Monday, October 19, 2015

Update! Very long overdue +166 days

My hair is back. It looks like I have a pixie cut and people have been complimenting me on my new haircut. I'm still hoping that it grows fast!

Recovery really is like a rollercoaster. I have had great days and not so great days. My walking,
which was better is not so great this week.

My physical therapist released me from her care and now I'm on my own. I started going back to my
gym about 6 weeks ago. At first I was only doing the elliptical machine, weights and stretching.
Now I am going to Pure Barre classes. The Pure Barre classes are a combo of Pilates, dance, cardio and strength training. This is a video of a Pure Barre class. Not the one that I am going to, but it will give you an idea of what it is about.

Pure Barre Class

I go to the Pure Barre class on Monday, Wednesday and Fridays and I go to yoga on Tuesdays and Thursdays.

The oncologist is having me come once a month now. Last week my WBC was up to 5.7 so
we were all happy about that!

More later!




+90 Days


I was +90 days on Wednesday, August 5th 2015. Time has flown by faster than I thought
it would. Physical Therapy is twice a week and exercises at home. I'm trying to go for
a walk everyday or ride my bike. The weather has been beautiful. Being on my computer
has not been easy. I started this blog post last week, but am only now getting back
to it!

I have been following the main HSCT Facebook group and the Israel one. There are
so many of us that need to have HSCT. It is heartbreaking that it is not available to us
in the US and that it expensive. My having the procedure was not a hard decision.
I had failed 3 MS drugs (DMD's) and my walking was getting worse everyday.

One of the questions that someone asked in a Facebook group was, what are the
negative parts of the treatment? They pointed out that most people just talk about
the positive parts. So, I am going to talk about the negatives in this post.

My hair fell out, almost everywhere and is not growing back as quickly as I hoped
it would! My eyebrows are good and my eyelashes are finally back. I only lost the
lashes on my right eye. My brows on the right side did get thinner. The funny thing
about all this is that my foot drop is on my right side also! MS must like my right
side much better than the left.

Being bald is not fun. I have chosen to not get a wig and am wearing hats when I
go outside. The sad part is that most people think that I have cancer and there is not
a day that goes by, when I am in a store or up at a doctor appointment, that someone
asks me what kind of cancer I have. Then I have to tell them the HSCT story.
People are always shocked when they hear it and I have yet to meet someone that
doesn't know someone with MS. I guess that I should have some cards made with
the HSCT info to hand out!

Tuesday, July 21, 2015

Being Thankful

The dogs want to be fed the first thing in the morning and as I was taking care of them my
husband called me to hurry up and come into the greatroom. There were 4 Sandhill Cranes
eating in our yard.

What amazing birds! It was a family. Mommy, Daddy and two babies. The picture is a
little blurry since I took it with my phone. Seeing these beautiful birds just reminded me how
thankful I am to live where we we do.

I have seen improvements in my MS symptoms since I have had my HSCT. My foot
drop is better. My fatigue is pretty much gone and I am sleeping better than ever.
I can bend the toes on my right foot. My balance is much better and I am riding my
bike.
I have posted before that I am walking 1-2 miles a day. My dogs are very happy that they
get to go for walks again! My husband has been great going for walks with me. He has
been great throughout this whole thing! We tried out a new trail the other day and it just
felt great to get out!


I saw my neurologist last week and he is very happy with my symptom improvements.
We never went into this expecting my walking or anything else to improve. I think that
he must have done some research on HSCT since he saw me last. Before I left for
Israel, my neuro ordered all the tests that Prof. Slavin wanted, but he wasn't thrilled
about it. Now, he told me he thinks HSCT will be a standard treatment and that he
believes the FDA will 'fast-track' its approval because people are getting very 
discouraged (I can't remember the exact words he used) with the pharmaceutical 
companies charging so much for MS drugs.  

My neuro also ordered more Physical Therapy for me for a total of 12 weeks. 
My PT is great and is focusing on the muscles in my right leg and side that have
atrophied over the last 3-4 years. Dragging your right leg behind you will do that!
She has me doing exercises that are very focused on small muscles and lots of 
balance exercises also. She wants me to use walking sticks when I go for a walk.

Happy Birthday Marilyn!!!
My first dinner out was on Saturday night. We went to a very nice restaurant. It was
very fitting to have my first dinner out with our good friends, Marilyn and Anders.
I am so thankful for Marilyn and having her be with me during our time in Israel.
She took such great care of me. I will forever be grateful for our friendship.

First dinner out! 
My hair has finally started growing back. It is blond and fuzzy. I live in my pink
baseball hat.  

My mom is in a nursing home. She has dementia. They had the Hyalite Country
Care Olympics last Friday. I just wish my mom could know what this treatment
was and would have been a part of it. She would be so happy!

Mom, Dad and Cody

















Saturday, July 11, 2015

+65 Days

I went to the grocery store by myself this morning! I went early so that there were
not many people there yet. It felt great to get out and go into a store! I was extra
careful. I had a handful of anti-bacterial wipes and used them to sanitize the cart
handle and everything that I touched! There were very few people in the store and
I didn't go near anyone. I'm still a germaphobe and will be for a few more months.

My Monday appointment with the oncologist/hematologist went really well. She is
very happy with my blood tests, which are all within normal range. She ordered
Physical Therapy and I have am going 2 days a week. The exercises are hard, but
feel great. She has me doing exercises to build back the muscle that has been lost
over the last few years of dragging my foot behind me. It is a great feeling to work
on getting better. She has asked me to go see the nutritionist that they use for the
cancer patients that have gone through chemo. When I called to make my appointment,
the nutritionist knew all about HSCT. Not for MS, but for cancer. I go see her next
week. I'm really not sure how she will help me, but I'm following my doctors
orders.






 I have been walking 1-2 miles a day around our
house. This is the start of the trail system that is
about a block from our driveway. The trail system
in Bozeman is amazing. We take our dogs with
us and they love running in the grass and on the
trail.


Another picture from down on the trail.
You can see our house from this view. I love going to walk everyday!
I am also doing the exercises that my
Physical therapist gave me to do at home.




There was a video posted on Facebook a few days ago of the Bone Marrow Transplant Unit
at Hadassah Hospital in Jerusalem. It was so fun to watch! I saw a few of the nurses that took
care of me and a couple of my doctors in the video. As I have said many times, the care is
amazing there! Here it is!


Tuesday, June 30, 2015

+54 Days


It has been very hot in Montana the last 4 days. About 97 degrees. This is a picture of what
the dogs have been doing for the last 4 days. It is much too hot for them to go outside!
Even though they have their own kiddie pool in the shade.
I am doing surprisingly well in the heat. My husband is still doing all the shopping
and I have not been to a store yet!

My appointment yesterday with the Oncologist went really well. She does want me
to stick with the diet of no fresh fruits or vegetables until I am at +90 days.
Also no yogurt. She did say that I can start venturing out if I am not in a crowd or
around sick people. Well, I am now a germaphobe so that is no problem.

As far as my blood goes, my tests yesterday were really good.


I think that staying home for the next 4 weeks will be alright. I am keeping busy
knitting, reading, walking (when it is not 100° outside) cleaning my office, etc...
I have amazing friends that come and visit too. 

The Doctor told me that I need to start Physical Therapy. I'm going to my first a
appointment in a few minutes. I will write about this later.  Hope everyone is enjoying
the Summer!!


Tuesday, June 23, 2015

+47 Days!!

I have been home now for a little over 3 weeks. My time is spent at home and outside
on the deck! This is one of the views from the deck. I am very thankful that it is so pretty!
I am getting cabin fever.


I posted a question on Facebook about mosquitos and if they are dangerous
after having HSCT. I am now the proud owner of all sorts of mosquito
repellant that does not contain DEET. I guess that getting mosquito bites is
not a good thing when your immune system is not 100%. 

The week before last, I ended up in the hospital Emergency Room with a fever
of 38.8. Going to the ER was just a precaution and I am happy that we went. The
ER doctor had never heard of HSCT for MS, which is not a surprise. My internist
decided to have me see the Oncologist for my checkups after the fever. 

I have now seen the Oncologist two times. My blood work has come back very good.
Everything is within normal limits. She is very happy, but I still need to be very
careful about being around other people. 

A few of my close friends have come over to visit. Not all at once though! 
Each person has to wash their hands before touching anything and then we go 
sit out on the back porch. I'm just thankful that it is Summer in Montana and not
the Winter, or we wouldn't be on the porch! This is a picture of what it would
look like in the Winter from the deck. 

So, now I am waiting to get my immune system back to where I won't have to 
worry about getting sick anymore. I've seen improvements in some of my symptoms.
The first symptom that I saw improvement in was being able to bend my toes on my
right foot. I noticed that they would bend when I was in the hospital in Jerusalem. 
The next symptom that improved was my worst one. My right leg has been 
dragging behind me for a few years and I have had very bad foot drop. 

My right leg is not dragging behind me anymore. It is now possible to go for 
a real walk. My cane lives in the car now. I'm hoping it will stay there for good. 
When I had that fever a couple of weeks ago, my leg got bad again. After the
fever left and I rested up, it started working again. 
I'm thankful everyday for being able to pick up my right leg and walk. Now, I am
focusing on building the muscles up since they are much smaller in my right leg. 
It would be nice to have matching legs again.

My goal with having HSCT was STOPPING the disease progression. 
Any symptom improvements are a BIG BONUS!! 






Sunday, June 7, 2015

Home

We arrived home last Friday, May 29th. A week earlier than planned. Flying
to Montana from Israel is exhausting!


It took almost 24 hours to fly from one side of the Earth to the other side!! I still
have jet-lag and we have been home for 9 days.

I am so thankful that I was able to go to Israel to have my HSCT. What a
blessing. I am especially thankful for my friend Marilyn. She came with me
to Israel to take care of me and she was amazing!!

My husband has supported me through all of this. Mike spent hours reading about
and researching the procedure before we even decided that I should do it. When I
got home, he had the house clean and had even replaced the carpet in our bedroom
so it would all be clean.
He had even organized our closet, which was a huge job!
Mike's other major job while I was in Israel was taking care of my parents.
My Dad is 93 and lives next door and my mom is in a nursing home with
dementia. He did all of this and still went to work everyday.

Being home is so nice! I think that sleeping in my own bed is the best feeling
ever! I have been walking around the block everyday. I went two times a couple
of days ago. I'm trying to get my strength back. I'll start increasing the distance
as I get stronger. The muscles in my right leg are much smaller than the left
because of my foot drop. My foot drop is not totally gone, but is better
after my HSCT. I'm still very slow and am concentrating on each step and
how my foot connects to the ground. I have not been using my cane since I
got home.

Up until a couple of years ago when my foot drop got so bad that I had a really
hard time walking, my favorite thing to do was hiking. We live in a place that has
more hiking trails than you can count! My goal for this Summer is to hike to the M.


This is a hike that I have done so many times I couldn't count them. There is a hard
trail that leads straight up and an easier trail that goes to the left through the trees. 
I will be trying the easy trail! I'll post an update when this happens. Mike got my
mountain bike down yesterday and I might try to ride today. I need all the
exercise that I can get.

It has taken this whole week to get over the jet-lag. My dad says that it takes one
day for every hour of the time difference. He has traveled all over the world, so
he does have experience. Not to mention that he is very wise being 93 years old!

Since I am a total germaphobe now, I'll be staying home unless I have to go get
blood drawn or go to the doctor. I did ride with Mike to the grocery store last
night, just to get out of the house, but I stayed in the car. It is not worth getting 
sick with my non-existent immune system. Mike is going to do all the grocery
shopping and errands now. At least he will only buy what is on the list, which
is hard for me to do. Mike shopping will probably save us a small fortune. 

I'll still be blogging about my progress and welcome any questions from others
that are considering having HSCT.