I started my Mother's Day today with one of my favorite early morning rituals. I made a pot of coffee and took my mug out to water the garden before anyone else woke up. This ritual began when I was hyped on steroids and only sleeping 2-3 hours a night. I left the house so that my stumbling and poor motor skills didn't wake everyone. Come on friends, you remember your younger days when a few late nights ended with you sneaking your drunk butt through the door and to your room. It never failed. You would bump something, but while trying to catch that, would knock over a vase with your butt. I'm not saying I did that! Well, that is how I became while sick.
I needed the quiet moment today. The last few have been rough for me. If you read my last blog, you know that I had a small relapse or flare in my condition, but felt well considering. I saw my doctor last week and she ordered several labs. We were both confident though as I seem to have made great progress. As the week progressed, I felt tired, but nothing that alarmed me. I crawled into bed a few nights with my head hurting, but still wasn't concerned.
I met a friend for coffee Friday morning and celebrated a sweet lady's birthday. By noon, I was getting my hair trimmed. Friends, you know that you have lost a lot of hair when your hair dresser quits charging you because the job is so small! I returned home and had to lay down for a nap. John called me on the house phone and said that my doctor had called him. See, he is listed as my emergency contact. "But today is her day off," I insisted. "Yes, but she gave me her cell phone number and needs you to call her right away," John informed me.
I called her, but she was on the other line. I waited for 20 grueling minutes wondering what she had to say. The phone finally rang and she apologized for having to call John. "Today is your day off Dr. Welch," I informed her as though she wasn't aware. " I know," she expressed sounding out of breath.
"I am on my way back to the hospital to see a patient. I received a frantic call from
my Assistant though because your lab results came in today. Kim, there is something
going on here and I am very concerned."
"That would explain why you are calling me on my day off then," I responded. "Exactly!" she answered. Lets break it down. My TSH (thyroid hormone) fluctuated violently from 1 to 4 and back again over the last year due to my Hashimoto's Thyroiditis. This is a very common disease so that did not surprise anyone. When I was started on the immune suppressants for the Encephalopathy, this volatility stopped. In fact, my TSH was at 0.8 which led us to stop my synthetic thyroid. I know...blah blah blah. Okay, my doctor informed me that my TSH had jumped to 8 in just two months. We do not have any idea why this would happen suddenly. To make things worse. My antibody level jumped over 500 points. This is a good sign that my immune suppressants have quit working. We do not know why. "Is this why I had my latest relapse?" I asked. "That is what I am thinking," she answered.
So where do we go from here? We don't know. We started the thyroid hormone back, but we have not adjusted the immune suppressants. If they do not start working again, than Chemotherapy will be my only option. Unfortunately, there is not a great deal of experience treating my illness, and very little experience using Chemotherapy. We do not have much evidence whether this would even work, but it is the only treatment left.
I have to admit, this was the first time that I have actually been scared. I sat in the floor and sobbed like a baby. I want answers. I want someone to tell me that they know what the heck they are doing. I want someone to tell me I will live to see my kids graduate! I want someone to tell me that I can make plans for 5, 10, 20 years down the road. I am tired of the physicians asking me, " well... what do you think?"
So, my Mother's Day was a mixed bag of emotions. Standing in the garden with my coffee cup in hand, I was listening to my ipod. A familiar song came on and one of the verses struck a cord...haha...(What do you expect? My mother was a choir director and church pianist!) Anyway, these lyrics say it best:
There's a hurricane that's raging through my blood
And I can't find a way to calm the seas
Maybe I'll find someday the waters aren't so rough
But right now they've got the best of me
