Lisa's Hope

Still an Epic Rollercoaster!!!

Hi! I am back! Did you miss me? Sorry it has been too long. It has been almost two years since I last posted and let me just say…it has been a crazy up and down two years full of happy times and disappointment. Where shall I start?!

Let me recap a bit.

In 2011, I went for my one year check up and walked in with a cane which prompted worry from Dr. Burt. Along with the tiny brain lesion in my frontal lobe…this was cause for concern. So, the logical choice was to get more chemo and I started Cytoxen once a month for six months. We had the schedule, we were prepared. I asked a logical question, “Will I lose my beautiful, luxurious hair again after such a great growth spurt?” The answer, “This dose of Cytoxen is about half of what you had before, so, probably not.” Therefore, the next phase for me had begun.

I went in for my Cytoxen coupled with other medications like Zofran, Mesna, and Solu-medrol. I came in with my coffee and snacks, my books and pens because, well, to be honest; I always wanted to be a writer of children’s books. But that is a completely different topic. Anyway, there I was getting chemo AGAIN for something I thought was pretty much stopped. What was really strange about this was how nauseous I got. I didn’t even feel sick while in the hospital for the transplant, which makes me wonder if the mind really does play tricks on you. I mean, when I had the transplant, I was so excited and nothing seemed to be a problem for me. But getting more chemo, I think, upset me more than I thought. I think the fact that this has apparently only happened a few times and I was one of just a few, made me really upset. I had goals, this was NOT on that list.

After the third month of chemo, I got really, really sick. I didn’t realize that the little cough I had was the beginning of an infection. Coupled with the immune system fighting chemo, I was basically destroyed. I ended up almost admitted to the hospital with a terrible infection that I could not fight. My husband contacted Dr. Burt and we set me up to get my blood drawn until my WBC’s went up. I avoided going anywhere or doing anything unless it was to get my blood drawn. I wore a mask because the place I went to get my blood work was filled with people and I could get worse. That was a scary time and after much discussion with Dr. Burt, my husband and I decided that the additional chemo was not helping me. So, we stopped after month three.

My walking continued to be a problem and when I think back, I realize that I was holding the walls to walk even before my transplant. Not as much as I do now and I do agree that it did worsen. I do feel strongly that it got worse because it was bad to begin with and after deteriorating so much before my transplant, I did not learn to walk normally afterward. If I had the transplant just a little sooner, I think I would be doing really great! Thanks to my wonderful insurance company and the battle of a lifetime, I was unable to get the transplant sooner. That is an extremely hard reality to be faced with, let me tell you!

I went back to see Dr. Burt and Dr. Balabanov (Dr. B) earlier for my next (2 year) visit and had another MRI which showed…no new or enhancing lesions! Yay! So, here I am walking like garbage and nothing new going on. Wow. When we saw Dr. B. at that appointment, my husband told him to look at my MRI before we left because he did not see it the last time until later and come to find, he would not have recommended more chemo because he felt the new lesion found at year one was asymptomatic. Yeah, I know! If only we saw him sooner, right? RIGHT!!!! It was in the frontal lobe of my brain and wouldn’t that have something to do with my mind and not really my walking?! After all, I aced the math test! Wouldn’t a lesion in my brain show a deficit there? I guess the fact that my walking did look worse and there was a new lesion just spelled failure. But, anyway…

So, in the time since my second round of chemo, I have been back to Chicago a total of three more times. Since that new, enhancing lesion at year one; there have been NO more new or enhancing lesions. I use trekking poles to walk and when going long distances, I do use a wheelchair. Yes, it is pretty frustrating, but, at least I am not permanently in the wheelchair. Hopefully that will never happen, but I have to try and embrace this life, if only for my kids! Some people may think that I had failed this extremely expensive transplant, and I can see why they would feel that way; but, I do feel that it did help me; just not in the area that I had hoped…

I take 4AP (4-Aminopyridine) which helps with my walking. It is similar to Ampyra. We are in the process of possibly stopping this medicine because of heartburn and puffy blue feet…geez!!! It is important to note that I do NOT take any MS medications whatsoever. The 4AP is to help increase my walking speed.
I have worked with a physical therapist at Mary Free Bed in Grand Rapids who is wonderful. He has never given me the feeling that I am a lost cause or that I will never get better. That speaks volumes to me I must say. If you are working with someone who has the job of helping you, they must be positive and not give the impression that you are not going to get better. Anybody in that type of profession take note!

I have tried new things, such as a robotic walking mechanism called the Lokomat Pro where I am put into a robot and it helps me walk normally. I have been known to walk a mile and more in that thing! I get to watch a screen and it shows my progress. It also shows where my legs are strong and weak and we have found that I can swing my leg forward, strike my heel like a pro, but upon lifting my leg up from the hip…I am really weak.

Me in the Lokomat

I have also tried a new walking device that has been out within this year called the Kickstart. It uses a spring to pick up my leg on the upswing and is definitely quite helpful. They have a How Kickstart Works that shows what this device does. I am actually the first person in Michigan to get this device and was on TV and in the newspaper because of it.

Me in the Kickstart
I also have many other devices and pieces of equipment that I am using to maybe, just maybe, get this leg back! I will write about that in a future blog entry.

Here’s to high hopes! Can I get an AMEN!!!!

As it stands right now, I do not know where things will go for me and can get a little sad about the situation. In fact, I get a little angry!!!! A whole lot angry…you know!!!! I am thankful for my family and friends and am so happy that I was able to have my two beautiful children. I think that was my purpose. I know some people ask why I would have kids after my diagnosis and I can only say, “Why not?” I would not change that for anything! I wish I was more active with them, but, not have them? No way!!! Maybe that sounds selfish, but they are my heart. To have such wonderful kids who are empathetic, kind, caring, and adorable is a great purpose. Oh, and I did save their stem cells just in case they run into something terrible health wise! After all, I do worry about a future illness cropping up for them; but, this transplant has proven to me that many of my symptoms are gone and have stopped. I just wish I did it sooner…that’s all.

So, with this information in mind, I find that one should never take anything for granted. Use the abilities you are given, be thankful for what you have and just live! Oh, and if you are NOT

Only for handicapped

…stop taking the parking spots!!!!

• My current symptoms are as follows:
• Hand numbness = gone
• Blurry vision = gone
• Numbness in feet up to knees (both legs) = 95% gone (the bottoms of my feet are still somewhat numb)
• Heat intolerance = I got this back and my feet really swell in the heat and are pretty puffy too at times. I don’t even take chances showering in the morning and will only shower before bed at night. I need the energy that is taken from me after the shower. I have kids after all!
• Bathroom problems = 95% gone
• Lhermitte’s sign = gone
• Balance = yucky (the 4 AP probably has a lot to do with this)
• Walking problems = still here and even a little worse (I love online shopping though…)

Would I do the transplant over again if given the chance? Yes! Definitely. Just thinking of where I would be now is reassurance enough that it did help me. Oh, and we moved into a two story house…so, yeah, I am doing pretty good considering the alternative!

Until another day…

1 Year Later..Maybe it was just a Headache…

Hi All!
I do recall from my “very long ago” last post that this post-transplant time has been a roller coaster ride of epic proportions…right?

I continue to be right about this!

So, at the end of October and before Halloween, I tripped and fell! Yeah, I kept tripping on my toe and it was only a matter of time before I came crashing down and, well, that is exactly what happened while walking with my baby girl down the hall to her daycare class. She decided to walk behind me because she was trying to play hide and seek with a teacher down the hall. I just took a step, tripped on my stupid right toe and fell. I got up and had to sit down on a bench that was next to us. My sweet Sammie was so upset, she kept saying, “Mommy fell” over and over. A teacher who saw what happened and knows our situation came over, told me to stay there, and took her to her classroom. Then, he came back and offered to help me to the car. I have to say a huge thanks to him for helping in this situation…how EMBARRASSING!

Anyway, when I got home, I called my husband at work and told him that I needed to get a cane to help until things get better with my leg. He was going to be going on a work related trip that afternoon for a few days and I could not imagine walking without some kind of help. He came home and took me to a medical supplies store where I found a cane. It was unbelievable how much more confident I felt with a little assistance. I had fought the idea of getting a cane for a long time and before the transplant, I should have had one because I was walking while holding on to anything including: the wall, a railing, my son…you get the idea. I guess what I’m trying to say is that I should have had a cane before the transplant. I just didn’t want to be seen using one! Hey, you live, you learn…

The fact that I fell, made me really angry because I felt like I went backwards with my ability to get better. I mean, gosh, I had a transplant to get rid of my MS or at least stop the progression…what the heck…I lost hair for heaven’s sake…I went through a lot…this could not be the result!

Then came my one year evaluation with Dr. Balabanov, Dr. Burt, and many of the other wonderful people who helped make this transplant possible or assisted with my care. It was a week after my one year stem cell birthday and I had my MRI which lasted longer than normal because Dr. Burt wanted to see if there were any new or enhancing lesions on my thoracic spin. Talk about a long time in that machine! Thank God they offered me music on headphones to pass the time. They are getting better with finding my musical choice…tons of rock! I mean, who wants to sit in an MRI machine for a few hours and listen to sad music? Not me!

After the MRI, Jim and I met up with my girls who had the transplant the same time as me and their significant others for dinner. We also had a short visit with another girl who was a week ahead of me for her transplant. It was so great to see all of them and their progress is spectacular! I am so jealously thrilled with how well they are doing! It does prove that this transplant works and everyone is different, meaning it is going to take more time and patience for me to get better in that one stubborn area of resistance…

Stupid Leg!!!!

The day after my MRI and required bloodwork, I met with Dr. Balabanov (Dr. B.). He is a great doctor who totally understands this whole process.
Dr. B evaluated me and decided that I have incredible strength. He feels that my leg has a lot to do with “mechanical issues” in that over the duration of this disease, I developed a strange way of walking that includes the inability to lift my right leg due to hip weakness. He felt that I needed to get a rehab doctor on board who specializes in neurological problems and had me make an appointment out there to develop a program for me to do at home. Needless to say, I left his office feeling pretty confident that this walking issue had nothing to do with the transplant and was, in fact, something that needs more intense work.

Then we met with Doctor Burt.

They found a new enhancing lesion in the frontal lobe of my brain. Yeah…
I know you are all thinking what I was that day….WHAT!!!! I went through all of this and the disease is still hanging on!!!! I’m, as I would say in front of my kids, VERY ANGRY!!! Needless to say, this took a few moments to sink in. But, thankfully, I was sitting there with my husband, who seems to really know a lot of stuff and he discussed with Dr. Burt about what to do next to finally kick the MS out. The answer…

More chemo.

So, it was decided at my one year evaluation that I would get one Cytoxen IV a month for six more months and this would finally give the MS one final aggressive kick that it needed to go away. Apparently this has happened only a handful of times before and with further immunosuppression, the disease says buh bye. I don’t mind doing this and am remaining hopeful that in the end, I will come out ahead. I also wanted to say that the other tests that they evaluate my abilities on went pretty good for the most part. The peg test was done right after I found out about my new lesion and was a complete failure. I did have a lot on my mind while trying to put those little round pegs into the little round holes after all. But, after talking a little bit with Kim, the nurse; I was able to walk faster for the 25 foot timed walking test without using my cane and did better with the wonderful math test they gave me. Both of these tests showed an improvement compared to the 6 month results.

So, this makes me wonder….brain lesion, huh?
Hey, maybe it was really a headache.

The Ride of a Lifetime

Did I ever mention how much I do not like rollercoasters? I actually hate them. Yeah…that feeling in your stomach when you go up and the anticipation felt with every single click until you reach the top. Then going down.
The rollercoaster that I am on right now is sort of like that. When I feel good, the anticipation is awesome. When I am at the top…it is the best! But then…I go down.

That is frustrating…

I am happy to say that now, I’m almost to the top again. I have been told by many people that this year is a tough one and that you will feel great, then not so great. It is incredibly reassuring to know that I’m not alone.

Would I do the transplant again? A thousand times: YES! But, I do have to tell those who will be or are going through it now, the first year can be pretty frustrating!
Will I ever like rollercoasters? Probably not…It’s too much worry and stress isn’t good for anyone. This rollercoaster is different though, it’s a path to feeling better and I’ll continue to hope that I’ll stay at the top longer and longer…
Thanks for listening and I’ll write again soon…

I’m Up…I’m Down…No, I’m Up…

Hi…surprised that I’m back so soon aren’t you! Well, I decided to follow the advice of a very good stem cell friend and try posting something each week about my progress. So, here we go…

This week has been a little tough for me. It started last Monday with a small cold that really affected my legs. I would love to say that this no longer happens, but with my immune system being so compromised, when I get sick, it still affects me the way it used to. The problem is that I (like others who went through this transplant) have a harder time getting rid of a sickness and the first problem I have is with my walking.

Now that being said, I have found a slight change with getting sick—- I DO NOT get any worse than before. I actually stay where I was pre-transplant. I know some of you may think…wow, well that does not sound good; but for me, it’s great! I’m not getting worse…that’s BIG!

When I do feel this way, I try to find someone (anyone) who had the same experience and have searched through a few websites of people who had the same treatment. This helps reassure me and believe me, that is something that anyone going through this will completely understand…so, here are some of the sites I have searched and the authors of these sites are just wonderful people:

http://www.activemsers.org/

http://themscure.blogspot.com/

http://www.allyoumed.com/

http://www.msstemcell.com/

A couple of these sites are already found on my website, but once it is updated, I will include much more. I just want everyone to know that I have found this first year to be such a rollercoaster ride. And it is not even a year yet! I have such great ups and some yucky downs. I think this is just the stepping stone to getting better and as I have said before, the MS is not worse…just stopped. There are things that are gone, but, still things that need work.

It’s Been a While…

My Hair is Growing!!!

Yes! I am back. Did you miss me?
These past few months have been really busy and now that school started again…WOW…busy, busy, busy! So, I am finally here to put in an update. Sorry it has been so long!

Since my last post, I have had a few crazy things happen, so let’s start by telling you that our insurance company FINALLY paid a portion of the bill! Yes! It was a huge struggle to get this accomplished and let me just say that whenever you deal with an insurance company, take notes. Get the name of the person you are talking to, write it down along with the date and your conversation. I did this and my wonderful husband took this documentation along with other documents about the transplant to the “big guy” at his work and a couple of weeks later we were told that the transplant would be paid for at the percentage that transplants are normally covered. This being said, I want to point out that although a good amount of the transplant was covered; the whole procedure was not. So, we still had to pay a good amount and we are still paying post transplant costs as well. This includes my physical therapy, the blood work I had done, the follow up MRI’s, my stay in Chicago for my check-ups every six months, and any other transplant costs after the procedure. We initially were able to put down a large sum of money that came from our retirement, my parents, and my grandpa. Once we received the money back, it totalled everything my parents and grandpa gave and they were given the money back. This is why the money that was raised through fundraising and generous donations is very important. We would really be in a bad spot if it were not for all of you. Thank you so very much!

Another crazy thing is when I got sick with an ear infection at the beginning of July. Getting sick is really tough on my body! I know my immune system is messed up still, but, wow did I feel it for the whole month. Not only did I get sick, but that really affected my already weakened body. That is why it’s incredibly important to sanitize like crazy! The heat coupled with my ear infection, caused my walking to get bad. It was so frustrated with all the work I put into walking. I have to point out though that I have found the year before my 1 year stem cell birthday to be quite frustrating, but awesome as well. I have such ups and downs, it can be exhausting! Lets just say that my worst day post transplant is better than my worst day before transplant. While my best days post transplant are even better than my best days before transplant if that makes any sense to you.

Some of the things that I have found to be changed include:
~Heat intolerance has lessened significantly after a shower (before, it was so bad that I would have to hold the walls to get to the couch).
~Heat intolerance when outside in 90 plus degree weather, is still a bit of a struggle.
~No more Lhermitte’s Sign-that crazy zappy feeling that I would get whenever I put my head down.
~My vision is better! I am able to see pretty far, like I used to.
~My bladder function is back to normal…sorry if this is TMI, but that was a problem for me and I am doing great in that area.
~The numbness in my legs is slowly going away. Let’s just say that both of my leg were numb from the knee down, now only the bottoms of my feet and my toes are still numb.
~My finger numbness has lessened. It is there, but not as bad as before.
~I can walk further and for longer periods of time. Not great for Jim because this means more shopping!!!

Some things that I am working on:
~Eliminating stress in my life. I know this is practically impossible, but trying to stay calm is my goal. I guess if everyone understands that stress induces my symptoms, they will keep it away from me. That is one thing that was recommended by Dr. Burt’s team…Keep away from stress!!!!
~Walking! Yes, walking further is better and lasting longer is great; but, I am now starting to trip on my foot when walking…yeah, that is weird. I just want everyone to know who sees me that…no, I am not drunk…my foot is just in the way right now! I think my leg is getting better and my toes don’t understand where to go. I always say that things get worse before they get better so on to better things!
~ Physical therapy: I have been working with my therapist for a long time now. We both think that creating an exercise schedule for home is a great option. I also got a membership to the gym where they have a pool to do exercises as well. I love the pool! I can kick and walk so well. At first, I would get out of the pool and just be a big ball of jello! Now, I can move around better than before. I also find that if I sit for a certain amount of time my legs get stiff, so having a plan for everyday sounds great to me! My therapist checked my strength and flexibility when I first came in, I was flexible (like Elastigirl from The Incredibles…), but my strength was just not there. Especially in my right leg (my bad leg). He tested my strength a couple of weeks ago (a few months after my initial test) and we found that my strength is a lot better! He was so happy to see that and so was I! Like I said in my previous post…Baby Steps…

So, needess to say, things are going pretty good. I cannot stress enough how physical therapy is really important for success. I also need to say that some people say this is a cure…well, if stopping my symptoms in their tracks is considered a cure…then that is where I am! Now, I need to reverse them if I can. If not, well, thank heavens for this transplant and the fact that I was lucky to take part in it. If I didn’t you would have seen me in a wheelchair by now…I guarantee it.

Until we meet again…hopefully sooner than later…
Oh, and by the way, comments and questions are more than welcome.

Baby Steps…

Yeah, I’m back! I’m sure you are all wondering how it’s going. The fact that I am too busy to type this up should say a lot! It has been almost 7 months since my transplant and I am writing about my 6 month check up…

So, here we go…on May 23rd-25th, I had my 6 month check up with Dr. B (the neurologist) and Dr. Burt.
My husband and I decided to go on a Monday to be there for my MRI and blood work appointments on Tuesday and my meetings with the doctors on Wednesday. We left in the afternoon and got there around 5:30pm. We checked into our hotel…the Omni which is very nice and just a short walk to the hospital. This hotel is one that gives a discount to transplant patients…so this was even better!

Before our trip, we planned to meet with two of the other girls that I met while in the hospital. They both had the transplant for MS too. One of them was in a wheelchair before the transplant and I have to say…That girl is walking!!!! And, she is walking very well! The other girl had a lot of sensory problems and she says that it is so much better now. She didn’t really have too much problem with walking which is why, when we first met, I wondered why she was wearing heels. It goes to show that MS is so different for everyone and sometimes when you look at a person, you may not be able to tell that they are having such a battle going on within their own body. Here is a picture of them with me:

Me and my Stem Cell Girls!

So, I say this with the kindest of words to those people who want to dent someone’s car door because that person has the nerve to park in a handicap spot…just because you don’t see it does not mean it is not there!!!!

Sorry, I had to get that out of my system!

Anyway, we all met along with another girl who is in the study and will be crossing over to the transplant arm. We all had a great dinner full of some unique and somewhat great memories. I am so happy to have found such wonderful and understanding friends through all of this. I love you girls…

Tuesday was my MRI day along with some blood work…fun, fun… ;) This time, my MRI went so well! They put the IV port in my arm before the MRI without any problems. In fact, the guy putting the line in was so fast, I was in shock! It was done in seconds. They gave me the choice to have headphones for music or just earplugs…of-course I chose the music and told them not to put any sad music on or I may cry. They put on some nice hard rock for me. I mean, there is nothing like some Kid Rock, Nickelback, or Eminem to put me in an awesome mood. Of course, this music also makes me want to work out at the gym, so sitting still in an MRI machine was a bit tough, but nothing I could not handle!

After my MRI and blood work was done, we walked over to see another patient (Marc) who was having the transplant and was actually in the hospital on the same floor I was on just 6 months ago. He is a hilarious guy with a great sense of humor and just had us cracking up. We spent some time with him and his wife and also met another patient and his mother who stayed next door to Marc. They were itching to go home and I can understand that because on day 7, post stem cell reinfusion, you are just ready to go home. I went home day 10 post reinfusion and found that Marc also went home on day 10. It seems like 10 is the magic number nowadays…

On Wednesday, we went to visit Dr. B (the neurologist). He did an evaluation and determined that I was definitely stronger. He also concluded that my work in physical therapy needed to continue to help my right leg which took a huge beating from the MS monster. Dr. Burt also thought the same about my right leg. But, the best news was the MRI finding which showed no new or enhancing lesions. You see, the lesions are the things eating at my myelin which covers my brain and spine. When it is not enhancing, that means that the disease is not active and is not causing any relapses. The fact that they found nothing new or enhanced means a great deal to me and reinforces the success of this transplant.

So, to sum this up, I do NOT have active disease. I was told that this will continue to be a rollercoaster ride and that I will have good and bad days. I was also told that a year from now, I will be doing a lot better. The doctor even feels that in a year from now, I will be back to normal. This news is so reassuring and when I came home and told my mother-in-law (who watched our kids during this time); she said that it’s too bad I can’t just call Dr. Burt to hear those words whenever I am having a tough day.

I have days when I feel like the disease is just stopped where it was which means I feel like I did before the transplant. That is what this transplant said it would do at 100%. I think it is also very important to note here that this means the disease is not getting worse at all. I do not take meds for my illness and the fact that I have not needed steroid IV since July of 2010 says a lot. On that same note, I also have days when things are going so great and I can’t believe how much I can accomplish in just one day. Remember, I used to wake up and choose the ONE thing I would do that day. Now, I don’t really worry about it. I can do several things in one day now and am so thankful for that. People ask if I would do this over and yes I would definitely do this over again. Why? Because I know that I could have been in a wheelchair right now. I also know that it took me 8 years to get as bad as I was and it will take time to get better. I believe very strongly that the key to reversing this disease post-transplant is to be diligent in physical therapy. Don’t just think that once the transplant is done it is smooth sailing from that point on…there is a lot of work that goes into getting better.

Baby steps, just baby steps…

Coming Home…

I spent the last couple of days of my stay walking the halls and meeting different people.  I met a couple of people with multiple myeloma who were walking really fast…they were doing so good!  I met my friends who I met the day of my admission.  We would call each other daily for check ups on our counts and to see how everybody was doing.  I met such wonderful people there.  I got to know my nurses as if they were friends of mine.  On Wednesday, the day after my huge temp increase, my legs started to get sore and I knew that this was a sign saying that I would be going home very soon.  You see, I was taking the Neupogen to get my WBCs to go back up and I had been taking this shot since Saturday the 28th.  There came a point when my legs got so sore, I had to ask for pain medicine and this does work wonders!  I thought I would try extra strength tylenol, but that did not work and it was on to the more potent stuff.

All of the nurses were wonderful, but there is one particular nurse that I will never forget.  Her name is Georgia and  we became really close.  She did start to cry a little when she found out I was going home. 

Me & Georgia

She would walk in each night and say hello to my children’s pictures on the wall and when I would Skype with them, she would say hi to them.  My little man would say hi back, but baby girl would look at her like, hey, what are you doing there!  Then she would wave her little hand.

There was one point where I did actually black out!  My heart seemed to beat really fast during that last week and at the beginning of that week, after taking a nice shower I had to sit and then be wheeled back to my bed because I almost fell down.  When you change your clothes, the nurse has to help get the IV lines through the shirt sleeves and after my shower while she was helping me get my shirt on, I felt faint and she knew it.  She made me sit on the shower seat and they had to transport me back to bed.  So, needless to say, I was “sent to bed” for several hours!  Usually this would be great, but I wanted~no needed~ to get my walking in!  But, after a few hours of rest, I did go for a walk and did pretty good I have to say! 

Every night, I would order toast and jelly with hot tea from the food services.  My appetite really did not take too much of a hit.  Although I did lose about 6 pounds which is back already. 

So, on Friday morning the 3rd of December, I get a call from Amy my Nurse Practitioner on the transplant team and she says, “Congratulations, you are going home today!”  My numbers went up pretty high!  They went up to 7.4 and the normal range is 3.5-10.5; so, being that a few days before they were at 0, this was great! 

I was going home!  Now, all I needed to do was pack and say goodbye to everyone…oh, wait, I needed my IV removed first, right…The nurse came in and removed my PICC line which became a part of me for so long.  If you are wondering, the removal of the PICC line did NOT hurt.  And apparently people do ask to see it after it’s taken out.  In my world, there are some things I choose to leave to the imagination, so no I didn’t take pictures with it or anything…

My IV pole was a constant companion…ahhh…what would I do without it?  I know…walk without assistance!!!  So, after my line was out and my pole taken away, I took a shower, at breakfast, packed up my room, and waited for my husband to come get me.  When he came, we went to each of my friend’s rooms to say goodbye and get pictures and then, well…we went home!!!!  I missed my babies and could not wait to hold them and I can say, the drive home was so hard because, when you love your kids like I do, you want to see them NOW, not in two hours!!!

Walking in my door after being gone so long, my kids just hugged me so tight!  I sat in the living room with both of my babies,

Home with my babies!

 thanked my mother-in-law and father-in-law for taking care of them this whole time and just basked in the reality that, yes, I am home and I am going to get better!  Just give me a year or three for magnificent results!

Inspirational Story…Please View This!

The story here is about a young many with MS who did the transplant and how it seems the MS Society wants to proceed with “caution”.  I agree with this man’s father when he talks about pharmaceutical companies involvement being in the way.  Check it out:

Ben Leahy

My It’s Hot in Here…

After my stem cell reinfusion, which was on Tuesday the 23rd; Thanksgiving came!  What a great thing to give thanks for!  I was thankful to have been able to do this transplant and for all of the help and support from so many wonderful people.  Thank you, thank you, thank you!!!!

My best friend from grade school, Lori and her sister, Lynda planned to come out to Chicago and shop; so, they sent me Thanksgiving dinner from Weber Grill and it was fantastic because, yes, I could eat.  No nausea here, no way!  I had turkey, stuffing, mashed sweet potatoes, and butternut squash soup and all from my dear friends who could not fathom my not having a wonderful Thanksgiving!  They even sent me some food to munch on, t-shirts to wear, and a cute little winter hat with a fuzzy ball on top!  I love you girls…you know it!

For those of you who would like to eat at this awesome place…check it out: http://www.webergrillrestaurant.com/ Lori and I went there several years ago, when I was able to walk and we were able to shop like crazy in Chicago.  Their New York Strip Steak Salad is…delicious! And that’s only the tip of the iceberg there!

Just sitting back and relaxing in my favorite chair...

During this final week and a half of my stay, I started to get low grade fevers at around two in the morning when they would come and do my vital signs.  If my temp reached 101, they would check my blood for signs of infection and give me tylenol for the fever to go down.  This was a very risky time where my white blood cells were gone and my risk for infection was extremely high.  My temp finally hit an all time high reaching 102.2 on Tuesday the 30th of November. 

I woke up at 2 in the morning and had to go to the bathroom.  I thought, okay, I am really hot and when I tried to reach the call button, my whole arm was numb…yeah…crazy scary!!!  Then after calling the nurse, I tried to get my bed up to sitting position, but could not do this because my whole BODY was numb.  I could move only a tiny bit!  It was almost like my multiple sclerosis went…Hey!  What are ya doing????  And gave me a huge jolt of numbness as a reminder! 

Anyway, the nurse came in and took my vitals and I told her I thought my temp would be at least 102…well, it was 102.2!  Now, after checking all my vitals and other stuff…yeah, no details there…I am a girl after all, some things need to remain unsaid!  The nurse assistant actually asked me to stand at the scale to weigh me!!!  Okay, I’m numb from head to toe…how can I do that????  I DID, but with a lot of help.  She then helped me lay back down.  The nurse and the assistant put icepacks along my sides under my arms to bring my temp down, got some tylenol, and had someone come from the lab to take my blood. 

Well, an infection was not a worry.  I did not have one.  I just had a huge black and blue bruise on my arm where the technician took my blood due to my inability to actually “apply pressure” after the blood draw!  Apparently when taking blood for this purpose, they don’t want to use my PICC line…aw well…it didn’t take too long; but, yeah, I was pretty scared about my numbness—let me tell you!!! 

I guess a spike in temp can be expected and it shows that the MS is losing its battle and is trying to hang on but can’t…so HA!!!  How do you like me now MS!!!!  Oh, and yes, my temp went down very quickly after tylenol and I felt pretty good.  And after this very worrisome morning, I didn’t have any more fevers…from then on!

My story will continue very soon…I promise you that!  So, keep checking on me…

You May Smell Like Creamed Corn…

November 23, 2010: Happy Birthday to me, I get stem cells for a fee, I cannot wait to walk well again, It may take a year or three! 

Welcome Back!  Now, on to my wonderful stem cell birthday story! 

On November 23, 2010; I was scheduled for my stem cell infusion at 1:30pm.  My white blood cells were depleted to almost nothing and it was the day for my stem cells to come back on board and (as I have said before) kick some MS butt!  I did my usual routine that morning: woke up, called for the nurse to turn the alarm off on my bed (they worry about falls), went to the bathroom, ordered breakfast (for some reason I loved scrambled eggs, toast, and hot tea), nibbled on some cereal as I waited for my food (yeah, chemo did not really affect my appetite), took my morning medications, put on the television and chatted with my husband about the sleep arrangements. 

He decided that, instead of going to a hotel, he would stay in the room and sleep on the pull out couch.  Not the greatest of ideas because at 2 in the morning, the nurses come in to take vitals, blood and weigh me!  Yeah, I said it…weigh me at 2am!!!  Okay, when you are trying to sleep, why does it seem necessary to get a weight at 2 in the morning?  I don’t think my weight will change that drastically if, say, it was done at around 6am!  I did find out several days later that I could request that my weight be taken later…why didn’t I think of that sooner???  Anyway, Jim didn’t really have the best time resting, so I guess it was okay that he would not be there every night…he did have to go back to work after all.

I have to admit, I was a little nervous that morning.  I don’t know why and when I look back, it really was not something to worry about.  They were giving me back something that came from me. 

Me that morning...

It was just the whole crazy situation that I was in and that, at a younger age I would never have pictured myself going through.  Seriously, I wasn’t really thinking, while going to high school, that one day I would be isolated in a hospital bald, having chemo, and ready to get STEM CELLS for multiple sclerosis.  I know that the concept of using stem cells to fight MS was not even thought of back then and now it is, so if anybody wants to know what to do when they grow up…work on helping people using adult stem cells!  I really think Dr. Burt has something here…

So, yes, my nerves were a little frazzled, but I was excited and ready for anything that could help me!

I had a nice Polish nurse who would be with me that day and it was great to find this out!  I thought about my Grandpa and how he would be thrilled to find out that I had a Polish nurse of all things!!!  So, she suggested that while we videotaped this event, she would speak to my Grandpa in Polish very briefly on the video!  I was thrilled.  My Grandpa and late Grandma are, and always will be, very important to me.  It was almost like Grandma was watching from above and sent me a POLISH nurse.      

My Nurse on that day...

It just made the day even more special because I know she watches over me a lot and this proved it.  I found out my nurse was Polish because of her accent and apparently her mother makes homemade pierogi that you can buy at Kasia’s Deli in Chicago http://www.kasiasdeli.com/.  After coming home, we went to Sam’s Club and there in the refridgerator section was frozen Kasia’s pierogi!  Needless to say, I bought some and they are delicious! 

So, back to my “Birthday”, about a half hour before my stem cell infusion, my nurse gave me some medication and I was told to lay down in my nice cozy bed and wait for the process to start.  At around 1:20, the chaplain, my doctors, my nurse, and my nurse practitioner came into the room.  They were followed by the lab person who was pushing a  cryogenic chamber that contained my stem cells…all 17million of them.  

Caution: Contains Delicate Stem Cells...

They were frozen and she brought them out and thawed them by placing them in lukewarm water.  Thawing my Stem Cells!
After thawing them out, the chaplain came to the side of my bed and blessed them before the nurse hooked the bag up to my IV and hung it on my IV Pole.  My nurse started the line running which had a syringe attached to it to help dilute the Stem Cells to help it go in easier. 
Starting my Stem Cells!

Starting my Stem Cells!

They said it would take about a half hour to run.  Well, for me, it took a little longer.  You see, I started feeling some pressure in my chest where the PICC line was located and they had to slow the stem cells down!  It was a strange feeling and they were very good at knowing what to do and making me so comfortable.   
After slowing the line down, it took about 40 minutes and then they gave me a blood transfusion as well.   
They did tell me that anybody around me would probably smell garlic or creamed corn from the preservative that the stem cells were in, well, I smelled it almost immediately!  Creamed corn!  Thank heavens it was not garlic, I mean, I like garlic, but the scent can get a little overwhelming. 

Us

It was funny though, because Jim could smell it and told me later how strong it was…I told him he’s supposed to say I smell like roses…aw well… 
So, after my stem cell infusion, I decided to rest a little.  And this is where I will leave you…until I continue my story, here’s a few pics that I want to share…

The Awesome Dr. Burt...and us of-course...

Stem Cell Team

Prayer Quilt from Jim's Co-Worker and friends...