DAY 10 – GETTING TOUGHER

My spinal treatment went very well and there was definitely no need for drugs. They use a separate operating room for lumbar injections and on stem cell days there is sometimes a traffic jam in the hall with beds waiting to enter. Once the stem cells show up things move rather quickly around here. I was wheeled into my surgical room, rolled onto my side, bent my knees up to my stomach and I was ready to go. There were two nurses and a doctor in the room and of course I couldn’t see what was going on behind me. One nurse injected a syringe into my IV and said it was medicine to prevent infection and I could feel them swab an area on my spine near my tailbone and gently massage up and down that area of my spine. I could hear the sound of medical instrument s clanging and the nurse leaned over me to say I’d feel a small prick where she’d be administering a local anaesthetic. I thought I could feel something being inserted into my back but couldn’t be sure as they carried on quietly working behind me. I felt an itch on my upper arm and reached to scratch it with my opposite hand and the nurse barked at me “please do not move”. I suppose that’s when I realized they were injecting the stem cells into my spine and within another 5 minutes it was all over. It seemed like the whole procedure from start to finish was no longer than 15 minutes!
Next they were telling me to roll over to my back and to shift myself up towards the end of the bed. I found it funny because I was somewhat concerned about moving around but the nurse was pulling my shirt from bunching up as I shimmied my way up the mattress and she commented “you so tall”. I’m sure not used to hearing that comment. Just like that I was done and they were wheeling me back into my room with instructions to lie flat on my back and not to lift my head. I could turn onto either side and even use a pillow if I was lying on my side but not if I was on my back. I would have to follow these rules for the next 6 hours which is where I found the problem. I’ve had a bad back for months and lying on that bed immobilized for the next 6 hours was painful and very difficult. I was okay for the first three hours and actually got some sleep but the last three were torture on me. I’ll be trying out some new coping strategies for my next treatment on Friday.
Other than the discomfort of lying in bed for those last three hours I made out very well. No pain at the injection site and no headache, two of the more common problems that they tend to worry about. I’m not worried about the rest of my spinal treatments but I’m not looking forward to the bone marrow procedure. When they harvest the bone marrow from me it is more of a surgical procedure and when I have this done I must lie in bed for 24 hours! I don’t know how I’m going to cope with that one.
I still haven’t felt any differently from the stem cells; in fact I’ve felt more tired the last two days. My physical therapy sessions have become much more difficult to the point where I feel I’m not progressing but going backwards. I’ve found myself becoming quite frustrated and getting upset. I think I’m just played out and I never did have a great deal of patience. I’m not alone in feeling this way as other patients are experiencing similar circumstances but we really work at encouraging one another. It probably doesn’t help matters that it’s been quite warm the last few days. In fact today was hot in our rooms and everyone was complaining about it. Unfortunately today was the day the hospital decided to turn off the air conditioning for the year! Apparently it’s fall now and therefore getting cooler and no need for air conditioning. I guess they can have Indian summers in China too! We do have fans in our rooms and hopefully it won’t stay warm out for long. If it stays hot the head nurse is going to request that the air be turned back on. Just another day in China stem cells, only 20 more to go!

LC

DAY 9 – HAPPY THANKSGIVING

I haven’t blogged for a few days now because we were out of the hospital. As mentioned I had the last three days off without any treatments so TK and I thought we’d get out of the hospital setting. There is a 5 star hotel located less than 2 km from the hospital; I can see it from my window so we decided to experience some luxury while we could. Patients from the hospital, well at least foreign patients in the stem cell program get a 50% discount which ended up costing less than a night at the Strathmore Travelodge! It really was a beautiful hotel; we actually got 6 TV channels: World CNN, HBO, Discovery, National Geographic, ESPN and another movie channel. Here at the hospital we only get one English speaking channel and it is a Chinese version of CNN that is almost painful to watch.
There were variety restaurants as well; we chose sushi on Friday and Italian on Saturday. Well the challenging food experience continued for me, this was not a regular sushi restaurant that I’m used to at home. TK who’s been to Japan and knows a lot more about sushi than I thought it was quite good. I couldn’t get a dynamite roll or some of my other favourites but the sashimi was really good! Italian was a different story. First off the only had two pasta dishes on the menu, some other western choices and quite a few steaks to choose from. TK had crab pasta in a cream cheese sauce and I ordered a T-bone steak. Having seen their beef in the supermarkets I was a little sceptical but thought at such a nice hotel it would be somewhat normal. WRONG!! TK’s pasta wasn’t very good but my steak was a different story. It was a T-bone and had the bone in to prove it but it was without a word of a lie maybe 3/8” thick! I knew something was off when the waitress asked me what kind of sauce I’d like with my steak. I’m thinking sauce?? My choices were cheese, wine or pepper sauce; I chose pepper which was the best part of the meal. The steak was not very flavourful or tender to say the least, oh how I miss Alberta Beef! Oh well I give them full credit for trying.
On Sunday we took an adventure to West Lake which is a huge lake in Hangzhou and a large tourist attraction. It was very beautiful and we got to experience some real Chinese culture. We went with Linda and Leah, 2 other MS patients, Leah’s daughter in-law and Linda’s daughter. It is quite difficult sightseeing with all 3 of us in wheelchairs but we did alright. At least I can stand and walk which makes it much easier on me and TK, pee breaks are pretty challenging for the others. We did have a chance to enjoy a Starbucks coffee! After West Lake we went to an outdoor Chinese market which was quite an experience. There were all kinds of artisans, jewellery, a shop for everything and it was totally packed. I bought a knife, well a clever actually but nothing else. The merchants at this market were not into dickering on price much and there are apparently much better markets you can bargain a lot more. It really was an interesting and fun day; thank God we had our Chinese drivers from the hospital to guide us through everything!
I have to say that the most enjoyable part of the day for me was driving around. We learned how large Hangzhou is, it’s huge! We saw a lot of different culture and a lot of American culture too. Starbucks, Pizza Hut, Dairy Queen, The Disney Store, The Ferrari Store, Haagen-Dazs, Toys R Us, the Rolex Store, Hooters and so much more, I was really surprised! But like I said, the driving was the best part. We took three separate vehicles and I was having a hoot but I know all of the other women were petrified! It is absolutely crazy, not only the drivers but pedestrians as well! I’m very surprised we didn’t have an accident, see an accident or witness someone getting run over! I’m going to have to take the video camera out next time so everyone can at least get glimpse of an idea what it’s like.
It is now Monday morning, Thanksgiving Day but there’ll be no turkey here so I hope everyone is enjoying their dinner back home. We would go out for dinner with some other patients but my daily routine is about to start and I’ll be receiving my first spinal treatment at 11:00. When it’s over I’ll have to lie on my side and can’t lift my head for 6 hours so guess that’s my day. I’ll let you know how it went tomorrow.
LC

DAY 5 – A HAPPY DAY

I didn’t feel any different after my first stem cell treatment as I wrote in yesterday’s blog and I felt the same today as well. As I’ve stated many times I try not to have expectations but outside of halting progression of the disease, any improvements would be a bonus. When I awoke this morning I straightened my legs, pointed my tows out, extended my arms back and had a huge stretch! I’ve written before how I can’t do this in the morning without having painful spasms in my legs and my stretch is normally accompanied by a loud grunt and never satisfying or comfortable. Not today!!! I had the most amazing stretch, something I haven’t experienced in I can’t remember how long! I don’t even consciously remember doing it until I’d finished and realized how awesome it felt! One of those simple little pleasures that are so easy to take for granted started my day off with the hugest smile.
This was a very similar result that Linda experienced that I had written shouldn’t be expected and especially not that fast. Well God answered that prayer for me. I guess the stem cells are very effective for spasticity. Anyway I didn’t feel any different the rest of the day but I can’t wait for tomorrow morning to see if it lasts.
The rest of my day was pretty typical with my regular routine and I didn’t really feel any different. It was a very warm day though and amazingly we could see blue sky! TK and I went for a long walk to a beautiful park and to buy some groceries. Well I should say TK had a long walk and I had a long ride in the wheelchair. When we left the hospital TK joked that she only had her learners permit for pushing a wheelchair. She wasn’t joking! We were just strolling along taking pictures and enjoying the beauty of the park when all of a sudden we came across a 5” drop off a curb and my wheelchair tipped forward throwing me out! I wasn’t hurt at all and we actually had a good laugh while some Chinese onlookers seemed quite amused.
Her driving didn’t get any safer as we went through the busy market. I guess Chinese people are used to having to get out of the way fast and avoid collisions in a very busy and chaotic environment as I previously explained how the streets are. It’s pretty crazy but you know what they say: “when in Rome, do as the Romans do”. I’m sure we’ll have many more exciting adventures to come.
LC

DAY 4 -- AN HISTORIC DAY FOR ME

I received my first stem cell transplant today! It was a very busy morning with my regular regimen as discussed in yesterday’s blog. Physical therapy was very tiring on me, pretty much the same routine as yesterday but more intense. Some of the other patients were commenting on how the therapists really push them hard but I’m used to working out and pushing myself to the limit so I make it easy for Andy. My standing treatment followed right behind physio and increased to 30 minutes today so I was really looking forward to getting back to my room and flopping down on my bed for a rest. I did this but within a few minutes Andy was back in my room to start acupuncture! That treatment was stepped up a notch today as well; I had 7 needles in each leg and 6 into my head! The needles had to stay in for 30 minutes today and needless to say I couldn’t really move around much on my bed with all those needles sticking out of me. TK said I reminded her of the guy from Hellraiser. After my acupuncture session we were going to have lunch, we ordered McDonalds to be delivered. As soon as we put our order in the nurse came to get me for my stem cell treatment meaning our food was going to be cold. Oh well, the stem cells would be worth it even considering how bad cold McDonalds can be.
Fifteen million stem cells were infused into my blood stream which took about an hour. There was nothing to it, just the insertion of the IV! I haven’t felt any different thus far but we’ll see if I can notice anything over the next few days. I haven’t been given a schedule for next week but I think my next treatment will be Monday or Wednesday and will be quite a bit more involved than todays. Most people have been put under for the lumbar puncture treatment and it is performed in a separate operating room. I think I am going to stay awake for my first one and just go with local anaesthetic. I would like to be awake to see the whole experience but may change that for my second treatment. You must stay immobilized for 6 hours after the treatment and it takes 3 hours to come to so that makes it much easier to make it through the whole 6 hours without moving around much or lifting your head. The three other women that I know who have undergone the procedure think I’m crazy but we’ll see how it goes.
I have to keep the IV needle inserted in my hand until tomorrow morning as a safety precaution in the event I have an adverse reaction or something and they need to medicate me. This is very unlikely but they are very careful, the nurse takes my temperature and pulse every few hours and I have to keep my door open tonight as the nurse needs to check on me every two hours. I really don’t feel any different but to air on the side of caution is a good thing!
LC

DAY 3 -- THINGS ARE LOOKING GOOD

Today was my first day receiving treatment. It began with electrical wave therapy which involved strapping an electrode to my thigh and another one to my lower calf on each leg. A brief electrical impulse was generated by each electrode that repeated every two or three seconds that caused each foot to involuntarily twitch. This process lasted for 20 minutes which I assume was meant to stimulate my muscles.
The next session was physical therapy that lasted just over an hour and I was quite exhausted by the end of it. The focus of this session was mainly working on my balance and retraining my feet how to walk. With weights strapped onto both ankles I was walking, going up and down stairs, balancing on a wobble board and all the while not permitted to use my cane! I actually surprised myself at how well I performed. My therapist Andy speaks very limited English but we managed to communicate quite well. I know that a month of this therapy will be extremely beneficial to me.
Next up was what they refer to as standing treatment. I had to stand on a platform angled at approximately 30˚ with my torso strapped upright so I couldn’t fall back for 30 minutes. I’m not really sure what the purpose of this was but I really believe they know what they’re doing.
Acupuncture finished up my morning which only lasted for 20 minutes. Lying on my back, five needles were inserted into each leg. One in the side of my thigh, one at my knee, two in my calf and one on the top of my foot. Inserted is perhaps too pleasant a description, jabbed sounds more accurate! The needles seemed much larger and it actually hurt which is not what I’ve experienced in the more gentle twisting motion of acupuncture performed in North America. The Chinese came up with this treatment centuries ago so who am I to question their technique.
That pretty much wrapped up my treatment for the morning and I was finished by noon. It appears as though this will be my morning regimen for each day of the week except Sundays. This week is going to be different however because I have Friday, Saturday and Sunday completely free. I was given my schedule today and tomorrow I will receive my first stem cell treatment which will be given intravenously. I spoke with the doctor today and he informed me that the rest of my treatments will be given by lumbar puncture and injected directly into my spinal canal which I am very happy about.
I also talked with several other patients today and heard of some amazing results. Torie a quadriplegic who is from Arkansas is in China for her second stem cell treatment. After her first trip one year ago in July she has regained feeling in her upper body and can use her arms! She was in a car accident 27 years ago which resulted in spinal cord injuries leaving her a quadriplegic. She no longer uses a power wheel chair because she can manually navigate a regular wheelchair! I have seen the staff here have her standing with leg braces on, it is truly a miracle!
Another patient named Linda who is from Okotoks and also has MS just recently had her first stem cell treatment. Some people may have seen her on CTV news before she left for China. She suffered from spasticity so bad that her legs could not even be forced to bend at the knees, she had no feeling in her lower legs and her feet were always ice cold and blue from poor circulation. One day after her first treatment the color had fully returned and her feet were warm! She can lift her leg and bend it up to her face without assistance, she is absolutely jubilant! Not everyone will see this kind of success and so fast but it sure is encouraging. I can only hope and pray for similar results but having seen this all with my own eyes is AMAZING!!!!
LC

DAY TWO

Day two was a day of preparing to get set up for my daily routine. I was told to buzz for the nurse as soon as I woke up so she could come draw blood for some tests. I also had to give a urine and stool sample for additional tests. Oh Yeah!! A nurse comes in about 3 times a day to take my temperature and pulse, which are apparently always perfect. My doctor visited me again but this time walked in with an entourage of about 10 others. It was kind of strange, I don’t know if they were residents or what. It’s still somewhat difficult to communicate but I think I may have my first stem cell treatment tomorrow.
I was also given a physical therapy assessment today which was basically testing my leg strength and flexibility so they can come up with a routine for me. I’ve been through several physical therapy programs in the past but none of them are even similar to what I’ll be going through here. They are really focused on working on my strength and balance and I’ve been told it can be somewhat of a gruelling routine. If I’m not doing physical therapy then I’ll be receiving acupuncture treatment. I will receive a schedule for my daily routines tomorrow.
TK has gone to the big store to pick up some groceries and supplies; I think she will try to start cooking tonight. She is a great cook but the kitchen facilities are somewhat limited. The store is huge, a Chinese Wal-Mart of sorts and sells everything from clothing to food. All of the typical traditional Chinese weird stuff included like chicken heads and snakes! One of the patient coordinators named Rebecca (everyone on this floor has chosen a Western type of name) told me a story today about one of the physical therapists on the floor. While walking home last night he saw that someone had found a turtle and bought it, not for a pet but to eat! There is definitely a culture clash on many levels here. I’ll always be looking forward to see what tomorrow brings!
LC

HELLO CHINA!

We finally arrived in China October 5^th at approximately 11 am, what a trip! Our plane left from LAX at 11:45pm October 3^rd destined for Hong Kong. W-Five was at the airport to film TK and I starting off on our journey so we tried to exploit the situation by attempting to get upgraded to business class given the national media exposure created for Cathay Pacific but is was sold out. Too bad because even though I thought Cathay was a good airline, the seats in economy were not very comfortable! The flight to Hong Kong was over 14 hours which seemed much longer! We left in the dark Friday night and didn’t see the light of day until Sunday morning due to the change in time zones! We had a 2 hour layover before boarding another plane for Hangzhou at 7am when the sun was finally coming up. I think I only had about 4 hours sleep as a result of my aching butt and lower back, stiff legs and other problematic MS symptoms but I was able to take in 3 movies! The next leg of the trip was much shorter and we arrived in Hangzhou at 9:30 to be greeted by a driver from the hospital and a translator. After a 40 minute drive we were in the hospital and checking out our room for the next 30 days!

The stem cell treatment centre is located on the 20^th floor of the hospital and our room overlooks the city of nearly 4 million people. Looking out our window we see a very diverse cityscape of 30+ story buildings, 3 story dilapidated apartment complexes, an inner city garden plot taking up approximately 10 square blocks and a river canal system meandering through the entire area. It’s all very interesting and unique! It is about 20⁰ Celsius, humid and very hazy outside. Apparently they don’t really get to see blue sky, the moon or stars here.

For the rest of our first day we toured around the facility, met some staff and patients, I was examined by a doctor and basically just got settled in. TK and I took a ride on a 3 wheel cart which is like a chariot towed by bicycle or moped about 3 blocks to a large department store looking for a restaurant...what an experience! You really take your life in your hands on these streets, it’s crazy! Other than the 20^th floor of the hospital, you don’t see any other Caucasians and no one speaks English. We finally found the restaurant and managed to order some food, it wasn’t easy but kind of fun. Everyone was looking at us, smiling and laughing. I guess it was quite a unique site to see a big breasted blonde woman being tailed by another blonde gimped up guy hobbling around on a cane. Turned out to be quite an adventure for our first day!

LC