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.
Published by Andrea Rowe
Born in NE Arkansas six miles from where my dad s family lived as long ago as 1820. College grad in psychology field. My children and I have a very rare genetic disease that seriously impacts our lives. I... View profile
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18 Comments
Post a CommentI struggle with seeing the glass half full instead of empty as well.....and after reading what all you have had to deal with in your life, and yet you are still so uplifting in your writing....I have nothing to complain about. God bless you!
Sorry guys I'm not logged in right now. My positive attitude? Whew that truly is a new one to describe me but I can't think of a greater compliment. Unfortunately we do not know if Owen and Hannah have CS yet as I am to call back again next week. I was feeling down though and came in here to remind myself I'm a different person now. Thank you so much for the wonderful comments. I have been reading articles but have been unable to leave comments since tornado night. I will start back asap.
You are a very strong woman! Great Article!
Wonderful article.
I think that your positive attitude inspires a lot of people here at AC, including me!!!
Maybe I shouldn't be scared of my comments section after all. I appreciate the feedback. Yesterday I slowed myself down and wrote my heart out on both articles. As we wait for Owen and Hannah's Cowden's results and the time draws closer, it is difficult. Today was one month ago they were tested and all 3 should be back now but I was asked to wait until the 9th. I know if they get bad news I will be back on here to remind myself even out of bad news comes good.
What great compassion and love you write with. Your children are blessed to have such a godly, Christian caring mother like you. My prayers are so with you all. God bless you for being that "half full" glass to me and others. Wow. This was really, really great. You have such a gift. :-)
Humans are creatures of habbit it takes a long time to break one that you have always had in you or were trained to think this way. Now I am so proud look at your angels. God gave them to you my sweet friend I am so very proud and my goodness we have so much in common about the one certain part above mentioned about I will discuss later with you in private alright. It is like we are twins At least sisters. I was not supposed to have any children either. WOW God does not create junk does he it is the genes that mutate and create all this junk we have. Hugs and bravo for you. I am so happy that things are going and flowing out of you what a release isn't it I have never really spoken of my ailments Time I need Time then when I am over this I will talk about it in past tenth's Openly! Bravo.
*hugs* You are SUCH an inspiration. To go through everything and still be able to count yourself lucky is amazing.
Thanks. Great info!