HiCy, rebooting Steph

HiCy Journey

Friday, December 3, 2010

Still working things out.

Have been busy with everyday life lately.  I have been involved with the youth ministries at my church.  I have been working out when possible and playing brain games on my computer.  We will see in a few weeks, if things are actually getting better.  I have a MRI appointment Monday and will take that along with some blood test results to Chicago.  Then they will check all of that, plus re evaluate my cognitive skills and do some strength tests.  

I think I'm getting better everyday.  I still have healing to do, but in time, I think I'll be better than before.  I don't have the pain I had before, so just that alone is better.  Hope to keep moving and progressing as time goes on.

Just thought I'd update and let everyone know I'm still doing great!


Friday, September 24, 2010

Times, they are a changing!

Went to RUSH for my 3 month check up!  I am so much better than before the HiCy!  My Doctor was in shock!  He had to look at my file, because he thought I was 6 months out and I'm only 3!  He can't wait to see me at 6 months!  I didn't realize I was so impressive!  

I will continue to do yoga and work out.  I see my Physical Training  person next Tuesday.  I can't wait to start correcting my walk!  I'm excited to get back to me again!  Yea!!!!

This has been an awesome journey!  Tough for the first month and then thing start moving forward at a rapid pace!  I am so happy I did this!  Thank you Jesus for letting this all come about!  I am truly changed and extremely grateful! 

Will let you know how all my December tests come out.  Will have an MRI and all those cognitive tests again!  I say, BRING IT!  WooHoo!

Thursday, September 2, 2010

Hi Peeps

Just got back from Dr. Hendin's office.  My strength has improved!  I am getting a personal trainer to help with reconditioning my gait.  That is exciting!  I am very pleased so far with my results.  I have staarted a weight gaining, nutrition program that is helping me eat right and gain needed weight.  I'm still working out everyday to every other day.

If your looking into HiCy, I am extremely glad you found out about it and hope you choose it. The three weeks in the hospital are HARD!!!  When you first get home, you are WEAK!!!  You must WORK to feel better!  Go in with an "I can strengthen the muscles that were atrophying before" attitude!  You can!  

The worst part is the hospital and then you start healing!  Go for it....you could be one attack away from a wheelchair...do it for yourself!  I'll help you through it!


Thursday, August 19, 2010


Just read comment that my blog is being checked daily!!!  Sorry peeps!  I have been working out daily, doing yoga and light weights!  I have been seeing improvement in my balance and stamina! 

I go to see my neurologist in Chicago in September and will be getting blood work done next week.  Hoping to have great blood counts!  Feel great as far as MS symptoms go...I don't have any!  I still have hot flashes and get tired easier than I should, because of the chemo.  Still feeling better everyday!

I jumped rope yesterday!  That was awesome to be able to do!  

Friday, July 30, 2010

So Far, So Good!

Yea!  I am feeling good, except for newly diagnosed sinus infection!  But antibiotics should clear it up.  I don't have MS headaches any more.  I don't have the HUGS in my chest that make it hard to breath!  I am working on my walking and already have more muscle control in my right leg!  I have less tingling in my hands and haven't run into a wall since I got home!

These are all encouraging results and I hope to be healing for the next 2 years...sooo, I may get more feeling back!  We shall see!  I know I'll get more hair back!  That will be nice, this wig is excruciatingly HOT!!


Thursday, July 22, 2010

I am feeling really good lately.  If I weren't bald, you'd never know I had chemo.  I have started yoga and can tell my balance will get better as I get stronger.  It felt different than before when I just couldn't get my balance even when I really tried hard.

I am doing everything I did before and just accessing my progress each day.  

I already have more energy than before the chemo, just get tired at the end of the day.  I am also thinking much clearer and not getting headaches.  All wonderful gifts the chemo has brought about.  


Tuesday, July 13, 2010

Feeling better everyday.  Thought I had an ear infection, but I am just having severe allergy symptoms and need some decongestant.  That's a relief.  Headaches are rarely happening at all and I think the  ones I'm getting have to do with the congestion, so those should be gone soon.

Still get tired, but that's to be expected.  Feel pretty much like myself now, just not able to do as much.  Will work to continue building strength and endurance.

Some MS symptoms still causing problems, but am staying optimistic and waiting for them to diminish.


Tuesday, July 6, 2010

It's so hot here!  I love Scottsdale, but it's tough when you're gaining strength back.  That sun is brutal!  Continuing to stretch and trying to do more everyday.  

I need to sunscreen myself and get in the pool eventually.  Maybe I'll get in this evening when the suns not on the pool.  That would be good exercise.  

Getting stronger everyday and washing my hands like crazy.  Slight germaphobe.  Better safe than sick.  Talk to you later.


Thursday, July 1, 2010

Nothing new to report.  My recovery is boring! Haha. I just move around the house doing chores and lay on the couch between.  I drive Jessica to drum lessons now.  That is good, gets me out of the house.  

Have other small chores to do.   Doing more everyday, have done more than I should have a couple times, but being it was for my daughter and one of her best friends, it was worth the down time the next day.  

Love my kid and her Dad was out of town, so when I was in charge, I had to be Mom.  She does her work, she gets privileges.  He's home, so he can take over rides and stuff.  

Feeling better everyday! 

Monday, June 28, 2010

So tired today.  Didn't get a nap.  This is due to the fact the house cleaners came at nap time.  Oh well, I needed the house cleaned!  We got an awesome dinner from one of my sister angels tonight!  Thank you Virginia!  It was delicious!

I hope to gain a couple of pounds in the next week.  That would be awesome!  I try to do what I can to exercise around the house.  Laundry, some dishes (Jessica does a lot), picking up here and there.  Just trying to stay active the best I can.  Nothings changing quickly, but I know I get  a bit better everyday.


Saturday, June 26, 2010

Can't believe it's been 6 days since I blogged!  I have been sooo... tired and out of it.  My headaches get extreme if I don't get my Advil soon enough and I've been nauseous the last 3 days.  I am also battling constipation and that has caused a lot of discomfort too.  I will hopefully win the battle in the next day since I've been taking Miralax the last two days and stool softeners. 

Losing patience is easy!  I have to contently remind myself I wont be feeling normal for at least three months.  I am looking forward to September!  Think I'll go take a nap.


Monday, June 21, 2010

Love my neurologist!  Talked to him today.  He wrote a letter for my insurance company because they denied payment on my wig, saying it wasn't a necessity!  My bald head says it is!  LOL

I am taking 3 Advil liquigels to treat the chemo headaches.  Prescription strength is the equivalent of 4.  Works good for me.  Started doing brain games to strengthen my chemo brain...I guess it's good for anyone, and I have to take the math test in Chicago again to see if I can do better.  That things a nightmare.  

Dr. Hendin says I'm to weak for physical therapy now.  He'll see me in September and set it up then.  In the mean time I'll just do what I can daily to start getting some strength back.

Doing pretty good if you ask me.  I tire myself out, but I think that's good.  If you have some energy, shouldn't you use it?  

Thank you everyone that's helped with transporting Miss Jessica.  It has helped her to have a normal kids life and to see her friends.  I am forever indebted to you.


Thursday, June 17, 2010

I am trying to get some of my old life back.  Chemo is hard!  I have to keep telling myself, it will be months before I feel better.  I have started doing light stretching, when I have the energy.

It can be frustrating to have such little energy and other side effects, but there is a bigger picture I have to focus on and a long term goal of being MS free.  I will be contacting some of my friends that have been through the aftermath of chemo, to see if they have any tips.

Slow recovery is still recovery!


Monday, June 14, 2010

Saw my Doctor today.  She ran blood tests and I should get the results tomorrow.  I have a UTI, which I was pretty sure I had.  Extremely common for chemo patients, so I will be taking an antibiotic for 7 days.  

Just have to slowly start working out and eating more.  Love the afternoon naps, they are so needed and I feel rested after, so they're great!  Will let you know my counts when I get them.  Hoping they are all great numbers and everything held!  Those platelets can be hard to get up and keep up, so I'll pray for that one.  Once it holds over 50,000 I can floss my teeth again!


Sunday, June 13, 2010

4 days home.  I feel a lot of fatigue.  I get really bad night sweats.  I am having trouble eating enough.  Consequently, I am taking naps, using a wet cloth at night, and eating a lot of snacks.

I see my General Practitioner tomorrow morning and will get a complete blood count, talk about vitamins and see what she recommends for PT.

I know I will need a good 3 months to recoup and it could take as long as a year to get all my pre-chemo energy back.  It's all worth it, to not have another MS attack in the near or distant future.  We will see how the MS has been effected at my 6 month check up.  

Trying to take one day at a time.  Staying focused so far.  


Thursday, June 10, 2010

Leaving Chicago

I haven't blogged because I haven't really had time.  I was discharged on Tuesday at about 6:30pm.  Bob and Jessica had arrived earlier and escorted me to the hotel.  We had room service for dinner.  I think I ate a mini cheese burger and a couple fries.  I have to snack as I am able.

We flew home yesterday afternoon.  (Wednesday)  I am happy to be home!  Now I can concentrate on healing and building the muscle mass I have lost during all this.  Bob says I look like a concentration camp refugee.  I have to agree, I am quite frail and with no hair, it's not pretty by any means.  ( I'll be working on that) LOL

The worst is over and now I have to get on an eating regime and slowly build my activity level.  I feel pretty good, just really weak.  No pain.  Hope everyone is doing well and I look forward to seeing people in a few weeks.

You can call me at home now.  I have my own phone, germ free, just for me!

Will be contacting my neurologist here to get blood work done and make sure my counts stay on track.  I am off all meds (Thank you Jesus!)  I am not a good pill taker and was taking A LOT in the hospital.  So, I will keep you all updated with the home progress as it continues.


Monday, June 7, 2010

Day 17

WBC went to 1.13, my red blood cells went up to a healthy 9.1, but the labs hadn't come back for my neutrophils.  I was at  70 yesterday and hoped to be near 200 today.  I need 500 to go home....My Doctors came in around 10 and let me know my neutrophils were at 530!  I started crying...unbelievable! 

I get discharged tomorrow!  I'm still weak and have bone pain from making all these new WBCs, but I'm healthy enough to fly home!  I am so excited and feel extremely blessed to have recovered so quickly.  I have to isolate myself and wear a mask when around crowds, but that too will change as my health increases!

Thank you all for your prayers and friendship through this extremely difficult journey.  You're all blessings to me!


Sunday, June 6, 2010

Forgot to add, I have a Neutrophil count now!  .07  This is "the" number that has to get to 2.0.  You need this part of your WBC to fight infection!  So yea!  Neutrophil numbers have started!

Day 16

Started the night off bad, trying to ween off my sleep meds. 1 Benadryl...2 hours sleep, 2nd Benedryl...3 1/2 more hours.  Sleep meds are so powerful!

Awoke to a WBC count of  .20!  Yea!  Right where my Dr. thought I'd be.  He's so smart!  This is awesome!  Still have lots of healing to do and weening off other meds, but I see the light!


Saturday, June 5, 2010

Day 15

Counts tripled!  .06 WBC count!  I need to be a 2.0 for discharge, but seriously!   .06 is awsome!!!!  I could just feel something was happening!   Thank you everyone for your thoughts and prayers.  This has been tough...and my counts could still drop, so  let's all keep a positive attitude!

My Doctor, DR. Hendin,  will be here today from Arizona!  I am so excited to tell him all about it!

I am so happy it's almost over and I can go hug my family again!  Super Day!!!


Friday, June 4, 2010

Day 14

So, 4:30am I'm wide awake!  I just think I took my sleeping pill to early, but I can nap later.  My WBC went from .01 to.02  woohoo. 

Not big, but put a smile on my face!  Bones are aching and this could mean good things for the counts. 

I will get more platelets and red blood transfusions today, because I'v been on my period and it takes a lot out of a woman.

Should be fine as usual.  Will keep you posted  and I am missing my peeps terribly!!!


Thursday, June 3, 2010

Day 13 still

There is a new patient here getting the same treatment.  His name is Bandi.  Please add him to your prayer list because he is still very nervous.  He know he wants it but it's still hard.  Will continue to visit him to lift his spirits.

Thank you all,


Day 13

I'm constantly reminded my story or plan is not always God's story or plan...I'm thinking 2+ days at .02  WBC means I will be coming up soon!  But no...dropped to .01.

Okay, guess that's my eye opener to relax and chill, it will happen in His time...Funny, sounds like my awesomely wonderful husband too!

I'm having platales again this morning, period looks to be ending but they want to keep my counts high.  No worries.

Feeling okay and more home sick than anything else.  But I know my family is fine and they keeps me fine.  I will keep the prayers up for a spike of somekind, but be patient.  I love you Bob!

I got 7 cards in the mail yesterday!  That was soooo...cool!  Thank you Denise Judy and my gorgeous little Jessica!  Made me smile and decorate my room with love!   Will keep you updated.


Wednesday, June 2, 2010

Day 12

today is a goood day and i am feeling a lot better now that I've had my transfusions.   I sound whiny, but I really am just bored in my little hospital room.  I got to try to read or something.  Remember prayer and petition,present your request to God.  I am petitioning for WBC counts to rise.  slowly, quickly, which ever, just rise.



OKAY,  A bit of a test of faith, but holding strong!  I started my period...having another platelet and blood transfusion today.  No increase in WBC count and super tired.  I will be fine and am in great care.

Nothing to upsetting, just a small barrier to get thru.

Thank you all for supporting me.  It is a long process.



Tuesday, June 1, 2010

Day 12

4 shots down and my counts dropped today.  Boooo.  I was .03 now .02...urgh.  This is normal, but still frustrating.  I was awaken by my nurse at 5:30 for a platelet transfusion.  My platelets were low and my blood pressure too.  Now things are getting better since the transfusion and fluids.
I'm going to go take a shower and see if I can cheer my mood a bit.  Should be better soon.   Stefoski came by, he said  eat more salt!  He's funny, but it's actually true too!  

Keep praying for healing, I'm sure it's coming!


Monday, May 31, 2010

Day 11

I haven't had my Neupogen shot yet today.  Should get it in the next half hour.  I woke up nauseas with a sore throat and thought fever.  

Got nausea med, went and did some mouth care and the fever was really just false feeling.  Had Morphine for first time in my life, for the bone pain yesterday.  We'll see what happens today.

My buzz cut is scheduled for 3 today.  My hair is finally falling out, so it's time.

Not much else, just praying for my counts to start climbing!


Sunday, May 30, 2010

Day 10

I am fighting through the pain to type this.  The Neupogen shots are making my arm bones sore.  It's normal and means it's working, but it hurts!

I should start to lose my hair at shot 4, which is in two days.  I'll let you know.  I'm unhooked from my pole for awhile, so I'm going to take a walk!


Saturday, May 29, 2010

Day 9

Day 9 I am at ZERO!!! No WBCs in me! Just got my first shot of Neupogen and now we wait for the rebound! I'm excited! This is also where I can get mouth sores and my hair will fall out.

No biggy, my mouth is great so far and the whole hair thing is just going to be cold! Brrrrrrrrrrr.

Iate a doughnut for breakfast with an ensure plus. My arms are sore from typing and sleeping on them...HAHA.

Will write anything new later. Pray for healing! Here it comes!


Friday, May 28, 2010

still day 8

Still day 8, but I just found out because I bumped my head last night....no mark....they're cat scanning my brain tonight at 8:30.

Aurgh! I will NOT be taking Ambien again!

Just had some left over won-ton soup for snack! Yummy!


Day 8

Day 8 has my WBC at .14, pretty low huh?   Well, it will be zero sometime before midnight.

RBC And platelets are still good and my electrolyte numbers are good, so we'll just have to deal with the WBC and be done!  I hope!
Still tired, fell twice last night, had nurses with me just got limp legs.  Everyone's okay.  Just took a shower and need to rest.  Talk to you soon.


Thursday, May 27, 2010

Day 7

Hello again,

Oh, I ordered Chinese food last night from a delivery service!  It was awesome!

I am at .8 WBC and so, I will become neutropenic over the next 24 hours.  I should start the shots to reboot on Saturday.

I am lathargic, tired, shaky and sick feeling, so fun!  I can't wait for it to start reversing!  My Ms symptoms are full blown because, that's what they do before the growth hormone.

Just keep praying the lights coming at the end of the tunnel!


Wednesday, May 26, 2010

Day 6

Thought I'd never wake up. Took an Ambien and it knocked me out. My counts are WB=2.5 RB=9.5 and plateletes 95. Just gotta wait for the WB to drop to zero!

I'm kind of tired, grumpy, weak, but what did I expect? I got to go through the bottom to pop back up!

The staff is awesome and would do almost anything for the patients. They see people like this all the time so, they know how to help.

Phillippians 4:6,7


Tuesday, May 25, 2010

Day 5

I have to get a blood transfusion today.  Which I knew was coming.  No biggy.  My RB count is 7.5 so that is to low!   I'll get the other counts.  WB gotta be going down, and that's what we're watching.

I totally wrapped myself turning in bed last night!  Had a horrible night trying to get comfortable.  But today my catheter comes out!  YAY and I hope to go PT a bit later.  I'm weak and tired, but fighting on.  I can do all things thru Christ.  Just watch!


Monday, May 24, 2010

Done with chemo!  Now the counts drop.  Today WB = 5.1
RB = 8.1 and Platelets =120, will watch RB count because below 8 I will get a transfusion.

Have had major nausea drugs, finally got a patch that seems to help!  Getting sick is the worst!

Walked around a bit for PT.  They'll take me down to the gym tomorrow for strengthening.  That was fast.  Not sick yet, so I can do it.  We'll see.

Tired now.  Will talk later

Ate a bit more for breakfast this morning.  Hate breakfast and I'm not really hungry, but I tried.

Saturday, May 22, 2010


So, I didn't take an Ambien last night. Turns out the Ativan for nausea makes me sleepy enough! I'm still out of it most the day, just managing to eat a little and brush my teeth. Hope all is well with everyone.

My doctor says there's a lot of dead cells swimming around now, just gotta get rid of them! 2 more doses and then wait for the drop to nuetropenic. Here's to getting well,quickly. Haha.


Friday, May 21, 2010


Today I slept most of it while my family worked on their computers. real ambien wipes me out! The chemo made me sick,but I thought it might. They gave me 3 or 4 nausea meds, to no avail... we'll see how tonight goes. I get number 2 in an hour.

Will write again tommorow.


Thursday, May 20, 2010


In my hospital room. I'm on the 10th floor with a great view of Chicago. I was admitted after noon so, I wont get my PICC line until tomorrow, but I will get my first chemo later tonight.

I will get some medications to fight nausea before the chemo. Tonight I'll take an ambien to sleep, and I have my catheter.

Jessie is getting nervous about leaving me. She wanted to stay the night in my room! I told her I'd be fine and she gets the nice comfortable hotel bed to herself! They will leave in 30 minutes and I'll be alone until tomorrow...ahhh... some peace and quiet. LOL

Just kidding, I'll be looking forward to seeing them tomorrow! Just have to let them know where the cafeteria is so they can get food here.

I'm in for a long ride, but I will be okay. I have my scriptures on my bulletin board that keep me focused and give me strength.

Foods pretty good here. Being a Medical University, they have chefs here to feed patients and staff. Hopefully I wont loss any weight. I weighed in at a whopping 104.4! I really need to gain some!

Will try to post tomorrow to let you know how the first dose of chemo went.

Wednesday, May 19, 2010

Here we go!


We have spent 5 hours at Rush today, meeting all the Doctors, going over treatment, and giving me tests.

There are cognitive tests and they are hard for MS patients. The peg in the hole test was deceiving because those little pegs are hard to grasp! The math part was head spinning! This tape says a number every 3 seconds and doesn't stop while you add the last number he said to the next number he says and then say the answer....60 in a row....is your head spinning?

Tomorrow we begin. They will call sometime in the morning and we will wheel my two suitcases and backpack to admitting, and get me in a room. Will get set up with a Picc line and catheter! WooHoo! TMI...not really, this is an important option that reduces the chance of chemo staying in the bladder and destroying the lining. Good info for sure!

Then I'll get tons of saline and the chemo will begin. I will be getting some meds that will keep me sleepy most the time. Doctor Balabanov said this is a great way to get through the chemo part and let your body rest instead of trying to fight to stay awake and function. I will blog when I can and play catch up later when I'm up to it.

Please comment when you can. Gives me some extra reading and lets me feel the love...I will be alone for most of this, but all of you make it easier!

Thanks for the support, you're all awesome!

Sunday, May 16, 2010

Going to Chicago!


I'm leaving for Chicago and pretty well packed! I have been wanting to blog because I got the most...MOST...exciting news on Friday! I will not be getting a central line! They don't use them anymore for this, they now do a picc line! Which is creepy if you don't know what they are, but way less prone to infection and they do it bed side with local anasthetic.

I have been buying things to wear in the hospital that have an open neck for the central line...jokes on me! Picc goes in my arm! So, now what? I packed some T-shirts and can hopefully put on sweatshirts over the line, if not, I'll cut of the sleeve of a couple! No worries! One sleeve up, one sleeve down...trendy!

Trying to keep a positive attitude and give all my fear to God. Gets hard sometimes, but I know he can handle it...I can't! Fear can consume people...I do NOT want to be consumed! Sounds like you've been eaten...kinda like the saying "it's eating you alive"...no thanks! LOL

You can tell I'm nervous, but I am going in knowing a great deal about what's going to happen and what to expect, so I will adjust as I go through it.

Pray for Jessica...she will be without her Mommie and I don't think she realizes how tough it will be. There are so many everyday things Mom's do for their children. I have friends to help, I just pray she's patient with herself and others. She can be such a great person.

Pray for Bob, he'll be without his best friend and the person that runs the home. He needs patients and guidance too, and has to deal with a pre-teen, home, and work!

I'll update in 3 days, when I'm doing all my cognative tests and paper work! HUGS to you all!

Tuesday, May 11, 2010

One Week!


One week to go! Exciting and busy! Packing, making lists and making sure I have everything for a long stay over. It's going to be a long, hard trip...but I am ready! The worse I feel, the more I can't wait for it to be gone!

I will keep you all informed the best I can. Might have to skip a day or two in the first week, then I should be able to update while my counts come back. I pray it goes that way, but we will see.

Thank you everyone that's praying for me, and my family. It's nice to have such a great support system!

Will write when I get there.

Friday, May 7, 2010

God is sooo... in this!


Okay, here's another God moment.  Jessica has been playing softball for 6 years, on a team named the HUSKIES.  I'm the team mom.  Last night, we're throwing gear into my Trailblazer and leaving the house in a hurry to make her 5:00 warm-up time for the Championship game!

Ready to go, I turn the key and nothing!  Good ole' Arizona and the two year battery melt down!  I was so frustrated and mad!  Bob said to take his truck, which means he doesn't get to go.  (He goes at game time and was not ready to leave.)  Another frustration.  So, I left angry and tried to calm down.

By the time we got to the ballpark I was better.  Just felt bad because I yelled at Bob because I was frustrated, (took it out on him!)  You may of been there before...LOL

I called him and apologized, and he explained he was charging my battery to get it to start, so I could take it to the dealers for a new battery.  Our plan....not God's.  Hee Hee

This morning...turn the key...epic fail!  Called triple A and they came and did it all in 10 minutes for $40 less than the dealers!  Sweet!  But that's not the God moment....if this had  happened after my chemo....on a short trip to drop Jessica or something...It would of been a HUGE thing!  He made sure I took care of this before it could be a REAL problem.

I love the Lord, he is sneaky and can mess with you...I think he's having fun!  You may think it's at your expense...but beware of the bigger picture!  Sometimes you have to look back to move forward with Him.  He's the best!

13 days until chemo...yea!!

Friday, April 30, 2010

The date is set...HiCy, here I come.

April 30th, 2010
Just got of the phone with Corey, head nurse to Dr. Stefoski. I will be going to Chicago on Tuesday May 18th, seeing the doctors for final testing, May 19th, and be admitted to the hospital on the 20th.
My central line will be surgically placed sometime on the 20th and I will receive my first dose of chemo that day too. So, now we know when.
I am getting things ready to pack. I will be in my hospital room for at least 21 days, and there's no laundry facilities, so I have to pack accordingly. Yes, I'm taking 30 pairs of undies! I will take a ton of socks too! I can dress in whatever comfortable clothes I like, but they need access to my central line...it's kind of in the collar bone area that they place it. I bought some zip front sweat shirts that are fleecy on the inside. I should probably get a couple more. I have some camisole tank tops I'll wear underneath. Then my sweatpants, also fleecy on the inside. Should stay warm and comfy.
Bought a new like down, but not, comforter to take; and a silk pillow case, so my bald head wont stick to the pillow! LOL

I have a wig, sleeping caps, eye mask and ear plugs (lights are always on around you and nurse are constantly checking things). I got hypoallergenic, fragrance free everything...body wash, makeup, hand and body lotion, lip balm, even detergent and dryer sheets for when I get home! This is good info for people looking into this treatment.
My super awesome, wonderful, extremely loving, oh...and handsome husband is getting me an I-pad to take with me! Yeah, I know....he's the best, and I was speechless when he asked me if he could get me one for Mother's day to take to Chicago. It's so I can watch movies and play games and entertain myself! Best guy EVER! I already knew that, by the way.
I'll take some pictures of my family to put on the bulletin board in my room. Might get some fake flowers too, to cheer it up. I can't have real ones! Nice fake ones are better anyway, they never die!
So, I guess that's all. I'm just nervous and anxious, but I'm kinda like that anyway. It's weird to think back on how this all came about just months ago, and now, here I am.

Thank you Lord for all you've done, please guide me safely to the other side of chemotherapy.

Saturday, April 17, 2010


April 17th, 2010

I have to write this for future MS patients who may be getting this treatment. You are going to feel like crap! With no MS drugs in your system...especially if you were on a strong med like Tysabri, you are going to get all your MS, daily symptoms back.

Keep a positive attitude! This really sucks...for lack of a better word...but keep thinking about the final results! This is the suffering before perseverance. Kind of like the bionic man...you will be better, stronger, faster! Haha...sounds great!

So, just so you know, it's about 10 weeks without any Tysabri...I am jittery and have my headaches back, but when I get down, I tell myself it's all going to be gone soon! There's a light at the end of this tunnel! Take a deep cleansing breathe and push on!

Tuesday, March 30, 2010

March 30, 2010
Let me start by saying sorry to all the ladies in my bible study group...yes I put down the wrong URL for my website! But, I did put down google rebooting steph...so, I'm hoping you all find it! LOL I still have some brain actually working! YAY!
I have come to the realization that I am no longer alone in this! Yeah, I know I've had friends here, but not here in Arizona, see frequently kind of friends. It's weird to walk up to someone and have them ask if your okay, and of course I answer in my little lying way, "yeah, I'm fine...why do you ask?" Because of the way you said you were feeling yesterday. Now I'm wondering how the heck does she know how I was feeling yesterday? So, I ask. I know you were feeling dizzy and stuff...I read your blog.
Oh, yeah, I can't play the I'm fine card anymore! Now that kinda stinks...but not really. We're all suppose to let the ones that care about us most, know how we really feel, but honestly, we usually don't burden anyone with our own reality! Well, welcome to my world, because all the gory details of my glorious disease are pretty much here for the reading! Haha...I hide things pretty well, huh??
Well, the acting is over and everyone is welcome to help in anyway they can. Praying counts as helping, by the way!!
So, on that note, yeah, I feel like crud, pretty much. I am getting my daily MS stuff back...wow, that Tysabri was awesome now that I am starting to feel all the things it controlled! I have some new symptoms too! YAY!(sarcasm is a good thing). I knew about them though, from my last attack, so no biggy.
My stupid hands are shaking like crazy. I can't move them correctly...makes me mad! You'd laugh at me typing this...annoying! I can still drive, which is a huge thing! I'm not having an attack...just symptoms. I have this excruciating pain in my neck...and my chest is tight again...boohoo...actually, Advil liqui-gels are an awesome thing!
My thoughts are really scattered the last two days and I have to really take my time and think about what's being said. Another annoyance...such is life. I just have to keep reminding myself, I am on a journey to rid myself and hopefully others of this aweful disease. I am privileged enough to be one of the ground breakers for a treatment that may someday lead to a cure for MS! That is a pretty huge thing and I am so very grateful to have been offered this opportunity!
Thank you everyone for being a part of this! You too, are part of history by being my strength and companions through this!
I love you all!

Monday, March 29, 2010

March 29, 2010

Interesting information to share today. I have become extremely fatigued and dizzy today. Kind of have a scattered brain feeling. My thoughts are getting scrambled and I can't seem to keep my mind from wondering off subject during regular conversation.

This is obviously my body reacting to the lack of medication in it. The Tysabri is almost gone and therefore the effects are wearing off too. I will be calling to see if I can take Detrol LA and Ambien CR, hopefully I can take Dramamine and Advil for the occasional spins and pain. I knew this would be the hardest part...being off all MS medication, I feel vulnerable, but I am doing deep cleansing breaths to stay calm.

2 more days until testing. I can do this. Hopefully only 5 more weeks before HiCy. Keep those prayers coming :) !

Saturday, March 27, 2010


March 27, 2010

I received all the prescriptions for tests! I get to have my heart, my lungs, my kidneys, my liver and my blood tested, gotta make sure I'm healthy enough to drop my white blood cell count to zero! Haha...I am so excited!! Got my doctors appointment for April 1st! 5 days away! Not bad! So, we will see what the results say, and then, hopefully be on our way, back to the Windy City!

I actually stayed in Chicago 4 years ago at a really nice hotel. I had an exacerbation (ms attack) and flew home barely able to walk! Jessica started 3rd grade with her Mom unable to drive or walk without assistance! Isn't it funny how I'll be in Chicago for the treatment that stops this from happening again! The Lord works in mysterious ways! Kinda creepy...but AWESOME!

Wednesday, March 24, 2010

March 24, 2010

Talked to Corey Woods, the head nurse at Rush, today. She is getting prescriptions together for me to have some of my testing done here. I will then go to Rush to meet the oncologist, Dr. Shammo, and finish testing. Once that's all completed a date will be set to receive HiCy.

Makes you wish you lived in Chicago...totally kidding, I love Arizona. So, now we must coordinate another trip to Chicago and see how it all pans out. I will let you know how the testing goes as soon as I get results.

Tuesday, March 16, 2010

 March 15th, 2010


So, I'm getting ready to leave, to go to my infusion center to get Tysabri, when the phone rings.  It's Dr Stefoski calling from RUSH, to let me know I have been excepted and Corey (the head nurse) will be calling me to get my tests underway!  I did not go get my Tysabri!!!  
He also let me know it would not be 6 months until I get HiCy...the Tysabri is completely out of the system in 12 weeks!  I am so happy, but nervous too!

I thought I was going to have 6 months to get everything ready and prepare the house and get things organized.  Seems I don't have quite as much time as I thought!  So, I will just do the best I can with arrangements, I hope everyone pulls their weight, because I will have no control over it.  Putting things in God's hands is awesome...it always seems to work.

Here I am about to rid my body of a disease that has controlled my life, in some manner, for the past 24 years!
Thank GOD!  I am so ready. 

Wednesday, March 3, 2010


March 3, 2010
Back from Chicago. RUSH was amazing! What a huge place! Dr. Stefoski was very nice and went over everything. My 1 hour appointment was 3 hours! I had no active lesions on my MRI and he said all my MRI's from the past 4 years show no active lesions! Yet, I am steadily getting worse!

So, he had an MRI of my thorasic spine done, to see if the activity is lower on my spine. He took 7 tubes of blood to test for other things. Now we wait for all the results to come back. Hopefully we will hear on or about the 10th! Cross those fingers!


Friday, February 19, 2010

February 19, 2010

I'm packing for Chicago!  It has been in the mid 70s here in Phoenix.  It is freezing in Chicago and windy!  I have packed layers so I'm hoping to stay warm!  We will see......

I'm still very nervous and can't wait to know if I'm getting HiCy or not!  Will let God handle it because it will happen if it's meant too.  Here's to hope.

Wednesday, January 27, 2010

January 27th, 2010

So, I am currently on Solumedrol steroids for my exasperation! Not the first time...maybe the last! :)

I have made a list of all my current disabilities and MS problems. I also found out that when my hands are shaky, that's tremors... my infusion nurse told me...I just thought I had shaky hands.

So here we go:

1. Daily headaches in front of head, headband, and back of lower neck.
2. Ringing in ears, turns to stuffy feeling, hear noises that aren’t there.
3. Neck pains on front sides of neck continuing down to middle chest area.
4. Occasional problems swallowing (feels like I can’t remember how).
5. Middle chest area squeezes (MS hugs).
6. Aching shoulders and numb, sometimes shaky hands.
7. Chronic constipation, bloating until I take enough meds to make me go. Can eat once I have bowel movement, appetite decreases as bloating occurs if constipation not controlled. Must stimulate sphincter to have bowel movement and to empty bladder. Loss bladder during exasperations.
8. Atrophy in right leg, both upper and lower. Right foot numb from toes to knee. Left foot newly numb from toes to heel.
9. Drop foot on right side.
10. Sudden spasms in legs, sometimes painful.
11. Intermittent eye sight change in right eye.
12. Occasional slurring of words.
13. Difficulty breathing in last 2 months especially when laying on left side.
14. Anxiety, and unable to sleep without taking Ambien CR.
15. Noise sensitivity.
16. Drop things because I can’t feel them in my grasp.
17. Walk into walls and fall easily when things are in my path, such as uneven surfaces, or obstacles I need to step over.
18. When flaring nausea, vomiting, vertigo, extreme dizziness, wall walking, and unable to drive.
19. Often unknowingly carry my right hand like CP patients.
20. Hot hands, my hands get extremely hot some days, or cold hands, extremely cold.
21. Today, 2/23, during this exasperation I have lost feeling in my left foot and my left hand has started having random jerky spasms. Calling Dr. Hendin Monday for steroids.
22. 2/24 Now my left arm is in pain, shoulder down.
Yeah, so that pretty much sums it up. Now, I will be finishing my 5 days of steroids, hoping I feel better, and then off to Chicago to see if I can sell myself as a candidate for this treatment! It's time for a life change... HiCy.

Sunday, January 24, 2010

1/24/10 I am starting my blog today! I have been researching Hicy (high dose cyclophosphamide a.k.a Cytoxan (chemo)) for 2 months now. My neuro has approved an appointment with Dr. Stefoski at RUSH in Chicago to get his opinion on whether HiCy is right for me.

My appointment is set for February 23rd and I have my arrangements all set. I am in the middle of an exasperation due to high stress during flare, as my father-in-law passed away after a week in hospice. We flew to be by his side 3 weeks in a row. This was exhausting in sooo... many ways, as you can imagine.

Now my journey is beginning. I have been on Tysabri for almost two years. Prior to Tysabri, I was on Avonex, but having continual exasperations every 3 to 6 months. On Tysabri, I have had two major exasperations, one in March of 2009 and now this one.

My nuero is not sure what we will do, as we approach the two year mark. A holiday off of Tysabri, just keep going, while the chances of getting PML (AIDS in the brain) increase, start a new med? So, I started looking into other meds, and came across HiCy. I believe this happened for a reason, but that's just me.

I have experienced so much trauma, I will have to blog that once I've compiled a list of my unfortunate events. Until then, please pray for a yes in Chicago, so I can continue on my journey and share with all those that are interested in remission of this debilitating disease.

After researching HiCy, I can tell you, it seems like a really dramatic treatment, but it has a really dramatic outcome. It can't be taken for granted. There are positives for sure, but there are negatives.  I have constructed a list with the help of Amanda Lights blog...she has had HiCy!  www.amandalight.com 


It is the one thing I can do to stop recurrence.
I want to maintain as much independence as possible.
Not a reoccurring treatment, but a one time re-boot.
Why wait for disability before being aggressive? Stop it where it is now!
Lab studies on rats, proved that HiCy followed by Copaxone made the rats immune to MS cells.
The treatment has a 90% success rate, but 100% are better off than they were before treatment.
Least risk of relapse.
Least risk of having to take other expensive medications.
The other MS medications claim to reduce the number of relapses and minimize the intensity of the exasperations, but not to eliminate them. I am having at least one a year.
It has been proven safe, though there are risks as with all medications.
I have read numerous blogs of patient that have had treatment in the past as well as following patient through the journey. I know what to expect!
I know the routines that will be followed from speaking to RUSH HiCy patients.
It will take less than a month to receive the treatment followed by years of PT and healing, but I have been enduring more and more disability as MS progresses over the years.


Sounds scary.
Can take a few months to be back to normal energy levels.
Have to be hospitalized for almost a month.
Lose my hair!
May increase long term risk of cancer.
Have to be off current medication for 6 months. Chance of rebound.
May be sick for quite a while.
No long term studies proving it will never come back, just follow up of the patients that originally received HiCy.

With all that said, I choose HiCy. Will update as soon as I've got my list of MS symptoms and disabilities.:)