I know I haven't blogged in a while but life has been driving me crazy since my major source of income dried up.
Just a few minutes ago, I walked by the TV where my mother was watching Fox News and I heard the words "MS" and "new pill". This perked me right up so I grabbed the remote, punched up the volume and sat back to soak it all in.
They didn't mention any names but said that 2 new pills were competing for first ever FDA approved ORAL treatment for MS. A doctor showed an MRI and described in grade school terminology the basics of the disease and what the pills do to combat it.
They spoke of a "news release today" that I was unaware of and so I sat down here to google.
My heart lept into my throat as I did a Google News search to find out that Novartis has filed for FDA approval of Fingolimod / FTY720 yesterday, January 20, 2010 -- exactly 2 years and 5 months to the day since I swallowed my first pill.
This is great news, however I am terrified by it. The clock is ticking on my free ride and I know it's silly because it's not like the FDA is going to just rubber stamp this today when it hits the big guy's desk, but it's a huge reminder that this trial is not going to last forever and I'm not going to get this stuff for free forever either.
I have GOT to get that letter done (the one I drafted and then set aside to go over again a few times but haven't yet gotten to) so I can send it off to the CEO of Novartis and ask him to help a guinea pig who's down on her luck out with a lifetime supply of Fingo.
I just don't want it to sound too whiny but ever time I read it, it sounds all "woe is me" or is that "WHOA!"?
Anyhow, when I get it written, I was toying with the idea of posting it for all to see here on the blog, but don't know how that would effect the results....
Any ideas you readers (if anyone still reads this) have for getting Novartis' attention and persuading them to give me drugs, please post them as a comment -- I'm all ears!
This has been a wonderful journey for me. I don't want to revert back to relapsing every 3 months and being chronically under the dictatorship of so many horrible symptoms. I would rather die than go back there.
When Novartis yanks their Magic Carpet of Fingolimod out from under my feet, I just know I'm going to fall into that dark, black, bottomless, horrifying pit of MS again.
I'm scared. Someone tell me how to keep that carpet, if you know a way!
Here goes nothing. I'll be on the edge of my seat following right along as we wait and see what the FDA has to say.
Cross your fingers, would ya?
Thursday, January 21, 2010
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
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
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.
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."
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.
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.
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 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
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
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:
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.
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:
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.By Anita Greil
Of DOW JONES NEWSWIRESZURICH (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.
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.
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