Thursday, December 24, 2009

I'm Number 1! I'm Number 1!

Everyone! Put on your big foam fingers and chant along with me! I'm number 1!

(No, she's not gone off her rocker... yet.)

I had my trial checkup last week on the 16th because waiting until the 22nd as planned would have meant I ran out of my drugs before I could see my supplier, er, trial coordinator.

This time I took my friend Karen (whose dearly departed husband I blogged about here) with me. She and I have been friends for at least 25 years now as she has pics to prove it even though my 11 year old swears that's a young boy in that pic. Can I help it I was more *svelte* back then? (ok, flat chested and narrow-hipped with a hairdo like David Cassidy) We just sort of went our separate ways about 15 years ago when everyday life wedged itself between us. Joe's death brought us back into each other's circle again.

So, she went with me on the long ride there and we had a ball. Amazing what stuff you carefully spend decades trying to forget -- and with the help of MS cog fog you successfully do -- until you meet up with someone who likes to say "remember when you _____(fill in the blank with some stupid thing you did)? That was funny as hell!" Glad I could amuse in an everlasting way like that. heh

Anyhow, the checkup was pretty much SOP with nothing new to learn. She had already told me of the unblinding of my TRANSFORMS phase III extension phase study and I know now that I have been on Fingolimod at .5mg for the entire duration. Nothing new to surprise me there.

Then I had my EDSS performed by the same neuro I had last time. She's a young lady who appeared to have swallowed a watermelon last time I saw her. She knew of my having been the last patient the eye doctor (for the study) saw before going into labor and so she had asked if I could rub some of my mojo on her hand because she, also, was due and ready to pop.

When I saw her this time, she's back to her skinny self and her baby is only 1 week younger than the 3 months it has been since we last met. My mojo once again worked and the legend grows exponentially.

She started doing all the follow-my-finger (not to be confused with pull-my-finger or that could be embarrassing) stuff and the exam commenced. Nothing remarkable to speak of.

The whole time I was explaining to Karen how I've always been amazed at the weird stuff they have me do and that I've always asked questions about what each test meant. Right about that time, the doctor was having me take the heel of my left foot and run it from knee to ankle down the shin of my right leg.

I said "I have no clue what she's learning from this tho." and Karen, not missing a beat, said "that's the test to see if you're sexy." My neuro burst out laughing.

She also had a good chuckle when she got to the question they always ask and I always (before) gave the same answer.... "Are you having any sexual dysfunction?" she asked.

"I don't know. I haven't had sex in 3 years." was always the answer before. This time, I had told Karen about that particular question/answer on the drive up and she gave me an idea for an alternative answer.

So, the neuro, staring at her clipboard with her pen poised to check the little box, asked me "Are you experiencing any sexual dysfunction?"

And, without missing a beat, I asked "Do you mean WITH someone?"

A good laugh was had by all.

Then came the 500 meter walk, otherwise known as "Walk this hall 25 times or until you drop dead." Karen was going to walk with me but she's got Oyster Foot and didn't feel up to it. (what's Oyster Foot? She got her foot all cut up years ago jumping from a boat into shallow water wearing only flip flops and got some bacteria in there that apparently won't ever go away and causes a constant pain. huh, I didn't know there was such a thing).

So I walked the hall myself and Karen stood at my exam room door doing cheers each time I passed by. On the final lap, she darted into the bathroom just across the hall from my exam room and nabbed a roll of toilet paper. Whirling off about 4 feet of paper, she jammed the end with the roll still attached into the file holder that was mounted on the wall beside my exam room and strung the rest like a finish line across the hall.

As I approached, I raised my hands in the air in victory and noticed she was humming the theme from Chariots of Fire as I broke through the paper finish line.

Giggling uncontrollably, I wadded up my "finish line" and jammed it into my totebag as a keepsake of the most rewarding 500 meter walk I have had in the trial. I told her I'd be reaching into my purse and whiping my nose or other unmentionables with my treasured finish line before I remembered what I saved it for.

As I was leaving, I asked the trial coordinator if I could know what my EDSS score was now that the trial was unblinded.

It was the best news yet! I'm a 1! (0 being normal and 10 being dead) I'm a 1!!!!

I'm Number 1! I'm number 1! And I owe it all to this pill. Amazing! Simply amazing!

Wednesday, December 9, 2009

Amazing News I Knew All Along, or the Unblinding of the TRANSFORMS Study

I was supposed to head to Jacksonville for me quarterly clinical trial checkup in the TRANSFORMS FTY720/Fingolimod study today. Rarely do I have to reschedule -- in fact I can remember only 1 other time in the past 2yr 4mo since the trial began and that was because of a hurricane.

This time I was faced with my 11 year old getting off a school bus at noon with nobody to pick him up if his mother was in Jacksonville.

The schools do this quirky thing as they have ever since the 2004 hurricane season when so many storms crisscrossed our great state of Florida. They now make the school day last 15 min longer every day, and if we have no days off due to inclement weather, school will let out 1/2 day early 1 day a month... always on Wednesday for some stupid reason. It couldn't be a Friday so we could plan a long weekend or something. It has to be Wednesday when people who work for a living have to find time to go get the kids and then find someone to care for them until their parents get off work.

Not that I have to worry about that because the only job I have that I can't get up and walk away from at the drop of a hat is caring for my elderly mother. And she's pretty self sufficient anyhow, so I can get up and walk away from that, too.

But I digress.

I didn't have anyone to pick my son up since my other son's car broke down. So I had to call my trial coordinator at 3:00 on Tuesday to see if she could reschedule my 9am Wednesday appointment.

Usually when I call I get her voice mail, so I was pretty much figuring I'd just have to take my youngest out of school all together for Wednesday and drag him to my exciting and ultra educational clinical trial. Sort of a science project field trip. At least that was how my mind was whirling as I tried to justify that approach.

But she answered on the first ring and had no problem moving my checkup to the 22nd instead.

"Since it's just a blood draw and your EDSS it's not a problem. Now, if it were an eye exam, that would be another story since that doctor is so backed up."

"By the way", she said, "I was going to call you today anyhow..."

(and I'm wondering WHAT NOW??!! and worried to death.)

"Novartis has changed the trial again." (so now I'm thinking I have another War and Peace sized Informed Consent to re-sign).

She continues on...

"They have unblinded the study and you are now in the Open Label Phase.

OH CRAP! was my first thought. The party is nearly over and I'm having way to much fun to take off my lampshade and go home. I'm hoping I can feign losing my keys in Novartis' couch and talk them into letting me just hang out for a really long time in their comfy clinical trial confines. With all the nice people who have become my only social circle outside of immediate family. (yes, I already know how pathetic that sounds, but the truth can be ugly).

Then she proceeded to unveil, without so much as a drum roll, the results of my particular study.

Seems she was just finding out what I've known all along. I've been on the Real McCoy since the first day of the trial, and the lower of the 2 doses at that. Just what I prayed for and got (unlike the pony when I was 10, but this is waaaaaay better in my opinion).

The choices were:
1. High dose Fingolimod (1.25mg)
2. Low dose Fingolimod (.5mg)
3. Avonex (the interferon already approved and on the market, used as a comparison)

I knew I wasn't on the Avonex because I never had the first side effect. Not any injection site irritation (beyond the "OUCH" that you would expect from a 2" needle) nor any of the notorious *flu like symptoms*.

And I was pretty sure that I must be on the low dose Fingo because I'm the same person who needs a quarter of the weakest Xanax they make to take the edge off for an MRI. In other words, just let me sniff the pill bottle and I'm good.

And now I hear that they are converting everyone in the trial to the low dose. If you were on high dose through the initial phase (where we all had to do the once a week shot and take a pill every day) you would have entered the Extension Phase on that same high dose. Now, however, you will be put on the low dose.

So that way, no matter what any of us started out taking, we are all going to be singing the Fingolimod Praise Song as one unified chorus all on the same drug at the same strength.

And sing it's praises I will!

I have now gone the longest length of time between relapses ever. No relapses in the 2 years 4 months of the study and my last one was in April 07. Another 4 months and that will be THREE YEARS RELAPSE FREE! Oh my God it's just like being given my life back! Nothing short of a miracle in my book.

Novartis, if you are listening, THANK YOU for the opportunity to be in this study. Thank you for pursuing it as a treatment for MS and thank you for giving it to me for free for life.

Ok, ok, I may have jumped the gun on that last part since you never said anything about that, but you have given me a taste of the good life... far more valuable to me than if I had won the lottery or any other material gain. You have allowed me to run and jump again, to get a head cold and not cringe in horror waiting for the relapse that always used to follow, and you have allowed me to keep up with my kids and grandkids in a way I never thought would ever be possible again.

It's going to be a sad day when I have to say goodbye to the clinical trial staff. They are my friends. But what I will miss most is that precious pink pill I have so long paid homage to here.

Because I don't have insurance and won't be able to pay for it again.

I will feel like Algernon, I'm afraid.

But thanks for the 3 years of high Quality of Life your trial did give me (I'm assuming you won't kick me out before it's over so that's why I'm saying 3 years).

Hey! I have an idea!! Don't you guys need someone to be on this long term to study, so you can see the cumulative affects over many many years?? I'm your volunteer!! And all it will cost you is one pill a day.

I'm easy like that! :P

Sunday, December 6, 2009

Blowing the dust off

And blogging again.

Sorry I let 2 months go by without so much as a peep. Rumors of my succumbing to side effects from the clinical trial drug have been greatly exaggerated (to paraphrase Mark Twain).

Since we (I) last spoke, I've just been busy with life. Living at Mom's means doing all those normal daily things like cooking and cleaning and doing dishes and stuff on a more regular (like normal people do) basis.

We no longer live smack dab in the middle of town so we can't just *run out* for whatever whim-driven thing we need. No, now logistics and lists and travel routes and plans all come into play. When it's a 20 minute drive to anywhere you want to go, you don't just run out for a gallon of milk.

I'm doing a LOT of driving these days. We moved east by 10 miles from our old place, while we put our son in the best middle school in the county 20 miles in the other direction. So we live a 30 min drive from school. Funny thing is, if he rides the bus, we have to get up 30 minutes earlier (5:30) in order to make the bus on time (at it's last stop 20 minutes from home). But if we drive the whole way we can sleep in until 6 and still get out of the house by 6:30 and make it to school by 7 so he can have breakfast before first period.

I'd rather sleep that extra 1/2 hour and get a 1/2 hour of one-on-one parent/child time in the morning. Of course we spend it honing our improv routines. My son is quite the comedian. It's only gotten him in slight trouble so far. One kid wanted to kick his ass for pronouncing his name with an exaggerated English "hoity-toity" accent. The other kids loved it and asked for a repeat performance. Jack Gogan didn't think it was so funny when he pronounced his name "zjaaaahk go-gaaaaahn" however and we had to give our son the "he's more afraid of you than you are of him" and "if he was going to kick your ass he'd have done it and not talked about it" pep talks.

Anyhow.... I got side tracked. He's a real comedian and I'm proud of him. He makes me laugh on a daily basis.

The other day we got the mail from the PO Box. The one on top was a window envelope that had great big letters on it saying "BILL ENCLOSED". He grabbed the envelope and held it up near his mouth and said "Bill! If you can hear me, we're gonna get you out of there! Just hold on, Buddy! We called the fire department and they are bringing the Jaws of Letter Opener."

I said "hey! At least it's a window envelope so he can see out." To which he replied "I can see through the window that they have your mother in there too... see her name right there?"

So, anyhow, we love our morning drives. And because I do so much driving all the time, I'm away from the house (and computer) more.

And because I don't have any earth-shattering news to report about Fingolimod or my trial, I guess I've just not thought about it.

I'm so BLESSED to be at the point in my life that I've had MS for 10 years and yet I can forget about it. I have no constant reminders other than some stiffness in my legs in the morning (which could very easily be due to age as much as MS).

I think about those MSers who are less fortunate. Who are wheelchair bound or constantly struggling in some other way to deal with their MS on a daily basis and I am moved to thankful prayer. I have to thank God daily that I have a normal boring life again.

And with that normal, boring life I would like to make some kind of mark on the world with the gifts I have been given.

I want to either write children's books or get back into doing my artwork. I used to be quite good and to turn from that and give it up like it's something I got tired of is sort of like telling God I didn't care for that scarf he got me. IT'S A GIFT! I need to appreciate and use it... before it could be gone in a flash. One good relapse and my drawing/painting/sculpting skills could all be a memory.

So maybe I should start drawing again.. and maybe I'll share my creations here. It'll give me a reason to come back and post.

As far as my trial goes, I'm headed up Wednesday the 9th for another poking and prodding session to be rewarded by 3 more bottles of the magic potion.

I heard that Merck got a "refused to file" letter from the FDA in regard to their oral med, cladribine, so that's making it a closer race. The drug companies can fight all they want over who gets to claim their spot in history as the first to offer a pill for MS. The winners are going to be the thousands of MSers who get to benefit from their effects.

Maybe not everyone will be as fortunate as I have been... to have no more side effects from the pill than they get from a daily vitamin... but hopefully they will.

And -- knock wood -- I'm STILL relapse free since April 07. The LONGEST span of remission I've ever had since being diagnosed.

I'm lovin' it.

Monday, October 12, 2009

One Lump Or Two?

Last Friday morning I awoke with a slight pain in my left breast. It's not unusual for me to be tender sometimes so I really just ignored it although I did remember thinking it was odd the pain wasn't bilateral.

Saturday it hurt a little worse.

Sunday I got to poking around to see if I could pinpoint the actual area of pain since it now seemed to radiate into my entire left breast.

That's when I found the lump.

This thing seemed as big as a ostrich egg to me, but, since my breasts aren't much bigger than hen's eggs I knew my brain was exaggerating.

So then I naturally went Googling for the better part of Sunday and by the end of the day I was convinced I only had months to live.

I wasn't going to tell John or my mother (with whom we now live), I told myself, until I had gone to the doctor and found out if there was anything I should be worried about.

Yeah, right. I cannot keep my mouth shut and within minutes of telling myself to keep it to myself, I was listening to the whole lumpy story poor out of my mouth. Like an uncontrollable case of diarrhea I helplessly sat there spewing forth detail after detail, well, much the same as I'm doing now.

Note to self: check to see if they make Imodium BM (for "big mouth").

Anyhow, I can't stop the story now as I'm obligated to satisfy the reader and I'm sure you want to know if I've been told I only have months to live, right? You do care, don't you? (Please just say you do, whether you do or not. Thanks.)

Monday morning I called the clinical trial nurse to let her know what was up and see if she could get Novartis to pay the bill for a mammogram. I told her I thought you could walk in for a mammogram and not have to have a doctor's order at the local radiology center.

She said that was for "screening" mammos, not diagnostic like she wanted me to have.

She said I needed to get with my GYN and he could do an exam and then write the order for the mammo or ultrasound or both.

I called the GYN and the he could see me after lunch, but the only problem was that when I had to see him back in June and have a pelvic ultrasound, he'd never been paid for the visit. $160 that Novartis promised they'd cover.

So this visit they agreed to see me but only if I forked over $100 cash at time of service. Having a big painful egg lodged in my breast, what choice did I have? Besides, my mother made me go.

I'm telling myself the whole time that I didn't really feel a lump and that's it's all in my head. After all, it's Breast Cancer Awareness month and the pink ribbons are everywhere, along with shirts and bumper stickers and TV specials and news stories. A hypochondriac like me can't HELP but end up with certain breast cancer after being inundated like that.

I don the paper shirt and wait.

The doc comes in and asks me how I am. Why do they do that? Don't they know why you are there and that, because of that, you are having a less than zippittydoodah day? How moronic, eh? He should walk in and say "Life's sucking for you right now, isn't it?" And then he should tell me his is too because his Mercedes is broke down and he had to take the Jag today. We could commiserate.

I tell him the series of events that led up to my sitting on his table in a paper shirt. He listens and scribbles and then has me lie down.

He starts to palpate my left breast and stops at the noon position. "Is that what you are talking about?" he asks.

Geeze, did I miss something ELSE?? I wonder to myself.

"No, it's right about 4:00, or half past 4, but not quite 5," I tell him.

"Holy COW! That's HUGE!" he says.

The red lights flashed and the warning sirens went off inside my head. This guy who does this for a living every day and has done so for the past 30 years or so just said "holy cow that's huge". CRAP! that's NOT good!

All I could think to say was "but it's squishy, right? so that's a good thing?"

And his come back was, "Uh-uh, that felt mighty firm to me."


He says "The ONLY good news I have for you is that breast cancer isn't NORMALLY painful, but that doesn't mean it can't be cancer. It could even be that you have a painful cyst right up against a tumor."

He went on to say that it was irregularly shaped and not round. His estimate was 4 centimeters by 2 centimeters. (I just now googled how big 4 centimeters is and it's about 1.5" WOW!)

He said an irregular shape and the firmness, coupled with my age, family history of my maternal aunt dying of breast cancer, plus the fact that I haven't had a mammogram since 2000 were all pointing at probable bad news.

He said we'd move on to the discussion of course of treatment after I got the mammo and we see what's what.

I asked if I should get it in town or wait to see if the clinical trial could schedule it for me at Shands in Jacksonville and I wouldn't have to worry about paying.

His response was that we needed the info here if I wanted him to be in on making a plan. It's too hard to get records from Shands. In fact, he never got the pelvic ultrasound results from back in June. Case in point.

He wrote the order and said we'd make a plan when the results came back.

The diagnostic center was just across the street from his office so I went right over to schedule the mammo. I was in luck, they said. I could have it right now.

Great! I really wanted to get this over and get onto the next phase of dealing with whatever the result.

Turns out the nice lady who did the mammo used to work with my mother (before she retired) in the Medical Records department of Putnam Community Medical Center in Palatka, FL. She asked all about Mom and we had a nice conversation while I tried to ignore the fact that she was handling my boobs the whole time.

She did the right side first and it was fairly uncomfortable, but when she got to the left side it was all I could do to keep from screaming. I very nearly drew blood as I bit my lip to hold back the pain in my chest. I was sure she was going to pop that lump no matter what kind it was.

Afterward she told me to stand right there and wait while she went to see the radiologist who reads the diagnostic mammograms while the patient waits.

So I waited.

She came back in and apologized saying "The doctor wants you to have an ultrasound now so he can get a better look at what he's seeing to make a more positive diagnosis. The girl who does the ultrasound work is over helping out across the street at the hospital and we've called her back so she's coming right over."

She had me take a seat in the waiting room and left me with a "hope everything works out ok for you" that just seemed to drip with sympathy.

I did NOT like the sound of that! I've had my share of medical tests done where the tech knew what was going on but couldn't let on that she/he knew anything and this sounded more like "tell your mom if she needs anything after you're dead I'll be there for her."

I sat and tried to get a handle on my fear. I kept telling myself that cancer doesn't hurt. But my mind kept coming back to everyone I ever knew who died of cancer and how they seemed to be in awful pain. I imagined that mine was now painful because of the stage I must be at... past the point of no return.

Oh hell, just bring on the morphine and get me outta here.

Fortunately I only had time to read part of the pamphlet on "Breast Cancer: Your Treatment Options" before the ultrasound tech walked in.

I didn't think anything could hurt worse than the mammogram did, but I was wrong. I actually had tears running down my cheeks as she pressed to get the best view of the lump.

She said she would be right back. She was going to go see the radiologist.

Then *the man behind the curtain* finally appear beside my table where I lay covered by a towel.

He introduced himself and said he was the radiologist.

He told me my breasts were chock full of cysts on both sides. "But you knew that, right?" he asked.

"No, I had no clue." I said, still waiting for him to get to the point.

"That huge lump your GYN felt was a grouping of 4 or 5 cysts all lined up side by side. They are firm because they are very full of fluid. Your breasts build up fluid and the body gets rid of it as your monthly cycle waxes and wanes," he explained. "Your body just isn't very good at taking out the trash."

"We call that Fibrocystic Disease" and that's what I see going on here. The lumps can be painful, tender, sore. I can relieve that pain by aspirating the fluid out with a fine needle. Would you like me to do that now?"

I politely declined. Funny how, since getting into the extension phase of this trial and no longer having to stick myself, I have regained my previous aversion to needles.

"Ok, that's fine," he said. "But if the pain increases and you find it unbearable, you can always come in and have me do the procedure."

I told him I'd keep that in mind.

I asked if Fibrocystic Disease was a precursor to cancer and he said he didn't see anything anywhere on my scans that even hinted at anything cancerous.

I couldn't help myself and the biggest smile ever broke out across my face.

"Oh my God, Doc! I was praying for good news, but I was thinking along the lines of surviving 5 years, not that the news could POSSIBLY be this good! THANK YOU!"

"Hey, I just call it like I see it, it's not me you have to thank." he said as his eyes glanced skyward at you-know-who.

So here it is God: THANK YOU! I owe you one. Well, I owe you more than one, but you know that.

So now I sit here with boobs that have been handled more in the past day than a cheerleader's on Prom Night, and even though they are so sore I'm taking Ibuprophen today, I'm one happy lumpy lady.

And with that, let this be a public service announcement to all you women out there. This is National Breast Cancer Awareness Month and you need to go have that mammogram done.

For about 2 hours of my life yesterday I was absolutely certain that I had a large cancerous tumor in my breast and I now know what that terrible fear is like. I was lucky this time. I could just as easily been sitting here writing about how scared I was of my upcoming chemo or mastectomy, etc.

So go get checked out. You know who you are. Quit putting it off. Too many people love you.

Friday, October 9, 2009

So Long Joe

The other day I was up at 5 a.m. A little early for getting my son up at the usual 5:30 to get our school day started, so I walked out to the box to get the morning paper. Usually this trip is one my mother makes in order to get her daily walk in, but I thought I would use the quiet time to at least read the headlines before we had to get the day in gear.

I was reading some story on the front page. I don't even remember what it was about. It was continued on page 7a, the inside of the back page of the first section.

Right where the obits are.

I scanned the page searching for the rest of the story when my eyes locked on a small picture probably 2" tall by 1" wide.

"I know that guy," I said to myself. I just couldn't remember who he was. My eyes flew up to the obit title. It was my best-friend-from-20-years-ago's husband. Karen's husband.

We haven't *hung out* for 20 years since we sort of slowly quit doing things together. Mostly it was my bad choice in men that prevented our friendship from enduring. I married a drunk who took up all my time and isolated me from the world while I tried to *fix* him.

She married Joe, a dream-come-true kind of guy who was everything any woman ever wanted in a man. Hunky, smart, loving, funny, a great cook, a good friend, an awesome host of the greatest keggers known to man... and a lot more I'll never know about.

Karen and Joe. The perfect couple. The ones you just knew would be together until the end of time.

I was looking at his obit and it said he died at the hospital, unexpectedly, at the age of 51.

That's not my idea of the "end of time" as was promised in all the fairy tales.

My jaw dropped and I pictured Karen hugging her pillow, overcome with sorrow and grief.

It broke my heart.

I couldn't call her because I didn't have words to say that could convey how very sorry I am for her.

Last night my sister (who used to work with Karen) went with me to the visitation.

The parking lot was packed with cars, just like the land around their place always was when the bonfire was going by the pond and the BBQ smells wafted across the hot summer nights and the sounds of laughter and pleasant conversation filled the air.

The door to the funeral home was opened by the polite and somber staff, and sounds of Lynyrd Skynyrd drifted across the room. We were led to a guest book to sign our names. I looked up and there, beside the book was an easel with a huge wedding photo of Karen and Joe.

I burst into tears.

I remember that day. It was the most magical day I ever experienced and I had always wished it had been my magic. But it was Karen and Joe's day. Karen was a beautiful angel all dressed in white with flowers ringing her golden hair and Joe was the knight in shining armor, (ok, a white tux) who was there to bring her a new life of joy.

One they both deserved. One they lived to enjoy for 16 more years.

I moved on from the guest book to cross the open doorway that led into the sanctuary where the people were gather in pews and milling about in quiet conversation.

I wasn't ready to go inside.

On the other side of the doorway was a lovingly created display of photographs. All the good times, captured forever on film. Every one of them had Joe's smiling face. Most of them were cheek to cheek with Karen's smiling face.

My sister and I looked up and I saw a face I remembered from 20 years ago but had no name to put with it. I saw lots of people I knew I knew but don't have a clue who they are. Whether it's just age related memory loss or MS stealing my past I guess it makes no difference; I am starting to accept the fact that time is robbing me of my memories.

Anyhow, this person from my past remembered me enough to smile and say "Karen was asking about you and if anyone had heard from you."

This started me crying all over again.

What a lousy friend I've been that I could let anything come between us. She'd always been the best friend a person could ever ask for and I just let this time slide by while I kept telling myself "I really need to call Karen and see how they are's been so long."

We entered the sanctuary and there on the back wall was a video of photos playing, with Joe's grin smiling over us as if to say "everything's going to be alright". I asked quietly if someone knew where Karen was and they whispered "she's down front wearing the black suit".

I made my way down there and got in line to greet her as everyone offered their condolences. She saw me over the shoulder of someone she was hugging and I could see in her eyes she was surprised and happy to see me. As happy as you can be at a time like that.

I gave her a big hug and cried in her ear, croaking out an "I'm SO sorry!"

What the hell can you say at a time like that??

She put her arm around me and we all walked over to a pew to sit and talk.

I told her just how envious I'd always been of her wonderful marriage and that she had the most wonderful guy in the world.

She tried to tell us the story of what happened, but understandably, she wasn't really able to talk about it.

From what I gathered, their time had been taken up recently with caring for a sick, elderly mother who was being hospitalized. Her's or his, it wasn't quite clear. Next thing Karen knew, she was rushing Joe to the hospital where the doctors came out and said "we're sorry, your husband is dying." And then he was gone.

She said "he new he was sick but he kept it from me."

Not sure what he died of, but that's a heck of a way for your spouse to find out.

I feel so bad for Karen.

But you know, I've speculated that if it was cancer and Joe found out a while ago, it was his right to refuse treatment, or to keep the knowledge to himself.

After all, dying is a very personal and private thing. No matter how close another human being might be to you, they will never know your personal death. They might be there to witness, but death is a solo flight.

Joe chose to keep the inevitable to himself and not dwell on it.

I don't know how long he had known he was sick before he died, but Karen said they had gotten to spend the last 3 years together 24/7 after they had both retired and she will always cherish that time.

Today is the memorial service. A tribute to his life. Afterward there is going to be a big party at the pond. Just like Joe would have thrown. Just like he would have wanted.

And after the party is over, and all the guests have gone back to their lives, I promise I won't forget about Karen.

I promise to be a better friend.

So long Joe, we will ALL miss you!

<3 Jeri

Monday, October 5, 2009

So anyhow...

I guess I shouldn't leave ya'll hanging in suspense when I announce something like having an MRI that I'm so not looking forward to and then that date comes and goes and not a peep from me.

Maybe it really did cave in and crush me after all, and all those fears were rational?

For all the other MRIaphobes out there, you can relax. I lived through it.

And with 1/2 of one of the two .5mg Xanax pills my trail nurse called into Walgreens for me, I very nearly fell asleep during the whole ordeal. This is the same MRI that I was yelling "get me out of here!" from before the forward movement of sliding me inside was even complete just a week prior. Funny how a drug can alter your perspective so drastically.

Actually, I was pretty anxious before they slid me in this time. The tech said we probably could have let me "soak" another 10 minutes for maximum effect.

I had to do some zen-ish calming deep breathing on the way in, but after I got a little relaxed, it seemed like it was over in no time.

The plan had been to envision the beach and do some astral projection type mental exercise, but the truth of it was that I got in there and started going over all the stuff I needed to do when I got home, and made a mental grocery list, worked out the logistics of some errand runs for maximum gas usage and blah, blah, blah.

Xanax makes me into the average boring housewife, I guess. And I'm not even married.

I got my next 3 months of meds, never heard a peep about the results of that angiolipoma biopsy, and never got pulled from the study. So, no news must be good news.

There seems to be an awful lot of internet chatter lately about Fingolimod/FTY720 and results of the 2nd year of the FREEDOMS study, and it's all good. Something like a 60% reduction in relapses over Avonex?

Quote from the Wallstreet Journal, September 30, 2009:
   By Anita Greil

ZURICH (Dow Jones)--Swiss drugmaker Novartis AG (NVS) said Wednesday a new study showed that patients taking its experimental oral multiple sclerosis drug FTY720 were more likely to go two years without seeing the disease flare up, paving the way for a possible launch as early as next year.

Well, I don't need any stinking WSJ report to tell me THAT! Let's see... I have to go to to find the answer...just a sec.

That's some kinda freaking record for me! In all of my MS-having history of the past decade, I have never had a hiatus like that!

I actually thought my streak was shattered last Friday. I spent the day babying my right leg which felt kinda like I had worn steel wool pants and then got dragged behind the car while holding onto a rope, sitting on the pavement.

But just on the one leg.

My skin felt raw and it was on fire...either that or packed in ice. I couldn't decide since there are only fine nuances that differentiate between the two.

Then, after fretting all day that I would have to call my trial coordinator on Monday, I went to sleep that night and awoke Saturday morning to blah, bland, back to normal. Whew. That was a close one.

I know it's got to happen again eventually, but I'm enjoying my extended stay in the Land of De Nial. As long as I can't feel the symptoms, I can talk myself right out of having MS... and even tho I really DO know I have it, there's no harm in pretending.

As long as I don't forget to take my little magic pill.

Tuesday, September 15, 2009

Extension Phase 1 year checkup -- part 2

Yesterday I was supposed to drive back up to Jacksonville to finish up my one year anniversary checkup for the extension phase of the Fingolimod trial. All I had left was the dermatology visit, the eye contrast chart, and the MRI.

Piece of cake, I thought.

I need to quit thinking that because inevitably it's NOT a piece of cake but rather a piece of dog poo I mistook for a piece of cake.

I get in the exam room at the dermatology office, waiting for the doctor in my backwards paper shirt and the pathetic little paper blanket draped over my lap.

He's just supposed to give me a quick once over and double check the scars of my last visit to his office where he decided my cute little beauty spots on my lower back needed to be excised to see if they were something more ominous. They weren't.

He comes in and shakes my hand and starts his exam by looking at the backs of my ears. That's odd, I thought, but didn't say out loud. I guess he's got to start somewhere and since I have a LOT of hair, maybe he thought they might get lost and forgotten all up in there (as they say down here in the south).

Ears; check. Neck, face and shoulders; check. Left arm; check. Right arm...

"So what does the study do if I find something I think needs evaluation?" he asks casually.

"They pay for it because that's why they sent me to you," I say. Why do I open my mouth?

"How long have you had this blue spot on your arm?" he asks as he tried to grab it and pop it like a big pimple or something.

"That thing?" I say, "at least a few years. Longer than I have been in this study, so it's nothing new."

"Does it hurt when I mash it like this?" he asks as he squeezes with all his fingers and thumbs.

"It doesn't normally hurt," I say, "but I can't be certain what you're doing wouldn't be hurting no matter where you did it."


Ever so casually he says to his assistant, "Get me a blade and a punch kit. We're going to have a look."

"EEEEEK!" was all I could say.

"I should know better to come here! Every time I go away, I leave a piece of me with you." (ala that Paul Young song).

He just laughed and said "What can I say? I like to collect souvenirs."

He buzzed through the rest of the exam and next thing I know I'm getting 3 needles of numbing agent circling my blue spot (more of a subcutaneous lump actually) and draped with a steril cloth with a hole in it.

Since it was the back side of my upper right arm, I had to twist my arm across my torso to allow the good doctor easy access with this Dremel tool kit.

I looked away at first but then noticed a bloody scalpel being handed from doctor to nurse across my body. Time to squeeze the eyes shut tight.

It took about 10 minutes tops to cut me open, gouge out the offending blue lump, and then sew me back up. It actually seemed like a fortnight. (Not really, but hey, how often do you get to use the word "fortnight" in everyday conversation?)

He said something that sounded like "Diagnosis: Antidisestablishmentarianism-oma" to the nurse, not really directing it at me.

I then said "hey, can you write that down so I can show my trial coordinator because I'd hate like heck to get the wrong 'oma' when I tell her."

He obliged me and after scribbling the name of the lump that heretofore had always just been called "Old Blue", he disappeared out the door leaving me to change from the sweaty, rumpled mess my paper clothes had become into my more durable cloth attire.

I looked at the paper and the word was a regular tongue twister. Here I thought "Fingolimod" was a mouthful.


(ăn'jē-ō-lĭ-pō'mə, -lī-)
n. A benign tumor composed chiefly of fat cells and containing an unusually large number of vascular channels.

When he first gouged it out of my arm and held it aloft at the end of his spear (I'm guessing here because my eyes were shut tight), he announced "Yeah, it's nothing to worry about. We'll send it off for path, tho."

I asked the nurse if he was cross stitching his initials into my arm since it seemed to be taking so long to close me up.

So, now I have this huge patch on my arm and I have to wait until the 24 hours are up at 11 a.m. before I can unveil his masterpiece of surgical excellence. I hope I don't pass out. I'm not much of one for movies like Frankenstein, and there's no looking at this trying to convince myself it's only movie magic -- don't be afraid.

And that was only the BEGINNING of my day.

I drove from there all bandaged up like a mummy (ok, well, I had to wear my short sleeve hiked up a little in order to get any sympathetic glances at ALL) and drove over to The Towers as I so affectionately refer to them now.

My trial coordinator was waiting for me and burst into giggles when I told her not to send me there many more times because he's whittling away at me so much I'll eventually disappear.

She had the contrast eye chart for me to do.

Black on white was just fine. Gray on white was a little more troublesome, and the slightly shiny letters on white were gone. She was pointing at the chart with her pointer and I was saying "there's nothing there."

After fiddling with the position of the chart and the blinds on the windows to alter the ambient light, we tried again.

This time I did better, but still a dramatic change from last time. Had it not been for the fact that this was the new deviation from the standard practice of the actual eye doctor performing the test in her office, I may have worked myself into a panic thinking I was going blind (even tho I could see just fine).

But since the eye doc is such a busy lady, my trial coordinator thought she'd help out by doing the eye contrast tests in her office instead.

So much for the constants in the science experiment that has become my life. I asked her to please mention to Novartis that we aren't conducting the test in the normal place and the lighting is different so they don't boot me from the trial and give me a candy striped cane as a parting gift.

After that was over, the only thing left was the MRI. I was scheduled to be on the same machine as always since the start of the trial so I knew it was the 4 foot tube and that it's no big deal.

At least it wasn't any big deal last year when I shot the tube with no drugs to calm me. I recall I was so relaxed I nearly fell asleep.

I guess yesterday was an exceptional day. I got in there and laid down on the table to get ready to slide into the tube and I just started hyperventilating.

It didn't help that the technician was trying to calm me by telling me all the stuff that was NOT going to happen to me. Stuff I may not even have been worried about was now thrust as actual scenarios into my conscious thought...

"Don't's not like it can crush you or anything."
"And there's plenty of air in there, you won't suffocate."

Did she really wonder why I mashed that panic button as soon as she left the room before the MRI was even out of neutral??

I had a washcloth over my eyes, headphones closing me off from the world and gripping my head, and a bird cage slid over my face. Then I was shoved into a paper towel tube and a muffled voice was saying "you're doing fine! just relax...nothing bad will happen, I promise."


"You want to get out?"


"Ok, that's fine. Tell your trial nurse you need some meds to do this and we'll reschedule."

"Ok, I'm so sorry. I didn't mean to waste your time. I just can't do it. The stress of having my arm gouged out unexpectedly a couple hours ago must be why my lunch wants to come back up."

So I went back to my trial coordinator who looked at me with a puzzled "how can you be in the MRI machine right now AND be standing before me?" look.

"I couldn't do it. I gotta have some Xanax, sorry."

"That's ok.... but..."


"Well, didn't you do it last year on the same machine without any drugs?"

"What can I say? I'm perfecting my hypochodria in my old age," I shrug.

So now I have another MRI scheduled for the day I have to come back up to get my Frankenstitches out.

Stay tuned for Extension Phase 1 year checkup -- part 3, or

The never ending clinical trial checkup.

I go back on the 24th.

Saturday, September 5, 2009

One Year Anniversary of the Extension Phase in Fingolimod Trial

It came and went. The two year mark of being in this clinical trial (including the past year that was the extension phase) happened on August 20th.

It came and went without so much as a "hey, today is the day!" comment. And what is so amazing about that is it went by because I was having a BORING normal day. No MS drama, no steroids, no hospitals, no canes, walkers or wheelchairs (although I own them all, just in case).

It was a Thursday and I was enjoying sitting around with my mom and sister for our usual Thursday night get together where we watch Big Brother or Survivor... whatever is in season.

But it is a monumental day in my life that should not go unrecognized. It marks the two year anniversary of the best decision I have ever made in my life. To join this clinical trial has literally given me my life back.

When I look back at where I was two years ago, I realize with some alarm how close I was to cashing in my chips, buying the farm, kicking the bucket, pulling the plug, punching my ticket... whatever you want to call it, I was at the end. I was looking at my future with MS, that drama queen that would steal the show and alter all lives in it's path, even if only for a few weeks at a time, and I just didn't want to do it any more.

I remember reading over the informed consent and weighing my options. "Either I take a chance with this stuff and perhaps die, or just stick with what I have known for several years and want to die."

The choice made itself. And I have not had a single documented MS relapse since starting.

With all the stress, heat and exertion of moving and trying to get the house up to snuff for the insurance company this past month, I know if I hadn't been in this trial and taking my pink power potion, there is NO earthly way I could even have imagined doing all that I have done without having to have a nap from the sheer exhaustion brought on by such an idea.

When I went to my 1 Year Anniversary of the Extension Phase Checkup, the lady neurologist who performed my EDSS test said (and I quote) "I really can't find much wrong with you. You really seem pretty normal to me."

To which I replied "My kids would beg to differ."

I took that other test where they play the recording of the guy saying numbers and you have to add the first 2 together and say the total, while remembering the last one he said and adding it to the next one he's going to say (if it sounds confusing, try having to actually DO it! A new number ever 5 seconds.)

I always get a perfect score on the practice round, get cocky and tell them "I don't need no more steenk-eeng practice rounds!" and then majorly flub the real McCoy.

But this time I ACED IT!! No fooling! I was surprised as you are. Well, probably more because you had to be there for the drama of it and all. The lady giving the test couldn't believe it either.

I also did the peg test, had an EKG, walked the hall 25 times (in 12 minutes) for 500 meters, had a PFT, gave about 6 vials of blood, and peed in a cup. Oh, and I had my eye exam.

Everything was just fine.

I go back on the 14th for my MRI and dermatology visit. Hoping everything is "fine" then too. Being a hypochondriac it would go against my very being not to worry that something was terribly amiss. So, that's what I'll worry about between now and then.

My next real worry is: what am I going to do when this stuff gets approved?? I won't be able to afford it. It sucks to think I might not be able to afford to pay for having even a normal, boring, mundane life. I'm not asking for a million bucks or to be able to travel the world or even a $100 Wal-mart shopping spree. I just want to live a life where my biggest worry is how to pay the electric this month. And not have to worry about "am I going to be able to walk this week?"

Novartis, if you're listening, the humane thing to do for all those of us who are so bravely offering up our very lives in order to further the advancement of this magic Fingolimod pill so that you may reap obscene profits from the suffering of hundreds of thousands of people with MS would be to at least give those of us who allowed you to poke and prod us in the name of Science free meds for life. Would that really be such a dip into the billions you are projected to make off this pill?

And you know I've been plugging this stuff for a couple years now for you. What better hype could you get than word of mouth?? You can't BUY that kind of advertising... but I'd never turn my nose up at free meds for life. Come on, have a heart. I'd be sure to blab all about it and you'd look like a bunch of humanitarians on top of delivering a pill to all those poor MSers sick of sticking themselves.

It's a win-win, don'tcha think?? :D

I'm Baaaaaaack!

Did you miss me?

Sorry for the long hiatus but it wasn't because I was stranded on some luxurious island sipping exotic drinks while laying in my hammock feeling the breeze and listening to the lapping waters.

No, I have been preparing to move and then actually doing it.

The reason I mention the "preparing" part is because that is what really took the longest. I've been in the same house for 20 years and I'll go ahead and confess now that I was a hoarder. I think it came from the fact that we had a devastating flood when I was a child (1972 hurricane Agnes caused the Genesee River in Wellsville, NY to fill up our first floor of our home). We lost darn near everything.

After that I just held onto everything. Well, it's either that or I was just too lazy to go through stuff and kept "saving it for later just in case".

At any rate, I had lived in this house for longer than I ever lived anywhere and so the "save for later" stuff had pretty much been allowed to take over my back room.

So I have been freed from my obsession through a couple weeks of sorting and a bunch of trips to Stinky Town (the dump) with trailer loads of stuff I no longer felt compelled to drag around with me through life.

I'm telling you, it's a liberating feeling to be leaning more towards a "zen" kind of minimalistic existence.

When you have to move all that crap it really brings its worth to the forefront. I had some stuff that I was really attached to go rolling down the hill at the dump and I didn't even shed a tear.

I didn't do a yard sale, ebay or even craigslist because there wasn't any time and it would have meant holding onto stuff longer and possibly having second thoughts. There wasn't even any lucky helper to root through stuff and say "You're really getting rid of this?? Can I have it??"

Well, my oldest son did help me (he, in fact, did most of the lifting/hauling) but he didn't get overjoyed or envious of any of the junk I was throwing away with the exception of a box of wires that could be used to connect various electronic components.

Right in the middle of our move, a guy came by from the insurance company to take pictures and report back to our new home owner's insurance company.

We got a subsequent letter stating we were canceled.

The reasons being:

  1. The bushes were too big (my 50 year old azaleas).
  2. The house was green and needed pressure washing.
  3. The yard needed to be mowed.
  4. Branches from the tree out back hang over the roof.
  5. The steps needed handrails on both sides.
  6. The laundry room steps needed handrails (even tho nobody has ever used that door in the last 20 years.)
  7. The trampoline was still up (I had told them it would be disassembled but I hadn't gotten that far yet).
  8. The project Jaguar in the back yard (inside the privacy fence) was listed as a "junk vehicle" that needed to be removed.
  9. There was "trash" all over the yard. (the stuff I was sorting and taking to the dump, along with all the construction materials I was saving from our remodeling efforts from the past 2 years).

So, while I was trying to go through all my "stuff" to pack and move, etc., I also now had to contend with a deadline to get the house in shape by Sept. 4th so I could find a new insurance company who would write a policy based on my "rebuttal" photos.

So, one day would be spent making trips to the dump, or filling up boxes with the "keep" stuff, and other days would be spent pressure washing the house, painting the porch, building handrails etc.

If it weren't for the help of my son, and John and his carpenter friend and motivational force Larry, I'd have never made it.


  1. Hacked the azaleas down to the ground so they couldn't argue that they were still too big or possibly touching the house (they are stumps now).
  2. Pressure washed the whole place with Larry's industrial sized pressure washer (I did very nearly all of that chore myself).
  3. Hired a guy with a riding mower to do front and back yards.
  4. Used Larry's pole saw to trim trees that hung over the house.
  5. Had Larry build handrails for front porch.
  6. Had him build a pair for the laundry room steps.
  7. Took apart the trampoline.
  8. Put the hood back on the Jag and covered it with a car cover.
  9. The "trash" pretty much took care of itself once we had the stuff sorted and packed or hauled to the dump.

Yesterday was the deadline and I emailed all the pics to our insurance company. They still want a few more pics, but they sent me a quote from another provider. Hopefully that will all be a bad memory real soon and everything will be back to normal and fully insured.

It's almost like they wanted a brand freaking new house to insure. The place was built in the 40's for crying out loud.

So, now the other part of the story.

We moved because a) we are struggling to pay the mortgage since John works construction and is out of work much of the time lately and b) my son and his wife and daughter (who live with my mother) wanted their own place and were going to move out and leave her living alone.

I couldn't have that. So, John and I talked it over and decided the logical solution would be for our family to move in and stay with her while my older son's family moved into our house and paid the mortgage. Problem solved.

The move is nearly complete but each party still has "stuff" at the other party's former home.

And none of this would have been possible without my Fingolimod. I think it gives me super human strength, or at least it kept me from collapsing into one big puddle.

All this, and I had my 2 year study checkup last week, but that's another post.

Thursday, July 16, 2009

An excerpt from an article on Novartis' performance in the first half of 2009. :

FTY720 (fingolimod), a novel oral development therapy for multiple
sclerosis, showed continued low relapse rates after four years in
patients with relapsing-remitting MS in an open-label Phase II
extension study. The data, presented at the American Academy of
Neurology (AAN) meeting in April, also showed no significant change
in the safety profile from three to four years. Data at AAN from
TRANSFORMS, a one-year Phase III trial against interferon beta-1a
(Avonex®), showed 80-83% of MS patients given FTY720 were
relapse-free for one year compared to 69% of patients treated with
Avonex® (p<0.001), with a safety profile for FTY720 in line with
previous experience. US and European regulatory submissions are
expected by the end of 2009. Initial results of the Phase III
placebo-controlled FREEDOMS trials are also expected in the fourth
quarter of 2009.

So, it still sounds like it's set for submission later this year, but then who knows how long the approval process will take assuming it will even get FDA approval?

Saturday, July 4, 2009

Small wonders

Drat the fact that my camera has dead batteries. I would love to show you what I discovered in my back yard.

I have been lamenting ever since the start of summer that I live on a major road that goes through my small town and we don't have a lawn mower or money to buy one or to pay anyone to cut the grass for us.

Because of this, I have tried to time it so that I am only seen outside after dark so I don't have to see the stares of passersby who gawk at the incredible height of my grass which has now V'd off at the top and gone to seed in all its splendid glory.

I try to spend most of my time behind the privacy fence I once attempted unsuccessfully to scale and ended up hanging by my bra from at rush hour for all to see. That way I have my ... privacy ... with my backyard jungle where the waist-high weeds don't bother me nearly as much.

But, as John so often tells me when his eyes glaze over while listening to one of my stories, I guess I need to GET TO THE POINT!

Well, ok, the point is that the other day I decided the only way this last 10lbs is going to leave my body is if I do something proactive like, I don't know, walking. I decided to walk the inner edge of the privacy fence and maybe the tall grass would actually be beneficial by providing some resistance and making me burn more calories.

I have to be careful where I walk. There are pine cones and dead tree branches hiding in the tall grass waiting to trip me up. So I look down.

Funny thing about that. Looking from my back porch around the yard all I can see are flourishing weeds and tall grass that makes me feel ashamed and embarrassed. But when I waded out in it and began making the circuit around the yard, I found so many hidden treasures that mowing would have never allowed to happen.

All the weeds were in full bloom. There are white flowers, yellow flowers, purple flowers and blue flowers all over my back yard that I never knew were there. After making only one revolution of the yard, I had to go inside and get my 10 year old son to come out and join me for the hunt for the elusive flowers.

Some were flat and oval, some were on stalks that bloomed all the way up the stem. Some were little puff ball shaped things. Some were shaped like bells.

It was incredible. It was beautiful. And I never knew it was out there in my back yard.

And it never would have been if I had a lawn mower or could afford to pay someone to cut the grass.

So, once again I am humbly reminded that there are silver linings to everything and many different ways to view any situation.

I was choosing to be embarrassed and stress over the tall grass. Until my eyes were opened to the beauty cradled beneath.

Don't get me wrong... I still wait until after dark to check the mail.

And I would have run out to buy batteries and capture the beauty to share with you, but as I write this John has gone out and fired up the weed eater and decided to tackle the back yard manned only with that insufficient tool.

Our back yard alone has to be nearly a half acre. And he's gallantly swiping back and forth. Vanquishing the tall green foe.

Obliterating the small wonders within.

I wish he would have done the front yard, but no dice. He says he'd rather have tall grass than have anyone who knows him drive by and catch him trying to weed eat the entire thing.

Oh well, it's like my dad said when he built his house and didn't spend much time on it's outer beauty but made the inside look like something out of Better Homes and Gardens... "I'm not spending my time making it look good for the neighbors - I want it to look good for us."

So the back yard is looking pretty good -- even if the neighbors will never know.

Tuesday, June 30, 2009

Newly discovered brain cell could be key to MS therapies

The article below was passed to me by a dear friend and it sounds both promising and exciting! Read on...

Newly Discovered Brain Cell Could be Key to Multiple Sclerosis Therapies

Institute researchers have identified a type of cell within the human brain that may be a previously unknown precursor to the stem cells that are capable of promoting growth of new neurons. The discovery could lead to new therapies for neurodegenerative diseases such as multiple sclerosis.

Bruce D. Trapp, PhD, Chair of the Institute's Department of Neurosciences and a leading multiple sclerosis researcher, said the cells called beta 4 tubulin (betaT4) are scattered throughout a region of the brain called the subventricular zone. This zone is known to be a source of stem cells capable of regenerating neurons. It is within the cerebrum, the part of the human brain responsible for social interaction, learning, memory, speech and language, and motor functions.

“Strategies for cell replacement to treat neurodegenerative diseases are very attractive and offer therapeutic possibilities. One example is generating the cells needed to replace the myelin that surrounds, protects and nourishes the neurons in the central nervous system. It's the loss of this myelin that causes lesions in multiple sclerosis [MS] brains,” Dr. Trapp said.

Oligodendrocyte progenitor cells (OPCs) generate new oligodendrocytes, which are required to produce myelin. “Unfortunately, OPC growth is limited, so MS lesions often don't remyelinate. Stimulating other types of precursor cells shows great potential in promoting oligodendrocyte production and remyelination in MS patients,” Dr. Trapp said.

Dr. Trapp's research points to betaT4 cells as one of the precursor cells needed for remyelination.

The presence of betaT4 cells in the subventricular zone peaks during the later stages of fetal brain development, but decreases shortly after birth – suggesting the cells' role in forming neurons. Researchers also found that the number of betaT4 cells significantly increases in the subventricular zone that borders MS lesions in the white matter of brains.

“In our research, we observed that the myelin generated by a relatively small number of transplanted betaT4 cells exceeded that of another known progenitor cell,” Dr. Trapp said. “It's still not clear if betaT4 cells are true stem cells or primitive precursors to stem cells, and the potential of stem cell therapeutics to treat neurodegenerative disease requires additional studies of stem cells in human brains.

“But we propose that betaT4 cells represent a cellular source for the latter stages of myelination and neural repair in the central nervous system” he said. “They could be a promising new direction for cell replacement therapies for neurodegenerative disease.”

Dr. Trapp's collaborators include Chuanshen Wu, PhD, Ansi Chang, MD, Maria C. Smith, Roy Won, Xinghua Yin, MD, Susan M. Staugaitis, MD, PhD, and Grahame Kidd, PhD, of the Institute's Department of Neurosciences; Dimitri Agamanolis, MD, of the Department of Pathology at Akron Children's Hospital; and Robert H. Miller, PhD, of the Department of Neurosciences at Case Western Reserve University School of Medicine. The findings appeared in the Journal of Neuroscience ( June 16, 2009). The research was supported by grants from the National Institutes of Health's National Institute of Neurological Disorders and Stroke and the National Multiple Sclerosis Society.

Source Article

RIP Billy Mays

He missed his calling and should have been a comedian. I'd have liked to have seen more of him than just the 2 minutes of yelling at me to buy something.

Loved watching "Pitchmen".

Infomercials just won't ever be the same again.

Monday, June 29, 2009

My next move...

Inspired by all the videos floating around out there as a result of Michael Jackson's untimely death, I have decided this is the next thing I'm going to try to accomplish.

I want to go for my visit to the clinical trial checkup and have the neuro performing the EDSS test ask me to walk for him. I just want to see the look on his face when I pull off the Moon Walk.

I'll probably lose points off the mental stability part of the test (with copious notes accompanying the test outlining my Wacko Jacko impersonation). Heck, they may even admit me for further evaluation, or maybe even halt the clinical trial because of this heretofore unknown side effect.

I just want to see their faces.

And between tests, when I have to walk from one office to another... I'm going to say it's the only way I can now walk. BWAHAHAHA!

I'll be lucky if I can do it at all. So far, in preliminary practice sessions in my hardwood floored hallway and stockinged feet, I have been unsuccessful at recreating this move in a smooth, flowing fashion.

First off, I have to put my hands on either wall to my sides in order to maintain my balance in the starting position, which ends up more reminiscent of Daniel about to pull of the Crane kick in Karate Kid.

Maybe I should just practice that. Then when the doc goes to wack me on the knee with his rubber mallet, I can say it was just my hyper reflexes. Not my fault.

I don't know what is driving me to conquer moonwalking at this time in my life when I couldn't do it back in the 80's.

Maybe I do have some mental deficit.

Or maybe I should just get a life. :-)

Wednesday, June 24, 2009

My own personal update in the FTY720 TRANSFORMS clinical trial

I just posted about the newest findings that kick butt about FingoHeads from the Phase II trial being still relapse free after FOUR YEARS (standing ovation for them, please) but I thought I should throw in my own two cents about my experience thus far.

I started in August 07 so that means I have been in this clinical trial for
this long (according to )

During this time I have never officially had a relapse, although I have informed my trial nurse at least 2 times that I remember that I thought I might possibly be having one.

And lately I have been having not so much of a relapse, but just a recurrence of oldies but goodies. For instance, my legs are doing that fire and ice thing again where my calves feel like they are burning or really cold. The other night they cramped up really badly, too. I remember both of these symptoms from the very last bona fide relapse I did have -- the one from April of 07. It was much more pronounced back then. After having just a taste of it lately I wonder how I made it through life back then where I was in a constant state of misery.

These latest symptoms are only cropping up lately because I'm trying to do too much, or getting myself stressed out, or not getting enough sleep, or a combination of all of them.

They really started right around the time my son was going to graduate from elementary school and I realized he's growing up despite my efforts to keep him forever young so that I, too, shall be. With all the end of year parties, and then the HSV attack which led me to the GYN only to find out I need that ultrasound of the ovarian cyst and getting reprimanded about ovarian cancer, and then over working myself, etc. etc.

Well, these symptoms are like some sort of divining rod or something. When I have all the right circumstances, my legs start to burn and I get that buzzing down my spine and everything starts cramping up. All as if to tell me, "hey now! Take it easy!!" I don't find water, but I do find my body needing rest.

Once I've had a good night's sleep in my recliner (I've been sleeping there for 2 years now [possible Fingolimod side effect alert!!] and, try as I might to go back to a real bed, I just can't do it) I feel all better.

When I tell the trial people about these "almost" relapses, I am asked to grade them on a scale of 1-10 as far as severity goes. It's always been a 1, or 2 at the most, so they end up conveniently forgetting that I called. Nobody ever really checks it out to follow up with poking/prodding/testing to verify whether or not there is disease activity.

So, while the news I posted in my last blog entry is GREAT, I just wonder how many of us have actually had some form of a relapse that went unnoticed.

I still proudly say that I am relapse free after more than 2 years (since April 07) but sometimes I wonder if that's really the case...

Or maybe I'm just being true to my hypochondriacal self?

Only my hairdresser knows for sure. (for your younger people, that's a Clairol commercial from the 70s I think).

I'll have to ask her next time I see her.

Oral Fingolimod Lowers Disease Activity in Patients With MS for Up to 4 Years

Just got this in my alert email today and wanted to share. My favorite part is in green.

Oral Fingolimod Lowers Disease Activity in Patients With MS for Up to 4 Years: Presented at ENS

By Judith Moser, MD

MILAN, Italy -- June 23, 2009 -- Patients with multiple sclerosis (MS) show sustained clinical benefit when treated with the novel sphingosine-1-phosphatase receptor modulator fingolimod (FTY720), according to the extension phase of a multicentre study presented here at the 19th Meeting of the European Neurological Society (ENS).

Ludwig Kappos, MD, Clinic of Neurology, University Hospital Basel, Basel, Switzerland, presented the 4-year follow-up findings of a phase 2 proof-of-concept study investigating oral fingolimod in the treatment of MS here on June 22.

Fingolimod targets MS via the immune system and probably via the central nervous system as well. "The main mode of action pertains to a redistribution of lymphocytes, which normally stay protected in lymph nodes," Dr. Kappos explained.

The core study, which covered the time between baseline and 6 months, compared once-daily fingolimod 1.25 and 5.00 mg with placebo. In the randomised, dose-blind extension study (months 7-48), patients formerly on placebo were rerandomised to once-daily oral fingolimod 1.25 or 5.00 mg so that all patients were on active treatment.

As Dr. Kappos noted, the number of circulating lymphocytes was permanently reduced in all dose groups by approximately 70% throughout the extension period.

Similarly, the number of gadolinium-enhancing lesions remained low in all arms over 48 months. More than 95% of the study population were free of gadolinium-enhancing lesions at the end of the 4-year extension period.

These findings translated into a low annualised relapse rate. Most patients (51%-70%) remained relapse-free for up to 48 months. Furthermore, most patients were free from disability progression at the end of the study.

"Fingolimod was well tolerated," Dr. Kappos reported. "The long-term safety profile was in line with previous findings."

In the group with the highest cumulative dose, a tendency toward higher infection and nasopharyngitis rates was seen. However, serious adverse events were equally distributed between the dose groups.

Blood pressure and pulmonary function measurements remained stable during the extension study. Asymptomatic elevations of liver enzymes were observed in 16% of patients without any evidence of serious drug-induced liver injury.

Seven cases of localised skin cancers, which were detected by regular examination, occurred within the first 36 months. Between months 37 and 48, no new cases were seen. "This indicates a lack of cumulative risk with increasing drug exposure," Dr. Kappos said.

A phase 3 study program is further characterising the efficacy, safety, and tolerability of oral fingolimod in patients with MS.

Funding for this study was provided by Novartis Pharma.

[Presentation title: Majority of Patients With Relapsing Multiple Sclerosis Receiving Oral Fingolimod (FTY720, a Sphingosine-1-Phosphatase Receptor Modulator) Remain Free From Any Inflammatory Activity: Results of a 4-Yr, Phase II Extension. Abstract O21]


Thursday, June 11, 2009

If you don't have insurance, just don't get sick. Simple.

I'm so sick of this crap. I've been dealing with it (like a LOT of other American's) for years now. A diagnosis of MS that keeps me from being able to get health insurance, thus effectively cutting me off at the knees when it comes to health care.

I just got a call from the imaging center saying that the idea of billing Novartis for the ultrasound I need of my left ovary is "too third party" for them. I can't have it done.

Great. There is a machine in that building and a person who gets paid by the hour to operate it, that is just so close I can smell that stupid gel they smear you with, BUT I can't get it done so I get to just GUESS if I have an ovary-bomb waiting to kill me.

Or, I can pay thru the nose. Money I don't have that I am trying to scrape up to keep from losing my home (a whole different ball of stressful worry wax).

Funny that Novartis' check was good for them last year when they did the first ultrasound that discovered the cyst. You get one new person in the mix and they have no problem telling you NO.

How can one human being sit there and not break down into tears having to tell another that a possibly life-saving procedure that could change the whole direction of the remainder of the other person's life is going to be denied them because they don't have enough pictures of dead presidents hanging around???

This is freaking absurd and God is looking down on us ready to throw up because it makes him so sick to see what we have become as a society. Maybe he should. Maybe it should be a big plague of puke raining down on us all, clogging all the precious machines that only the wealthy are privileged enough to be treated with. Clogging everything and sickening everyone. What would the insurance gods do then?? Go hide under a big red umbrella? I think not.

And they would be running around screaming in fear as the puke slowly killed them. And the rest, like me, would be calmly standing by welcoming them to our world.

there. I feel better.

Maybe I can get someone to loan me the money.

And then I better just pray it turns out to be nothing because if just DIAGNOSING ovarian cancer can be so elusively hard for the uninsured to accomplish, treating it will take an act of... well, God.

On a scale from 1 to 10, or, the EDSS

Today was visit number 17. It was to be a short checkup (after the long, gas-guzzling drive there)to include blood draw, vitals, and the Expanded Disability Status Scale test.

This test, as I've blogged about before is performed by a neurologist and it's the neurological equivalent of the 20 Questions game, but instead of "Is it bigger than a bread box?" you get questions like "Do you have hesitancy/urgency when urinating?". I always want to ask them something equally embarrassing in return and see how they like it...

"Do you have to sit like a girly-man when you pee?"

Anyhow, today's test was performed by a doctor whom I have seen before for the same test. He recalled my answer the last time he asked the standard question "Do you experience any sexual dysfunction?" and my reply was "Does not having any sex count as a dysfunction? No? Then I don't know if I'm sexually dysfunctional."

He had a good laugh over that (again) today, with the young guy accompanying him (remember it's a teaching hospital and I was the live specimen today).

The test went as it usually does, with notes being made that my left side was more outta wack (that's a medical term) than my right, which seemed in perfect wack.

At the end of the test I got 3 pleasant surprises.

1) When I asked what, theoretically, would happen if I couldn't finish the 500 meter walk, the doctor replied "What? Are you tired today and don't feel like it? Because it won't count toward your score if you don't want to walk."

So naturally, being of sound mind, I stated that I didn't feel like it. Thinking back now, that could have been a test of my mental acuity in that nobody in their RIGHT MIND would choose walking a long-ass hall 25 times over opting to take a pass. Therefore, I am in my right mind today. whew!

And the other pleasant surprises, you ask?

2) I got to listen to the neuro who performed the test explain to his student how to grade an EDSS test.... and I HEARD MY SCORE!! I have never before had an EDSS test and known what the results were because of all the hush-hush "we can't let #8 know anything about her trial stuff" kinda treatment.

I scored a 1.5. on a test where 0 is perfect and 10 is dead. The only thing they ever told me before was that I was closer to 0 than 10. Well, duh. I could have figured that out on my own.

and last but not least, the most pleasant of all surprises....

3) My extension phase is NOT one year as I could have SWORN I was told to begin with... it's 2 years! YIPPEE!! Guaranteed drugs for at least another year and 3 months. Whew. A Fingohead's worst nightmare -- to be denied her FTY720 -- avoided for another 365 days, or 12 months or 52 weeks but who's counting?

The rest of the visit was just getting my new pills and trying to work out the details of Novartis being cajoled into paying for my recent GYN visit due to an HSV outbreak and the need to be seen as my trial coordinator insisted. Seems if they insist, they should pay, right??

Well, the GYN visit collapsed from being about HSV into a scathing lectured (once the doc reviewed the notes from my last visit) about how I never got a follow up ultrasound regarding that cyst on my ovary.

He launched into a tirade about how there are no perfect tests for ovarian cancer and that I needed to stay on top of this. When he said "three months" it did not mean "or in a year, whichever you prefer".

So now here I am waiting to see if the drug company will pay for a follow up ultrasound of my ovary, which, if I self-paid would cost me $231 (might as well add a string of "0's" after that for either way I can't afford it).

I don't have the desire or mental strength to spend time worrying about the possibility that I have ovarian cancer. I just can muster the horror. Does that mean I'm slacking as a hypochondriac? No, whew, I was worried there for a minute, but any hypochondriac that can actually worry that they are somehow not performing correctly as said hypochondriac, well, they have nothing to worry about. How ironic.

I'll try to blog more when I have something profound to say. I've been waiting for profound thoughts and that's why it's been so quiet here. Maybe I should just stick to posting profound thoughts on Twitter since it is less strain on the brain to come up with profoundness in 140 characters or less.

Hope ya'll are staying relapse free or able to fake your way through. It's too beautiful out today... as my father would say "I think I'll leave it out."

Sunday, May 24, 2009

Time once again for the Blue Crab Festival or What was I thinking?

Last year found me venturing out to the Blue Crab Festival for the first time since my diagnosis in '99. Fingolimod had given me back so much of my life that I dared to walk where I hadn't walked in years: the streets of downtown Palatka, FL during one of their many street-clogging, traffic-halting "festivals".

This year was not going to find me sweating and gimping around cursing myself and wishing I had never left the comfort of my air conditioned home with comfy chairs ever 10 feet. No sir! I had learned that I COULD scale Mt. Blue Crab Festival and live to tell the tale... those who climb Everest don't do it as a once a year family vacation. They do it, they got the T-shirt, and they move on.

I was going to move on.... over from the computer to the couch and see what was on satellite.

Until I got the call from my sister.

"Did you want to take the kids to the Blue Crab Festival and check out the Seafood Cookoff?"

Knee jerk reaction would be to say "NOOOOOO!!!" Not only was I happy not to drive there, find a place to park within a day's hike to the activities, walk all over in the heat and humidity until I couldn't feel my legs and my knees wanted to buckle... I didn't want to also spend my life savings on letting the kids gamble with their lives aboard the rickety-looking carnival rides operated by folks with names like "Cletus" who were sporting a whole set of 3 teeth in their heads.

But there was something intriguing, magical, beckoning, about the words "Seafood Cookoff". Maybe it had to do with the fact that since I gave up cigarettes I have doubled down on my food fascination, or maybe it was the fact that I had yet to eat breakfast that day, but I caved.

Within hours we were instructing the kids on how much of a rip-off the rides were and how much more enjoyment they would get out of a funnel cake as we were on our way (blue parking plackard in hand) to go the the Blue Crab Festival Seafood Cookoff.

We parked at the Holiday Inn, which was across the 4-lane highway from the festival. As we pulled into the parking lot we saw 3 dirt-bag looking people with a hand made sign stuck in the ground that said "Parking $5". They were sitting on those plastic patio chairs you can get from Big Lots for $5 each and they just didn't have any "officalness" about them. We handed them $5 as my sister passed on the joke that we thought they were just sitting there taking $5 because it seemed like a good scam. I still don't know if Holiday Inn had a clue they were selling their parking spaces.

We had the bright idea that we should walk the boardwalk that goes parallel to the bridge, out over the water, and then crosses under the bridge and back parallel to the other side of the street. This way we would avoid all the traffic as there was no light to cross at right there by the foot of the bridge.

We won't do that again.

Northeast Florida has just had 8 straight days of torrential downpours and this day (Saturday, May 23, 2009) looked to hold no promise of any glimpse of sunshine, altho the rains had temporarily ceased.

The walkway was wooden and the cupped boards were puddled with water. This was fine until we entered the underworld side of Beneath The Bridge where bird crap, bat droppings, mold, and mildew rule the domain. Suddenly the puddles became slip-n-slide death trap land mines to be avoided at all cost.

At one point my sister grabbed the handrail to avoid catastrophy. Big mistake. She shook hands with a great big spiderweb instead. Ewwww!!

By the time we had walked first out over the water, then under the bridge of trolls, and back to dry land, we had walked about 10 times the crow flying distance between the car and the tent with the Seafood Cookoff. Ah well, live and learn. Or, live and forget and be condemned to think that street-crossing strategy is a good idea next year.

We made it to the tent where the Seafood Cookoff was underway but not before hunting down a funnel cake. Seems my son was more interested in cartoons than breakfast, so (once you take away electronic forms of stimulation) he was suddenly starving to death.

Hard to believe a fried lump of drizzled batter much akin to the mess I sometimes make creating pancakes can actually fetch $5. Same thing with the lemon, chopped in half and tossed into a cup (no larger than I'm given for urine samples) along with a little hose water and sugar. They dub it Lemonade and get $5.

We spent $15 on one funnel cake and 2 lemonades before we ever made it to the Seafood Cookoff tent.

Once seated at a plywood table we tore into the funnel cake from 4 competing sides and devoured the poor thing before you could say "drawn and quartered".

We saw a few people we knew, but mostly strangers who came up with their kids and said "my kid knows your kid from school and wanted to say 'hi'."

There's nothing more disconcerting than taking a 6-year-old granddaughter and a 10-year-old son someplace out in public only to discover they have more of a social life than you do.

Then came the judging. I don't remember who won what for which entry, but I do remember that Mary Conner who got 3rd place for her chowder gets my vote for best tasting seafood concoction I ever ate. Yum! I don't even CARE that I didn't get to sample 1st or 2nd place stuff. Her's was downright heavenly.

After we tossed our sample cups we debated the long avenue stretched out ahead of us. What appeared to be hundred of blocks (in reality only about 10 maybe) lined on either side with booths of arts and crafts, downright junk, and the wild and weird.

Dammit. I was tired of giving in to my old body and tired legs every year. It's gotten to where if you ask one of the kids in the family to do something, they complain "I don't want legs are tired!" Knowing where they got that saying made me want to fight thru the pain that much more.

"Let's see what's up that way," I said to my sister. She was taken aback (I always wanted to say that) and had a look of awe and wonderment on her face.

"You really want to??" she said in that "I'm not so sure about your current state of mind" kind of tone.

"Yeah, I think so."

And with that we each took the hand of one of the kids and started wandering with the ebb and flow of humanity in the general direction of Up the Street and (more critically) Away from the Car.

There were leather belts and caps with names stamped on them, there were cloggers dancing in the street, there was a guy with an automatic bubble blower, there were food vendors and hand-made everything....

I came to stop (more out of physical necessity than interest) at a booth where the vendors were selling their hand made pottery. The longer I looked, the more beautiful the pieces became. I started looking at the price tags (something I never bother to do at these places since I have no intention of spending money).

And then I spied the basket.

There was a woven basket with these small disk shapes of pottery, all ruffled on their edges and stamped with various designs in the center -- all beach themed. I read the sign -- "Spoon rests - $4 ea. or 3/$10".

That's all it took. I've been meaning to buy a spoon rest and what nicer one could I ask for? A trophy of sorts that, in future years, I can look and and think "I walked a LOT that day!" and hopefully that memory will make me smile.

I picked out one for me, one for Mom and let my sister pick her own.

We forged ahead.

After several minutes of seeing stupid T-shirts for sale and dog toys, and handmade wooden furniture... I suddenly realized my legs were screaming "UNCLE!".

"You want to go back now?" my sister asked, as she noticed I was no longer moving forward but rather standing still staring glassy-eyed at the endless corridor of booths ahead of us.

"I'm done walking," I said. Trouble was, I wish I would have known halfway to that point that THAT was all the walking I wanted to do. That way I could give out exactly as we made it back to the car.

My rubber chicken legs managed to carry me (without too many antics) back to the car via crossing the street down by the light. No more scary pigeon poop, spiderweb, and god-knows-what covered walkways beneath bridges. We leave that to the trolls.

As we were strapping on our seatbelts, my granddaughter said "Look! Just in time!"

We all looked up to see the black cloud in the sky split open and pour it's guts out on the Blue Crab Festival.

As we drove away, my sister and I reminded each other that no matter what we might think NEXT year, we really DON'T want to do this again.

Too many spoons used, not enough return. (if you don't know the spoons theory, you can read about it by clicking here).

If I could have walked another 10 feet or so, I probably could have gotten that guy in the T-shirt booth to make me one that said "I survived another stupid festival and all I got was this overpriced T-shirt".

Secretly, tho, I am ecstatic to be able to complain that I WALKED AROUND at another moronic festival. It's better than not walking around at all. Which means that, despite the fact that I know it will suck, I'll probably try it again next year.... just because I can.

Saturday, May 16, 2009

Regenerate Myelin?

Interesting article I came across today...

Researchers Identify Pathway To Reactivate Myelin Repair

Article Date: 13 May 2009

UMDNJ researchers have identified a key pathway that could lead to new therapies to repair nerve cells' protective coating stripped away as a result of autoimmune diseases such as Multiple Sclerosis (MS). An article reporting their findings will appear in the May 13 online edition of the Journal of Neuroscience.

Myelin is fatty material that coats and protects the ends of nerve cells. The loss of myelin and myelin-producing cells impairs the ability of nerves to conduct signals. A severe loss may lead to erosion of nerve tissues and result in permanent damage.

"In people with MS that is relapsing-remitting, the body can replace myelin that has been stripped away," explained Teresa L. Wood, Ph.D., the study's lead investigator. "But, after repeated attacks, that process of replacement no longer functions well," she added.

"Our data demonstrate that a novel cellular pathway, called the mammalian target of rapamycin (mTOR), regulates the generation of new myelin-producing cells (oligodendrocytes) and the production of myelin in immature rodent cells," Wood said. She is a professor in the Department of Neurology & Neurosciences and the Rena Warshow Chair in Multiple Sclerosis at the UMDNJ-New Jersey Medical School.

More work is needed to determine if the key to reactivate remyelination is to stimulate the pathway or if environmental impediments, such as inflammation, also must be overcome to allow the pathway to function normally. "Now at least we know a target to go after to promote repair," she said.

The researchers' work may also lead to new therapies for other disorders where the myelin-producing cells are affected, such as autism, Alzheimer's disease, and perinatal brain injury.

The University of Medicine and Dentistry of New Jersey (UMDNJ) is the nation's largest free-standing public health sciences university with nearly 5,700 students attending the state's three medical schools, its only dental school, a graduate school of biomedical sciences, a school of health related professions, a school of nursing and its only school of public health on five campuses. Annually, there are more than two million patient visits at UMDNJ facilities and faculty practices at campuses in Newark, New Brunswick/Piscataway, Scotch Plains, Camden and Stratford. UMDNJ operates University Hospital, a Level I Trauma Center in Newark, and University Behavioral HealthCare, a statewide mental health and addiction services network.