As a teenager and into my young adult life, I suffered from terrible menstrual cramps. In my late thirties, doctors discovered that I had developed tumors so large that my uterus had expanded to the size of a three and half month pregnancy. Surgery was imminent. My doctor in Minneapolis, Minnesota had recommended a hysterectomy, given the size of the tumors and the fact that I was in my mid-thirties with no definitive plans to have children. My family doctor in Gurnee, Illinois, however, was of a different mindset. He did not want me to have a hysterectomy at my young age. Rather, he wanted to take the time to delicately remove the fibroids and personally take charge of my care.
Because having this surgery in Illinois would have constituted an out-of-network procedure for insurance purposes, I would incur significant out-of-pocket medical expenses. My surgeon graciously waived his physician’s fee so that I could come back to Illinois and not have to contend with compounded hospital and related fees. It was settled. In February of the new millennium, just a few days shy of my thirty-sixth birthday, I would take a leave of absence from work for surgery and recuperation.
Now, I can be somewhat of a jokester, particularly when nervous. And nervous I was. I remember laying on the gurney and looking up at the doctor saying, “Now you did have breakfast this morning, right?” and “You’re not mad at me about anything, are you?” I wanted to make sure that all minds were clear before going under the knife. Of course, my doctor had a sense of humor that rivaled mine. I had heard stories of the outrageous things people said and did while under anesthesia, and I wanted to make sure I wasn’t a part of that statistic. Plus, I had a few secrets I was toting in my subconscious, and this was NO time to be under the influence of any truth serums. So, I asked my wise guy doctor, “Did I embarrass myself while under anesthesia,” to which Doc replied, “Oh no. Other than dancing naked on the table for all the interns to see, you were just fine.” We both shared a laugh, and I was relieved. I was further relieved that Doc was able to operate without significant cutting on my abdomen. Also, I was blessed that I was able to stay with my mom, who dutifully cared for me, making sure I followed Doc’s orders and making and bringing me meals in bed daily. Up and down the stairs Mom went so that I could rest as required. God truly had His hand on me.
Five years later, I started to notice swelling in my hands. Initially, I hadn’t thought much of the swelling. It was a hot summer, and the swelling would come and go, so I chalked up the swelling to the heat. I was in the process of interviewing for a newly-created Assistant General Counsel position in the Law Department at Wells Fargo, and I had one interview left with the HR Director at Wells Fargo’s headquarters in San Francisco, California. Before leaving for the interview, I went to visit my BFF, Lewis, at her new home in Shaker Heights, Ohio. I had noticed that my hands were swelling more and more, such that I had to remove my wedding rings because they would no longer fit. I was concerned, so I went to see my primary doctor back home in Illinois. A few days later, I received a phone call from the doctor’s office informing me that I was being referred to an oncologist. An oncologist? I was referred to the oncologist because of abnormalities in my white and red blood cell counts, which prompted some concern that I might have leukemia.
This news was unsettling news to me, but I prayed and reached out to my prayer circle of family and friends. I went to my appointment with the oncologist with my then husband by my side. Testing, waiting, testing, waiting. The oncologist came back with his report. “You do not have cancer,” he said definitively. We were all so elated at this wonderful news. Still, I had no answers to what was causing these strange symptoms in my body. But, on with life, I went.
I landed the promotion to Assistant General Counsel (go to corescotton.com/blog for more on that accomplishment). This promotion required that I relocate to Minneapolis, and it was there that I found a rheumatologist who, after nearly two years of my struggles with gastrointestinal issues, swelling in my hands and face, and fatigue, would finally diagnose my condition, which he said was mixed connective tissue disorder (I don’t like the term “disease”), a rare autoimmune disorder symptomatic of many different autoimmune diseases such as lupus, sclera derma, Raynaud’s syndrome, and the like. (I would develop symptoms of at least three of them.) In fact, another autoimmune specialist in the Chicago area had ruled out sclera derma, given that my skin did not appear to be thickening and my physical appearance was not changing at that time. I would later understand what the autoimmune specialist was talking about as I began to notice the shape of my face changing and when my ring size went from six and a half to a nine. I was mortified to have to resize my rings — three times– to accommodate the swelling in my hands, but nothing compared to the facial distortions that left me so unrecognizable that I refused to look in the mirror for a long while.
Over the next few years, I would see more and more changes. My complexion would sometimes change right before a person’s eyes. During one of Mom’s visits to my home in Woodbury, Minnesota, she and I were talking in her favorite bedroom. I noticed a frightened look on her face and immediately knew my face was changing. I excused myself for bed; Mom cried. I was used to this kind of thing happening to me, but I hated it. (If you look at the CD covers from each of the three volumes of my “Timeless Music Series,” you can see differences in my facial features overva few months time.) I would get additional symptoms over time, including hyperpigmentation and hypopigmentation.
It was a depressing time for me. I still could not bear to look in the mirror at the distorted face looking back at me. But, I persevered. My music recordings, the Timeless Music Series, and my one-woman show, “Timeless My Journey My Song (‘TMJMS’),” (formerly and what we now know as my one-woman show, “A Woman Evolves“) were my refuge, my healing. I truly believe God uses music to heal hearts, minds, bodies, and spirits. I was lifted to a higher plane when I was writing, arranging, and recording music for the Series and the Show. I would go into a zone during TMJMS. I could feel people being touched, and I was touched through the telling of my story, as well as by the connection I could feel being made between the audience and me. God is so good!
In 2011, I would get constipation and gas in my lower back so badly that I would get sick to the point of extreme nausea. Sometimes, I would lie on the floor in front of the fireplace in my home to warm and soothe my body. I also would find myself stealing away to a quiet room at work to lay down my body for rest and reprieve.
All came to a head in the latter part of the same year when I began to get what I thought were symptoms of appendicitis. I did not want to go to the doctor because I was in the process of preparing for a TMJMS show for Well’s Fargo’s Diversity & Inclusion group. When I could no longer bear the pain, I reluctantly went to the doctor for tests. After a short round of telephone tag with my doctor, I left her a message asking to leave a detailed message on my cell phone so that I could get my news of appendicitis, address it and keep it moving. She did. “I think you have ovarian cancer,” she said tentatively. I was sitting in my office on the sixth floor of the Wells Fargo Tower in Minneapolis, and I stopped in my tracks. It was all so surreal. I replayed the doctor’s message on my iPhone. Had I heard her correctly? Ovarian cancer? I called her back immediately. “We don’t know for sure, but we need to get this looked at right away,” she said. “I need to do my show,” I told her. She knew that TMJMS was hugely important to me. I had communicated this fact to her during a prior office visit for testing. At that time, we anticipated that I might have appendicitis, but she had the foresight to do a pelvic exam and order a vaginal ultrasound. We scheduled follow-up blood work and a meeting with an oncologist for two weeks out. I wanted the doctor to confirm that I would not be at risk by pushing the follow-up tests a couple of weeks out. Not only did I need to do TMJMS , but also the Sounds of Blackness’ Night Before Christmas play that would follow less than a week afterward.
Meanwhile, I had to tell my family, music team, and a few close friends my plight. Everyone around me was so supportive. I had a band of prayer warriors in my corner to compliment my own faith. My husband stayed in “let’s get ‘er done” mode. I could feel Mom literally trying to pull this life test from her baby. When I called Lewis as I released pint up tears, she immediately broke into prayer and proclaimed, “It is already done.” Lewis, my niece, Lo, and good friend, Trudy summoned their respective prayer circles, and I mine. My sisters and backup singers engulfed me with their positive energy and vowed to have the most incredible TMJMS ever.
As I waited in the oncologist’s office (seemingly forever) for my follow-up results, my mind soared. Finally, the doctor returned and took me to a separate room to talk. I was stoic as was he. “At a minimum, you’ll have to have a hysterectomy,” he said. “There’s definitely a mass there, which was detected by your ultrasound. The question is, what is that mass? We will not know that until we go in. On one end, it could be a benign tumor or endometriosis, which we can take care of through the hysterectomy. On the other end, it could be cancer, which we’ll attempt to remove and follow up with whatever we need to do to take care of this. We could leave the ovaries, but based on the status of the tissue from on testing, we don’t want to take the risk. How extensive the surgery will be will depend on what we find when we go in. I just need you to give me permission to take the necessary steps, because once we go in, we’re not going to wake you up to talk about going back in to take care of whatever we need to take care of.” He had been direct but assuring. “We’re gonna take care of this,” he said.
I was determined to put all this behind me and focus on TMJMS and the Christmas play. When my team and I hit the stage with TMJMS at the Capri Theater in Minneapolis on December 15, 2012 (and, yes, we took Wells Fargo to the theater), we were unified and electrifying! Who would have known what physical pain and emotional strain I had endured? We started the show with me singing my version of Donny Hathaway’s “A Song for You.” By the time I got to the second verse starting with “You taught me precious secrets of a truth withholding nothing. You came out in front when I was hiding.” I reached for my sisters, and they responded in strong, full harmony “Wha haa whoo.” I knew we were on our way. For weeks to come, we heard rave reviews about the show, and we developed some wonderful relationships because of it. One down.
The Sounds’s Christmas play at the Guthrie Theater in Minneapolis on December 19 the next week was a smash as well. On my signature solo, “Oh Come All Ye Faithful,” I challenged the audience and the cast asking “Can we have church?” and the house went up and in a spiritual uproar. We had a great show and, like with TMJMS, the community talked about it for weeks on end. Mission accomplished.
With both shows successfully completed and things tidied up at work, including informing my manager about my plight, I was ready to start the new year getting my medical house in order. My global prayer warriors were at work. And I must say how touched I was at the tremendous outpouring of support I received from my colleagues and team at Wells Fargo. Also, I received loads of well wishes from my many Facebook friends. I was so humbled by the huge amount of support I had around me. In the end, I climbed on top of all that support and rested easy in surgery while God worked through my medical team.
I would have surgery on January 9, 2012, and spent the next six weeks at home in recovery. Prior to being taken to the operating room, I was in my usual comedic form, joking with the nurses and anesthesiologist. Of course, when the anesthesia kicked in, my humor got a little crazier if you let Lo tell it. When I woke up, I discovered that I was a medical miracle. My tumor, which was benign, was successfully removed, though I had lost two units of blood in the process. I also had my appendices removed. In essence, the surgeon created more space inside me to get rid of the congestion. What my medical team found in the process, however, was unnerving, even for my surgeon, who had practiced medicine for 38 years. My uterus was somehow connected to my bladder, and most of my nearby organs were misplaced. Some of the medical team had indicated that they had never seen anything quite like that before. My doctor simply informed me, “It was a mess.” He did not know how I had been functioning with my insides in such turmoil. Almost immediately after surgery, my appearance began to change again. My old complexion started to return. My eyes brightened. The persistent pain in my lower back –gone!
Nine years later, while living in Charlotte, North Carolina, I visited another rheumatologist. He ran the usual tests and, as per usual, I waited. This doctor informed me that, in 2008, I had been misdiagnosed; rather than having mixed connective tissue disease, I had actually acquired undifferentiated connective tissue disease (a systemic autoimmune disease that causes the body’s immune system to attack it self), a disease that apparently is often misdiagnosed given its symptoms. The best news was what was to follow. “Ms. Cotton,” he said, “I’m not sure what you’ve been doing all these years, but despite the prior misdiagnosis 13 years ago, today you have no evidence of any autoimmune disease.”
Whether the rheumatologist that diagnosed me 2008 missed the mark is an interesting question in itself. Whether the “mess” the oncologist surgeon described after performing my hysterectomy in 2012 related to the myomectomy I had some twelve years earlier is a question that has lingered with me. What I do know beyond a shadow of a doubt is that God kept His hand on me. As Mom can say, if the good Lord is kind enough to watch over the little sparrow, surely He will watch over me. It’s no surprise that in both AWE the one-woman show and the AWE biopic, I passionately sing the song, “His Eye is on the Sparrow” – always have, always will. Many experiences I have had in my life attest to this very fact, and I am still enjoying the journey.
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Enjoy the Journey!
