“If it wasn’t for bad luck, we wouldn’t have any at all” my husband said to me following my visit to the physician. The physician told me I have a prolapsed fallopian tube with granulomas tissue following a partial hysterectomy on December 8, 2009. She said she saw this arise one time in her medical career (she is approaching 40) and it was when she was a resident. She said, “We hear about cases like you all the time in medical school and people come in thinking they have these problems but you actually get them.” I thought to myself, “Gee thanks doc like I didn’t know I was a weirdo.” She proceeded to prepare the stick to burn off more of the problem and I no longer thought anything but “get me outta here!”
When the appointment was over, I called my husband and told him what she said about my weirdness. His response wasn’t a surprise to me but what was a surprise is my response to him. I told him we have a lot of luck. In my past I have been diagnosed with ovarian dysgerminoma twice as well as ductal carcinoma in situ. I have Multiple Hamaratoma Syndrome, aka Cowden Syndrome or Cowden’s Disease. It is believed the Cowden’s Syndrome and ovarian cancer are separate issues.
I could see my husband’s point of view with bad luck. Multiple Hamaratoma Syndrome occurs in 1 in every 250,000 people though it is believed to be more common. Dysgerminoma is a member of the rare germ cell cancers that account for 1-3 percent of those diagnosed with ovarian cancer. To have both is therefore very rare. Surgeries have been one of the constants of my life and though I had complications with several none were exceedingly rare with the exception of post-brain surgery and post-hysterectomy.
So when my husband said “if it wasn’t for bad luck, we wouldn’t have any at all” I reminded him of our children. Dysgerminoma tends to affect both ovaries but mine did not. Although I had a recurrence as a 15 year old, the dysgerminoma grew through the ureter of my right kidney rather than on the ovary. I lost a kidney due to cancer risk but my ovary was fine. I went through harsh chemotherapy and lost my menstrual period. Obviously it did return but there was a strong chance it would not. My left ovary was referred to in medical records as “stunted” in growth as well. The chemotherapy did affect it.
I have no thyroid gland as it was removed in 1995 and 2001. We did not understand why I formed the benign tumors on it until my test for Multiple Hamaratoma Syndrome came back positive in 2008. We knew it would be a problem to leave the tumors so they were removed along with the gland. The thyroid gland is crucial to reproduction.
My husband was not impressed with my response, “yes, we are lucky because we have children”, but I was impressed because it went deeper than what I said. Usually I chime in with what he would like to hear but this time I began to think about how lucky I am.
I am a Christian and therefore do not believe all that happened to me is in regard to luck but rather being blessed. When the bad medical problems began, people would say, “there’s a reason you don’t know it but there’s a reason.” The comment of having to be a reason angered me because I couldn’t see clearly enough to understand the reason.
Yes, I drew the short end of the stick in regard to medical problems. It is frustrating to be forced to spend more time on activities I once could move quickly through. I graduated college with a 3.9 GPA but could not repeat the process. The brain surgery from 1993, chemotherapy brain, and other factors have caught up with me physically. It is frustrating to have a short-term memory problem so bad I cannot tell you what I ate for dinner last night. Once highly verbal, my brain has changed the way it functions and it has slowed down the processing speed.
In spite of all of these issues, I am blessed.
Reason #1 I am blessed…Dysgerminoma typically involves both ovaries. My left ovary was spared not once but twice. The physician declared my second fight with dysgerminoma as a recurrence and treated me as two separate cases of dysgerminoma. To have dysgerminoma twice and it not affect the other ovary either time is amazing.
Reason #2 I am blessed…The nurse practitioner from St. Jude Children’s Research Hospital said I had problems with every system needed for reproduction. She seemed very gloomy when I asked if I would be able to have children. Other doctors gave me the same look. I have a 6 year old son and a 4 year old daughter here solely out of luck-or as I call it- the grace of God.
Reason #3 I am blessed…Multiple Hamaratoma Syndrome is something occurring at conception. We went years without knowing I had this condition. There was no medical reason given for why I had benign growths appearing all over my body. My mind could not focus on anything outside of the one time the growth was a recurrence. In 2004, I was on our unscreened back porch (something that happens no more than a few times a year) and noticed a paper that was placed there in the previous two years. Following the final thyroid surgery, I was never given an operating room report (I thought). This paper was that report and on the back was written “check patient for colon polyps and she may have Cowden Syndrome.” Because I was rarely on the porch, my being there when the paper was is unlikely. My being on the porch when the paper was able to be read and not destroyed by outside forces? Incredible!
Reason #4 I am blessed…enough information about Cowden Syndrome existed online in 2004 for me to find a support group (one that went out not long after we found the breast cancer). After speaking with people on the site, I knew I had this condition. I pressured my doctor for an appointment with a geneticist and it did happen but it took two years. Finding the support group before it went down was another instance of very good luck.
Reason #5 I am blessed… I told my husband I would choose a mastectomy if I had Cowden Syndrome. The test was positive. I had a mastectomy. A week later I was horrified to hear my surgeon say, “It’s good we got the tissue out because there were early cancer cells.” A few weeks later we learned the ductal carcinoma in situ involved both breasts at 60-70 percent. A grade of 3 is the final grade before considered invasive or metastasized. Grades 1-3 were present throughout both breasts with most being at grade 2. In spite of a mammogram showing nothing, cancer was there and had we waited six months for another scan I would not have escaped chemotherapy.
Turning the glass around to look full is a new thing for me. In my life, the glass has always looked half empty and though some would see it currently looking the same it does not look that way in my eyes. I have made the decision to see my glass as half full. Bad luck existed in the diagnoses but good luck has been there in finding the problems before time ran out. It is a struggle to change behavior patterns that have been in place for 32 years but it is one I will make. These changes are for the sake of my two children. Next week we learn if Owen and Hannah will have to be watched carefully for these problems. We will be a family who sees life as a full glass and who receives an overflowing amount of blessings as a result.