Love many, trust few, and learn to paddle your own canoe!

I haven't written in a little while and I've missed it. This time of year is dangerous if your immune system is suppressed. I've had strep and the flu. I got over that just in time for Thanksgiving and then we got bad news. My grandmother died. It will sound cold but it really wasn't bad news for me. Her body was ravaged by congestive heart disease but worse, her mind was destroyed by Alzheimer's Disease. My grandfather, who is 91, shared his life with her for 63 years. But these last few have been so hard on him. This blog entry has nothing to do with Lupus but it has everything to do with dignity in life and death. It has everything to do with knowing how fragile life is and what a great blessing it is to wake each day and know that you have another shot to get it all right. It has everything to do with hope, and love, and farewells, and it is a celebration of life, specifically, Mildred Peacock Palmer's life.

With Alzheimer's, sometimes, just by looking in Grandmother's eyes you could tell that no one was home. But, if you stayed long enough, every now and then, her cornflower blue eyes would sparkle with the life and the zest that told me she was back for a fleeting moment. Those moments came rarely here lately, and this long goodbye that we as family went through was so hard and overwhelming. In the end, death came quickly. It was her congestive heart disease, well, I guess you would call it heart failure this last time that got her. The last few moments, she struggled for breath and cried because she wanted so desperately to talk to my grandfather one more time. She simply didn't have the breath to speak the words and she died with tears in her eyes. My grandfather is certain that she struggled to tell him she loved him. It was the only words she had for him there at the very end. "Darling, I love you so." I hope she didn't hurt but I know now that she's whole and well and in God's perfect place for her.

I received the most beautiful gift from her two days before she died. I called to check on her and to talk to Granddaddy. She had not been feeling well, had been unresponsive verbally for several days, was hurting, and not eating well. She slept all the time and even when she was awake, she wanted to go to bed. My grandfather had been very near death with incredibly high potassium levels and had been hospitalized for several days. His hospitalization revealed gaping holes in the legal end of dying. By that I mean power of attorney needed to be filed on my grandmother's behalf and my mother and uncle needed to be added to the checking account or at least be given signing privileges, and they needed to be allowed to receive medical information on both of my grandparents so they were all tied up with HIPAA forms. My grandfather was getting the power of attorney notarized and he was not home when I called. I spoke to Grandmother's nurse, Wendy. We're friends and she's comfortable telling me when my grandparents are doing well and when they're not. Hearing from her how badly Grandmother felt and that "no one was home", if you know what I mean, I asked to speak to Grandmother. Wendy hesitated, not wanting to hurt me but trying to prepare me for Grandmother's lack of response. I took the chance and just asked Wendy to hold the phone to Grandmother's ear. Grandmother said a soft hello and I allowed that to wash over me, the clear sound of her voice. I said, "Grandmother, I just called to say that I was thinking of you and love you with all of my heart." And, just like that she said, "Darling, you are my heart and my little joy." Little Joy was what both she and Granddaddy called me when I was very little. In fact, as the modest child I was, it is the name I gave myself because it's what they always said around me, as in, "Amy, you're my little joy." Those two words, Little Joy, heard over the phone told me with certainty that she was present and she knew who was speaking to her. Then my heart broke. I told her I loved her and would call again to check on her in the evening. Very quietly and with a struggle for breath, she said, "Goodbye". That's the only time she's ever said that word to me. For us, it was always "Until later" or "See you soon" or simply, "I love you." But we never said goodbye. That word just killed me and my heart skipped several beats with its import. When I called Mom later to report on Grandmother's condition, I left the goodbye part out because I knew she would worry over it. It would hurt her. But, two days later, on Friday, November 16, 2007, at 6:30pm, Grandmother died and I then shared my goodbye with Mother.

Mother received her own gift of goodbye. The last time she saw Grandmother, the weekend nurse was bustling around and Grandmother beckoned Mother over to the bed. She held her hand and very quietly mouthed the words, "I love you." It was quiet and private and something special shared one last time.

In the days after her death, we were surrounded and comforted by legions of people. Friends, neighbors, family, far-away family, grownups, who were once students of my grandmother, charity foundations that she supported, even the caregivers, they all surrounded us and helped us say goodbye. There were people, friends of my grandparents and thus people approaching the century mark, and there were people my parent's age, people my age, and then the children, even my cousin's child who is a little more than a year old. Watching baby Jackson toddle and run irreverently through the funeral home reminded me that life goes on and it's such a promising and sweet life. I realized then that everything, even just a quietly shared, "I love you." or "Goodbye", or just the touch of a hand in comfort, the community and the giving of time, it's all a gift. It's the tie that binds us together, allows us to comfort and strengthen one another and ultimately allows life to go on.

Oh! How she loved us all! I'm not sorry she's gone because she suffered so in the end but I'm going to miss her so much! I've never known a moment without her in my life and now I think of her constantly! I'm afraid my need to hang onto her, to not forget her, to not let her go maybe holding her back but I know she's seen the face of God now and she's where she's supposed to be. The night before she died, at night, when the evening nurse was getting her settled for the night, Grandmother said suddenly, "Oh! Betty! Look at those beautiful lights! Have you ever seen anything so beautiful?". Betty, the nurse watched Grandmother stare toward the dark doorway and she teared up a little. I've always heard about a white light leading to God. To be given the gift of knowing that Grandmother was received into Heaven in a pool of perfect light and that she was received in gentle love, it simply overwhelms me. I'm so grateful to have known such a person as she.

She taught me the names and faces of all the birds she watched. She stood on the side of the road leading to their place on the Warrior River, and taught me the names of all the wildflowers. I think of her every time I see a Black Eyed Susan. When my father threw me and my mother out, and while my grandfather helped my mother move our things from Florida back to Birmingham, Alabama, it was my grandmother who bent over and allowed me to hold her fingers for hours, while I took my first steps in life. She taught me to play bridge but I proved to be a poor player. She, being an English teacher, gave me my own summer reading list- Huckleberry Finn, Tom Sawyer, To Kill a Mocking Bird, Aesop's Fables, Greek and Roman mythology, Anne of Green Gables, Kidnapped, Black Beauty, Treasure Island, all of these were her gifts to me. She and Granddaddy both worked hard to fill the void of my father's absence. They, along with my mother, and later my step-father, always tried to make me feel worthy of love. They loved me when my father could not. They included me in their life and shared my life. They gave me the gift of time and I'm a better person for it. I'm a better friend, daughter, wife, mother for the gifts that she gave me.
I hope at the end of my life, people will gather out of love and support for those I leave behind and I hope I will be remembered well. I want to know that like she, I have comforted those who need comfort; that I have loved to the tips of my toes; that I have touched someone's life (more than just one person hopefully!) and by doing so have made that life better. I want to give of myself, from the heart and always with love. I want to be a person that she can be always, always be proud of. And I wish for you, Dear Reader that you may know a person like my Grandmother in your own life. Know that you're loved and needed and special.

P.S. As an aside, the title of this blog entry is one of her favorite phrases. And to add humor to this entry, when someone would say, "I want this or that", she would say, "People in Hell want ice water." I used that same phrase on my son and finally one day he said, "Mommy, you say that all the time. Do you think we're in Hell?" Anyway, life goes on and now I have beautiful memories of her and funny memories of her and they will sustain me until I am with her again. Until later...

Dignity Does Not Mean Denial

One of my running themes seems to be living with dignity. A large part of that is my appearance. In my mind, if I look sick, then I'll feel sick. I'm not in denial. I know I'm sick but a great deal of feeling sick has to do with my mental state. There are days when I feel down or blue but not particularly sick. My grandmother used to call it "having the blahs". Those are the days when I have to be very careful. If I give into the blahs one day, then I'll give into the blahs another day and that's pretty much quitting. There are other days when I just feel wrecked. Again, on those days, I must be very careful. If I don't give into the wrecked days and rest, my body pays for it. Control comes from paying attention to my body.

Just as looking sick makes me feel sick, looking good makes me feel good. In the beginning of my illness, while I was recuperating from surgery, I was careful to maintain appearances for Tom. Though at the time, he was only eight, he was sensitive and picked up on my fear and tension. He's an old soul and he has the gift (or the curse depending on your perspective) of empathy. I hid a great deal of my pain and illness from him for a while. But, I didn't hide it very well. He knew something was up! So after some discussion, Charlie and I checked Tom out of school and we took him with us to one of my cancer center appointments. He saw everything! He met the receptionist, made friends with the volunteers, watched the lab techs take blood, saw other patients while we waited to see the doctor and he met Dr. Barnes. In this day and age, it's rare but after examining me, he took the time and sat down and answered every question Tom had. And, I do mean all one million questions... Is Mommy going to die? How can you help her? Why do they take blood? Will I get it because Mommy has it? (That last one still gives me pause today because we just don't know...). We included Tom in my journey. By doing so, we took the mystery out of it for him and he no longer had to fear the unknown. After that, when I had an appointment at the cancer center, he wasn't as afraid or nervous. He could close his eyes and picture where I was and what was happening to me. The honesty of including Tom took a weight off of me. I wasn't hiding anything from him, I didn't have to watch every word I said for fear he might overhear something, and we as a family weren't in denial about the situation. Some might say he was too young but knowing Tom, the fear he had of the unknown was so much greater than the reality of our situation. One friend of Tom's overheard his mother discussing the fact that I was sick with another woman. The boy later got mad at Tom for one thing or another and cruelly told him that people who have cancer or go to cancer doctors die. Thank goodness we had included Tom in the reality of my illness! He was able to defend himself and set the boy straight without having to doubt himself or me!

Caution: Living with dignity and fighting with dignity does not mean living in denial. The most important thing you can do is be honest with yourself and your doctor. In an earlier post, I mentioned that Dr. Barnes was friends with my mother. After several months of appointments, Mom and Dr. Barnes spoke on the telephone regarding a business issue. At the end of their conversation, he asked how I was doing. Mom said I was doing great and Dr. Barnes felt like I must be doing well because I looked great at every appointment. Mom agreed and felt good about it. She called to let me know that even outside of the cancer center, Dr. Barnes cared. I appreciated the thought but I was upset. I told Mom, "You know how hard it is for me to "look great"." Mom didn't follow so I explained. With a fever, joint pain, and stomach issues, to roll and style my hair, put makeup on, iron clothes and choose accessories then paste on a cheerful smile cost me tons of energy. I would literally collapse at home after an afternoon at the cancer center. On top of that, I was throwing up on a regular basis. On the way to Montgomery, several times a trip, Charlie would pull over on the interstate for me to throw up. I kept a bottle of water and mouthwash with me at all times to freshen my breath. I took an extra outfit in case I vomited on the first outfit. I would repair my makeup so that the tears and sweat that came while throwing up would not show. All my "living with dignity" was masking my reality and the doctor didn't see past it. For some reason I get in a doctor's office and try to appear chipper. Learn this lesson from me: Your doctor needs to see your reality. They need to know how bad you feel and how often you feel bad. That doesn't mean you have to complain or moan and groan and carry on. Just tell the doctor what's going on. I finally told Dr. Barnes my theory that looking good equals feeling good. He agreed. He's seen very, very sick people with positive attitudes survive longer than expected. He's seen negative people die more quickly just because they give up. But, now Dr. Barnes knows, at least in regard to me, that you can't judge a book by its cover!

A Peeled Banana

A life-changing event makes its mark much like a light switch being turned on and off. One moment the light is on, the next it is not and life will never be the same. There are moments in life that burn themselves in society's mind: 9/11, JFK's assassination, the Challenger explosion, Princess Di's death... if you ask people about those events, they can usually tell you exactly what they were doing when it happened.

On a smaller scale, my life-changing event happened gradually. But, it happened with the same before/after effects of the large scale examples above. I firmly believe that I eased into getting sick. I was a working wife and mother of an active boy. As a family we trudged through school/work, came home to tackle homework, fix dinner, attend Cub Scouts or soccer practice... it never ended and it never allowed me a break. I worked sick so that I could bank my sick time for when Tom needed me. He had asthma that was uncontrolled for awhile and Charlie and I both had to save our sick time. I mention this because I now believe every time I was sick and did not allow my body time to recuperate, every time a doctor would give me a shot of steroids so that I could get back to work quickly, I compromised my immune system. As parents we all worked sick and that means something was always going around. From 1998-2002, I miscarried 5 times. Again, I did not give my body time to heal and my immune system suffered. It seemed like my body was at war with itself, which I now know is true. I had continual infections, I suddenly became allergic to things I had always been able to eat, my period was either non-existent or unending, everything was an extreme. Please take my advice and listen to your body. Use your sick time if you work. Give yourself the time you need to get over whatever bug you might have. If everyone did this, offices would not have the carousel of contagious infections that are present today!

Since getting sick, I feel like a banana that has been slowly peeled. I surrendered to this disease in well-meaning stages. I knew when I checked into the hospital for my surgery that I might have a recovery period of somewhere between two weeks and six weeks. When I failed to recover as planned, I took the whole six weeks off from my work as a bank's loan compliance officer. Six weeks turned into eight weeks and then I began to panic. We were a two-income family and we depended on every cent. Most of the time I took off was without pay. The bank, a small one that had only a small number of employees, needed me to come back. Every day I didn't report to work was another day someone had to do both their job and mine. I went back to work, even as my body protested. Sure enough my first day back, two women came to work with strep throat and a week later I had strep. Another absence for me only added to the tension between me and my employers. Having no other option, they offered me part-time status. But, after going over the options, all part-time work would do is give me an opportunity to catch whatever was going around. The money wasn't worth it on a part-time basis. So, reluctantly, I quit. They said when I was ready, I would be welcomed back to the bank. Quitting for me was like the first peeling of a banana. It was also admitting defeat.

The next peel of the banana came when we gave up our house and moved in with my parents. Because I no longer had an income, we simply could not afford our house. Another peel came when we had to sell one of our cars to pay our outstanding bills. I cried watching the car pull out of the driveway. Of all the things we gave up, that car for some weird reason, represented just how low I had sunk. Another peel for me was giving up my freedom. If I stayed inside and was pretty much isolated, I did not get as sick. If I went out, even to church or God forbid Wal-mart, I was guaranteed a trip to the doctor. And to add insult to injury, waiting in a doctor's office was a death trap for me. Slowly, like the peeling a banana, everything is stripped away until you, in all your imperfect glory are the only thing left. It leaves you feeling naked and vulnerable.

Feeling naked a vulnerable happens for many reasons. First, you are at the mercy of your doctors. Believe me, when you report stomach issues, doctors think of all kinds of embarrassing tests to perform! Get over it and let them do their tests! Worrying over your vanity only zaps your stores of positive energy. A second reason for feeling naked and vulnerable is that your relationships (i.e. your marriage, your friendships, your parenting ability and the relationship you have with your extended family) change. You no longer have the freedom to go out and about without worrying over your supply of hand sanitizer and taking prophylactic antibiotics. Often people just don't understand. Also, for me, with lupus, I usually don't look sick. Sometimes people say I look tired or washed out. Oh, how I wish I could look as bad as I feel every now and then! When your insides seemed eaten alive with pain and heat and you're so fatigued it's an effort to wring out a rag, looking "tired" just doesn't seem to cover it. It's such an understatement! But on the other hand, complaining doesn't accomplish anything except making your loved ones worry. I usually choose to not complain and to try and sound cheerful. It goes back to that whole living with dignity thing from my second post. Still, when my husband asks how I feel every morning (with that little line of worry over his brow) it would be so nice to answer truthfully, "I feel great today!". He calls me on my lie every time. Today was a long one and I have so much more I want to say on the topic of this life-changing event. I want to move on and discuss how I was actually diagnosed so suffice it to say that lupus disrupts life as you know it. But, just because it's disrupted doesn't mean that it can't be great and fulfilling! Until later...

The Waiting Game

One of the gifts my best friend, Becky, gave me for my collage graduation was Dr. Seuss' book, Oh, The Places You'll Go! At the time I thought it was funny that she would give me a book written for children. But, after reading it, the book is meant for any person in any stage of life. I read that book when I felt down. I read it when I was unsure or worried about making a big decision. I love it. I read it Tom even while I was pregnant with him. Later, he loved it so much I read it every night at bedtime for literally years. I have it memorized now and the pages of the book are soft and smooth from being touched so much. But I still read it every now and then. One passage is called, "The Waiting Place". The passage goes as follows:

The Waiting Place

Waiting for a  train to go
or a bus to come, or a plane to go
or the mail to come, or the rain to go
or the phone to ring, or the snow to snow
or waiting around for a Yes or a No
or waiting for their hair to grow.
Everyone is just waiting.

Waiting for the fish to bite
or waiting for wind to fly a kite
or waiting around for Friday night
or waiting, perhaps, for their Uncle Jake
or a pot to boil, or a Better Break
or a string of pearls, or a pair of pants
or a wig with curls, or Another Chance.
Everyone is just waiting.

NO!
That's not for you!

From November 2003, through May 2007, I was just waiting. That's not fair because it wasn't just me. My whole family was stuck in the limbo of waiting. I said in my first blog that I was going to share my experiences and what I've learned along the way, including both failures and triumphs. I have a flaw that governs every aspect of my life. It is the need to be in control. I'm a person who needs order, organization, and a plan for the future. I'm a list maker and I often find myself making lists of lists (i.e. Amy's list of things to do: make a grocery list, make a list of what to pack for a trip, make a list of bills to pay, make a list of Christmas gifts...it goes on and on) Being sick and then playing the waiting game took its toll and I found myself completely at the mercy of my body and the whims of doctors. I had no control and no say in this new life of mine. This is maybe the most important tip: Listen to your inner voice, pay attention to your body, and learn all that you can about everything. The smallest detail is important. I googled every possible diagnosis any doctor mentioned. I learned everything I could about every diseases remotely related to my symptoms. I continued to keep a diary that tracked my fevers and I added details about how I felt. Was I sick at my stomach? If so, what had I eaten? What time of day did I feel good or bad? (After a year of tracking it I found that my joints hurt more in the morning and would get better in the evening while the fever seemed to go up every afternoon without fail.) By doing all of this, the research and the diary, I felt like I gained some control. Also, when I would test negative for a disease, I kept up with it. That way, when I was sent to yet another doctor, I knew what I was talking about when we discussed possible diseases. I was proactive instead of reactive. Note: I've named Dr. Barnes and I will name other doctors in the future. Their names will only appear if they have helped me in even, any small way. Unfortunately on my journey to find a diagnosis, I have also come across doctors who have no bedside manner and can be cruel or who are so immersed in their research they can no longer see the patient behind the symptoms. I won't disparage the doctors. Instead, I'll say that I've learned something from them. That is, I am so busy fighting this disease, I have no time for negativity and no place for lofty egos. If I come across a doctor who can't or won't be a member of my team by communicating with other doctors, looking me in the eye, explaining what they do to me, answering the questions we, the family, may have, then I talk to who I consider my main doctor and we find someone else.

If you have an autoimmune disease, and you have yet to be firmly diagnosed, prepare to see a myriad of doctors. At one point, Dr. Barnes was looking for one disease that would answer all of my symptoms. The symptoms included fever, fatigue, joint pain, stomach upset, continual bacterial infections (usually upper respiratory infections and sinus infections). When we failed to connect the symptoms to one disease, I saw doctors that were specialized in one field. I had a pulmonologist for my lungs and an ear, nose, and throat doctor for my sinuses. It felt very much like putting a puzzle together. Each part of my body was a piece but nothing was connected. If this happens to you, request that each doctor communicate with the others. There's no sense in running the same test 4 times. For example, Dr. Barnes tested my blood, specifically components of my hemoglobin, called gamma globulins. There are several, and I'm not an expert, but the ones I know were tested on me was Iga, Igg, and Igm. Each component has sub-components and my IGG3 was non-existent for a while. You can bring those levels up with injections of gamma globulin or even transfusions. Each component of gamma globulin protects specific parts of your body. What made my case difficult was that while I mainly suffered with sinus infections and upper respiratory infections, the component I was missing (Igg3) is believed to be more related to the abdomen. We're still not sure what caused the Igg3 to be low. This is also an example of listening to doctor jargon and then doing your own research!

After exhausting local doctors, what we call "road trips" began. Living in the Montgomery area, I am close to both Atlanta and Birmingham. Those two cities house deep wells of medical knowledge in hospitals and they are both considered cutting edge facilities. I first went to Atlanta. Charlie and I went to Emory University and ended up in part of the Center for Disease Control. The doctor's main focus was autoimmune disorders, specifically AIDS. Fearing another "leukemia" drama, I immediately asked his nurse if I was referred to them because I might have AIDS. She assured me that while the doctor did treat AIDS patients, he was also a doctor for many autoimmune diseases. He ran more than 28 tests on my blood. I was tested for AIDS, West Nile Disease, Malaria... it all came back negative. At that point he told me that he couldn't help me anymore. So, Charlie and I came home and Dr. Barnes began to call doctors in Birmingham at UAB. One grouchy doctor, who saw me for my upper respiratory infections, treated me, put me on heavy antibiotics and then said, "There's something wrong with you and I hear what you say, but you can't prove it by me." That's when the self-doubt began. Self-doubt is something I still grapple with and it very often overwhelms me so I'll save that subject for another day. Until then, carry on and know you're not alone.

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.