random thoughts on this great forum

[andiamo]

I have been reading this board since it was created, I think about 1994, but don

[Liv]

I don't recall All American but look forward to those fries on the way to Westport!  Never went to Arthur's.  We used to hang out at Zoli's and Ryan's near Hofstra Univ. and Nassau Community College on Hempstead Tpke.  I look forward to talking with you more.  Have a great day!

[ladywhy]

Remember All-American? Best Fries anywhere! If not...do I have a treat for you! It's still there and we'll stop on our way to Westport.
Y

[ladywhy]

Boy..do I have some hitchhiking stories to tell...for another time. Tried to avoid field 4 'cause it bussed in to many "city folk" :) Field 5 and 6...best was Tobay Beach..which was only for us rowdy Massapequans :) I hear music on the radio and I am transported back to teenager land and beach parties...what fun we had. I was at school with Billy,  and Danny and I had some mutual friends, Their father was a teacher at my high school. I also used to go to Arthurs (do you remember the place..no ID necessary) and dance to and hang out with the Tom Cats who became the Straight Cats. Jerry Seinfeld grew up in Mass and lived next to a friend of mine. That's my pitiful claim to fame. :(
It's nice to occasionally walk down memory lane with someone..thanks. I agree, it would be great getting us all together for a sail.
I just loved hopping on the Wantaugh Parkway...still do. and feelin' the ocean breeze.
Have a nice day, Liv
Yvonne

[orphanedhawk]

Yes, I'm glad some of my creativity is returning. I started tx with my pastels and easel set up and ready to go. Then I tried to paint. HA!  Little asbstracts were alright but 5 minutes was the extent of my concentration. Lowering my dosage is making me see myself stepping out of the dark sleepy abyss of tx.
   BYW: When I don't respond, please don't take it personally. I'm spending less time on the computer partially because my hand gets achy but I'm also a lousy typist.
  How are you doing? You always appear to be so articulate and ususally clear headed.     OH
  

[Liv]

Hi:

I never took the bicycle path to the beach but did hitchhike.  I lived only one block from Wantaugh State parkway.  A few times my friends and I got into some misadventures however doing that like the time this guy stopped to pick us up and he was on off duty cop in plainclothes and lectured us the entire trip!   A few sketchy people stopped as well and we'd have to run off into the woods to get away.  We were lucky nothing worse happened!   But that was a different time.  What "Field" did you go to at Jones Beach?   I think we'd go to 4 or 5.  We heard you Massapequa Park kids were tough so tried to avoid you.  Just kidding of course!  Did you know the Baldwins (Alec, etc.) growing up or were they in Massapequa?   My dad worked for the L.I.R.R. and my brother did as well.  Fond memories.  Let's plan a trip up and meet up with Andiamo!   Sorry if I messed up this thread with a trip down memory lane.

[Andiamo1]

I did read the other Vertex thread and I agree; there were some excellent comments in it.

ladywhy: Procrit is not allowed for people in the Vertex trial.  It is politics in play and  I am going to start another thread about a possible solution to this problem.

[Andiamo1]

It certainly has crossed my mind.  I won't know what arm I am in until week 24 and this is week 10 for me.

I am assuming the blind will be lifted and I can see the viral loads during the first 12 weeks.  That data will help with any decisions.

I saw a post from somone, perhaps nygirl, that said "do you want to make a decision that migh result in treatment failure or do you want to do everything possible to reach svr?"  I am paraphrasing, since I don't remember the exact quote.  It really hit home though.

[Forseegood]

I wonder if you caught the Vertex thread on the other side...really beautifully thought out posts...in case you missed it....perhaps at this very moment youre watching some sea lions sunning themselves on a rock jetty...I'd like to think so anyway...

[Forseegood]

geez OH, you make me want to take a small hike in the woods, very poetic! (small hikes are all I can muster up, for right now) or maybe a convertable ride with wind in my hair and bugs in my teeth! hope all is well!

[orphanedhawk]

    You have found a way to connect with nature and find both joy and contentment. How fortunate for you!   I used to swim daily in the Ocean and loved feeling the rhythm of the water. And I rode horses through the forest feeling the warmth and movement; the very being of the horse and nature. Now I eye the raptors overhead and imagine putting out my wings and taking flight over the hills. I think its all a divine dance.                
             Wishing you peace.                         OH      

[Andiamo1]

I dertainly agree with you about getting older.  I think the good times were lots of fun, but it is the tough times that makes us better people.  Unfortunately, age brings lots of tough times for all of us and our families.

I do find that now that some of life's passions have subsided to a degree, that I am better able to slow down and enjoy so many things I glossed over through much of my life.  I certainly learned that it is not money or posessions that are important, it is friends and family that really matter.

[Forseegood]

I certainly agree with NYGirl in concept, and I so much admire her fortitude and tenacity and just plain good character....but youre not in the same circumstances, youre on a trial with the Vertex (it's too much trouble to remember their new name for me, lol)...

I do believe (and I know there are some others) that we do have to tailor treatment decisions to our own individual circumstances...like you said, once you become unblinded you'll get a lot more information and I'm sure you'll make the right decisions for yourself, whatever they are, I sure support you...

I'm just a busybody by nature and I just thought I'd throw in what I would do, all completely hypothetical like I said...

Sure wish you the best of luck with this, I'm sure most of us were so impressed with your generosity...One thing I do like about getting older, there seems to be a lot of babyboomers who got over their youthful self-centeredness in some cases ....and I guess all the tough blows of life have softened many of us up (or, unfortunately, made some of us more bitter) and made many of us much more likely to reach out to others and help if we can..Well, that's ONE good thing about getting older, ha ha ha! I guess I'm just on this tangent because I heard a program on NPR about so many babyboomers and retirees starting helping buisnesses, non-profits, or volunteering, make the world a better place in our own little ways...

[ladywhy]

I wholeheartedly agree with Foreseegood regarding tailoring tx. My HBG and WBC have both been dropping and also low platelets. I'm sure that has been causing the fatigue for me. I was in close proximity to a woman who said she hadn't planned on working today 'cause she had had a 103 degree temperature last night...man did I move away from her quick!  I know what a worry these lab results can mean and how debilitating fatigue can get to you and get you feeling down about everything. I will remember you in my prayers. I don't know much about the Vertex trials but what about procrit? Is that a possibility? Hang in there and I hope you are getting enough relaxation and good rest.
Yvonne

[Forseegood]

maybe I sound like a big jerk, but if I had low counts, and I was pretty much assured that I was on it, I'd do the shorter treatment...it says on the trial lit that participants can step off the meds if they feel they want or need to...think I'll crouch cause I might get some mudpies thrown my way, ha ha! I'm just saying what i might do and of course these are all hypotheticals on my part...

[Andiamo1]

Yes, Plum Gut can be tricky as well as the race.  The problem is caused by tidal currents pouring into Long Island Sound from the Atlantic.

I can't drink too much apple juice, it upsets my stomach and VX is doing enough of that without any additional help.  I am drinking a lot of water and that seems to help.  My biggest problem is Hgb at 10.3.  I can barely move and the thought of this for another 40 weeks is too much to comprehend!

The CEO of Vertex made a presentation and said the 24 weeks should be the standard treatment.  That remark is good for the stock price, but disheartening for those of us in the trial that might be in the 48 week arm.  Oh well, I will take whatever hand I am dealt and live with it.

[ladywhy]

Will do, Eric.
If I remember correctly :) it can be pretty tricky around Block...or is it PLum Gut? Today especially, my brain is almost completely in a fog. I don't feel the energy to do much. If  only i could/would start juicing. Just seems like too much trouble..but it's probably worth it. Is anyone that you know of drinking apple cider while txing for brain fog?

Anyway...again when we can get that sail in...it'll be great! Notice I said "when" not "if". Gotta make it happen.
Thanks again.
Yvonne

Hey Liv..dija ever take the bicycle path to the beach? My friends and I used to..or we'd hitchhike!

[Forseegood]

Hi Friole! a few weeks ago I got bumped to, and had to re-register...that's when they asked for a picture on my "profile" here, a thing they've never done before...guess they are re-vamping the site...

[friole]

Wonder why you got bumped.  I can't see anything that would do that.  

I sailed some in college and loved it.  Whenever I was by a bay, I would hang out at the docks to bum sailboat rides.  Not too much water here in West Texas.  Thanks for the offer, anyway
frijole

[Andiamo1]

Please let me know if you plan to be in this area.  We are going to leave for Block Island next week and come back the middle of July.

We will go to Florida for a week for my mother in law's 80th birthday and then back here for the rest of the summer.

If I am here and you are in the area, I would love to get together for a sail.

[rosebud57]

i hope it was just an accident you couldn't log on, don't think an open invitation would have bumped you off. buy hey, what a nice offer, seems like you would need to get a bigger boat with all that would like to go.  

i remember when you first posted your sailing adventure.  that was so nice to read and i was still under the effects of the meds and home a lot, it was nice you shared that journey with us. as i read,  it reminded me of a book i read once, could only guess the author, but once i went to public library to get a patricia cromwell they were all checked out, but right next to it was a book that caught my eye. it may have been authored by cornwell... this was about 14 yrs ago.  it was the most interesting book i ever read, it was a high sea adventure. (i generally like medical/crime stories though read a variety of topics).

[dmhrdh]

Wow...that was beautiful!!!!!

[Liv]

I'm also originally from L.I.  Still have lots of family up there.  Husband is from N.J.  We lived around White Plains, Katonah and Danbury, Ct. at various times.  I'm totally land locked here in N.C.  My parents lived in in Port Jefferson and Rocky Point and I miss the water terribly.  Grew up in Wantaugh, L.I. 10 min. from Jones Beach.  Let me know if you ever arrange a reunion!   I'm trying to get up there this summer and visit with friends and family.  I've never sailed but would take you up on your offer!  Thanks for the beautiful post and your generous offer.  

[Andiamo1]

Living on Maui sounds great.  I wish I could do that.

[mauilady]

If you ever sail to Maui.... LOL.  At one point in my life (when I graduated from highschool) I was ready to relinquish my material posessions and go sailing.  But I get too seasick... I love the ocean and am not comfortable unless I'm on an island, surrounded by water.