Joanne’s MS Blog

Hello again everyone…….Joanne laughs as she says” Brian has a sore mouth”. Oh yes I replied and it is very aggrevating can’t you tell……. We are just competing to see who is going to go through more pain the mrs. or me.

     Actually this little story goes back to last week when I bit into a piece of pork and there happened to be a small bone inside, I heard a crunch ,hoping it was the bone, and a sharp pain followed. After a short period of time it went away but would return when I would drink something cold or hot the pain would return. This I could tolerate thinking it would get better over time, but when I woke this morning and had my morning coffee it would not go away. I called Lucy our interpreter and off to the dentist I went to find out I needed a root canal , Oh Joy! I thought I was good before I left as I was at the dentist before coming to China. The dentist’s area reminds me of the old dental health clinics where you can view all the patients and the dentist’s working on them. The x-ray was done in a small booth about 3 feet square and lead lined. Beside the dentists chair was the old style sink where you rinse and spit …..I was a little nervous. However everything worked out good and the procedure cost only $30 canadian dollars, not bad , and the anti-biotics cost about $2.50 .

     Moving into this afternoon (I write this blog as I go and save it so I don’t lose everything I type because it has happened before more than once , so I am learning), Joanne received her first umbilical stemcells and said she felt the needle this time around.  Now the worst part for her , lying on her back for 6 hours this helps to reduce the side effects , headaches, mostly. We are both praying that these little stemcells will do their job and start repairing the damage done by the MS. Only time will tell for sure ………. 5 more stemcell injections to go and 25 days left. We are hanging in there til the end. Bye for now and have a great monday!!!

Good Morning Everyone ….Well it is Sunday morning here and by the time I connect to the internet it will probably be Sunday morning in Canada the greatest country on earth. Joanne and I sure miss the home we talk about it a fair bit wondering what family and friends are doing. The weather this morning is fogging, smogging, and wet, so I don’t think I will take Joanne out today. Yesterday was great with the sun shining no wind (of course a little smog ) so we spent a long time taking a stroll through the park which is beside the hospital. I will try to include some pictures with the blog (maybe not this entry but soon) as I know it can be done I just have to figure it out.  The park right now is has no foliage , but it must be beautiful in the spring and summer. There are always groups of people doing Tia Chi people playing strange musical instruments kids flying kites etc. Ther is a river that runs through the park and a paving stone path that winds along the edge connecting to old concrete bridges. Huge boulders are placed by the waters edge for people to sit and relax or do some fishing. It is truly beautiful.

     On the night of March 28^th  Joanne and I and many of the foreign patients and families went to our neighbors next door to us to celebrate Mike’s Birthday ,he is 22 years young .  It was good to share the event with everyone . Stephan is Mike’s caregiver from back in the USA had a beautiful cake made for him and a flower arrangement brought in (the flower arrangements here are gorgeous ,very colorful like nothing I have seen back home) by a young lady manager at a night club here that Stephan had visited the night before. Mike had a car accident back home and had a spinal injury (C5) and will be receiving the same amount of stemcells as Joanne. Unfortunately when they did a MRI it showed a cyst and he had an operation 3 days before his birthday to remove it before they proceed with the stemcell treatments. The surgery went good for him with no complications , he is just laid up for about 10 more days extra.

     Well bye for now, and if everything with the internet goes good today I might make another entry tonight with pictures I hope.

Hi again fom China !!! the internet continues to plague us , very poor connection and sudden disconnection. First the rough night,as Joanne just could not get comfortable and kept me up most of the night. The morning began as usual with physio and then a nap for me after dinner and then physio again. Carol Joanne’s caregiver ,Joanne and I took another stroll through the park as I photographed our excursion. This was very nice and relaxing , the weather was great and sunny and warm. Joanne enjoyed it very much and so did I as we broke the hospital boredom.

     Monday at 4pm Joanne will receive an umbilical stemcell injection into her spinal column.  This will be the first of six umilical stemcell injections into he spine and we are hoping to see more improvements. This is a short entry tonight as I am a little fatigued and running out of energy and patience with this internet connection , please forgive me, but will keep on trucking tomorrow .  Tomorrow is a free day with nothing going on , so Jo and I will wing it and see what kind of trouble we can get into.  Bye for now……

Hi everyone well here I will try this late entry blog. I am having such a miserable time with this internet thing , it drives me crazy! This will be the second time in 4 hours that I will re-write this entry because when I go to post it after I am done typing it out I lose the entry because the internet loses connection. What’s up with this #&*% thing.

     Joanne said she is feeling stronger and I have to say she is looking better too. No complications after the injection 2 days ago and she was back in therapy the next morning. I did not take her out yesterday because the weather was cold and raining and I don’t won’t her to get ill as some patients have colds and if they develope fevers they will not receive their stemcells. However today is bright and sunny and we plan on walking to wal-mart for some fresh air(with a little smog) and do a little shopping along the way.

     Yesterday was really an experience , as I took a taxi to wal-mart and videoed the driving . The driving was one experience and as I entered the store the security alarm went off as I passed those detectors that one sees by the doors in most department stores. Two chinese security guys come over ….of course I don’t know what they are saying and they are pointing at my coat. So I empty my pockets and open my camera bag , as everyone stops to look, then this  american fellow calls to me and the chinese security let’s me in the store. Now I am thinking this white american that speaks english works for wal-mart and is going to ask me few questions or take me in the back room and do a search ( I know what some of you are thinking … the old rubber glove search).As it turns out he thought I maybe in trouble and came over to assist me. I asked him why security stopped searching me and he said I looked likeI probably had too much money to be shoplifting . He invites me to have a little tea with him and his wife in this side shop inside wal-mart, so I agreed ( I was a bit scrambled and took him up on his offer. He introduces me to his wife and he tells me he works for Toro (lawnmower guys) as an engineer and has been to China on 12 different occasions. He asks why I am here and so I tell him about Joanne and staying in the Hospital and they offer all kinds of advice , gives me phone #’s , tells me to call a friend in China that can help arrange a better flight back home etc.  His wife is chinese and offers to send family to the hospital to assist us if we need help in any way. These 2 individuals must be the kindest people in China. From what was a total shock at one point turn out to have a very happy ending.

    Bye for now ………and by the way when I left the store the security devices didn’t go off go figure!

Joanne received her bone marrow stemcells into her spine at 4pm our time today or 2am saskatchewan time. It went very well ,Joanne said there was  no pain.  In the procedure room Joanne said there was a lot of muttering in Chinese as the doctors were having a tough time giving her the injection, it was supposed to take about 20 min. but she was in there for 45 min. She however just hates lying still in bed , 4 hours before I can put a pillow under her head or roll her around ,then 2 more additional hours before she can sit up. This is very , very tough on her as she likes to moved on a more steady basis. She is now 2 1/2 hours post procedure and is getting anxious. Lucky I have voldka. LOL!!! Today was alittle strange because we fi nd the chinese so prompt with there appointments and were told lastnight that Joanne would be going for the injection at 8:30am ,but we waited until 4pm. Something must have come up for the doctor. I tried to amuse Joanne by having Carol teach us to speak chinese and I teach her English . It was like the first day at sign language class, and a lot of miss pronounciation of words. We did get Skyped by Jamie and Jason and Sheri ,always good to talk to people back home , however I am still having those internet problems. I take the lap top sometimes walk around the hospital like a guy on the beach with a metal detector. I get alot of strange looks ( I just smile and say nee how…..this means hello) If Joanne is up to it tomorrow and the weather is good I will take her outside for a bit , perhaps a little shopping ,she would like that …….  Bye for now.

Before I start today’s blog I just have to say thanks to everyone for all the positive emails and comments incredible ….it touches our hearts so much and lifts our spirits. Jana if you are reading this thanks for article in the leaderpost you have generated such a great response thank you!

     Can’t believe I am looking forward to see Joanne get a needle stuck in her spine how painful does that sound …the truth is it isn’t that bad ….so we have heard ….YIKES! The bone marrow extraction wasn’t bad at all Joanne said ,and everyone is saying the spinal injection is fairly painless , but there maybe headaches after, so Joanne must lay on her back for six hours to help keep the headaches to a minimum. I will stay with her and keep her comfortable and amused, after all I am a clown at heart. Today Joanne sent me to Wal-mart to buy a radio so she could listen to news weather etc. ….and I said it is all Chinese but she was sure there was an English station on the air….I gave in took a quick trip to Wal-mart and grabbed a radio , brought it back ,searched the stations …..all Chinese ….women are not always right!  LOL!!! Bye for now >>>>>>!!!!

Hello again from behind the bamboo curtain. It’s funny that without all the advertising how a person can forget about certain celebrations like Easter. That is such a lame excuse but that is the only one I have , it is hard to believe I forgot about Easter. It isn’t celebrated here and no one talked about it , maybe our minds are on other things as well. Joanne and I hope everyone had a good Easter with family and friends and please except our belated Easter greetings.

     Joanne wants to ask that if no one can understand english would you also be frustrated. It does get frustrating because finding Lucy or Tony our interpreters isn’t always as quick as you would like. This happened today as I ventured outside to an electronic store and Joanne was being cared for by Carol her personal caregiver who speaks little to no english. Apparently what  Joanne  needed wasn’t written down on the english to chinese instructions I had written out for Carol. I went to this huge and I mean huge electronic store , 5 floors , each floor about the size of  Zellers at nortgate mall and nothing but electonics. I had no problem getting there by taxi but unfortunately getting back was another story. There were 6 cabs waiting outside the store and I showed each driver my note with the hospital address and each driver refused to give me a ride.So I walked about a mile in snowy cold weather ( yesterday was beautiful today it’s cold and snowing …sounds familiar doesn’t it,) Anyways I finally stop this taxi and this guy gives me a ride after we pick up a couple of other people along the way and he is muttering in chinese …sounding kinda pissed off ( don’t know for sure but I finally make it back to the hospital and when I see Lucy she says taxi drivers between 5 and 6 o’clock go back to home base and don’t want to give a ride ( I don’t know about that they were just sitting there and smoking). Needless to say I was wondering when I would make it back because I didn’t know how to get back or what direction to go in. I was gone for a total of about 2 hours and then Joanne tells me how frustrated she was because Carol didn’t understand english and she couldn’t communicate her needs. What an end to what should have been a routine day. I need to plan a bit better in the future.

    Joanne and I want to continue to thank everyone for leaving comments on her blog it makes us both feel closer to home. Take care and love you’s all.

Hi everyone  well today is Sunday a day where there is no therapy etc. in other words you get a day pass out of hospital jail.LOL!!!  George a friend we made from Biggar Saskatchewan convinced us to take a trip to ocean world(similar to sea world) biggest in Asia we are told. A fun time was had by all and I was so happy that Joanne could make the tour. There was 13 of us in the group Joanne and Mike were both in wheel chairs and the entire group sqeezed into a mid sized van (only in China ) They put on a great show with seals ,sea lions , dolphins etc. There were under water tunnels made of glass where all the fish swam around and above you ….very cool! The entire trip with a steak dinner and transportation and admission was only $22.oo canadian per person (not bad).

     Tomorrow begins a new week of therapies and Joannes bone marrow being re-injected back into her on March 26. So far I have noticed that Joanne’s limbs are not as stiff ,I would give this progress credit to the physio and possibly acupucture. It has only been a short time with 5 weeks to go but it is a positive start. Oh by the way the weather the last couple of days has been fairly warm in the upper teens, not to bad for outside activities.

     That is it for today, it has been fun and tiring at the same time, will be back tomorrow. Until then don’t touch that dial and stay tuned for more adventures from China with Joanne and Brian.

P.S. Joanne says for a city with 7 million people you would think there would be more english speaking people …..(but I said we only have met maybe 30 of them LOL!!!!!!)

Hi there everyone , like the title says internet up and internet down, I had just finished writing in the blog went to save it and bingo the f%#king internet goes down and I lose the posting. Sometimes it pays to stay in bed and just roll over. Jamie left and flew back to Regina yesterday morning at 9:30AM and we started to miss her at 9:30:01AM. Jamie we can’t thank you enough for all the help and company you gave mom and I, and I just wanted to say the short trip we had to the Imperial Palace and the shopping malls was very special for me THANKS!

     Yesterday Joanne received her first stemcells by IV injection, and the procedure took about 20 minutes. The nurse would check periodocally through out the rest of the day to see if Joanne had any reaction but she was fine. Sheri Woytiuk and her daughter Jenn from Regina shared the experience with us through Skype on the internet. Technology is pretty cool! Joanne will receive the rest of the stemcells through her spine over the course of the next 5 weeks.

     Joanne and I had another sleepless night because she just can’t get comfortable and there was some noise next door and in the hall outside our room. We both need better drugs.LOL!! We want to thank Mark and Margo Oliver for leaving us a hot plate pots and pans cooking utensils ,more oatmeal than we know what to do with, towels ,and electrical converters. It was too bad that we could not have met in person as we missed them by only 2 days. Margo has MS and was receiving stemcells at the same hospital Joanne and I are in. Joanne says she loved reading your blog Margo and says Mark has a great sense of humour.

     Thanks everyone for commenting on Joanne’s blog we enjoy it very much …keep them coming. Good-bye for now and may the internet spirit be with us all.

Mom had her bone marrow extracted today. She had to lay flat and still for 4 hours afterwards. On March 26th, the doctors plan to give her the bone marrow transplant (where they put it back in after they cultivate it). Mom said the extraction was uncomfortable and a little painful. When I asked her if it hurt, she said “according to who?” which just confirms how tough a woman she is. Her legs have been spasming a lot today and that has been causing her a lot of discomfort. I asked her if she wants to send a message to everyone and she replied “me no speaka english”. But seriously, she added that the hospital shuts down completely at night and they lock the doors and elevators, so you have to be on your floor before 9pm.

Dad and I went out today. We were able to visit the Imperial Palace…very cool! We also went shopping (a personal favorite of mine). We both got some great deals. It was actually hilarious to barter with the people, I know the secret…..just pretend that you don’t want it anymore and they will usually give in. We also saw a Dairy Queen and bought mom a ice cream cake. Not the same as in Canada…they put a strawberry filling with the cookie crumbs. Mom and I didn’t like it as much, but dad seemed to like it a lot.

I am leaving tomorrow to come back to Canada. It will be hard to leave mom and dad, but I know it will be okay. So the future blogs will be coming from dad, and of course, mom.

Thanks everyone for the comments and keep them coming. Also HAPPY BIRTHDAY JESS!! Sorry we missed your birthday.

Mom is getting her first stem cell treatment tomorrow (the 21st). Think positive everyone!!!!!!!

Take care