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.)

Wednesday, February 14, 2007

Things To Hate About MS

11. Feeling broken.

10. I can't plan ANYTHING!!!! As sure as you make a plan, that is the day you wake up feeling like crap!

9. Living with the constant fear.

8. IV SOLUMEDROL

7. Now that I know that MS is responsible for the deterioration of my vision it gives me just one more thing to hate about it.

6. I hate that I can't dance. I love to dance. I think I came out of the womb dancing. Having that taken away from me is like suffering the loss of a good friend. It is a huge part of who I am. You just try and hold me still when Twist & Shout is playing! I managed to slow dance with my precious husband at a wedding reception this weekend. Since my left leg now seems to have a mind of its own, it was no surprise at all that for the first time in 26 years I stepped on his toes a time or two, but we managed to laugh it off and just keep dancing. Joseph, you are my hero!

5. I hate when I am out in public and I stumble or lose my balance, that people probably think I have been drinking. I need to have a t-shirt made that reads...I'm not drunk, I have MS!

4. I hate MS because it makes me cry. I'm not a "cryer", I am a "laugher" and now I have to fight back tears every single day. Sometime I succeed, sometimes I don't.

3. I hate the realization that my photography as I have known it, has probably ended. I did a shoot yesterday and when I got home I was so exhausted that I couldn't even carry a footstool up our five back stairs and into the house. One of the things that made my portrait photography unique was my interaction with my models, not sitting behind a tripod!

2. I hate that I can no longer bounce up and down the stairs at our house. I have to carefully maneuver the 39 steps that get you in, out and around my house.

1. I hate that taking a really hot bath makes me feel like a truck hit me! (OK, so I've never really had a truck hit me so I can't be sure about how that feels.)

Friday, February 09, 2007

Update to the Update :)

The word is in from the blood work. My white blood cell count is still too high, so I will have to see the hematologist again. He is so not making me get naked again. At the very least he should have to buy me dinner first!

Update

I haven't updated in a while so I thought I would let everyone know that as of now, I am still hanging in limbo. I had another blood test (CBC) done on Tuesday to see if my white blood count is still wacky. If it is, I will have to visit the hematologist again. I am unable to begin medicine for the MS until they figure out the white blood count issue. It took two weeks to get an opinion on it from my family doctor (something about lost reports) so it has been slow going. I should know later today if I have to see the hematologist again.

I have good days and bad. I still have balance issues and my throat occasionally feels numb on one side. The facial numbness is still there but not quite as bad as it was for a while. I can't sit for long periods because the sitting aggravates the numbness. That explains why I haven't spent much time updating lately. Any available computer time has been spent working on senior photos and graduation announcements.

That is really all I have for now. I'll update when I know about the blood test results.

Monday, January 15, 2007

The Results Are In

My Mellen Center She-Neuro called this morning to let me know that nothing new showed up on my MRI. That is good news! However, she talked a little about "prime real estate" and how my spinal lesion is occupying it. This isn't great news. She said she saw no real point in a lumbar puncture right now, because based on the information she has gathered, treatment would be the same no matter what the lumbar puncture showed. That is good news. She wants to get me started on Avonex. That is good news and bad news. It has quite a few side effects and is a weekly intramuscular injection. I can't start the Avonex until I get the go ahead from my hematologist, other She-neuro and family doctor. She wants to be sure they are all on the same page and that they don't think the elevated white blood count will cause any problems with the medicine. However, once it is in my system it will hopefully stop any new lesions from developing.

I am feeling better. I still get facial numbness when I sit upright, but right now it is at least bearable. That is good news!

Saturday, January 13, 2007

Give me a "V"

On Wednesday, I had another MRI. Drugs for the event were provided by my local She-Neuro. I must tell you, Valium is just plain FUN!!! It made an hour and ten minutes in a tomb with a jack hammer seem almost like 15 minutes. Valium is also very entertaining.

One of my sisters called moments before hubby and I were to leave for the MRI. I was a little slow at picking up the phone so the answering machine came on as I was picking it up. Yes folks, there is a recording of me on Valium. I was laughing so uncontrollably that even I can barely understand what I was saying. I was laughing, because even on Valium I recognized how comical it was to watch me sway my way over to the telephone.

I haven't been told the results. (Of the MRI, I know the results of the Valium, LOL) I'm really not in any hurry to hear them. It's not like they will find something and then actually be able to fix it. They will just find something...

Tuesday, January 09, 2007

AA

While skimming my last two posts this morning I had to laugh out loud. If you didn't know me, you might think after reading those two posts that just maybe I am going to the wrong doctors. I sound like I need AA more than I need a Neuro. All I can say is, right now, whatever gets me through the day (or night). Tee Hee

Monday, January 08, 2007

Another Day, Another Problem

If you read my blog you know that I was up all night last night. It was around 5:30 AM when I actually went to bed. I chugged a glass of Tormenta, a wonderful Chilean Cabernet Sauvignon before going upstairs to bed. I rarely drink, just an occasional glass of wine with dinner, but MY GOSH...I just wanted to go to sleep.

The phone rang around 10:30 AM, while I was still sleeping. It was the new She-Neuro, Dr. Boissy from Cleveland Clinic. I had blood work done while I was at the clinic and it seems everything came back just fine except for, you guessed it...my white blood count is out of whack again. After some discussion, Dr. Boissy decided that March 7 was just too long to wait to get another MRI, so now I am having one done locally on Wed. (Jan 10)

I am really tired of doctors and loud magnetic fields and spending money.

Sleep Won't Come

It is 3:18 AM. I can not sleep. Sometimes when I lie in bed, my mind just will not shut up. I have a million thoughts dancing around in my head. Getting to sleep is sometimes a Catch 22. I need the TV on to go to sleep. The noise of Will & Grace or HGTV acts as camouflage for the many thoughts that are racing through my mind. I set the sleep timer on the television, and most nights I am in a deep enough sleep by the time the TV turns off, that I don't wake up at the snap and pop of it turning off. Not so tonight. Tonight when it turned off, the buzz and sizzle woke me right up. I was not yet in a deep enough sleep to dream past the sound. I stayed in the bed until about 1:00, then painfully aware that I had missed my opportunity for sleep, I stumbled (no humor intended) out of bed and downstairs to the comforting glow of the computer monitor.

The MS has been cruel as of late, keeping me from the very thing I love the most (other than my children and husband of course). During the days of the IV solumedrol event, when I felt all was wrong with the world, I could submerge myself in a sea of photographs, creating art as a way to drown my fear and pain. This last episode of aggravated lesion which began on Dec 27, has often kept me from the computer. Facial numbness comes when I sit upright and a wiggling internal tremor often comes when I sit with mouse in hand, my very solace from the mean disease stolen from me.

Lhermittes sign is a constant companion, an annoying reminder with every forward movement of my head. Sometimes in a moment of laughter or a moment of quiet, I might forget for a split second that my body is no longer mine. Then in an instant, the MS shouts back at me with the strange warm sensation that shoots down my right leg.

Last night, DH and I went to a restaurant on the outskirts of Cleveland by the name of Abuelos. I have decided to let the She-Neuro know that if she has other patients who are suffering from facial numbness, she can send them to Abuelos and tell them to order the Sangria Swirl. Once they have a Sangria Swirl, they won't really notice if their head is numb! Hmmmm, I could use one right now! It is now 4:00 AM. Sleep won't come...