Monday, September 27, 2010

I'm Still Here

One of my very favorite Stephen Sondheim songs is I'm Still Here from the musical Follies.   I performed in a local community theater production of Follies but I had the very small role of Emily, one of the former Follies girls, and sang one duet but no "big" number.   I was so jealous of the gal who got to sing this song because it is a real showstopper.  Starts off quietly and builds to a roar.  If you don't know it, the song expresses the concept of being a survivor. The character is older, retired, and no longer a working actress.  No matter what she's been through, "plush velvet sometimes, sometimes just pretzels and beer",  she's still kickin'.  Sondheim likes this theme and uses it a lot, more than once in this show and in others.  Being Alive from Company comes to mind off the top of my head but there are more - do some research if you are so moved.  Here's a link to one version of I'm Still Here.  You can also look for Shirley McLaine's rendition from the movie Postcards from the Edge (which is well worth watching for those who like mother-daughter relationship movies, but I digress.)
I was in my 30's when I performed in that show, playing someone in their late 60's.  Little did I know that 30 years later I'd be thinking about this song and finding inspiration in it.  

The last two weeks have been pretty rough for me.  Seems like the fatigue has just done me in and consequently, everything else goes downhill.  Walking has become a heroic effort.  Bladder and other unseemly bathroom problems abound.  Haven't really been able to get to work and believe me, I've tried.  I have just one week until my angioplasty and I keep telling myself, "I'm Still Here!"  Need to hold on and get through the drive to Tampa, having lunch with some Facebook friends who had the procedure done already (looking forward to that but still exhausting); get through navigating an unknown airport to pick up Zack, get through spending four days 24/7 with Zack which will hopefully not be too stressful.  (My son and I love each other more than anything but it often would not appear so to people who don't know us!  I'm very grateful that he wants to be with me through this.  It's a sacrifice for him to be away from the ER for 5 days.  But we both are very opinionated and when these opinions don't mesh, watch out!)  But again, I digress.

Carol Burnett describes the song as being about survival, and it is.  But I think it's more about resiliency - similar but not the same.  You can survive an ordeal but be forever horribly changed by it.  Resiliency is the ability to bounce back.  To survive, yes, but also come out better, stronger, determined to keep going.  That is what this song says to me.   I am determined to be resilient.  Right now it's tough, but I have no doubt that in a few weeks things will change. Watch out world - I can't belt a song to save my life, but after my procedure I just may even post my own YouTube Video to let you all know that I'm Still Here!

Good times and bum times, I've seen em all and my dear,I'm still here.
Plush velvet sometimes, Sometimes just pretzels and beer
But I'm here.
I've stuffed the dailies in my shoes,Strummed ukuleles, sung the blues
Seen all my dreams disappear But I'm here.

I've slept in shanties, Guest of the WPA
But I'm here
Danced in my scanties, Three bucks a night was the pay
But I'm here
I've stood on breadlines with the best
Watched while the headlines did the rest
In the Depression, was I depressed? Nowhere near.
I met a big financier And I'm here.
I've been through Gandhi, Windsor and Wally's affair
And I'm here
Amos and Andy, Mahjong and platinum hair
And I'm here
I've been through Abie's Irish Rose, Five Dionne Babies,Major Bowes.
Had heebie-jeebies For Beebe's bathysphere
I lived through Brenda Frazier And I'm here.

I've gotten through Herbert and J. Edgar Hoover
Gee, that was fun and a half
When you've been through Herbert and J. Edgar Hoover
Anything else is a laugh.

I've been through Reno
I've been through Beverly Hills And I'm here
Reefers and vino Rest cures, religion, and pills
And I'm here
Been called a pinko commie tool Got through it stinko by my pool
I should have gone to an acting school That seems clear
Still someone said, "She's sincere."
So I'm here.

Black sable one day Next day it goes into hock
But I'm here
Top billing Monday, Tuesday, you're touring in stock
But I'm here
First you're another sloe-eyed vamp,Then someone's mother, Then you're camp
Then you career from career To career
I'm almost through my memoirs, And I'm here.

I've gotten through "Hey lady, aren't you whoozis?
Wow, what a looker you were."
Or better yet, "Sorry, I though you were whoozis.
What ever happened to her?"
Good times and bum times I've seen them all and my dear
I'm still here
Plush velvet sometimes Sometimes just pretzels and beer
But I'm here.
I've run the gamut A to Z Three cheers and damn it
C'est la vie. 
I got through all of last year And I'm here
Lord knows at least I was there
But I'm here
Look who's here
I'm still here!

Saturday, September 18, 2010

High Hopes

     In 1960 when I was a mere child of 12 years, I took my first airplane ride (in a prop-jet) from New York to Florida.  This trip was a gift from my grandmother to me.  Grandma Rae lived with my Aunt Miriam, Uncle Sammy, and my two cousins, Ruth and Leona.   So Grandma asked if I wanted to join them on this month long summer vacation. Who goes to Miami Beach in the summer?  We did!   We stayed in a place in called the Netherlands Hotel.   Now this place no longer exists as it was part the South Beach revival - but even in it's heyday, the Netherlands Hotel was never going to be confused with the Fountainbleu.  
     It was pretty run down but right near the beach, clean, safe, and I assume, cheap.  As a kid I had a great time (first 'older' boyfriend and first 'real' kiss).   But the other claim to fame of the Netherlands Hotel was that the Frank Capra feel-good movie A Hole In The Head, staring Frank Sinatra and Eddie Hodges was filmed there. They called the hotel "The Garden of Eden" which believe me, it was NOT.  The movie came out in 1959 and is about an impractical widower tries to hang onto both his run down Miami Beach hotel and his 12-year-old son.   And the very popular, Oscar winning original song from that movie was High Hopes.
                                           High Hopes - YouTube Video  

Thursday, September 16, 2010

Enjoying The Ride - CCSVI Didn't Work for this blogger

The following post is from my fellow MSer Mitch who writes a wonderful blog called Enjoying The Ride.  I re-post here with his permission for a few reasons:  

1.  I want to present a balanced view of CCSVI angioplasty and let my family and friends know that I am being realistic about my own possible results and hope they will be equally realistic.

2.  There are many success videos out there but not that many reports of unsuccessful treatments.  I encourage anyone who's had treatment for CCSVI to post their honest, true results.  People considering the procedure deserve the truth to make informed decisions.  We feel we've been lied to for years by big Pharma, doctors, et. al - let us be honest amongst ourselves.

Thank you Mitch for an honest, clear article.

CCSVI Diagnosis and Treatment Log Entry #11 – Six Month Report

IMG_0323 “The truth does not change according to our ability to stomach it.” - Flannery O'Connor
Here’s a bit of truth: CCSVI treatment didn't work for me.
I saw no improvement in my condition from the treatment I received on March 17, 2010. But that didn't surprise me. I wasn't looking for improvements in my symptoms. I was only hoping that I would stop getting worse. Now that six months have passed, I can state without reservation that my MS has continued to progress at the same slow, steady rate that is has since my diagnosis nine years ago.
This is difficult for me to report, for several reasons. First, I know that my friends and loved ones hoped that this treatment would benefit me in some way. Second, I know that the larger MS community holds its breath for good news from those of us who were among the first treated, because every success story brings hope. Third, I really thought this might work, and I am deeply disappointed that it didn’t.
So how do I feel about CCSVI, given its failure to address my disease progression? I am only one data point- a damned important one to me- but still only one data point. Dr. Gary Siskin, who has treated over 100 patients, recently commented that approximately 1/3 of his patients see a significant improvement, 1/3 of his patients see a modest improvement, and 1/3 of his patients see no improvement at all. I obviously fall into that last group.
IMG_0320 Our understanding of CCSVI is only in its infancy: how it’s related to MS, how to treat CCSVI, and how people with various types of MS react to the treatment. The complex network of veins that drain the central nervous system has never been studied from this perspective. It will take many years and many clinical trials before we develop a thorough understanding.
I remain confident that when all is said and done, CCSVI will be considered the most important discovery, ever, for the treatment of MS. And if a relatively simple procedure helps so many people, instead of pumping toxic, exorbitantly expensive drugs into our bodies day after day, year after year, so much the better.
What then, is next for me? Because there is nothing else that is at all promising for people with PPMS, and because both my mind and my gut tell me that this is a game changing idea, I still believe that CCSVI treatment is my best chance. Perhaps the impact from my treatment in March will be felt later. Perhaps, although he is an excellent physician, my doctor overlooked something during my venogram. Perhaps, as we learn more about CCSVI, new techniques will be discovered that can help people like me. I expect that I’ll undergo another venography procedure sometime in the not-too-distant future, just to make sure that we haven’t missed something.
If I turn out to be wrong, and CCSVI is a bust, I won’t lament the time I spent pursuing it for myself, or advocating it for others. It’s not like I have any better medical options to chase. The opportunity cost of my pursuit of CCSVI is nil.
IMG_0302 I plan to remain heavily involved in the CCSVI world. I must admit though, all of the positive stories that I read about online and watch on YouTube do wear on me. I know that I should feel nothing but joy for every person who benefits from CCSVI treatment, and I do. But sometimes, overlaid with this joy, is a tiny bit of resentment because I didn't benefit myself. I’m not proud of this, but I’d rather acknowledge these feelings and deal with them than deny their existence. 
Interwoven with that tiny bit of resentment, is the notion that a minority of the MS community would prefer that I remain silent about my poor outcome. They only want to hear the good news, and they fear that admissions like mine only serve to embolden the CCSVI detractors. Most MS patients, however, want people like me to relate my treatment experiences no matter the outcome, and that’s what I’ve decided to do. For a more detailed discussion of the battle between supporters and detractors of CCSVI treatment, click here.
Here’s my message to the wider MS community, and my friends who are working so hard on CCSVI issues: I am sticking with you. I am advocating for you. I am celebrating your successes. In return, please continue to listen to and acknowledge the disappointment that approximately one third of us feel when CCSVI isn't the answer.
Here’s my message to my friends and loved ones: my medical challenges are daunting, but my emotional health remains strong. I welcome and appreciate your support, whatever form it may take.
And here’s my message to myself: Keep telling the truth, and keep searching for the truth, even if it is sometimes difficult to stomach.

Sunday, September 12, 2010

Dr. Rob - A Blog Post Worth Reading

Thanks to Marc Stecker, the Wheelchair Kamikazee, for turning me on to Dr. Rob Lamberts' blog, "Musings of a Distractible Mind".  Dr. Rob as he is called is a PCP (board certified in Internal Medicine and Pediatrics), and has written a very interesting post on his blog entitled A Letter to Patients with Chronic Disease.   The link is posted to the right in the Links You Should See section. (For some reason I can't get links to appear within the post - I'll work on that.)

What was so interesting to me was the cornucopia of comments this post engendered.  They were all over the place, from agreement to anger, with people sharing stories of great, compassionate doctors and horrific treatment at the hands of medical professionals.

I don't know which I learned more from: Dr. Rob's post or some of the comments.  When you have some time, it's worthwhile reading for anyone who's been frustrated at the doctor's office.  That's probably everyone reading this right now.

I haven't read a lot of Dr. Rob's other stuff but plan to look through it when I have more time-maybe while in my doctor's waiting room.

Saturday, September 11, 2010

9/11, Collaboration and Cancer for Life

Today was a day for reflection on the lives that were lost, the heroes who gave their lives or their health in the rescue effort, and all their families.  With all the media hype about some moronic pastor wanting to burn a Qur'an, it was an effort not to dwell on the monsters who did this to our country but to honor the memories of those who died, I chose to think about the victims and their families rather than the perpetrators of this atrocity.  May their memories be for a blessing.
As I typed the word "victims" I realized that I try hard to avoid using that word, especially when it comes to people suffering from an illness or disease.  But sometimes it's the only word that works.

Last night I watched as the three major US television networks showed celebrities and cancer survivors, friends and loved ones of cancer victims talking about the incredible model collaborative effort between researchers and doctors treating cancer patients. By having researchers work together instead of fighting over who published a paper first, they learned a lot very quickly by sharing the fruits of their individual research. Step two was getting the results of this research rapidly from the lab to the treatment room without waiting for the years of study that is the present model. They have saved countless lives using this "out of the box" approach.

Cancer has touched my family and many of my friends, and so I called and made a contribution to this effort;  but I could not help make the comparison between this initiative and the CCSVI naysayers who are objecting because of not enough research, no long term studies, we have to wait and see, blah, blah, blah.

The type of collaboration going on in the world of cancer research and treatment is precisely what is needed for MS.  Instead of objecting and putting up roadblocks when patients want to try a treatment that appears to work, why not collaborate to move quickly from research to treatment and make this model the standard for all diseases.  I was happy to hear about the lives saved by this cancer initiative and sad for all the MS sufferers who are being stymied at every turn. Please, let's stop bickering and work together to try ANYTHING REASONABLE that shows promise. Too many lives are in the balance; patients, and family members, friends, even employers, are all affected when one has MS. We can't afford to listen to the neurologists who push drugs that don't work argue with the radiologists who want to try a new approach. The clock is running - we simply don't have time. We need an "MS for Life" research/treatment collaboration effort NOW.  This is what the MS Societies and the NHI who contribute countless research dollars should initiate: collaborate or lose funding.  Maybe someone out there is listening.

Tuesday, September 7, 2010

Confirmation Received

Just a short post to let those following this that I have a confirmed date for my "liberation" angioplasty in Tampa.   It will be done on October 7th.   I arrive in Tampa on the 5th, see the doctor and have a doppler sonography on the 6th and the procedure on the 7th.   Will leave the afternoon of the 8th.

This is the most exciting thing ever, except for the birth of my son.  If it turns out anything like he did, I couldn't ask for more!

Friday, September 3, 2010

And the winner is . . .

The results are in and the winner is . . . TAMPA!   I've been speaking with the hospital and doctor's office there and am registered!   I've sent off my records, need to send one more fax today to complete the process and then I should get on the schedule.  Just waiting for that ever important date. 

In truth, the winner is really me.   Everyone I've talked to and gotten information from throughout this process has been so incredibly helpful and supportive.  The MS community is just unlike any other group.  So informed, intelligent and willing to share information.   (A little too willing because someone put the name of the doctor and hospital on a few internet sites and now they're overwhelmed with requests!)  

One person I met through my inquiries actually lives in Tampa and sent me her phone number so we could arrange to meet when I'm there.  She had the  procedure done by this doctor and had wonderful results and she now wants to help others achieve the same thing.  Another woman in Sarasota who had it done there did the same thing and started a group for people going to Tampa to network among each other.  What wonderful women!  Who does that?  Who is so trusting?  I'll tell you who: people with MS.  All along the way in my 7 year journey with this disease the most positive thing to come out of it is the people I've met.   I've made some lasting friendships locally through attending meetings and working for the society at events, and through the power of the internet I'm now in touch with MS patients all over the country and the world.

It really opens up a different view of the world.  People are inherently good and go out of their way to help.  They give their time, energy, knowledge and sometimes dollars to strangers in the hope that they can prevent others from the pain and suffering they've gone through.  They are selfless and inspirational.   I have also shared a lot of information with those who needed it and have donated many hours of my time to our local MS Society Chapter.  But my efforts are nothing compared to some of the folks I've met.  They are true angels here on earth and I have been fortunate to know them.

Those who know me longest know my motto:  "Be kinder than necessary for everyone you meet is fighting some kind of battle."   I try to live that way each day and maybe that's why I've been the recipient of so much kindness.   I'll tell you, the rest of the world could learn more than a few lessons from the MS Community.