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.

Red, White & Blue

When you are already reeling from a recent MS discovery, driving up to a building with a big sign out front that reads The Blood & Cancer Center is probably not going to make you happy. I knew I was going to see a hematologist. I did not know that his office would be in the Blood & Cancer Center. That sign might as well have been a giant flashing neon sign. The impact it had on my mental state when I saw it was overwhelming. My heart started to beat faster and I swear, I could barely breath. My legs were weak...Oh yeah, sorry...They were weak before I got there. (MS joke)

When you are going to see a hematologist you assume that you will be keeping your clothes on and that they will be drawing blood. Wrong! The first thing they did was tell me to take off my clothes from the waist up. Excuse me...what do my bare breasts have to do with my blood? Chalk up another one for humiliation.

As I sat there on the examining table in my beautiful open-front hospital gown, tears began to stream down my face. I wasn't prepared for this at all. Not for the BLOOD & CANCER CENTER and not for being bare-breasted anywhere but my bathroom, my bedroom and my gynecologist's office. I was emotionally prepared for needles, not nakedness! You have to work up to these things.

The doctor was very kind and full of the normal questions like "When was your last period?". He used my lymph nodes like a road map, even the ones in my groin area, which again, not prepared for. Next time give me directions, let me know what to expect. Seriously!!!

Eventually they did suck a few tubes of blood out of my arm and the results were good. My white blood count was back to normal. I guess I am not dying of cancer today. The Infectious Disease doctor who saw me while I was in the hospital, (because of my high white blood cell count) mentioned something about consistent elevated white blood cells being a precursor to Leukemia. Why put that in my head? I don't understand that about doctors. Just because you know it, doesn't mean you should always say it. I don't really want to know that I might get Leukemia, I only want to know if I have it!

The next stop, Cleveland Clinic. This time, I am asking what they are going to do to me before I get there. A woman needs to be prepared for these things. A lesson I should have learned when I showed up at the emergency room wearing red panties.

ID, WWF, WWE & M&M

Just a side note: You know you have a good sister-in-law when she smuggles peanut M&Ms and bottles of Coca-Cola into the hospital for you.

In an effort to decide why my white blood count is off the charts the powers that be decided to send an Infectious Disease Specialist in to see me. Can you imagine being my roommate and hearing that they are sending an infectious disease guy in to see me. I would be buzzing that bellhop to call the front desk and ask to have my luggage moved immediately but dear Rose just took it in stride. (Another side note...Never judge a 75 year old woman by her choice of television programming. The night I was wheeled into the room Rose was watching WWF which I found out is now WWE. Seems they have changed their name from World Wrestling Federation to World Wrestling Entertainment to emphasize the "entertainment value". I am just going to leave that one alone.) In spite of her television choices she was a delight in her own grumbly way and good for quite a few laughs.

The ID doctor decided there was no infectious disease issue which led to the neuro doctor deciding to have the lab take blood to grow a few blood cultures. I told them they could take what they wanted, but that all that was going to grow from my blood was sunflowers. I think they probably think I was on the wrong floor of the hospital, if you know what I mean. I also took to drawing things on their write-on, wipe-off memo boards. My last drawing was of a person in scrubs and a nurse's cap with fangs, huge bat wings and a huge hypodermic needle tucked under a wing, dripping blood all over the floor. This made even my one stoic no-nonsense HCA smile. I never actually admitted to being the culprit but it was fairly obvious since I was pretty much the only patient on the neuro-ortho floor who could walk by myself. I felt like a Weeble..."Weebles wobble, but they don't fall down."

On Friday I rode the V-Bus to MRI land again. This time they injected me with an enhancer so that the lesion in my neck would show up better. My wonderful night nurse had taken out the IV needle the night before because it was making the bone in my hand hurt. As fate would have it, the one time they might have needed to use the IV it was gone, so they just injected the enhancer with a hypodermic needle. No big deal. I had been poked so many times by then that one more certainly didn't matter.

Late Friday morning my Neuro came in to tell me that the MRI of my thoracic spine indeed showed another lesion and that this one enhanced, which I guess tells them it is still active and the culprit that was contributing to all my symptoms. Likely Diagnosis: Multiple Sclerosis

Armed with this information, I was thrown out of the hospital on Friday evening. I still had difficulty walking and they hadn't even decided on a treatment plan for me. You are, I'm sure, aware that the insurance companies know best what a patient needs and mine decided that I needed to go home.

MRI, or Valium is My New Best Friend

On Tuesday afternoon I had my first visit from my neurologist, a really fun guy who hands out Valium if he asks you if you can lie still for 45 minutes and you tell him, "only with drugs". He didn't come bearing the best of news. As of now he says I have symptoms of a classic case of MS. At least I'm a "classic" instead of one of those newfangled models like my vibrating bed. It seems there was something called plaque on my spine that showed in the CAT Scan so now they needed to do an MRI and look at my brain.

I am claustrophobic. Not in the same way that my older brother is. The way that makes you rip open elevator doors with your bare hands between floors if it hesitates for even a minute too long, but in an "I need a little air here" sort of way. I may have exaggerated just a bit when telling my doctor about the claustrophobia. I'm sorry, but if he wants to send me on a 45 minute vacation to la la land amidst all this MS insanity I am riding that bus!

My neuro also thinks out loud, is confident that he needs to be up front with you about everything (ummm, ignorance is sometimes bliss) and likely amuses himself by making possible MS patients walk an imaginary tightrope with their eyes closed. Hey Doc, I couldn't do that without MS!

So on the way to my MRI I decided to just pretend I was in a tanning bed. Mind over matter, right? Wrong! They are sneaky, those MRI people. They wheel you in backwards and never really let you see the tunnel you are about to ride in to. They stick ear plugs in your ears, pad the sides of your head to keep it from moving and then lock your head down with a Hannibal Lecter type gadget. They also stick a folded washcloth over your eyes in hopes that not being able to see will help you forget that you are in a tube being attacked by a magnetic jack hammer.

I love music so I decided to sing songs in my head while I was in there, but the only ones I could remember the words to were nursery rhyme type songs or songs from Sesame Street. "It's not easy being green..." Eventually I began counting. If the voice in my tomb said , OK Carolyn, This one will take about three minutes I would start counting one-one thousand, two-one thousand. I figured if by the time I got to 180-one thousand we hadn't moved on to the next step I would know the guy was lying to me. He wasn't, or I guess he could have been cause it is really hard to do the one-one thousand thing when you have had 15 mg of Valium. And just for the record, halfway through my MRI they decided they should flush out that unused IV again. Are they just bored?

Thankfully, I made it through the MRI without losing it and was wheeled back to my room. I hope I was really singing those Sesame Street songs in my head and not out loud.

They found an inactive lesion on my brain, a spot that told them that I have unknowingly MAYBE had MS for a while. The guy who read the MRI found something suspicious on my thoracic spine so it looked like I was going on another bus ride to V-Land for another MRI. I figured by the time they were done with all these tests I was either going to glow or stick to the refrigerator.

My neuro doctor asked if I wanted to see the pictures of my brain. I declined. I had this fear that there were going to be images of Big Bird and Kermit instead of the normal weird squiggly brain matter and I just didn't need to see that. Also, what if it was really small and everything I ever thought about my intelligence level was challenged? No way, I'm not looking at my own brain. Seems like bad karma or Midnight in the Garden of Good and Evil Voodoo to me. My husband of course, ran right out to see it.

Sleepless in Saint E''s

After applying ice and heat to my back all weekend, by Monday we had decided that maybe it was something more. I had spoken to my sister a few times and she expressed concern. I have a history of high blood pressure, although not terribly high, and the word stroke was spoken more than a few times. I eventually called my older brother who has run the gamut when it comes to back pain and asked his opinion. By the end of our conversation he had convinced me that I should go to the hospital.

I gathered things to take to the hospital in the event I should have to stay, and I would like to think I was applying the scout motto, Always be prepared, but in reality I would be horrified if someone else had to go through my "stuff" to try and find what I needed. So I hobbled around, gathering what I felt I would need all the while realizing that my left leg weakness seemed to be increasing.

I spent nine hours in the emergency room. I had an EKG, a CAT scan and a blood letting before they decided I should be admitted for a neurological work up. Before sending me upstairs to a room, my young and nervous ER doctor took the time to beat around the bush about what they suspected from the CAT scan and horrified us in the process. It was very apparent that he wasn't telling everything. As soon as he left the room I commented to Joe that he had scared me to death.

I eventually was moved to a room, but the new $16,000 bed was broken so I had to sit in a chair while they located another bed, wheeled the old one out and brought a new one in. Whoever thought these crazy beds were a good idea needs to be fired! They have a life of their own. Just when you think you are comfortable, the bed decides you aren't and growls and rumbles and rearranges itself, waking you from each and every possibility of sleep. Lets face it, this baby's got "BACK" and in order to accommodate my fluffy butt the bed kept deflating under it until I was sitting on the bed frame. Are all sick people skinny?

I eventually ended up trying to sleep with my head at the foot of the bed since it seems the foot section wasn't quite as sensitive as the torso and head sections. Honestly, I was ready to sleep on the floor. I would rather have had the ER gurney than this living, breathing, vibrating bed!

I don't know what made me think I would sleep anyway. Are nurses nocturnal? Do they just not like to see patients sleep? Are there secret cameras? Does a person watch these monitors and announce when one of us looks like we might be falling asleep..."Attention all nurses...Bed 15A is dozing. Quick, go take her blood pressure or maybe just for jollies, why don't you make her get out of the bed so you can weigh her." During the day they might check my BP and take my temperature a few times but at night I swear they must have checked it every two hours. They also felt the need at four o'clock in the morning to wake me to flush out the IV needle they had in my hand that never, the entire time I was in the hospital, actually had an IV hooked up to it. They even went so far as to try and get my roommate up at 3:00 in the morning for an MRI. She pretty much told them where to stick their MRI. She was a trip. (Wherever you are Miss Rose, I hope you are well.)