ONE MONTH UNTIL TREATMENT!

I'm going to Mexico in September!  Can you believe it?  It's happening!  I really need to get with the blogging.  I'm thinking video blogging might be a good option. (vlogging right?)

In celebration of my approaching baldness I did something fun and a bit insane. Hey,  it's going to fall out soon so I might as well have some fun. Right? 

Fundraising Mini-rant

Sorry I've been quiet for so long, but I've been busy!  In a few weeks I'm having a karaoke fundraiser in my home area.  We're going to raffle off a bunch of cool things (A few of them knit by me!) and sing our hearts out.  My mom's going to be there, so you can bet we're doing a duet!  Hopefully our tip jar will be overflowing! 

There's an online fundraiser being held by an old friend who sells cosmetics and other natural home products by Ava Anderson.  She's going to donate a percentage of her September sales to my treatment fund!  Excellent!

I've been thinking. This is the treatment that I have to leave the country for, has been used for patents with blood and bone cancers for years. Yeah, we could do it here no problem if I had cancer. It would be covered by insurance too! At least I know, that after I have it, there are plenty of doctors who are familiar with the recovery protocol. In the meantime I'll use my frustration to raise the $65K I need to get this done. ARGH!!

I'm just a bit scared by the enormous amount of money that I need to get this treatment.  I can't give up!  I want to feel alive again!  I'm sick of being prematurely geriatric!!!!!

Ok, rant over.  Back to knitting!  I'll post pics of our party/fundraiser. :)

  https://en.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation

All I want for Christmas...

http://www.healthline.com/health-news/ms-patients-who-received-stem-cell-transplants-still-in-remission-010715

This is my new theme song. This seriously made me cry.

https://youtu.be/4UqfrH74wc0

My evil plan is working!

I just got back from my neurologists office.  I saw a nurse practitioner and decided to tell her my Chicago plans.  She said that I was having a relapse right now and I needed steroids.  I said that I wanted an MRI first.  She said she'd talk to the doc.   She told me that a relapse can be caused by other things than active lesions (what?) and that steroids won't calm down active lesions in my brain anyway (WHAAAAAAAAT?) So I should go in and get IV steroids asap. I told her to tell the doctor that I wanted an MRI to document the relapse for Dr.  Burt and THEN I can have steroids because "I know you know what you're talking about,  but I still don't really believe it".  I'm glad the Dr obviously agreed with me.

As for HSCT support,  she'd never heard of it. I told her that I wanted to piss off my brain,  get a few angry MRIs and get to Chicago any way I can.   She said "No judgement"  but I could tell that she thought I was nuts.  I don't care.  I got what I wanted. The MRI is being scheduled.

She said that it looked like the Tecfidera wasn't working anymore and that I might want to consider Lamtrada.  It's a series of infusions that partially knocks out my immune system and let's the stem cells regenerate by themselves.  To me it sounds like HSCT Lite.  

I did some research and asked around to my HSCT peeps.  Having a Lamtrada infusion will exclude me from the Chicago study but other clinics would still treat me ($$$) .  It is also much less effective than HSCT. 

So,  I'm holding on to hope that my upcoming MRI and steroid infusions will help me prove to Chicago that they should accept me.  I've joined the waiting list for Mexico just in case.  If I'm accepted into Chicago I can cancel Mexico.  If I'm not accepted I can sell my soul so I can get the $50G I need to go to Mexico.  Argh,  that's a lot of money.

Is it just me or is it ridiculous how hard we have to fight to get a treatment that we believe in?

Oh!  I almost forgot!  My awesome friends from all over are seriously coming to my rescue!  They are planning fund raisers and bake sales and silent auctions.  Other friends are donating items for the auctions.  It's crazy.  I can't say thank you enough!  So,  there is hope that I might be able to afford Chicago or maybe only sell half my soul for Mexico.  My good karma is finally coming back around.  I need to start knitting silent auction hats... 

In other news,  my kids are still awesome.

Keeping The Faith

Hi everyone!

It's been so hot here in the Adirondacks,  it's really making it hard to function.  Last week I received an email from the study in Chicago.  Because I haven't required steroids at least two times in the last 12 months and my most recent MRI didn't show any new lesions I don't qualify for the study.  But,  they did tell me that if my next MRI shows any activity to send it to them and they will reevaluate. 

I feel like I'm being punished for being a "trooper".  I've had relapses during the last year,  but I haven't gone to the doctor.  I've had a few that caused body numbness,  migraines,  dizziness,  I could go on...  My outlook is,  if I can function I'll just wait it out.  It'll go away eventually.  I hate the way steroids make me feel and I hate having all of those extra chemicals and hormones in my body.  Anyway,  steroids don't cure anything.  They just make it go away faster.  In the past I never saw the point of complaining or going to the doctor.  There was no point.  It's incurable.  This is my life and I have to deal with it.  But now there's hope!  It is pretty amazing.

I have an appointment with my neurologist next week.  This time I'm going to complain.  I don't feel well! I am constantly dizzy,  lightheaded and have several migraines a day.  It's hard to walk and hard to keep my thoughts straight.  Maybe I can have an MRI and maybe it will show activity.  Feeling crummy is kind of my default setting.  Is that just how I am now or does that mean I have active lesions?  I have no idea. 

Well,  do me a favor.  Think unhappy,  lesioney thoughts for me next week.  If this complaining plan doesn't work I'm going to have to go out of the country for treatment.  I don't know if I can afford that.  Argh.  I'm so sick of feeling sick! 

I need a nap. 

In other news,  my kids are awesome.  :)

A Heartfelt Request...

I’m not normally one to ask for help, but here goes nothing…

If you knew me 15 years ago you’d remember me as a fun active outdoorsy type girl.  I rode horses, mountain biked, hiked, swam, really anything active. I’d be working all day and singing in a band at night. I even did volunteer work with my licensed therapy dog dog at local nursing homes and hospitals.  But even back then I knew something wasn’t right.  How could all of my friends be so active, so effortlessly?  Well, I told myself, I must not be trying hard enough.  So I’d try harder.

About 7 years ago, after a few weeks at a new gym, I suddenly lost feeling in the right side of my body.  “I must have pulled something at the gym” I thought.  A few weeks later I lost vision in my left eye.  What was going on!  A few weeks later I was diagnosed with Relapsing Remitting Multiple Sclerosis.  They told me that, by looking at my brain scans, that it looked like I’d had it for over 10 years.  Wow, I guess I wasn’t such a wimp.  They told me there was no cure but they could monitor me, give me high doses of steroids when needed, and that I had to give myself painful injections for the rest of my life.  It wouldn’t get better, but they could probably slow it down.  I felt hopeless.

I carried on with my life.  I’ve had many “relapses” over the years.  I had to give up my job and go on disability.  I can’t stand the heat.  I can't walk for very long anymore.  I can’t sing.  I just can’t remember the lyrics.  But, I got married to my college sweetheart and we had two adorable daughters to add to his two wonderful girls.  My husband has his culinary degree and as a little extra MS kick in the pants,  a relapse caused me to lose most of my sense of taste.  (He's a great cook,  really!). Life was as good as it was going to get.  I was sad, but I had to accept it.

One day while trolling the internet I found some amazing and completely shocking news.  A doctor in Chicago was running the 3rd phase of clinical trials using chemotherapy and stem cell transplant to CURE MS!  Are you kidding me?  Now, he doesn’t use the word cure, but there’s an 86% success rate.  You read that right: EIGHTY SIX PERCENT! Days after I found this treatment my 4 year old little girl greeted me in the morning really excited.  "Mommy",  she said "I cleaned my room so you don't have to.  'Cuz you're sick". It broke my heart.  I need to make this happen.

The catch is that it’s in Chicago.  We live in upstate NY. My husband,  my step daughters and some of my local friends here in the Adirondacks have agreed to watch over my 2 young daughters (2 and 4). I’ll have to put my motherly worries aside so that I can get better and come back to them as the healthy mother that they deserve.  Most of the therapy itself is covered by insurance, but there are other costs that I’d need to pay for myself.  Not to mention hotels, food, etc.  If I am not accepted into this study I am not going to give up.  But that means heading to Mexico or Toronto where insurance wouldn’t cover any of the costs.  It would be around $150,000. I’m scared that I won’t be able to afford this.

So, if you can find it in your hearts to help me I would be ETERNALLY grateful.  So would my family.  A fundraising campaign has been established in my honor with HelpHopeLive. HelpHopeLive is a non-profit organization that has been assisting the transplant community with fundraising for over 25 years. Can you please consider making a tax-deductible donation to my campaign?

Make checks payable to: HelpHopeLive [New York Stem Cell Transplant Fund]
Note in memo section: In honor of Kelly Gaiser
Please mail to: HelpHopeLive
150 N. Radnor Chester Road – Suite F120
Radnor, PA 19087

For credit card contributions, please call 800-642-8399 or visit www.helphopelive.org and enter Kelly Gaiser in the “Find a Patient” box on the homepage.

My family and I deeply appreciate your consideration and support.   Really, we do!

Sincerely,
Kelly Gaiser