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."

Great!

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.

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 doing...it'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

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
 Of DOW JONES NEWSWIRES

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 www.wolfram-alpha.com 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.

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."

"Sorry."

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.

Angiolipoma.

(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 worry...it'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."

BZZZZZZZZZZZZZZZZZZZZZZ!

"You want to get out?"

"yep."

"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..."

"What?"

"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.

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.

We:

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.

Whew.

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.

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?