The Waiting

After the MRI, we were off on a shuttle ride to the main hospital. You know you are at a big hospital when you have to ride a bus from one section to another. It can't be just any bus. There are colors that coordinate routes to different buildings at the hospital. If bigger is better, this one should rank right up at the top. (By the way, it is ranked among the top 3 hospitals in the United States, which says to me that it is ranked third, because if it were ranked first or second, wouldn't it be in its best interest to advertise itself as being the top ranked hospital in the US or in the top two ranked hospitals in the US.)

The dancing-neuro had given me my walking papers while I was at the hospital, so after dropping my bag of groceries and reading material on the hospital bed, (which by the way was another one of those bad bad inflatable beds that try to rearrange you all night long because it has a notion that you are uncomfortable) hubby and I went to the International something or another place at the hospital where they have all the food. You're still thinking about my bag of groceries aren't you? In the paperwork for the research study it indicated that they would be serving dinner to me from their "pantry". That could translate to many different things, but all I could think of was that they were going to bring me a lunch meat sandwich with mayo on it which I would never ever eat. I packed a few snacks, just in case. I also figured I wouldn't likely sleep much, so I brought reading material.

After dining at the International something or another (maybe Food Court?) we went back to my room, which by the way was the cleanest hospital room I have ever been in. It was almost time for my first shot of the MS medication, Avonex. My nurse/instructor bordered on being a stand up comedian which truly worked out well for me. She basically said, if I didn't get the shot in my leg, she would jab it in for me. LOL I had it in my hand all ready to go and just needed to take a deep breath before inserting it. I told her to give me a minute to get relaxed. It isn't everyday you stab yourself in the leg with a super-sized needle. She stepped back and started talking to my hubby and by the time she looked up again, I was pretty much done. Although the needle looks huge, it wasn't really so bad. Once you puncture the skin, it just feels like sliding a knife in butter. That probably isn't an analogy that everyone will appreciate, but truly, once you get it through the skin it is no big deal. The only thing that bothers me is that little "crwk" sound and feel as you puncture the skin.

They had me take Extra Strength Tylenol a couple of hours before the first shot to prepare for the side effects that may or may not (translate to likely will) happen. The side effects should begin about two hours after you have your shot and may last for up to 24 hours. I took my shot at 7:30. At 9:30 I started waiting to feel something bad. At 10:30 I was still waiting. By 11:00 I was sleepy and just couldn't wait any longer. I took another dose of ES Tylenol, just in case the side effects crept up on me later, then I fell asleep. Several hours later I woke up and just lay there quietly in the dark accessing the situation. Aches? No..Fever? Don't think so...Chills? Nope...I did have a mild headache, but nothing to fuss over. I swear I woke up all night long just waiting for the ax to drop and it never did.

When morning rolled around, they came in to draw blood again and as soon as that was over I was allowed to leave. The nurse had a bit of trouble siphoning out my blood (See Memoirs of a Lab Rat) and while she was trying to coax a trickle of blood out of my arm, a doctor came in and started to speak to me. She, I think, was French. I seriously couldn't understand anything she said except for "Thank you for participating in the study" or research or whatever she called it. I at least got the thank you part. She grabbed the tubes of blood that eventually dribbled out and was off to the lab to play. (She was a very nice doctor and it isn't her fault that my ears don't hear French.)

Hubby came to retrieve me. We walked back to the hotel, had breakfast and headed home. I was a bit fatigued throughout the day and the headache remained for most of the day but that was it!

Just a little side note......
I told my hubby the night before I went to the hospital, that I had a feeling I wasn't going to get the bad side effects. He agreed. We just had a feeling and were trying hard to be optimistic. When I was being accessed by the dancing-neuro, I told her that I had made up my mind that it wasn't going to make me sick. She gave me her best serious look and let me know that yes, I was likely to get the side effects. That most everyone does.

All I can say is...Always the Rebel!

And another note...

I talked to someone at Biogen Idec today. (The drug company) She suggested I use my magical powers to cure something or solve the problem of global warming. LOL Alrighty then....

Magnets and Needles and Xanax, Oh My!

Part II

So, I managed to make it through the IV fiasco with my sanity intact. (See previous post, Memoirs of a Lab Rat) Although, while having a needle dug into my arm, Lab Rat Coordinator #1 and Lab Rat Coordinator #2 realized that they did not have me check off boxes on the consent form giving consent for them to save my blood for future research. So, while a nurse is asking me to clench and unclench my fist in hopes of pumping up a third vein, I am asked to read and give my approval for my blood to be frozen. (Cari on ice!) I asked them nonchalantly if they realized they were asking a person with MS to do two entirely separate things at one time. I'm sorry, but my lesion-laced brain can only take so much. I had already played their little games (run though their maze) and my brain was still tired from the memory math game. I'm telling you...Whoever decided to give that test to a bunch of people with holes in their brain is the DEVIL!

Before the blood letting, I was examined by a neurologist who shall remain nameless, which is only fair since I have to remain nameless. (Afterall, I am just a lab rat.) One hint, she used to wear a tutu. She had to evaluate me as if I were not her patient. P'shaw! I'm sorry, but I took cream cheese pound cake to her on my previous visit. Let her just try and forget me! She did a bunch of tests on me, all of them more pleasant than the stupid make-me-feel-like-a-loser math game. I had to walk for her too, five laps up and down the long corridor of the Mellen Center. I had already taken a Xanax to prepare for the MRI before the walk, so if she had waited a little longer to have me walk, it may have been a lot more fun to watch.

Next on the agenda was an MRI. This time, the MRI was only of my brain (no spine) so it lasted about 25 minutes. The MRI guy (I don't really know what his title is), encouraged me to wear headphones and listen to music to help block out the clanging noise of the magnets. I opted out of that. There is far too much Georgia rhythm in this girl's blood and I could just see me start shaking my groove thang in the MRI coffin and mess up the whole darn thing. I thought it safer to just listen to the magnets so I would only have to do it once. I'm thinking, at only 25 minutes, I could probably do it the next time without the help of pharmaceuticals. But then again, why would I want to? I mean really, if I can ride that X- train for 25 minutes, why not?

Next Stop, The Hospital

To be continued...

Memoirs of a Lab Rat

Yesterday was the big day. I began my Avonex injections. I am here to tell about it, so I think it safe to say, it went pretty well. Since my last blog entry, I agreed to be in another MS research program. The new one is about MS and proteins or something or another that really makes no sense to me, so I won't even try to explain it. All I know is that it required me to have a bit more blood drawn while I was playing lab rat.

Once again I am sporting not one, but two blown out veins in my arm. My veins simply do not like the invasion of an IV. If all you want to do is draw blood, my veins cooperate just fine. But try and stick an IV in them and they start to play hide & seek. We eventually had success, only to have it shattered by 8:10. Since they were going to draw more blood for the research studies, they decided to leave an IV in to make drawing the blood less difficult. Translate...They SERIOUSLY thought they were saving me pain by putting in an IV for the blood draws because I was going to have blood drawn around 5:00, another at 7:20 another at 8:10 and one more the following morning at 7:30. If you add them up, that is four sticks of the needle to draw blood. I told them from the beginning that I didn't mind needles for drawing blood, but they insisted it would be much easier with the IV.

Easier for whom? Let's do the math! If you count all the sticks above, that is four sticks of a needle to draw blood. Hmmm, let's see...It took three stick attempts and some serious digging around under the skin for them to get the IV in. Then, they still had to take it out last night after the last blood draw because it was malfunctioning. This morning, it took two more sticks to get a good vein going for the blood draw because they had already completely used up my right arm trying to make an IV work. That makes FIVE STICKS. So, if they had just taken the blood with a needle as needed, I would have had four punctures. But because they were trying to make it easier, I got stuck FIVE times (six if you count jabbing a needle into my own leg, but we won't count that one since it is not about the blood letting.) Hey you guys, thanks for looking out for me! Next time, listen to me. And to think, they gave MEEEE a math test!

TO BE CONTINUED....

The Day Approaches

Finally, after seven months I am going to start treatment for MS. On Monday, I will return to the Mellen Center in Cleveland to begin treatment. Hopefully, this time I will go to the Mellen Center without being a big cry baby. MS is what it is, and no amount of whining about it or getting sad from seeing others in wheelchairs is ever going to make it go away. I can still walk, I can still talk, so I just need to quit whining and be thankful for what I am still able to do. It's not cancer. I didn't lose a child.

I have a little bit of fear at starting the medication. The last time I took medication for MS, I spent the next three months just trying to get back on my feet. Coincidence or not, my mind still remembers having to lie on my side for two weeks, so in my tiny non-medical lesion-laced brain, there is a connection. This is an entirely different medication. I talked about it in my last blog entry. It is called Avonex. Its job is to help reduce the chances of me getting new lesions and to hopefully reduce the number of flareups that I have.

Flu symptoms are the most common side effect of the drug and they may last for up to 24 hours after receiving the shot, which by the way I wasn't all that worried about until yesterday when I watched the DVD from the drug company. That sucker is big and I have to poke it into the muscle of my own leg once a week. I was expecting a tiny little needle like my husband uses for his insulin. Needles, shots, IVs, blood draws...None of that has ever been a very big deal to me. I just pick a point and focus and it is over. However, it is going to be hard to pick a point and focus when I have to focus on shooting myself in the leg. I feel the tension rising!

(For some reason, that sentence, each and every time I read it, makes me start to sing CCR's song Bad Moon Rising in my head. I see a bad moon a rising, I see trouble all the way. I hope it's not an omen!) I am curious to see how the flu symptom side effects (fever, chills, aches, headache) will effect me. I seldom get a fever. Even when I am seriously sick, a fever seldom accompanies my illness.

I am going to be a part of the bio marker study for Avonex. I will have to complete a couple of tests, putting pegs in holes, walking (and just for the record, you never walk the way you really walk when you know someone is watching you. OK, that was a hard sentence to put together, but you know what I mean, right?) and I have to listen to a CD, all the while adding up some numbers. My ability to hold onto things in my slightly holey brain may cause me a little problem there. If I can see it, I do OK. However, trying to hold onto some number as it slips and slides around in my less-than-perfect brain might be a problem. I guess that is the whole point of the test.

I sort of wish they wouldn't call them tests. Maybe they should call them evaluations or anything besides TESTS. The 11th grader in me who was always good with numbers yet struggled in trig (bad bad teacher) comes sashaying out in her Gloria Vanderbilt jeans, swinging her Farrah Fawcett hair and asking "What need will I ever have for this in the REAL world".

I will also have a neuro exam (again a word that really means TEST) from the dancing neurologist (who I am determined to show that I am not really a basket case about to take a dive off a bridge over raging waters), and an MRI. We all know by now how I feel about MRIs. Just bring on the drugs!

So, wish me luck. I'll update as soon as it is behind me.

[On a side note...I have spoken to many people associated with the Avonex drug over the last few days and they have all been wonderfully kind, knowledgeable and helpful. Score 1 for Avonex!]

$50.00

Today I have another appointment with the hematologist. It is a follow up visit. He wants to check my white blood count to be sure that the white count is, at very least, not increasing. Each and every time I walk through his doors, it costs me $50.00. That is more painful than the lousy blood sucker his office has employed who can't seem to draw blood without administering pain. I am no baby when it comes to having blood drawn. It is no big deal to me. I have had so much blood sucked out of me since September, that I am a pro. Nowhere, not the local hospital, not Cleveland Clinic, not the family doctor's office has anyone hurt me as much as the blood sucker at his office. Irony? I think so. This is a HEMATOLOGIST 'S office. They specialize in BLOOD! For goodness sake, hire a decent blood sucker!

The hematologist has given the OK for me to finally begin the MS medication Avonex. Ah, a double -edged sword. I want to start the medication. I certainly don't want the MS to get any worse if I can help prevent it. However, the medicine itself is a bad boy and will likely give me flu-like symptoms during the first 24 hours after I take my shot each week. Hopefully, with each week I take it, my body will become more accustomed to it and the flu symptoms will decrease. Avonex is an interferon which can cause depression, so if any of you who read this think I sound like I'm ready to jump off a bridge, give me the heads up before I jump so that I can spend another chunk of money every month to buy an antidepressant. I quite frankly, think the two should be packaged together with one drug bill for the month. Here you go Ms. Spano. Here is your Avonex and here is your bridge-diving prevention medicine. Makes sense to me!

On the bright side, maybe all this medicine buying will help me lose weight. How will I have money for groceries after buying all those drugs? Being sick is expensive!

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.

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.)

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.)

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.