Update on my Novantrone experience...

[Lazarus]

I'll try not to exaggerate. I am still doing GREAT.
*I am awake all day and stay up until 10:00pm on average. no ritalin at all.
* I work on the farm.
* I am so good I started doing a small weekday farmers' market (bringing in more income)
*I am alert and remember all sorts of things
as well as thinking clearly enough to plan and execute the business of farming and going to markets.
*Last weekend I took the train to NY to visit my sister. That is an indication of how strong my mind is.


I still fall down--still have periods of weakness and don't manage everything I want to do. My house is a mess and I am so tired I don't even cook the wonderful food I grow.I have a life back.

I am 60% better. My next infusion is in early august--reduced dose and 4 months since the last one. MUGA before infusion.

For those of you who know me--SSusan has been at every saturday big market to help me and she has not been as strong as she is in years. She has taken to using one Canadian crutch which is a great device.

That's all I can think to say.
Linda

[mmcc53]

HOORAY!!!!!

I hope you continue to improve - you may not have reached your maximum improvement yet.

[nenebird]

That's great! what kind of MS do you have? I also got a rec for Novantrone or Rituxan. I am glad you are doing so well on it.

[0357]

That's wonderful!! I'm happy for you. Keep us posted.

Take care.

[calcal]

That is really awesome Linda. I'm so happy for you. "60% better"... than what?? Better than your worst day, or 40% to being 'normal' again?

I'm so thrilled that you're doing so well and I hope you can keep delaying/cutting down the tx in order to extend them for as long as possible.

So glad to hear you're doing so great and I hope ssusan is on the mend too.

[Lazarus]

Hi CalCal-
60% better meaning I am living that much more of my old life--before MS progressed to SP.

I am awake and functioning well about 16 hours most days. I am working--many times hard--at least 5 days a week. That is physical work and cognitive work. I am reading novels and going to plays.

There are many things I just can not fit in--like cleaning the house and also doing the farm work now that everything is producing. But I am even normal enough to squabble with John which I see as a sign of a healthy marriage and a healthy life!

Yesterday was real hot and I worked but then started falling so I had to come in to the AC.

I don't know--I don't jump in the car and go off to places/activities I used to love and the work I do involves jumping on my scooter and riding to the bean field to crawl the rows and pick. I can not do both activities but the farm work is hard.

Take care
Linda

[ssusan]

I can attest to how well you are doing. It's wonderful! You are articulate and physically strong for the whole farmers' market. More power to ya. See you at the market tomorrow morning.

-Susan

[Lazarus]

I'm still trying not to exaggerate but....
Friday I worked hard pickng for 8 hours. Rested--thought I was done for the day. After an hour I felt better so went out and picked another bushel of beans.

This is especially noticeable because I leave for market the next morning at 4:45am.

I get to market and set things up. By the time I am starting to deflate a bit SSusan arrived and we sold out every potato, every fresh fig, every string bean/Roma bean, every squash, every sungold tomato and every Japanese eggplant.

On top of that we sold quite a few jasmine plant, mandevillas and hanging plants.

The point is that each act of selling requires the action of putting the veggies in containers (as fast as we were selling them), explaining things to the customer and remembering to get paid.

We have been lucky so far this year and have not had hot, sunny days but that will be a problem.

Could it be that after 2 full infusions approaching the third partial one, I am still getting more and more improvement? Hard to believe.

SSusan, who now does rebif, is also better than ever. She arrives at the perfect time when the market is just getting really nuts. Without her my earnings would be less.

Can you believe it? Maybe the novantrone will take me through my 60's. I'm doing better so far than I was doing in my 50's.

Linda