since then I've been told that internal bleeding is one of the worst pains anyone can suffer.
When I woke up after the surgery, I learned that I had had an ovarian cancer that had ruptured. The surgeon had performed a total hysterectomy, washed out my inner cavity with saline solution, and stitched me up. I was advised to have a "second look" in one year. I was told that this "granulosa cell carcinoma" was a low-grade cancer, that it was estimated mine was as large as a football before it ruptured, and that the consistency of this cancer was like moss, which crumbles into miniscule pieces when it ruptures. I did have the "second look" surgery the following year. No further evidence of cancer was seen. My battle that first year was to rebuild my blood count. I had lost so much blood that my count hit 4. I had one or two painful iron shots, and I ate spinach, raisins, liver, and other iron-rich foods until I reached the magic number of 13. My doctors did not approve me for any hormone replacement therapy, because of the uncertainty of the seriousness of my type of cancer. I was also told not ever to donate blood.
RECURRENCE ON COLON 1994
I was active and busy. The night the world stopped again I was working a Chamber of Commerce event. I hadn't felt well. In fact, I had to lie down on the floor of my office for awhile that afternoon to relieve the discomfort in my abdomen. This time I HAD had symptoms during the previous months, but didn't connect the dots. I had incidents of illness and cold sweats after eating certain foods (greasy), and following urgent diarrhea, I was exhausted for a period of time. The evening the cancer ruptured again, I was dressed up in a new suit with an inflexible waistband. I think the added pressure of constrictive clothing and a long evening of sitting contributed to the breaking of the cancer pouch. (I think the same things brought on the first attack, as well.)
This time I made it through the night until early morning, when my husband hauled me over to the doctor in the back seat of the car. Again the sonogram, CT scan, and other tests showed nothing conclusive. Again, the surgeon cut me open to see what was there. The ovarian cancer was back, but this time growing on the transverse colon, and this time (as best they could calculate, since it had again ruptured) only as big as a baseball. The surgeon removed the cancer and a part of the tranverse colon.
Now I was referred to a doctor who knew more about granulosa cell carcinoma. He told me the medical world knew more about GCC now, that it WOULD come back, it would be more aggressive, and I was offered the opportunity to participate in a Protocol, a course of chemotherapy and followup. I underwent 200 hours of chemo, a mix of cisplatin, bleomysin, and etoposide. I reported to the cancer center Mon.-Fri. at 8 am, was IV dripped with chemo until 5 pm, and then after two weeks off, I repeated this schedule three more times. I won't detail this further. I've already written a book about it. See Ways To See.
BLOOD TESTS FOR INHIBIN MARKER
From 1994-2003 I had blood tests with the goal of looking for a cancer marker called "Inhibin." It must have been an unusual one, because two or three times I had to tell the phlobotomist that they needed to use the tube with the rust-colored top. I was never told that Inhibin ever showed up. I also had regular check ups and pelvic exams, all with negative results.
GRANULOSA CANCER RECURS, REMOVED
After 1994 my husband and I were both aware that this cancer can show no symptoms beyond a protruding stomach. However, life has a way of sending in many distractions. My husband and my best girlfriends noted in 2003 that my belly might be distended. I noted it, as well, and ceased wearing anything with a binding waistband. I tended to broomstick skirts with elastic waistbands. There were NO other indications of the cancer's recurrence. I went on with work, travel, and life. In July of 2003 my husband became very ill and was diagnosed with liver cancer. He was gone before the end of September. October was consumed with Memorial Services and grieving. The week before Thanksgiving I fell ill in the middle of dinner, and the next two days were sheer agony with pain in my lower abdomen. At times I was quite "out of it." But I did get better, and I was able to go on as long as I ate VERY soft foods--in fact, eventually I was living on Ensure. I felt that the cancer had come back on my intestine.
Two doctors felt a mass in the pelvic area, and so more tests were performed. Specific location of the tumor was unknown until the doctors did a barium enema, which indicated the tumor was behind the intestine and behind the bladder. This time the softball/baseball sized tumor was INTACT, nestled between the bladder and the belly wall. However, as they were removing it, there was a rupture. So I was "seeded" for the third time. As usual, the belly incision was about a foot long, vertical. No bikinis for me! But I felt very blessed. I had been prepared to come out of surgery with a colostomy.
A month after surgery, I had a follow-up with my OB/GYN/ONC. I specifically asked whether my blood tests prior to surgery Dec. 12 had shown increased levels of Inhibin or CA125 (cancer markers). The answer was negative. Both were normal. I was eager to hear what the UCI Med Ctr cancer committee had said about my tumor. My doctor looked at me (did he shrug? maybe it was just the way he looked at me?) and said my ovarian tumor was very unusual. (I had it in 1978 on ovary, 1994 on transverse colon--followed by 200 hours of chemo, and again in 2003.) The doctor said we could try another new chemo, Taxol. I asked him if it would make me sick like the 1994 chemo did. He said not that sick, but I would lose my hair again. For many reasons (I'm a recent widow age 67, need to get back to work for 3 or 4 more years, etc.) I told him "No." But I will see him every 4 months for follow-up.
Everybody tells me not to make big decisions so soon after my husband's death, but this decision seems to be in a different category. It kind of steam-rolled me. If this tumor runs true to my prior history, I'll be seeing it again in about 7 years. I'll be getting ready for it. Meantime I intend to live every day to the max.
I do feel I am living on borrowed time, but at age 67 I know how lucky I have been. I hope that my experiences and observations may advance the knowledge and treatment of granulosa cell carcinoma.
This cancer did NOT wait 7 years to come back. It was back in 7 months. Here's that story:
The best thing I've read is "Ovarian Cancer Your Guide to Taking Control By Kristine Conner & Lauren Langford." You can find it at Amazon.com, Walmart.com, and other places, such as inter-library loan. Publisher is O'Reilly, copyright 2003.
The BEST forum for GCT is at OvCa.net
http://groups.yahoo.com/group/ovarian_cancer/.
John Hopkins OVCA
http://www.medhelp.org/perl6/OvarianCancer/messages/260a.html
http://www.medhelp.org/forums/OvarianCancer/wwwboard.html
http://www.womenshealthmatters.ca/facts/quick_show.cfm?subject=Ovarian%20Cancer
Dare to Dream for Ovarian Cancer
http://www.thepark.ws/
http://www.webspirations.net/limited/
The Wellness Community
http://www.ovarian-news.org/
http://www.law.wisc.edu/patientadvocacy/findinghope.htm
http://www.drdonnica.com/display.asp?article=3941
http://www.centracare.com/whatsnew/spotlight/ovarian_cancer.html
http://www.ovariancancer.org/
http://sharecancersupport.org/
http://www.canadianliving.com/CanadianLiving/client/en/Health/DetailNews.asp?idNews=1892&idSM=76
http://shareing-careing.com/
http://www.washington.edu/alumni/columns/top10/life_sentence.html
A Woman's Story
National Ovarian Cancer Resource Center
http://ovariancancer.jhmi.edu/menu_understanding.cfm
http://www.cancer.org/docroot/home/index.asp
http://www3.oup.co.uk/jjco/Volume_29/Issue_10/html/hyc134_gml.html
http://www.cancer.org/docroot/CRI/content/CRI_2_4_1X_What_is_ovarian_cancer_33.asp
http://www.gyncancer.com/ovarian-cancer.html
http://www.oncologychannel.com/ovariancancer/
http://www.rd.com/common/nav/index.jhtml?articleId=9519892
http://www.thedoctorsdoctor.com/diseases/ovary_granulosacelltumor.htm
http://www.emedicine.com/med/topic928.htm
http://www-medlib.med.utah.edu/WebPath/FEMHTML/FEMIDX.html
http://www.pathologyoutlines.com/ovary.html#gctadult
http://sup.ultrakohl.com/uscap/dick.htm#ovary
http://radiology.uchc.edu/eAtlas/nav/msOvary.htm
Cancer Master
http://pathology2.jhu.edu/ovca/stromal.cfm#gct
http://ntp-server.niehs.nih.gov/htdocs/LT-studies/tr288.html
My Dad worked at Dow Chemical Company in Midland, Michigan, for over 35 years, starting in 1940 when I was three years old. He worked shift work, meaning that one week he went to work in the morning, the next week he went to work in the afternoon and came home around midnight, and the next week he worked "midnights," which took him all through the night and he returned home about 8 a.m. He worked in the plant where chemicals were mixed and machines operated. He was involved in the production of plastics and styrofoam, as well as other things. Sometimes when he came home from work, his uniform (basically a shirt and pants of drab olive green) would smell just awful. We likened it to the smell of rotten eggs. I guess only farm kids would know how bad rotten eggs can smell. My Mother, sisters, and I would handle Dad's uniform, get it into the laundry and ready for the next wearing. Sometimes Dad didn't eat everything in his lunch pail. So we kids could have the "goodies." My youngest sister vividly recalls that even through the cellophane wrapping, the Twinkies had a "Dow" taste.
In 1944, Dad got sprayed in the eye with benzene. The supervisors washed it out, but they watched it. One day Dad brought home a page of photos of himself from Dow, little "mug shots," showing him looking right, left, up, down, etc. His eyes were not coordinated together; the two eyes were looking in different directions. Dad also complained of double vision. Since the accident was work related, Dow took over. Dad was sent to a hospital at Traverse City, which was several hours' drive away. We later learned that benzene, used in making ethycel plastics, affected the central nervous system. Traverse City had special doctors to treat this. When Dad returned to Dow about a year later, he worked in styrene plastics instead of benzene.
My Dad also worked in tricorethylene.
My Mom died of leukemia in 1979. My Dad is relatively healthy at age 90.
As kids we also used to play with mercury. We knew it by the name "quick silver." I don't recall how we got it, but we'd spend hours rolling it around in our hands and marveling at the way it moved.
I have no idea whether my childhood exposure to chemicals has any bearing on my getting granulosa cell carcinoma.
Created using Notepad.
|
