Thursday, March 22, 2007

I'm Not Dying Today...

So, yesterday I had another appointment with the infamous hematologist. During my previous visit he wrote a prescription for a few scary blood tests that had to be performed at a hospital. Yesterday I received the results of those tests. Two of the tests were leukemia tests. The results for one of the Leukemia tests was back and thankfully it was negative. Although the results for the second test for leukemia wasn't actually back, (the Philadelphia Chromosome test) the doctor said that based on the other results, he didn't anticipate there being a problem with it. This is all excellent news. For three weeks I have had to walk around knowing I was being tested for Leukemia. Not fun!

There is however, still no explanation for my elevated white blood cell count. The doctor suggested a CAT Scan on my abdomen and pelvis to eliminate the possibility of a problem there. I swear, I am just their science project! I think I will talk to my gyne and see what he thinks of that! Why shouldn't he be in on the fun.

The Mellen Center at Cleveland Clinic called yesterday regarding the research program for the MS drug, Avonex. They are still trying to get everything lined up, but it shouldn't be too long now before I begin the MS medication. Even if they decide they don't want me in the research program because of the WBC issues, I should still start the medication relatively soon. If I am chosen to participate in the research program I will have to stay overnight at Cleveland Clinic the first time I take the medication so they can monitor me closely and do blood work 12 hours after the injection. Avonex is only available as a weekly injection at this time. REALLY LOOKING FORWARD TO THAT!

I just wanted to give everyone an update. Sorry it isn't very clever. Not feeling extremely clever today.

Friday, March 09, 2007

The Dancing Neurologist



OK, I confess. This entry isn't really about my dancing neurologist. I just like the title and since it is my blog, I'm allowed to use any title I want and I want to use The Dancing Neurologist.

Yesterday I had my second appointment at the Mellen Center for MS at Cleveland Clinic. We awoke to a fresh layer of snow and as a result decided to get an early start to Cleveland. We stopped for breakfast at the Waffle House, which in itself was almost worth the trip. Can you say scattered, smothered, covered and capped? If you don't know what that is, you need to find a Waffle House quickly!

I grew up surrounded by Waffle House restaurants. They have only recently popped up in our area north of the Mason-Dixon. I will say this, a Waffle House waitress without a southern drawl just isn't right! ( I wanted to say just "ain't" right for emphasis, but then I thought people would think me an illiterate moron, so I said isn't even though it just doesn't get the job done!)

By the time we finished our breakfast and were on the road, the snow had stopped and the sun was shining. It was a beautiful blue-sky day in Ohio.

We arrived at the Mellen Center much too early for my appointment and as a result we had about an hour to fill. Having spent the last hour sitting in the car, I decided that we should take a walk. Twenty degrees is still cold, even when the sun is shining so I admit our walk didn't last very long.

We stopped in at Citrus, the restaurant in the hotel in which we stayed the last time we were in Cleveland and chatted over a hot cup of coffee before heading back for my appointment.

The Mellen Center is a difficult place for me. When I am at home, living in my own cocoon, I don't have to constantly be reminded of the hatefulness of this disease. But there, at the Mellen Center, every wheelchair, every cane and every walker is like a beacon, a giant neon sign flashing the letters MS right in my face. I tried to position myself in the waiting area in such a way as to avoid the flashing neon signs but one lit up right beside me and caused me to quietly fall apart. When the dancing she-neuro called out my name, I had to wipe away silent tears as I stood to walk down the long corridor to her office. As we walked, she could see I was upset and kindly asked if I was OK. My mouth said I was fine. My head and my heart had other things to say.

The dancing neurologist seems to think I may be dealing with some depression. Seriously, how could I not be depressed? The very me that I am/was, was yanked up and blown apart in the wind like a dandelion. My photography and artwork, the very thing in which I find solace has been stolen from me. Sitting at the computer, editing photos and creating artwork now has to be limited to very small amounts of time. The sitting causes me to have a mushy brain. Since I have been limiting my time spent in the chair at my computer I am seeing some slight improvement. I will take anything I can get.

Sleep has been a challenge lately. I lie awake some nights until two or three o'clock in the morning. Before the MS, the thought of me having an anxiety attack would have been laughable. Last week I'm fairly certain that I had a full blown anxiety attack. It was not fun. It was justifiable. Not only am I dealing with the MS issues, I am also still in elevated-white-blood-cell-count limbo as well as dealing with some unexplainable "woman stuff".

I think I handle all of these changes fairly well most of the time, but once in a while I just have to be sad or angry about it all. I am only human.

The dancing neurologist, while trying to make me feel better told me how there are sixteen year old girls who have an MS attack and their lives are devastated by it forever. She made a point of letting me know that I am 49 and have held it at bay all this time. What she doesn't know is when you are young (and she is very young) that 49 might seem old. But to me, who has a mother who is 86, 49 still seems very young. I still have a lot of living to do. Don't misunderstand, I have no problem with the DN or her youth. She is very bright or she wouldn't be seeing patients at the Mellen Center nor would she have been the recipient of the Sylvia Lawry Physician Fellowship. I already have a great deal of respect for this young doctor. She was just trying to help me put things into perspective. I appreciate her candor.

I went to the hematologist last week in hopes of getting some answers concerning the elevated white blood cell count. Contrary to what I had hoped for, he felt me up again. At least this time I was emotionally prepared for the possibility. And honestly, I have had so many different people handling me over the last two weeks, that I feel like I should be the one getting paid! I won't know any results from the four blood tests that the hematologist ordered until the 21st of March.

There was good news as far as my lesions are concerned. There are no new lesions and the really nasty one in my neck does not enhance in the MRI. There are no new MS symptoms, I am still trying to overcome the ones that presented themselves in November around the time of the evil IV steroids.

Still no MS medicine as of yet. I may get into a research program at the Mellen Center so we are waiting for the blood work results before we start the medication. If the blood work results keep me from being in the research program, I will still be able to start the medication. We are just waiting to see if I can get into the research program before we start it.

I am trying to follow the dancing neurologist's suggestions for getting to sleep faster. We'll see...

All in all, I think I have felt a little better emotionally and physically over the last week. Again, I'll take it!
(I should probably explain the whole dancing neurologist thing. On my first visit to the Mellen Center, during the course of conversation, the dancing she-neuro told us that when she began college she was going to be a dancer. Dancer turned neurologist. Now THAT is a career change! And I am better for her having made this choice. Who knows? One day she may read my blog and a little sucking up never hurt.)