Lewis Grizzard Gives Good News

Dr. Barnes is a great doctor. He is also very kind. He has a gentle nature that soothes and comforts even when the news is bad. He is honest and straightforward without being sharp. While smarter than anyone I know, he is able to speak the language of patients... he puts it, in terms I can relate to and understand and through that I can come to grips with what's wrong. He also mildly resembles Lewis Grizzard, one of my favorite Southern writers. I transferred some of my love of Grizzard to Dr. Barnes and always think of him in humorous terms because of the resemblance. Humor is a great relief to fear.

After a trip to the lab for blood work, I met Dr. Barnes nurse, Cassandra. I fell in love with her immediately. Her office was filled with angels and she had such a warm, mothering nature. Then, Mom and I waited in the exam room, whispering and staring at the door, willing Dr. Barnes to come in with good news. Finally he came in and greeted Mom. They talked of the people that they both knew, and caught up in the way old friends do. I tried not to grind my teeth in anticipation of Dr. Barnes' diagnosis. Is it cancer or isn't it? Who cares how "Dave" is? Who cares how great it is to see one another again? Just give me the answers I need.

Finally he looked at me. Really looked at me... into my eyes. He shook my hand, patted my back and we talked. He asked me to describe the fever, fatigue, stomach woes, and aches. He looked over the other doctor's notes and studied the lab work. He checked my incision, which after eight weeks was still not healed. Then he took a deep breath and said, "I have to do more lab work. And nothing is positive but I don't believe it's leukemia. Something's going on and we'll find it. We have to rule out lymphoma. And I'll be seeing you regularly until we figure it out." Note: I should mention that Dr. Barnes is an oncologist and a hematologist. If a blood doctor didn't think I had leukemia, then I was going to take his word for it with gratitude and thanksgiving. By the way, my appointment was a couple of days before Thanksgiving that year. Because of my immune system, Charlie, Tom and I celebrated by ourselves, but it was a happy holiday. Our families called and we all celebrated the holiday and added extra thanks for no leukemia! He started me on strong antibiotics and we made plans for another appointment and regular blood work. He asked me to keep a diary tracking the fevers.

A month later, on my 11th wedding anniversary, I got the news that it definitely wasn't leukemia. Lymphoma and non-Hodgkin's lymphoma still hung over my head but again, while Dr. Barnes ran new tests, his gut said no to both. That's the first day I heard the phrase "autoimmune disease". I stared blankly at him and said, "You mean I have AIDS?" He threw back his head and laughed and told me that there are more than 10,000 autoimmune diseases and that while AIDS is one of them, he didn't think that it was the answer to my mystery. We made yet another appointment and went home to wait for the phone to ring with results.

Life With Dignity

My husband, Charlie and I discussed our options and "planned" for the unknown during the two weeks that we had to wait for my first appointment at the Montgomery Cancer Center. The building is very close to I-85 and I had passed that building for years on my way to college at Auburn University at Montgomery. I feared that building. I still can't explain the fear. During college, my elderly neighbor faced her second round of lung cancer. She came to mean a great deal to me and it was my honor and privilege to help her during her fight. Sometimes, it was something as simple as a game of Scrabble on a rainy afternoon and other times, my mother and I would drive her to that terrible building (that was my term at the time for the cancer center). We watched her go through the chemotherapy and dreaded radiation and we stayed with her at her house during the night while she was so sick. I feared the building long before Anna's cancer introduced me to it. But in late November of 2003, my knees shook as I entered the doors full of dread and sick with hope and always, always begging God to not let it be cancer.

Not knowing what the future held, Charlie and I decided to bank his sick time and my mom volunteered to go with me to my first appointment. She knew my doctor through her work in an accounting firm. Dr. Barnes had seen her boss's dad through his battle of cancer and everyone agreed he should be my doctor. Mom and I walked into the cancer center, early of course because I couldn't stand to wait any more. The computer was down and we settled into the "first" waiting room for a long wait. Mom tried to read a magazine but could not concentrate. I just watched people come and go. Very quickly, you can discern patient from patient support. I watched one elderly lady float into the room. She was magnificent in her scarf, tied in a turban around her bald head. She had fantastic chandelier earrings. Her makeup was flawless right down to her red lipstick. She was dressed in a black pantsuit and had black, low-slung heels on. There was no doubt that she was very sick. Her port, the line used for chemotherapy, was a small lump above her breast but below her sharp collar bone. She met the receptionist, Mina, warmly and hugged her volunteer as if they were old friends. Note: I would learn later that the volunteers are often family members of other cancer patients, both survivors and those who no longer have to fight. Mina ran that front desk like a general faces battle. She juggled phone calls, directed patients to the lab, x-ray, the nurse practitioner, the doctor's waiting room, and the dreaded treatment department. Volunteers, Mina and other receptionists, the insurance team, lab techs, x-ray techs, nurses, doctors, the girls in scheduling, and even telephone nurses, they all joined together to form a formidable and tightly -knit team to fight for every patient they help. They truly came in short time to mean a great deal to me. They were and are still a great comfort to me.

Now, back to that first lady in her turban. After checking in, she and her daughter came to sit very close to us. I watched her for a long time and she seemed so comfortable and easy. She did not appear to fear anything. Her speech was animated and she laughed quite a bit. I did not want to stare but I must say that she intrigued me. While we waited, I watched other patients as well. Another woman came in with wrinkled, even dirty clothes on and ratty house shoes. Her hair was a tangled nest and she spoke sharply to the woman came with her. They both looked miserable. I leaned over and spoke quietly to Mom. I pointed out the beautiful but terribly sick woman and the other woman who was so miserable. I told her then that even if we got the worst news possible, for as long as possible, I wanted to keep my dignity, even if I lost my life. She teared up and looked at the two women and hugged me. She held my hand and promised to help me keep my dignity. We decided right then and there to face life (and death if absolutely necessary) with courage and dignity. While the beautiful lady went for an x-ray, we spoke to her daughter and learned she only had weeks to live. But she had come to love the people at the Montgomery Cancer Center and wanted to be uplifting in an often times discouraging world. She'll never know what she did for me that day. With courage and a renewed sense of hope, Mom and I were called to see the doctor.

The First Steps of My Journey

This blog is an effort to offer hope and strength to those who are battling autoimmune disorders. I want to share with you what I've learned: how to communicate effectively with doctors, advances in research, asking for support from family and friends, ways to keep your chin up while looking for the bright side, and ways to take some control back of your body and manage your disease. These first few entries may be a little tedious but I want you to know about my journey, my pitfalls and failures and my triumphs. I do this so that my journey might be a road map for yours and you'll know that you're not alone! I call my journey the "path of least regret" because my disease forces me to make choices. What would I regret more, (1) going out in public and risking getting sick because my immune system is shot or (2) seeing my son play his first game of football? For me the choice was easy. I needed to see my son play ball... thus, the path of least regret.

In late September of 2003, I checked into our local hospital for some minor, out-patient surgery. The surgery turned out to be a little more complicated and I awoke in a private hospital room, running a fever and in tremendous pain. My first name really should be Murphy, as in Murphy's Law, because anything that can go wrong often does go wrong to some extent and 2003 was my worst year! In fact, the surgery was the last of a very long list of calamities. I mention this only because I firmly believe that a person's emotional health, such as unending and overwhelming stress, plays havoc on a person's physical well-being. In 2003 alone, I lost a baby, changed jobs, which turned out to be a terrible mistake, nursed my husband through serious neck surgery, cared for my son, who broke his arm twice in three month's time, suffered through several rounds of strep throat and pink eye, and had a shattered tooth, which was infected and resulted in a dry socket. So, 2003, wasn't my best year and I was hardly healthy going into my surgery. It was only while I was recuperating at home that I began to realize that I wasn't healing and something was terribly wrong. I kept my regular doctor's appointments that were meant as follow-ups to the surgery and mentioned that my fever, while not raging, was constantly higher than normal (around 100 degrees) and I felt achy and tired, almost like I had the flu. Each time, my doctor ordered blood work and scheduled another appointment for the following week. That was the beginning of a 4-year odyssey of tests, fears, doctors, confusion, and loneliness in search of a seemingly evasive diagnosis. My purpose for this site is to be a beacon of light to those still searching for an autoimmune diagnosis and share what I've learned while waiting for my body to reveal its secrets.

By November of 2003, I was still running a fever and fatigued. Something new was happening also. My joints were beginning to throb and turn red with heat. I was nauseated and my stomach hurt all the time. None of these symptoms could be explained in one easy diagnosis. I felt disjointed and a little bit crazy. I thought maybe the stomach issues were a result of the antibiotics and pain medicine I had been taking since my surgery. I mentioned earlier that my doctor was running blood work on a weekly basis. My white counts were all over the board. One day they would be at 14,000 and a week later they would be at 2000. My red counts began to drop at an alarming speed and I soon found myself taking large doses of iron pills to treat anemia (further adding to my stomach woes!). My doctor told me that he was going to refer me out to another doctor who might better treat my F.U.O., which I later learned was "fever of unknown origin". He said it just like that, "... another doctor who can better treat you F.U.O." He said his nurse would call once the referred appointment was set. She called and gave me the name of the doctor, his phone number, the referral number and the doctor's office address. It was several hours later when I realized that I had failed to make sure that the new doctor accepted my insurance. I called the doctor's office and was greeted by a very friendly receptionist, who informed me that they did not accept my insurance. She cheerfully announced that the only doctors who accepted my insurance were located at the Montgomery Cancer Center. Confused, I asked her to confirm my name and my appointment, which she did. I asked why I had been referred to a cancer doctor, an oncologist. She said, "Well, Darling, you have leukemia."

With those words, time stopped. That moment was burned into my memory and my senses seemed overly sensitive. I watched the too-bright sunlight that slanted through the shutters of my widow. Vaguely, I could hear the receptionist talking the background of the roar of my pulse in my ears. In a knee-jerk reaction, I had viciously twisted the telephone cord around my hand and my fingers tingled. Stupidly, I said, "I have an eight-year-old son. I can't have leukemia." Then very gently, for fearing of my body flying apart in shock and fear, I returned the telephone to its cradle without even saying goodbye. I curled up into a ball and cried. I begged, I pleaded, I made every deal I could think of with God. My prayer was, "Please don't let this be cancer. Let me watch Tom, my son, grow up. Please let me grow old with my husband. And if it has to be cancer, please let me survive it." I prayed that prayer over and over during the 2 long weeks leading up to my first appointment at the cancer center. With that, I'll say goodbye for now. The next entry will be my second step in my terrifying journey: The Montgomery Cancer Center.