I was diagnosed with Stage III colon cancer in late August. The past six months have been a whirlwind of colonoscopies, CT scans, DNA sequencing, a major surgery and now chemotherapy (Tumor Killing Sessions). I have Lynch Syndrome, which turned out to be a good thing on multiple levels. First, it improves my odds of overall survival. Second, it allowed me access to a Lynch Syndrome clinic at Johns Hopkins University. Growing up in academic medicine taught me several things. The most important is that academic medical centers are on the cutting edge of treatment options. Their physicians are the ones who are conducting the latest research, and are the ones teaching the others what they know. Having an outstanding surgeon is one of the most important choices I made. Dr. Safar teamed up with Dr. Long (a gynecological oncology surgeon) to tag team my surgery. Dr. Long removed my reproductive tract and Dr. Safar removed virtually all of my colon. They did this surgery laparoscopically, with only a bikini-line incision and a few smaller ones for the laparoscopic part. When it was over, my small intestine was directly connected to the last 2-3 cM of my sigmoid colon, meaning that although I now have a very fast GI tract and need to pay attention to my water intake, I had no ileostomy bag! The significance of this only hit me during my recovery. And, I was thankful that I made the choice to have an expert surgeon who specialized in this procedure.
Things were a bit complicated, because in addition to Lynch Syndrome, I also have MRKH Syndrome. MRKH Syndrome is a rare congenital condition that results in the under-development of the female reproductive tract, and usually results in missing or rudimentary development of the uterus, a complete lack of cervix and a lack of the upper portion of the vaginal canal. My ultrasound and CT scan detected no uterus or cervix (I created my vaginal canal through surgery when I was 16). When Dr. Long and her team examined me, they found something remarkable; my ovaries and Fallopian tubes were located as expected, but they also found two rudimentary horns (thankfully, with no evidence of endometrial tissue) and a small cervix! The attached cervix was located in the middle of the two uterine horns. Finding the presence of a small cervix in a woman with MRKH is very unusual, especially as my uterine horns were very under-developed. This showcases the fact that everyone with MRKH has a different phenotype, and that MRKH is probably a spectrum condition, with varying degrees of severity.
Seeing pictures of my reproductive tract was difficult. Although I have known for over 30 years that I could not carry children, having my ovaries removed was a different story. This procedure effectively shut the door on my having my own biological children, and it was a sad moment. However, due to the increased risk of developing various gynecological cancers, having my entire reproductive tract removed was a priority for me. The thing I wish I had done was have that tissue frozen so it could be sent to labs that study the potential genetic causes of MRKH. Maybe something in my nascent organs could help solve the puzzle. As a geneticist who specializes in epigenetics, I’m kicking myself for not requesting this be done! This would have been a golden opportunity to perhaps answer some questions regarding the etiology of MRKH.
Now that you know a bit of my story, I want to comment on how art changed my life. I attended an Art Therapy Workshop for women with MKRH in January of 2009. Prior to this meeting, I had not had face-to-face contact with another person that shared my diagnosis since I was 16. Meeting these fabulous women and expressing my emotions through art gave me a sense of ‘normalcy’ that I had never felt before. For the first time in my life, I was with a group of women who had a shared experience, who understood what it was like to be born with MRKH. I knew that no one was going to ask about my last period, about whether or not I was going to have a child. No one was going to advise me that I was getting older and that I should think about having children, because everyone knew how emotional those questions can be. They understood the pain of standing in front of a medical receptionist, who shouted to the entire room, “You didn’t fill this form out correctly. When was your last period? Are you sure you’re not pregnant?” and then looking puzzled, incredulous, as I told her, “I do not have periods. I have MRKH. There is no physical way I can be pregnant” The blank stare always belied their lack of knowledge of MRKH, and was usually followed up with, “Are you sure? When was your hysterectomy?” When I replied, “I have not had a hysterectomy, and I am positive I cannot be pregnant” the conversation broke down, as this person, who supposedly is knowledgeable about medicine had no clue about either patient confidentiality or rare medical conditions.
During the workshop, all of us produced pieces of art, which we would discuss in a group session. The first pieces were raw, emotional, heart-breaking. One was a mixed media piece in blood red, which portrayed the raw emotional impact of a woman who had undergone multiple rounds of IVF and surrogacy, only to end up with no pregnancies. Another piece was a sculpture of a vulva, entitled, “Sitting with Ugly.” The title tells you all you need to know. I was sad and raw, knowing that an MRKH diagnosis affects your self-esteem to the point where it poisons your mind into believing that YOU are ugly. My piece explored how I initially coped with MRKH. I sought comfort in the most insidious of places, and used sex to gain self-worth. It was a dark time in my life, when my self-esteem and self-confidence were virtually nonexistent.
By the end of the three-day workshop, the progress each of us made blew me away. “Sitting with Ugly” got a new name, and the last painting produced by this participant was a thistle, symbolizing that MRKH was painful, but beauty can come out of pain. I called my transformative piece “Spirit” to reflect how much my confidence, self-esteem and self-worth changed from when I was in college. It was an abstract painting with bold colors that took on the emotions of the group as they were progressing during the workshop. I took in the energy of the group and reproduced it in this work of art. By the end of the weekend, my outlook about MRKH changed. I no longer viewed it as a challenge, but as an opportunity to destroy the medically inaccurate information and create awareness for MRKH.
The most important thing I carried away from the workshop was this sense of normalcy, this knowledge that I am OK as I am, that MRKH is an opportunity, that my self-worth is not tied to MRKH. In the past six years, this confidence has grown, and I am able to see the opportunities I had because of MRKH and I found a freedom in understanding that because I did not live in the Soccer Mom world, I did not have to live by these rules. I had the utmost freedom to live my life anyway I wanted. I was not shackled to mainstream rules. The profound freedom I felt when I realized this changed my life. It forced me to found the Beautiful You MRKH Foundation with Christina Ruth and gave me so much more in return. My life is bigger than I ever imagined. The MRKH community has given me so much during this challenging period in my life. On my darkest days, I receive texts, email, private messages, tweets, letters, presents and surprises from all over the world. I have been overwhelmed with the outpouring of love from the MRKH Community, and their love gives me the energy, the strength to keep on fighting for MRKH. I love my MRKH family and I am indebted to them for keeping my spirits up during this process.
In effect, the best part of my life stemmed from an Art Therapy Workshop, and since my diagnosis, I take time to be creative, to give that part of me the attention it deserves. Unfortunately, the art that I made during the workshop was destroyed by mold; throwing it away was painful, but cathartic. Although the art played a major role in creating a new life for myself, throwing it away was the final step in the process. I no longer needed it to boost my confidence, to demonstrate that I had made changes. My new life was proof that I could succeed, that I could play a small part in changing lives for women with MRKH.