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!
Monday, October 19, 2015
+90 Days
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!
My first dinner out was on Saturday night. We went to a very nice restaurant. It was
My hair has finally started growing back. It is blond and fuzzy. I live in my pink
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!!! |
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! |
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!
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.
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.
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.
Tuesday, May 26, 2015
+19 Days
My day is going really well. We went up to the CTCI clinic and my first surprise of the day is
that my PICC line was removed! This was a good thing. I can't wait to have a shower
without putting plastic wrap on to cover the PICC line. Getting the PICC line out was painless.
The only thing that hurt just a little was removing the stitches that held it in place, but that
was just a pinch. I can't say how thankful that I am for the PICC line! It made going
through this procedure much easier.
My blood levels are up as of yesterday when I had blood drawn.
I will be having my blood drawn again tomorrow morning. My second surprise of the
day was meeting with Prof. Slavin. What a kind and humble man. He went over all
of my lab tests and hospital reports. He also talked with me about the meds that I will
have to take for the next 3-4 months. I will be taking Acyclovir 200mg 3 times a day and
Omeprazole 20mg 2 times a day.
My third and biggest surprise was Prof. Slavin telling me that I can go home! He
got his camera out and asked me about any changes that I have has since my HSCT.
I do have a couple of small changes. My right foot has been 'frozen' for a long
time. I was not able to bend my toes. Last week in the hospital, I bent my toes.
This sounds like a small thing, but it is a big one to me! My walking has improved.
I will need to walk everyday to build up my strength. My right leg muscles are very
weak and my right leg looks like a chicken leg. I'll probably go to PT when I get
home.
I just got finished changing our plane tickets and we are going home!
that my PICC line was removed! This was a good thing. I can't wait to have a shower
without putting plastic wrap on to cover the PICC line. Getting the PICC line out was painless.
The only thing that hurt just a little was removing the stitches that held it in place, but that
was just a pinch. I can't say how thankful that I am for the PICC line! It made going
through this procedure much easier.
My blood levels are up as of yesterday when I had blood drawn.
I will be having my blood drawn again tomorrow morning. My second surprise of the
day was meeting with Prof. Slavin. What a kind and humble man. He went over all
of my lab tests and hospital reports. He also talked with me about the meds that I will
have to take for the next 3-4 months. I will be taking Acyclovir 200mg 3 times a day and
Omeprazole 20mg 2 times a day.
My third and biggest surprise was Prof. Slavin telling me that I can go home! He
got his camera out and asked me about any changes that I have has since my HSCT.
I do have a couple of small changes. My right foot has been 'frozen' for a long
time. I was not able to bend my toes. Last week in the hospital, I bent my toes.
This sounds like a small thing, but it is a big one to me! My walking has improved.
I will need to walk everyday to build up my strength. My right leg muscles are very
weak and my right leg looks like a chicken leg. I'll probably go to PT when I get
home.
I just got finished changing our plane tickets and we are going home!
Day +17 Back at the Vital
I was released from the hospital in Jerusalem yesterday. My blood levels were all
coming up so the doctor gave the official okay. Ahron, the cab driver for CTCI came
to pick me up at about 10:00 in the morning. What a great feeling! I had not been
outside in a week.
My happiest moment was walking out of the hospital. My right leg and the foot drop
has been very bad. I was able to walk, slowly, all the way to the cab. I had been
walking laps all week in the Bone Marrow Transplant unit, but this was a really long
way. I have to work hard now to get my strength back.
By the time we arrived back in Tel Aviv at the Vital hotel, I needed a nap. I have to
admit that I am very homesick. Thankfully Marilyn is here!
coming up so the doctor gave the official okay. Ahron, the cab driver for CTCI came
to pick me up at about 10:00 in the morning. What a great feeling! I had not been
outside in a week.
My happiest moment was walking out of the hospital. My right leg and the foot drop
has been very bad. I was able to walk, slowly, all the way to the cab. I had been
walking laps all week in the Bone Marrow Transplant unit, but this was a really long
way. I have to work hard now to get my strength back.
By the time we arrived back in Tel Aviv at the Vital hotel, I needed a nap. I have to
admit that I am very homesick. Thankfully Marilyn is here!
Friday, May 22, 2015
Day +15 The Tomato and the Cucumber
I have been at Hadassah Hospital now for a week. My blood counts are all coming up.
The platelets are lagging behind a little bit. Here is the printout from my week at the
hospital.
I've gotten in to a routine here. Get up, shower, eat breakfast... The hospital food is
interesting. Breakfast and dinner always have the same plate that has a whole tomato,
a whole cucumber, green olives, soft cheese and I still don't have a clue what is in
the little container with the blue top. It smells a little like yogurt.
The platelets are lagging behind a little bit. Here is the printout from my week at the
hospital.
I've gotten in to a routine here. Get up, shower, eat breakfast... The hospital food is
interesting. Breakfast and dinner always have the same plate that has a whole tomato,
a whole cucumber, green olives, soft cheese and I still don't have a clue what is in
the little container with the blue top. It smells a little like yogurt.
The bad part about this plate is that I can't eat anything on it! I did wash the cucumber
once and then tried to peel it, but peeling a cucumber with a plastic knife just doesn't
work. There is also a hard boiled egg and 2 slices of bread. Sometimes a scrambled egg.
I can eat the eggs and bread.
I am sticking with the Neutropenic Diet just to be safe.
The big meal of the day here at the hospital is lunch. I am called out to pick what I want
out of a buffet cart. Then they bring the food to my room. This has become my favorite
meal of the day!
The rest of my days have been resting and walking laps around the unit. I have to get my
strength up and it feels so good to walk and stretch. Prof. Resnick came in to see me
today. He was doing his rounds. What a caring and wonderful man!
I am being released from the hospital in the morning. Marilyn's cooking will be heaven!!
As will the bed at the Vital hotel, my HSCT home away from home.
This has been a hard, but good week. Samira, the head nurse came to visit me yesterday
and she spent time with the doctor here and went over all of my blood counts.
My faith in Prof. Slavin and his team at CTCI is very strong.
The care of their patients is top priority!
Tuesday, May 19, 2015
+12 Days - I am back!
I woke up last Friday, May 15th with a fever of 38.8. Marilyn called the clinic and we went
right up. They don't mess around here! Within about 20 minutes of me waking up, I had
fluids going in my PICC line and antibiotics were started. I spent the next few hours in
the clinic. The next thing I heard was that they were sending me to Hadassah Hospital
in Jerusalem.
That is where I have been for the last 5 days. I am in a private room that is in the
Bone Marrow Transplant wing. The care of the nurses and doctors has been nothing
short of amazing. They have been testing for everything! I did get some kind of
infection in my blood that caused the fever. That is under control now.
When the doctors (there are usually 2 or more) came in today they gave me good news.
My blood counts are starting to rise! I am not sure how many more days I will be
in the hospital until I get to go back to Tel Aviv. But, I am so thankful to be here.
Yesterday I walked 2 laps around the unit in the morning and then 2 more laps last night.
It feels so good to move! I did a little more today and my appetite is coming back.
I am bald now. My husband and I will be bald together for awhile!
Since I am feeling much better now I'll be posting every couple of days. I know this
post is short, but wanted to let you know that I am doing really well. I am so
thankful for all of the good thoughts and prayers from everyone!
right up. They don't mess around here! Within about 20 minutes of me waking up, I had
fluids going in my PICC line and antibiotics were started. I spent the next few hours in
the clinic. The next thing I heard was that they were sending me to Hadassah Hospital
in Jerusalem.
That is where I have been for the last 5 days. I am in a private room that is in the
Bone Marrow Transplant wing. The care of the nurses and doctors has been nothing
short of amazing. They have been testing for everything! I did get some kind of
infection in my blood that caused the fever. That is under control now.
When the doctors (there are usually 2 or more) came in today they gave me good news.
My blood counts are starting to rise! I am not sure how many more days I will be
in the hospital until I get to go back to Tel Aviv. But, I am so thankful to be here.
Yesterday I walked 2 laps around the unit in the morning and then 2 more laps last night.
It feels so good to move! I did a little more today and my appetite is coming back.
I am bald now. My husband and I will be bald together for awhile!
Since I am feeling much better now I'll be posting every couple of days. I know this
post is short, but wanted to let you know that I am doing really well. I am so
thankful for all of the good thoughts and prayers from everyone!
Wednesday, May 13, 2015
+6 Days
I went to the CTCI clinic this morning for my daily check-up. The nurse told me that everything
looks good and that I am now Neutropenic. That means that I have no immune system at
all. He said that I have to be extra careful now, which I have been, but to hear it like that
is a little eye-opening!
I am very tired now and don't feel like I even went to bed. Nodding off while on my
laptop or reading is happening quite often the last few days. Now I wait for my blood
to come back up. Hopefully by next week. I just have to stay well!
Marilyn is an amazing chef and made a delicious dinner last night. She has to make sure
that everything is very well cooked. The Kiwi kitchen is coming in very handy!
looks good and that I am now Neutropenic. That means that I have no immune system at
all. He said that I have to be extra careful now, which I have been, but to hear it like that
is a little eye-opening!
I am very tired now and don't feel like I even went to bed. Nodding off while on my
laptop or reading is happening quite often the last few days. Now I wait for my blood
to come back up. Hopefully by next week. I just have to stay well!
Marilyn is an amazing chef and made a delicious dinner last night. She has to make sure
that everything is very well cooked. The Kiwi kitchen is coming in very handy!
More FYI
There have been questions about the food issue here so here it goes....
The mall on the ground floor of the Vital has a grocery store, very similar to home.
The mall has almost everything you could need, clothes, drugstore, electronic store, etc...
On Friday there is a fresh food market that sets up in the mall with hot food, fresh
fruit and vegies, desserts, etc...
There is a bakery in the mall with fresh bread.
The coffee shop is kind of like a Starbucks, but I think better.
The KIWI Kitchen has: a two-burner hotplate, 2 pots with lids, an electric
frying pan, a Panini press, a big bag to carry it all in, a toaster,
plastic storage containers, vegi pealer, bowl, knives, strainer, spatula.
I might have missed a couple things, but you get the idea.
In other words...don't worry about food in Israel!!!
My friend, Marilyn, loves to exercise and has found that the classes at the
gym downstairs are very good. She has also been walking to the beach and
swimming in the sea! While I am in the room resting she has found some
incredible health food stores, open-air markets that have everything you
can dream of in them and all sorts of other fun things. I'm just a little
sad that I can't join her in these discoveries.
Make sure your Kindle, Ipad, whatever you have is loaded up before you come
to Israel. You can't even watch Netflix or listen to Pandora because of some
licensing thing and the internet. I'm sure that a computer genius could figure it
out, but I don't have the energy.
If you can think of other questions, just put them in the comments below and I will do
my best to answer them!!
The mall on the ground floor of the Vital has a grocery store, very similar to home.
The mall has almost everything you could need, clothes, drugstore, electronic store, etc...
On Friday there is a fresh food market that sets up in the mall with hot food, fresh
fruit and vegies, desserts, etc...
There is a bakery in the mall with fresh bread.
The coffee shop is kind of like a Starbucks, but I think better.
The KIWI Kitchen has: a two-burner hotplate, 2 pots with lids, an electric
frying pan, a Panini press, a big bag to carry it all in, a toaster,
plastic storage containers, vegi pealer, bowl, knives, strainer, spatula.
I might have missed a couple things, but you get the idea.
In other words...don't worry about food in Israel!!!
My friend, Marilyn, loves to exercise and has found that the classes at the
gym downstairs are very good. She has also been walking to the beach and
swimming in the sea! While I am in the room resting she has found some
incredible health food stores, open-air markets that have everything you
can dream of in them and all sorts of other fun things. I'm just a little
sad that I can't join her in these discoveries.
Make sure your Kindle, Ipad, whatever you have is loaded up before you come
to Israel. You can't even watch Netflix or listen to Pandora because of some
licensing thing and the internet. I'm sure that a computer genius could figure it
out, but I don't have the energy.
If you can think of other questions, just put them in the comments below and I will do
my best to answer them!!
Sunday, May 10, 2015
Our anniversary
First, I will admit that it was not an easy week.
Tuesday went by as planned. I went to the clinic and the nurse started
me on fluids. At about 2:00 we went to another medical clinic for my
bone marrow aspiration. The bone marrow procedure was painless. I got
on the table and a nurse put oxygen on me and got me adjusted. The
next thing I knew was that I was waking up in the recovery room. Dr.
Nadir performed the BMA and put in a catheter. We went back to the
CTCI clinic. I was tired, but felt pretty good.
My chemo started when we got back to the Clinic. I spent Tuesday and
Wednesday night there. Everyone knows that Chemo can make you sick.
And it does. It felt like a very bad case of stomach flu. On Thursday morning
I was sent down to our hotel room for a shower. Then I went right back up
to get my stem cells back.
Today is a special day. Not only do I get my stem cells back, but it is our
wedding anniversary. I married the most amazing, loving man 21 years ago.
He is so supportive of me in every way possible. I am so thankful for Mike!
Getting my stem cells back was another unforgettable experience. They
were in 2 blood bags. My Picc line was flushed out and one of the two bags
was hooked up. When it was not going back in to me fast enough, Dr.
Nadir put another IV line in my left arm and started the second bag on the
other arm. The stem cells took about an hour to go back in.
After my stem cells went back in I got a fever. I did get a little worried at
this point. This was a little hard and exhausting. Dr. Nadir and the nurses got
my fever under control and I spent my third night in the Clinic. Sleeping in
the clinic is not easy. The nice part is that when you are in the clinic at
night you have a private nurse. I had 3 different ones and each one is a Bone
Marrow transplant nurse from the hospital. They were each very experienced
and caring. The staff are all so professional and very loving.
I got to go back to the hotel room on Friday morning. I was still very
nauseated and was only able to eat Saltine crackers. Checking my temperature
every hour got to be a habit. I ended up back in the Clinic on Saturday
to have my vitals checked, but no IV.
Today is Sunday and the start of a new week! I was checked this morning and
did have to have more IV fluids. But I am feeling much better today and so
very hopeful! I have gotten through the week of the transplant and now
am on the way to get better!!
Tuesday went by as planned. I went to the clinic and the nurse started
me on fluids. At about 2:00 we went to another medical clinic for my
bone marrow aspiration. The bone marrow procedure was painless. I got
on the table and a nurse put oxygen on me and got me adjusted. The
next thing I knew was that I was waking up in the recovery room. Dr.
Nadir performed the BMA and put in a catheter. We went back to the
CTCI clinic. I was tired, but felt pretty good.
My chemo started when we got back to the Clinic. I spent Tuesday and
Wednesday night there. Everyone knows that Chemo can make you sick.
And it does. It felt like a very bad case of stomach flu. On Thursday morning
I was sent down to our hotel room for a shower. Then I went right back up
to get my stem cells back.
Today is a special day. Not only do I get my stem cells back, but it is our
wedding anniversary. I married the most amazing, loving man 21 years ago.
He is so supportive of me in every way possible. I am so thankful for Mike!
Getting my stem cells back was another unforgettable experience. They
were in 2 blood bags. My Picc line was flushed out and one of the two bags
was hooked up. When it was not going back in to me fast enough, Dr.
Nadir put another IV line in my left arm and started the second bag on the
other arm. The stem cells took about an hour to go back in.
After my stem cells went back in I got a fever. I did get a little worried at
this point. This was a little hard and exhausting. Dr. Nadir and the nurses got
my fever under control and I spent my third night in the Clinic. Sleeping in
the clinic is not easy. The nice part is that when you are in the clinic at
night you have a private nurse. I had 3 different ones and each one is a Bone
Marrow transplant nurse from the hospital. They were each very experienced
and caring. The staff are all so professional and very loving.
I got to go back to the hotel room on Friday morning. I was still very
nauseated and was only able to eat Saltine crackers. Checking my temperature
every hour got to be a habit. I ended up back in the Clinic on Saturday
to have my vitals checked, but no IV.
Today is Sunday and the start of a new week! I was checked this morning and
did have to have more IV fluids. But I am feeling much better today and so
very hopeful! I have gotten through the week of the transplant and now
am on the way to get better!!
Tuesday, May 5, 2015
The BIG week is here!
We are back to Sunday now and the real start of my treatment.
Today I went up to the clinic at 9:00am to get my IV infusion
of 3mg Lemtrada. It had steroids in it and something for nausea.
The infusion was hooked right up to my Picc line after the
nurse flushed it. How convenient! I asked Ashraf if I would
need another IV or anything in addition to the Picc line
and he said no. This picc line is for everything. Even
drawing blood.
Sunday turned out well. I was a little nauseous, but was able
to eat and had a really good day. The nurse said that I could
go out if I felt good, but I really don't want to risk getting
sick. So, I am just going to be thankful for being here and
stay in my hotel room. Learning how to knit is really paying
off now so I have something to keep busy with. Marilyn
shaved my head tonight! I will post a picture sometime!
Monday's infusion was 6mg of Lemtrada.
I was there about 4 hours again. Then went back to the hotel
room. To summarize, I had one injection of 3mg Lemtrada last
Thursday, one IV infusion of 3mg Lemtrada and one infusion of
6mg Lemtrada.
It is Tuesday now and it it the BIG day!! I am going to the
clinic at 11:00 for fluids and then will be going to the hospital
to have my Bone Marrow aspiration done this afternoon.
After we get back from the hospital I will be started on Chemo.
The schedule says: IV Fludarabin 20mg and Cytoxan 60mg.
I will have this same dosage on Wednesday also.
My stem cells get put back in on Thursday morning!! I don't think
that I will blog anything the next couple of days, but I'll be
back as soon as I feel better.
Today I went up to the clinic at 9:00am to get my IV infusion
of 3mg Lemtrada. It had steroids in it and something for nausea.
The infusion was hooked right up to my Picc line after the
nurse flushed it. How convenient! I asked Ashraf if I would
need another IV or anything in addition to the Picc line
and he said no. This picc line is for everything. Even
drawing blood.
Sunday turned out well. I was a little nauseous, but was able
to eat and had a really good day. The nurse said that I could
go out if I felt good, but I really don't want to risk getting
sick. So, I am just going to be thankful for being here and
stay in my hotel room. Learning how to knit is really paying
off now so I have something to keep busy with. Marilyn
shaved my head tonight! I will post a picture sometime!
Monday's infusion was 6mg of Lemtrada.
I was there about 4 hours again. Then went back to the hotel
room. To summarize, I had one injection of 3mg Lemtrada last
Thursday, one IV infusion of 3mg Lemtrada and one infusion of
6mg Lemtrada.
It is Tuesday now and it it the BIG day!! I am going to the
clinic at 11:00 for fluids and then will be going to the hospital
to have my Bone Marrow aspiration done this afternoon.
After we get back from the hospital I will be started on Chemo.
The schedule says: IV Fludarabin 20mg and Cytoxan 60mg.
I will have this same dosage on Wednesday also.
My stem cells get put back in on Thursday morning!! I don't think
that I will blog anything the next couple of days, but I'll be
back as soon as I feel better.
Saturday, May 2, 2015
Just FYI
1. In Israel everything shuts down on Friday afternoon about 3:00 in
preparation for Shabbat.
2. Stock your fridge before 3:00 on Friday with things to eat for Saturday.
3. The Vital HAS: bath soap, lotion (not great quality if you have very
dry skin), shampoo, hair dryer, 2 bathrobes and 2 pairs of slippers.
4. You will need power converters. I bought 2 of these: Power converter
5. When you enter your room at the Vital there is a little electric box by
the door. You have to put your door key in it so your lights will come on.
6. If someone is in the shower/tub and you have to leave the room, make sure
to leave a key in the little electric box or the person showering will be
in the dark.
7. Bring a water bottle. There is filtered water in the lobby by the front
desk and in the business lounge. I wish that I would have brought one,
I'm refilling a plastic one that I bought.
8. There is a drug store, like a Walgreens, in the mall. They have
everything that you could need! I didn't need to bring lotion, extra
toothbrushes, anti-perspirant, etc. It is a waste of luggage space.
They even have contact lenses (over the counter!) and skin care.
9. Bring an HDMI cable so you can watch movies using your laptop. I brought
our Chrome Cast and it won't work here because of the way that the
internet works.
10. Have 7-Up or something carbonated in your hotel room. You might need it
if you are nauseous.
11. My amazing friend, Marilyn, that is taking care of me brought essential
oils and a diffuser. This has been very helpful! Lavender at night and
Peppermint when I was nauseous.
12. I will add to this list as the next couple of weeks go by!
It's started!!
It is Thursday now. I went to the clinic to start my schedule this morning.
Ashraf went over my meds again with us and he took the dressing off of my Picc
line and cleaned it up. He was very efficient and redressed it so it is much
more comfortable.
After the dressing change I received my shot of Lemtrada/Campath of 3mg and
some pills. I know one of the pills was a steroid. Then we waited about a half
hour to make sure that I didn't react to the meds. I didn't have a reaction,
so we went back to the room.
One of our instructions is to take my temperature about 3 times a day and if
it goes to 38 degrees Celsius I have a medication to take and I need to call
the nurse. We went and bought a thermometer at the drugstore this afternoon
since I didn't bring one. Having the drugstore downstairs is so convenient!!
Friday came and went. We just went up to the Business lounge for breakfast.
Since it is Shabbat (What is Shabbat), none of the machines are turned on. So,
no espresso this morning! I was looking forward to oatmeal, but they don't use
electricity on Shabbat. The elevator is even different. it stops on every floor so
buttons don't have to be pushed.
Tomorrow is Sunday, the first day of the week in Israel. I will getting my
Campath the next two mornings and having my Bone marrow aspiration on
Tuesday afternoon along with starting on Fludarabin and Cytoxan.
The week ahead is going to be tough. But, it will all be worth it!!
Ashraf went over my meds again with us and he took the dressing off of my Picc
line and cleaned it up. He was very efficient and redressed it so it is much
more comfortable.
After the dressing change I received my shot of Lemtrada/Campath of 3mg and
some pills. I know one of the pills was a steroid. Then we waited about a half
hour to make sure that I didn't react to the meds. I didn't have a reaction,
so we went back to the room.
One of our instructions is to take my temperature about 3 times a day and if
it goes to 38 degrees Celsius I have a medication to take and I need to call
the nurse. We went and bought a thermometer at the drugstore this afternoon
since I didn't bring one. Having the drugstore downstairs is so convenient!!
Friday came and went. We just went up to the Business lounge for breakfast.
Since it is Shabbat (What is Shabbat), none of the machines are turned on. So,
no espresso this morning! I was looking forward to oatmeal, but they don't use
electricity on Shabbat. The elevator is even different. it stops on every floor so
buttons don't have to be pushed.
Tomorrow is Sunday, the first day of the week in Israel. I will getting my
Campath the next two mornings and having my Bone marrow aspiration on
Tuesday afternoon along with starting on Fludarabin and Cytoxan.
The week ahead is going to be tough. But, it will all be worth it!!
Thursday, April 30, 2015
The first couple of days
My first experience in the CTCI Clinic was interesting and good. I met the staff and
then had my first appointment with Professor Slavin. The staff is great! Very friendly
and welcoming. Prof. Slavin is very warm and a kind man.
The clinic is small. From what I can tell, Prof. Slavin's office, three treatment rooms,
one being the head nurse's office also, Ruth's office and waiting/reception room. I am
sure that I will learn much more about the clinic as the next few weeks go by and I will
add to the blog.
Prof. Slavin asked me lots of questions about the history of my MS. Such as exacerbation's
and the dates. It would be a good idea to have had these all written out to bring to the
appointment. These facts are in in my head though!
He did a through examination, checked all my lymph nodes and neurological functions.
The tests were very similar to what a neurologist does in the US. Prof. Slavin then got
out his camera and took a video of me doing some of the tests again and had me walk down
the hall and back to him.
I was given two choices in treatment. MSC and HSCT. I, of coarse chose HSCT! That is why
we are here! He would like me to have MSC after the HSCT, but it is much more expensive.
Today is Wednesday and I saw Dr. Nadir today, before I went with the nurse to a hospital
to have my Picc Line put in. He was all business and no smile. He examined me and listened
to my heart and lungs. I could tell by a couple of the questions he asked that he had gone
over my records very thoroughly. I am happy that I brought hard copies of my scans,
both MRI's and CT scans, so Dr. Nadir could look at the real scans for himself and not just
read the report from the radiologist that read them back home.
The Picc line is put in to your arm here. SEE PICC LINE PICTURE
I believe it is the only picc line that I will get.
It was placed by making a small incision in my arm above the bend in my elbow. Then the line
is inserted using live video/x-ray on a very high tech piece of machinery. This is a huge,
very modern x-ray machine that I am sure is used in the US for many procedures. One thing
that I did notice is that the Israeli hospitals don't have as much waste as in the US. They
used sterile drapes, but they were cloth that could be washed, they don't use alcohol wipes,
just alcohol in a bottle with cotton balls. All of the dressings for my pic line were the
same as the US though. In sterile wraps. The doctor and his assistants were very careful
about infection control, which I was very happy with. I don't feel that there is anything
to worry about here!
Friday, April 24, 2015
We are in Tel Aviv!!
We arrived safely in Tel Aviv. What a long flight! Bozeman, Montana to Denver, Colorado, Then on to Newark, New Jersey and our final leg, Tel Aviv Israel. The flight to Tel Aviv was 11 hours. Sleeping on the plane was close to impossible. Marilyn and I both had trouble getting comfortable and falling asleep.
Both of us have a little jet-lag this morning. Upon arriving at Ben Gurion International Airport, we had to get our passports stamped and a Visa was issued. After we got our luggage we looked everywhere for the taxi that was supposed to be there. We never found the taxi so we had to get our own.
Lesson #1 in Israel - Make sure the taxi driver turns on his meter. When we got to our hotel, The Vital, I tried to pay the driver with my credit card. He shook his head No. He said $172. I almost fainted! Marilyn knew that he meant Shekels! We settled on $50 US dollars. Yes, we are naive. When we mentioned this to the very nice girl at the front desk, she said, in a nice way, that we got ripped off. You MUST insist that the cab drivers turn on the meter!!
The Vital hotel is very nice. Our room is small, but comfortable. We have two twin beds and the bathroom does have a shower/tub. I was told that the room didn't have a shower, but that was incorrect. We have an electric tea kettle so boiling water for tea will be easy. We were cold last night, the air conditioner works very well so we'll be asking for extra blankets!The service here at the hotel is 5 star, we asked for blankets, they were brought almost immediately.
As you can see, our room is a little messy.
The breakfast that is included with our room is nothing short of amazing! Marilyn will be writing about it! She is the foodie! My favorite morning drink is Chai tea with honey and almond milk. So, the first thing we did last night was to buy almond milk and honey. I brought my tea bags in the suitcase. After seeing the breakfast, I didn't need to bring all those tea bags.
The big part of today was going on a free tour of Tel Aviv. First stop was the diamond headquarters, then to Jaffa. They drive very fast here and don't pay attention to the painted lines on the streets!
It is a little scary.
Marilyn just got back from working out at the gym that is included with our room. She said it is very nice and it has great classes and equipment.
The Business Lounge, which is also included with our room is great. I think we will
be visiting there everyday! Note the coffee/espresso machine and the treats! Marilyn is in
coffee heaven.
We explored the mall that is attached to the Vital hotel. It has a natural food store and we recognized many of the brands that they have, but we can't read a word! We ate at the coffee shop last night there and the sandwiches we had were very good. There are small clothing stores, electronic shops, a cell phone store and even a Toys-R-US in the Mall. We have not found a laundromat yet.
More to follow...........
Both of us have a little jet-lag this morning. Upon arriving at Ben Gurion International Airport, we had to get our passports stamped and a Visa was issued. After we got our luggage we looked everywhere for the taxi that was supposed to be there. We never found the taxi so we had to get our own.
Lesson #1 in Israel - Make sure the taxi driver turns on his meter. When we got to our hotel, The Vital, I tried to pay the driver with my credit card. He shook his head No. He said $172. I almost fainted! Marilyn knew that he meant Shekels! We settled on $50 US dollars. Yes, we are naive. When we mentioned this to the very nice girl at the front desk, she said, in a nice way, that we got ripped off. You MUST insist that the cab drivers turn on the meter!!
The Vital hotel is very nice. Our room is small, but comfortable. We have two twin beds and the bathroom does have a shower/tub. I was told that the room didn't have a shower, but that was incorrect. We have an electric tea kettle so boiling water for tea will be easy. We were cold last night, the air conditioner works very well so we'll be asking for extra blankets!The service here at the hotel is 5 star, we asked for blankets, they were brought almost immediately.
As you can see, our room is a little messy.
The breakfast that is included with our room is nothing short of amazing! Marilyn will be writing about it! She is the foodie! My favorite morning drink is Chai tea with honey and almond milk. So, the first thing we did last night was to buy almond milk and honey. I brought my tea bags in the suitcase. After seeing the breakfast, I didn't need to bring all those tea bags.
 |
| View from Breakfast |
The big part of today was going on a free tour of Tel Aviv. First stop was the diamond headquarters, then to Jaffa. They drive very fast here and don't pay attention to the painted lines on the streets!
It is a little scary.
Marilyn just got back from working out at the gym that is included with our room. She said it is very nice and it has great classes and equipment.
The Business Lounge, which is also included with our room is great. I think we will
be visiting there everyday! Note the coffee/espresso machine and the treats! Marilyn is in
coffee heaven.
We explored the mall that is attached to the Vital hotel. It has a natural food store and we recognized many of the brands that they have, but we can't read a word! We ate at the coffee shop last night there and the sandwiches we had were very good. There are small clothing stores, electronic shops, a cell phone store and even a Toys-R-US in the Mall. We have not found a laundromat yet.
More to follow...........
Sunday, April 19, 2015
HOPE
hope
hōp/
noun
- 1.a feeling of expectation and desire for a certain thing to happen."he looked through her belongings in the hope of coming across some information"
synonyms: aspiration, desire, wish, expectation, ambition, aim, goal, plan, design;More - 2.archaica feeling of trust.
verb
- 1.want something to happen or be the case."he's hoping for an offer of compensation"
synonyms: expect, anticipate, look for, be hopeful of, pin one's hopes on, want;More
I just Googled the definition of hope. I've had many people ask me why I would put myself through Chemo and go all the way to the other side of the Earth to do it. My answer is HOPE. It is such an amazing feeling to have hope for a change! So many things have happened to make going to Israel a possibility. I never dreamed that this treatment was possible. I thought that when my leg stopped working that I would be in a wheelchair someday. That still might happen, there are no guarantees that having HSCT will work, but the odds are amazing. My goal is to stop the MS, any symptoms that start to get better will be a bonus!
I also have hope for other people that have MS. My hope is that everyone that wants to have HSCT can have it. I want everyone to know that there is a treatment that can stop this disease.
As I am packing for Israel, I feel so very thankful for my husband, my parents, our two son's, friends that stand by me and many other things. Our youngest son's girlfriend, Brianna, cut my hair this week to get ready for Chemo. It is a little shocking, but so easy to get ready in the morning!
I also have hope for other people that have MS. My hope is that everyone that wants to have HSCT can have it. I want everyone to know that there is a treatment that can stop this disease.
As I am packing for Israel, I feel so very thankful for my husband, my parents, our two son's, friends that stand by me and many other things. Our youngest son's girlfriend, Brianna, cut my hair this week to get ready for Chemo. It is a little shocking, but so easy to get ready in the morning!
Friday, April 10, 2015
Countdown to lift-off: 12 days until we leave!
My test's are done. I need to go to the hospital and get all the hard copies and cd's, but the hard part is over. I am getting my packing list ready and a list for my amazing husband of all the things he will need to take over when I am in Israel.
My husband is my number one supporter! He will be taking care of everything while I have my HSCT. Not only will he be working, he will be taking care of my parents, 3 dogs, one cat, and all of the things that I do everyday. To top it off, he will have to take care of me when I get home!
I am so thankful for my husband and family!!
I'm blessed to have a very close friend, Marilyn, that is going with me to Israel. Marilyn is taking 6 weeks off work and putting her life on hold to take care of me during my treatment. Words can not express how thankful I am for her!!
Marilyn and I are members of P.E.O. At our meeting yesterday the woman surprised us with a going away gift!
As you can see in the picture, our gift has all of the necessary things for our plane ride! The chocolates are from La Chatelaine and the caramels are from Bequet Caramel. I am only pointing out where the candy is from because both of these candy company's are right here in Bozeman, Montana and we are very proud of our local businesses! I am predicting that the candy won't make it to Israel. It will probably be eaten before we even get to Newark. The women in our P.E.O chapter are very special friends and I am so thankful for each and every one of them!
My husband is my number one supporter! He will be taking care of everything while I have my HSCT. Not only will he be working, he will be taking care of my parents, 3 dogs, one cat, and all of the things that I do everyday. To top it off, he will have to take care of me when I get home!
I am so thankful for my husband and family!!
I'm blessed to have a very close friend, Marilyn, that is going with me to Israel. Marilyn is taking 6 weeks off work and putting her life on hold to take care of me during my treatment. Words can not express how thankful I am for her!!
Marilyn and I are members of P.E.O. At our meeting yesterday the woman surprised us with a going away gift!
As you can see in the picture, our gift has all of the necessary things for our plane ride! The chocolates are from La Chatelaine and the caramels are from Bequet Caramel. I am only pointing out where the candy is from because both of these candy company's are right here in Bozeman, Montana and we are very proud of our local businesses! I am predicting that the candy won't make it to Israel. It will probably be eaten before we even get to Newark. The women in our P.E.O chapter are very special friends and I am so thankful for each and every one of them!
Tuesday, April 7, 2015
Getting Ready to Go
There are many things to do when getting ready to travel to the other side of the globe. Finding the right clothes after checking the weather in Tel Aviv for the time of year, getting plane tickets, hotel reservations, making a to-do list for your husband because he is going to be home without me for 6 weeks with our oldest son, 3 dogs and a cat, etc... This is all getting done a little everyday. As I do one thing, there is something that I didn't think of that just pops up!
The big part of getting ready to go are all the medical test's that I have had to get done. Here is the list that Ruth sent me:
Total body CT (head, neck, chest
and abdomen)
MUGA- (Multi Gated Acquisition Scan)
Dental
assessment
Pulmonary function (profusion and
lung capacity )
ECG
Blood tests (This is a whole different list - they took about 10 huge vials of blood)
I had to have my neurologist order all of these. Yes, this is a very long list!! The total body CT was with and without contrast, so I had to have an IV put in. Thankfully I was able to have the MUGA after the CT so they didn't have to do another IV.
All of these test results will be emailed to Tel Aviv and then I will carry them with me on the plane. We leave on April 22nd. The clock is ticking....
Monday, April 6, 2015
We are going to Israel!!
As I said in a previous entry, I emailed application letters all over the world. I only received responses from Russia, Chicago and Israel. Russia put me on the list which is about a 2 year wait. I don't have 2 years to wait. Chicago asked me to come for an evaluation (that story will have to be in another post).
The email that I received from Israel came from Professor Slavin himself. It was probably a form email, but it sent me in the right direction! He said that he had forwarded my email to his assistant, Ruth and that she would be contacting me. I'm not one to follow directions, so I promptly emailed her! That was the start of more emails that I can count!
Ruth instructed me to email all of my previous MRI results I had to her. She sent me forms to fill out. I also had to get a new MRI and get those results in. I had the new MRI in January 2015. At this time, I thought that we had until late in the year to get ready for my trip to Israel. I was wrong about that!!
My husband and I went on a trip late in February. We drove down to Denver to see family and then stopped to see family and friends in Arizona and Nevada. This was a long road trip over about 2 weeks. I received an email from Ruth, Prof. Slavin's assistant in the middle of our trip. Prof. Slavin is the doctor in Tel Aviv Israel. The International Center for Cell Therapy & Cancer Immunotherapy (CTCI)
The gist of the email was this... They have had two dates open up and Ruth will accept the first people that respond. Needless to say, I responded immediately on my cell phone. I took the second date of April 26th, 2015. Having a real date for my HSCT was a very strange feeling.
I received more email from Ruth over the rest of our trip. Prof. Slavin wanted a video of me walking. My husband took a video of me walking in a parking lot in Las Vegas, we sent it. She needed me to get my neurologist or internist to order test's that I need before going. I made phone calls while my husband drove. We got home around February 20th. This didn't leave me with much time to get ready!
I am going to Israel to get a second chance!!
The email that I received from Israel came from Professor Slavin himself. It was probably a form email, but it sent me in the right direction! He said that he had forwarded my email to his assistant, Ruth and that she would be contacting me. I'm not one to follow directions, so I promptly emailed her! That was the start of more emails that I can count!
Ruth instructed me to email all of my previous MRI results I had to her. She sent me forms to fill out. I also had to get a new MRI and get those results in. I had the new MRI in January 2015. At this time, I thought that we had until late in the year to get ready for my trip to Israel. I was wrong about that!!
My husband and I went on a trip late in February. We drove down to Denver to see family and then stopped to see family and friends in Arizona and Nevada. This was a long road trip over about 2 weeks. I received an email from Ruth, Prof. Slavin's assistant in the middle of our trip. Prof. Slavin is the doctor in Tel Aviv Israel. The International Center for Cell Therapy & Cancer Immunotherapy (CTCI)
The gist of the email was this... They have had two dates open up and Ruth will accept the first people that respond. Needless to say, I responded immediately on my cell phone. I took the second date of April 26th, 2015. Having a real date for my HSCT was a very strange feeling.
I received more email from Ruth over the rest of our trip. Prof. Slavin wanted a video of me walking. My husband took a video of me walking in a parking lot in Las Vegas, we sent it. She needed me to get my neurologist or internist to order test's that I need before going. I made phone calls while my husband drove. We got home around February 20th. This didn't leave me with much time to get ready!
I am going to Israel to get a second chance!!
Kris's Non-scientific Definition of HSCT
After reading article after article with the definitions of Hematopoietic Stem Cell Transplantation (HSCT) I was overwhelmed. So, here is my definition. My definition might change as I go through it in a couple weeks!
In MS, the immune system attacks the nervous system. It thinks that the nerves are a disease and that it is protecting you. No one knows what made the immune system think that it should attack it's own body.
Stem cells are removed from the body through a port in the jugular vein, or the bone marrow from the hip. I believe this just depends on the doctor doing the procedure. After the stem cells are harvested they are frozen.
The next step is Chemo. From all of the blogs and webpages that I have read, it is not a walk in the park. I will lose all of my hair and get sick. I guess that I will need to go shopping for some cute hats! The Chemo wipes the immune system clean. Like when your computer has a virus. The hard-drive is erased.
After the immune system is wiped out, the brand new, clean, stem cells that were taken out before the Chemo, are put back in the body. I compare this to getting new software on your computer. The new stem cells will help rebuild the immune system.
The hope is that the new immune system will not attack the nervous system again. The odds are very good that HSCT works. It has worked on many people!!
In MS, the immune system attacks the nervous system. It thinks that the nerves are a disease and that it is protecting you. No one knows what made the immune system think that it should attack it's own body.
Stem cells are removed from the body through a port in the jugular vein, or the bone marrow from the hip. I believe this just depends on the doctor doing the procedure. After the stem cells are harvested they are frozen.
The next step is Chemo. From all of the blogs and webpages that I have read, it is not a walk in the park. I will lose all of my hair and get sick. I guess that I will need to go shopping for some cute hats! The Chemo wipes the immune system clean. Like when your computer has a virus. The hard-drive is erased.
After the immune system is wiped out, the brand new, clean, stem cells that were taken out before the Chemo, are put back in the body. I compare this to getting new software on your computer. The new stem cells will help rebuild the immune system.
The hope is that the new immune system will not attack the nervous system again. The odds are very good that HSCT works. It has worked on many people!!
For a much better, very scientific explanation of HSCT, I encourage you to read George Goss's blog: http://themscure.blogspot.com/2010/06/stem-cell-transplantation-reference.html
Thursday, April 2, 2015
The HSCT Article
So, I saw an article about Stem Cell transplants for MS. I know that I saw it online somewhere, but can't remember where! MS brain, you know :)
Anyone that knows me is aware that I read everything about every subject that I find interesting. So, this subject hit me full on. This article and the blog that it is on was amazing!!
http://themscure.blogspot.com/2011/06/getting-into-hsct-treatment-if-you-have.html
After reading the above article and everything else that is written on George Goss's blog, I had my start! I also joined an amazing Facebook group, Hematopioetic Stem Cell Transplant -
MS & Autoimmune Diseases.
This group has all the information in the File section that lead me to where I am headed. I ended up
asking a few questions in the Facebook group and the answer's that came back to me were very
inspiring. I met an amazing mom, Anne, that helped her son go to Russia last year for his transplant.
She was pushy at first and I am so thankful for her!! She said to get those application letters sent now!!Worry about the money later!! We FB messaged more than I ever have with anyone!
My letter's went out to Chicago, Israel, Germany, Russia, Sweden and Italy. I was on my way!
Little did I know that it wouldn't be that easy!!
Anyone that knows me is aware that I read everything about every subject that I find interesting. So, this subject hit me full on. This article and the blog that it is on was amazing!!
http://themscure.blogspot.com/2011/06/getting-into-hsct-treatment-if-you-have.html
After reading the above article and everything else that is written on George Goss's blog, I had my start! I also joined an amazing Facebook group, Hematopioetic Stem Cell Transplant -
MS & Autoimmune Diseases.
This group has all the information in the File section that lead me to where I am headed. I ended up
asking a few questions in the Facebook group and the answer's that came back to me were very
inspiring. I met an amazing mom, Anne, that helped her son go to Russia last year for his transplant.
She was pushy at first and I am so thankful for her!! She said to get those application letters sent now!!Worry about the money later!! We FB messaged more than I ever have with anyone!
My letter's went out to Chicago, Israel, Germany, Russia, Sweden and Italy. I was on my way!
Little did I know that it wouldn't be that easy!!
How I got here
Since this is my first blog post, I thought I better tell you how I got here!
My MS started the Fall of 1991 about 7 months after our first son was born. I had a horrible case of ON, Optic Neuritis. The pain was worse than childbirth. A wonderful neurologist saw me and was kind enough, or I guess smart enough to not diagnose MS at that point. Because of his diagnosis, I wasn't banned from getting health or life insurance.
Life went along very well, a little stressful, for 10 years. We had our 2nd son, built a house, started a business and spent time with our family and friends. The dreaded monster came back though with a roar and teeth. The first symptom was numb hands, This happened after we had gone for a bike ride so I thought that holding the handle bars caused it. The numbness lasted about a day and went away. The next day my feet started getting numb and tingly. At this point, I thought about what that wonderful neurologist said 10 years before. As the numbness started climbing up both of my legs and finally stopped at my waist I knew that the monster had come back and it wasn't going away.
I saw a neuro in our town that was horrible. She just told me that I had MS, didn't offer any help and sent me home. Thankfully I had scheduled a second opinion for a couple of weeks after that appointment. My Mom and Dad were driving me to Billings on September 11, 2001 to see another dr. when we heard on the radio about the Trade Centers in NYC. I'll never forget that day.
I finally got my 'official' dx on 09/11/01. The new doctor knew what he was doing and sent me home that day for a week of IV steroids. I had not been able to feel anything for weeks from the waist down, or should I say the feet up? You could have stabbed me in the thigh with a knife and I wouldn't have felt a thing. The steroids started working quickly and my feeling came back.
This was the start of my journey to get HSCT. I didn't know it at the time, but everything over the last 13 years has been a rollercoaster. First they put me on Avonex. I did that one two times for a little over a year each time. Then Copaxone twice for a a couple years each. My latest epic fail was Tecfidera.
I have also tried all of the MS diets, been gluten and dairy free, etc... all the while my right leg has gotten worse. Foot drop is not fun, falling in my kitchen sucks, having no balance makes me look drunk.
That is the short version of how I got here. The final straw was when my neurologist said he would call in a prescription for a wheelchair.
My first hope was when I saw an article about Stem cell transplants for MS.
My MS started the Fall of 1991 about 7 months after our first son was born. I had a horrible case of ON, Optic Neuritis. The pain was worse than childbirth. A wonderful neurologist saw me and was kind enough, or I guess smart enough to not diagnose MS at that point. Because of his diagnosis, I wasn't banned from getting health or life insurance.
Life went along very well, a little stressful, for 10 years. We had our 2nd son, built a house, started a business and spent time with our family and friends. The dreaded monster came back though with a roar and teeth. The first symptom was numb hands, This happened after we had gone for a bike ride so I thought that holding the handle bars caused it. The numbness lasted about a day and went away. The next day my feet started getting numb and tingly. At this point, I thought about what that wonderful neurologist said 10 years before. As the numbness started climbing up both of my legs and finally stopped at my waist I knew that the monster had come back and it wasn't going away.
I saw a neuro in our town that was horrible. She just told me that I had MS, didn't offer any help and sent me home. Thankfully I had scheduled a second opinion for a couple of weeks after that appointment. My Mom and Dad were driving me to Billings on September 11, 2001 to see another dr. when we heard on the radio about the Trade Centers in NYC. I'll never forget that day.
I finally got my 'official' dx on 09/11/01. The new doctor knew what he was doing and sent me home that day for a week of IV steroids. I had not been able to feel anything for weeks from the waist down, or should I say the feet up? You could have stabbed me in the thigh with a knife and I wouldn't have felt a thing. The steroids started working quickly and my feeling came back.
This was the start of my journey to get HSCT. I didn't know it at the time, but everything over the last 13 years has been a rollercoaster. First they put me on Avonex. I did that one two times for a little over a year each time. Then Copaxone twice for a a couple years each. My latest epic fail was Tecfidera.
I have also tried all of the MS diets, been gluten and dairy free, etc... all the while my right leg has gotten worse. Foot drop is not fun, falling in my kitchen sucks, having no balance makes me look drunk.
That is the short version of how I got here. The final straw was when my neurologist said he would call in a prescription for a wheelchair.
My first hope was when I saw an article about Stem cell transplants for MS.
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