Wednesday, December 17, 2008
After having explained these new concerns there is good news to express as well. The vibrations that I feel in my hips and legs that have plagued me for the longest time have been rarely noticeable. My bladder control seems to have improved so I can hold my urine much longer and I typically only have to get up once in the night. Athletic therapy is going well and my therapist does see improvement week to week. I still have a difficult time motivating myself to perform my exercises on a daily basis but I am seeing progress. I see my therapist once a week and she typically gives me six or seven exercises to do every day until I see her the following week when she will assess my development and come up with a new routine. The goal is to isolate certain muscles and movements to perform properly so that when I do start working out I won't have different muscle groups fighting against each other like they do now with simple tasks like walking up stairs. It is a slow process but one that will be very valuable in the end. Unfortunately my insurance company doesn't see the value and does not cover athletic therapy which is ridiculous and something I now have to fight them on.
My acupuncture therapy also seems to be going very well, I still go twice per week and Dr. Tse is very optimistic that he'll be able to help me. At the end of each acupuncture session he has me lie on my stomach to perform what he calls suction cup treatment. In this process he rubs olive oil along my entire spine and uses a lighter to extract the air from a small glass jar creating a suction affect which he then slides up and down my spine. The entire procedure only lasts about 30 seconds but he is adamant that it is very important. He would like to see this method applied to my spine every day but this is easier said than done since it requires the help of another person. As I don't have a girlfriend to help, this only leaves my roommate Rob and I don't think either one of us are very comfortable with situations like this. Not that it's that big a deal but it's kind of like getting a back rub from another guy which is a little awkward and definitely less enjoyable. The bigger problem is that Dr. Tse has to train the other person how to do it properly meaning we would have to meet in his office located in Calgary and this is not possible. I suggested we could videotape it but he didn't think that would work so I'll just go without that procedure on a daily basis which he agrees is okay. The reason why he is optimistic about helping me is because he performed a test where he inserts a needle into the back of my calf until I can feel it hit a nerve. The fact that I can feel this nerve is a very good sign as most people with MS that he has treated are not able to. Dr.Tse has also taken a keen interest in stem cell transplants and will be phoning Dr. Jack in China to learn more and discuss my case.
It is still much too early to determine whether the stem cell treatments have been successful and you know what they say, “Patience is a virtue”. While I can't explain why I haven't been feeling great or why new symptoms have been creeping in I remain optimistic and committed to all of my rehabilitation efforts. I know one thing, the subzero temperatures that we've been experiencing don't help matters! On a cheerier note, at least we'll have a white Christmas this year which is always nice for my siblings returning home from California. I'm looking forward to a very nice Christmas; I'll have my whole family together this year. This is also my year to have my children for Christmas and I will have them for at least 10 days over the holidays. Christmas morning just isn't the same without children so I’ve even invited my ex to join my family for the kids Santa Claus surprise and gift opening. Hopefully this won't be too awkward, I have forgiven and made amends long-ago for my children's sake but I'm not too sure how the situation will play out for my brother and sister. In the spirit of the season and in particular this wonderful day celebrating the birth of Jesus Christ, I'm sure everything will be peaceful and friendly.
I WISH EVERYONE A VERY MERRY CHRISTMAS AND A HAPPY, HEALTHY NEW YEAR!
Monday, December 1, 2008
I've previously written about the different mindset behind the physical therapy that I experienced in China compared with the therapy that I’ve received at home. In the hospital the treatment goal was to improve my walking and balance abilities with the belief that they could return to normal. I thought it would be very difficult to find this type of attitude and treatment at home but I found it. My therapist is known as an athletic therapist and rehabilitation specialist. Athletic therapy analyzes the essential elements of each movement and identifies problems that need correction. Improper movements and imbalance lead to muscle compensations in other areas of the body which eventually result in poorer performance and increased difficulty with many movements such as walking and climbing stairs. I was especially encouraged by my new therapist when she told me about another client of hers who’d been to China for stem cell transplants. This client was a quadriplegic who had regained the use of his upper body which is a huge motivator and reinforces the idea that improvements are possible and realistic.
When Andy, my therapist in China, would correct my body from cheating while walking or going up stairs the action would virtually become impossible. My body has forgotten how to properly perform certain movements after years of naturally compensating for certain difficulties like rotating my hips and pelvis or straightening my leg for stability. Andy could always see where my difficulties originated from but he couldn't explain it to me. My new therapist can also identify these difficulties however she can explain to me in simple terms what my body is doing wrong, why it's doing it wrong and what needs to be done to correct it. During my first assessment the therapist viewed me walking, sitting, standing, lifting a leg and all kinds of basic movements and postures. The reasoning behind why I do or can't do certain movements is very logical and the corrections needed sound rather simple. I was aware that I had to strengthen certain muscle groups like my hamstrings and glutes but completely unaware of the other muscles that require strengthening. The main muscles required to perform certain tasks referred to as your mobilizer muscles are obvious but your stabilizing muscles are just as important. Apparently many of my stabilizer muscles have gone to sleep leading to the awkward way that I compensate for them in many movements.
Waking up and retraining these muscles does not require going to the gym, it is much simpler than that. For example some of the exercises I must do are squeezing my left or right butt cheek and holding for three seconds, a tummy squeeze for 30 seconds as if I’m holding back urine or squeezing a ball between my knees. I would find it easier if I could go to the gym to work out rather than completing these exercises. Even though these exercises might sound very undemanding, I have problems with them. For example I find it difficult to isolate and flex my right bum cheek and tasks as straightforward as standing straight while shifting my body weight from one foot to the other and lifting the opposite foot are very challenging. In order to do this last exercise properly I have to lift one leg by bending my knee keeping my weight on my heels with my core tight and hips level without any rotating or tilting of my hip bones. A very large part of these exercises is learning self awareness and any deviation from proper form is so subtle that it’s very hard to recognize.
I’ve now had two sessions with this therapist whom I’m supposed to see once a week and work on the exercises myself the rest of the week. Self motivation is not easy with this training, like I said I have a hard time with some of it and it’s difficult to see the results! It is much easier for me to go to the gym or to my basement and workout. I must keep at it though and stay committed because I do believe the benefits will come!
I have now started up with acupuncture as well. I had my third treatment today and will be on a schedule of twice a week for the first four weeks and then moving to once a week. My acupuncturist is from China and was trained there but he does speak English pretty well. As I suspected this treatment was much tamer than what I had in China. The needles are much smaller and the procedure is much gentler than my previous experience. Dr. Tse also uses electrical stimulation by attaching electrodes to the needles which is not new but wasn’t done by my acupuncturist in China. The process is much more relaxing here where the needles remain in me for 40 to 60 minutes and I find myself very relaxed and even dozing off occasionally. Dr. Tse can also explain to me what he’s trying to achieve by placing needles in different areas of my body. Some of the goals are to increase my energy and stimulate the nerve endings in my feet and establish a connection between my brain and different areas of my legs and feet. It makes sense for now but I don’t know how I’ll judge if I’m receiving any benefits from this.
For now I’m following recommendations of the hospital which are to continue with physical therapy and acupuncture and do not smoke or drink alcohol. These recommendations require a lot of commitment on my part and significant changes to my lifestyle and daily routine. Well I’ve been through a lot to go to China for this treatment so I figure working hard for improvements for the next five months is something I have to do in order to achieve the best possible outcome for myself. I know it won’t be easy but I have to stay positive and keep the hope alive.
Wednesday, November 26, 2008
The final destination on our long journey… Hong Kong. I think we saved the best for last, I really enjoyed this city. Even though I thought Shanghai was amazing, I definitely found Hong Kong to be more enjoyable and impressive. I did expect to find a very large city but I had no idea what to expect in terms of its climate or geography. It actually reminded me more of a tropical destination similar to Hawaii with its vegetation and mountainous terrain. Of course it doesn't have the same ocean exposure and huge beaches but I found the topography to be very similar. The city is very densely populated characterized by high-rises everywhere yet there is an enormous amount of open space and parkland. The entire size of Hong Kong is approximately 1/5 the size of the greater Calgary area but has a population of 7 million compared to 1.2 million! It seems that everything there has to be taller and bigger including its buildings, roadway systems, public transportation and its port.
It almost felt like we were back in America, you can get almost anything in terms of food, English was spoken everywhere and being Caucasian now seemed ordinary. Our first night there we went to Ruth Chris’s and had an amazing steak dinner, the next evening TK’s friend who lives in Hong Kong took us out for a great Italian dinner, we had an excellent Indian meal for lunch the following day (a very spicy chicken vindaloo…mmm) and for our last dinner we enjoyed a good ole juicy cheese burger wit h fries and onion rings! We were so happy to get such good and familiar food; maybe this is why I enjoyed Hong Kong so much.
We had to pack a lot of sightseeing in over the span of two days. Driving to our hotel from the airport we noticed a gondola ride that traveled across ocean inlets and up-and-down mountainsides to a large Buddhist statue. We decided to make this the first excursion and had planned on taking the subway. We had to walk about four blocks from our hotel to the subway station and we finally had a beautiful day. Once we found the subway station I realized that we would have to walk down several flights of stairs which I could've done but it's quite a pain taking the wheelchair down. Before I could even get out of my wheelchair someone had stopped to say we can take a lift down and called for a subway worker who appeared in less than a minute. There was a wheelchair lift that travels along the hand rail of the staircase which I'd seen before but never used. It’s not nearly as convenient as an elevator but it was kind of neat to use. They are very accommodating to the disabled in Hong Kong. Other than the Soho district I found everything very accessible and people, not just employees, were very helpful. Once we figured out how to buy our subway pass and where we were going, things were very easy.
The subway system was phenomenal, you can pretty much take it anywhere and the different lines had a simple layout and were easy to understand. The subway cars and stations were beautiful; everything looked so new and clean. You're not permitted to eat or drink on the subway and there wasn't a bit of graffiti anywhere. The subway lines are not interrupted by roadways anywhere which is a good thing because these things fly! The subway runs parallel to the highway traveling from the airport where the speed limit is 110 km but the subway races past cars as if they were standing still. The gondola ride was located adjacent to the airport which was about a 45 minute drive from our hotel yet the subway only took about 25 minutes. The gondola was similar to those I've seen at ski resorts but it was much higher when traveling over the water. A foot path follows the gondola line all the way up these mountainsides for those who are foolish enough to take it, we saw several tourists walking that looked as if they were dying from exhaustion and they hadn't even made it half way! At the top there was the Buddhist statue perched on the mountain peak, a temple, a cobblestone street lined with shops and several walking paths. It was all very unique but the gondola ride was the real attraction!
Later that afternoon we headed to the Soho district where the longest escalator in the world is located. This is a very hilly section of Hong Kong made up of trendy shops, restaurants and bars. I'm guessing the escalator which traveled up the hill through the middle of the district must’ve been at least one km long. The escalator is not continuous; it stops and starts at cross streets which made for a very interesting ride on my wheelchair! We managed just fine and avoided any mishaps or accidents. The Soho district is very old with extremely narrow streets and even narrower sidewalks making it the only place I found that wasn't wheelchair friendly. We stopped at a couple of pubs and met up with TK’s friend for dinner, a very interesting day.
Our second day started off by taking the Star ferry across the harbor which is apparently a famous “must do” for tourists. Then we took a tram ride up to the Peak which is a viewing spot on the top of a mountain overlooking the entire city and harbor. It was a beautiful spot with an amazing view and housed several gift shops and restaurants. We had our excellent Indian lunch at a very nice place that had an old English tavern feel to it then took a cab back down to the bottom. The cab ride down was on an extremely narrow and winding street that reminded me of Lombard Street in San Francisco. Next we took a two hour harbor cruise that basically showcased all of Hong Kong and the port. The loading docks are truly amazing; you can't even fathom the size and complexity of this operation. It’s difficult to find anything these days without a made in China tag on it and all of those products are shipped from here. We could not even come close to capturing the magnitude of this harbor or the city skyline with the photos we took.
The rest of the afternoon was spent touring around the water front waiting for our evening cruise on the AQUALUNA. This was a very cool boat that booked evening cruises to take in the night sky line and light show that lit up the skyscrapers on both sides of the harbor and beamed lights back and forth across the water. The night skyline was beautiful but the light show wasn't too spectacular, it could've used some fireworks. That wrapped up our day of sightseeing and we took a cab back to our hotel.
Another interesting part of Hong Kong is that you don't need a car. The streets are mainly made up of taxicabs and there's never a problem finding a cab. Taxi rides are not at all expensive like they are at home and to travel any greater distance you just take the subway including a trip to the airport. You can take the subway from anywhere and transfer to the express airport line and check your baggage right at the subway station, unless you're taking an international flight. Public transit is so convenient compared to home; you would never consider taking public transit to and from the airport!
For as technologically advanced as things seem to appear in Hong Kong, I'm still surprised at how backwards they are in some areas. I've worked in commercial and multifamily construction for many years so I’m very familiar with safety codes and regulations which is why I was shocked at some of the construction practices here. I was not surprised to see construction safety hazards in China but I thought Hong Kong would be different. They tend to scaffold the entire exterior of a building under construction including high-rises however their idea of scaffolding is vastly different from North America. You can see from my pictures that they use bamboo rather than metal scaffolds regardless of the height! They don't even use steel connectors and use what appears to be nylon strapping to tie off the sections. In China it was rare to see hard hats and the use of fall protection such as safety lanyards etc. Watching that 10 story building go up while in the hospital I actually saw workers taking a nap on this sketchy scaffold platform from 8 stories up! Canadian Workers Comp. and OHS inspectors would freak but just like driving, it seems there are no rules and anything goes!!
That concluded my adventures in China, quite an amazing experience! Now I can only hope and pray that I’ll see amazing results in my health. I know that I have to be patient and that it is typical for the stem cells to take up to 6 months to generate any improvements so time will tell. I will continue to update my blog so I hope people will continue to follow it!
Thursday, November 20, 2008
Today marks one week since I've been back in North America and I know that some of my blog followers are disappointed that I haven't had any new posts. I've been very excited about the positive response I've had to my blog and with the amount of people that have been following it. I've been told by many that reading my blog had become part of their daily routine and how disappointed they were when I would miss a day. I would like to keep up with my blogging, but it will be difficult without having a central theme to focus on like my MS. I've enjoyed writing and it would be really nice if I could make some money doing this. Something I'll think about but in the meantime I will finish up with my experience in Shanghai and Hong Kong and of course I will post updates on any changes or improvements I experience. Hopefully there will still be people logging on to read!
Unfortunately the rain kept up for our second day but it did not deter us from getting out to find some shopping. We had heard that Shanghai is the place to shop and where you'll find the best deals so we headed off to Nanjing Road, China's premier shopping street. We had hired Mr. Lee one of the hospital drivers to take us to Shanghai and he stayed around to be our driver and interpreter even though he wasn’t very good at English. It was a beautiful shopping district and much of the mall we visited was made up of marble road and walkways. It was also made up of many high end stores but this was not the shopping we were after. Being obvious tourist targets it didn't take long to be nabbed by an enterprising Chinese woman who was very eager to be our shopping guide. What is not obvious from the upscale shopping mall are the hundreds of small shops that exist in the small alleyways located directly off the mall. This is the kind of shopping we were looking for, the kind of vendors that sell knock off watches, purses and clothing for extremely cheap prices and then allow you to barter down even further. It was amazing to see all of these little shops existing no more than a few hundred feet away from legitimate stores selling the genuine merchandise!
Our eager shopping guide knew these alleys like the back of her hand and if we didn't find something in one shop she just led us to another. They were definitely not easy to spot or legal as we found out by being delayed in entering one when the police were nearby. Some of the shops were incredible having secret rooms and to enter a wall would spin around revealing several more rooms filled with imitation articles. The experience was very interesting and a lot of fun even though it was raining! Bargaining down prices became an art once we understood how everything worked. We bought some watches, wallets and Chinese artifacts and our Chinese guide seemed very happy, she must get a kick back from these shops. It was extremely valuable to have Mr. Lee accompany us, he would pipe up and argue loudly in Chinese on our behalf and vendors treated us more fairly because we had a Chinese friend with us. It was also very helpful having our own personal chauffeur and someone to push my wheelchair.
That night we went out to an Italian restaurant for dinner which was our first taste of Western style food in five weeks! It was a very good meal but the odd part was that there wasn't any pasta on the menu so our Italian craving didn’t really get satisfied. It was a very beautiful restaurant with a rooftop patio overlooking the Huangpu River that would've had an awesome view of the Shanghai skyline had it not been raining and overcast! By the next morning the rain finally stopped. It was still overcast but the temperature was warmer and the visibility much better so we decided to do some sightseeing. Shanghai really is an amazing city in terms of its buildings and architecture. It has many skyscrapers and the design of its buildings are the most unique I've ever seen. Their use of shapes and different contours in the architecture create a very modern and interesting look. I have not traveled extensively but from what I've seen on TV, movies or magazines; Shanghai would make any downtown in the world look boring. We tried to capture some of this look in photos but didn't really do it justice. The Shanghai World Financial Center is the second tallest building in the world standing at 492 m with 100 floors. It does boast the tallest observatory in the world at 100 floors up; let me tell you that is scary when you're looking down through a glass floor! There are some other tall buildings around 80 stories but the SWFC dwarfs everything and it is extremely modern. We were on the ground floor waiting for the elevator which only has one set of doors to go up to the observatory and when the next elevator came there were too many people for us to fit. I thought to myself waiting for the next elevator will take a while if it has to go up 100 floors when about five seconds later the doors opened to an empty elevator! Somehow they have several elevators going up and down simultaneously that must be on separate tracks because they all end up at a single entry and exit point. The elevator ride in itself was an experience. It had kind of a psychedelic effect with its lighting and sounds, felt like you were in some kind of spaceship. I didn't time it but I'm sure it took less than 30 seconds to reach the top! Everything about this building was ultra modern, even the bathrooms. I've included a picture because they were so cool. The toilet seats were heated, there was a control panel next to the toilet seat that allowed you to wash your rear end or front side with heated water and you could control the oscillation and pressure! You could basically give yourself an enema if you wanted and the only need for toilet paper was to dry off.
This city totally fascinated me; with a population of over 14.6 million it is absolutely huge. I really only saw the central part of the city but that was enough. It had a completely different feel than Hangzhou. Hangzhou is deep China, what some refer to as the real China where you don't see white people and we felt like celebrities with everyone gawking at us. When we hit Shanghai I felt like we lost our celebrity status as there were quite a few Caucasians. I suppose this city is much more of a travel and business destination and it made me feel like we were getting a little closer to home. I'm very glad that I decided to experience more of China than just the hospital and Hangzhou. It will give me a much broader understanding of the country and its people and create some memories other than just those of the hospital.
Thursday, November 13, 2008
We had a great time the last week of our journey in Shanghai and Hong Kong but I’ll blog about that another time, today’s blog is dedicated to my sister. This trip was a very long time to pull her away from her life in San Diego, her new puppy and especially her newlywed husband! It truly was a loving sacrifice she made for me and I can’t thank her enough. I don’t know how I would’ve been able to go if she hadn’t been able to come with me. From the first conversation I had with her about wanting to go to China she’s been behind me. I don’t even recall having to ask her to come with me, I think she offered to come right from the get go! I really couldn’t have asked for a better travel companion or caregiver, she was totally awesome in the hospital, I think I’m the only one who received any sort of home cooked meals! Sometimes when TK would cook the entire hospital floor would fill with tantalizing aromas which I’m sure caused some envy and she was very well known for how well she fed me! Even though we were both entirely fed up with the food situation after over 30 days in that hospital it would’ve been so much worse had I not had chef TK!
As far as a brother sister relationship goes TK and I have always been close and our bond has grown even deeper as a result of this trip. We lived together for a while in Vancouver, were in Australia with each other at the same time and toured New Zealand together so I knew we would be compatible on this trip. I don’t think we had one argument or nasty exchange of words the entire time in China which is more than I can say about pretty much anyone else on the 20th floor of that hospital! My appreciation of her extends well past the cooking and help she provided but for the companionship we shared. I’m a good loser which is a good thing since she beat me in every backgammon tournament and crib game we played, although I still hold on to the premise that she’s the queen of fluke!
I have much to thank TK for outside of accompanying me to China, her help from the very beginning of my endeavour has been invaluable. Outside of the content, her and Bob set up my website and she did all the computer work for my fundraising posters and advertising. In terms of raising money, the emails she sent out to her network of friends which is pretty much around the world generated more financial and emotional support than any other group of individuals. This in itself is a great testament to the quality of her character and the great group of friends she has assembled where ever she has been!
You are truly a fabulous woman Terri-Kim, I know that Bob feels this way and I’m fortunate that he let you leave him for such a long time on my account! I’m very proud to have you as my sister and friend, I love you so much!!!
Friday, November 7, 2008
He scrambled and pulled everything together within half an hour. I sat down with Luca and Dr. Jack to go over my MRI which they had prepared on an x-ray type of film along with the diagnostic report. I’m still impressed with how fast they got all of this done so Dr. Jack began explaining in detail referring to my MRI scan where he saw the problem originating from. I had a slightly herniated disc at L5 – S1. That is lower on my spine and the doctor believed this to be from a pre existing condition due to my abnormal posture and gate. He showed me on the scan that none of my lumbar punctures were even close to this area and the reason it was now causing me problems is that this disc was pushed in restricting the free flow of the stem cells causing inflammation and pain. He did give a more technical analysis of the situation but in layman terms this is what was happening. Since my pain had subsided the medication they were giving was successful in reducing the swelling and over the next few days the natural course of self healing should take control and I shouldn’t need further medication. I was very relieved to hear this explanation and excited to be hitting the road to Shanghai.
We spent the next little while saying good bye to the staff who we had adopted as family over the last month and the other patients. We had prepared a nice gift basket for the staff consisting mainly of different kinds of teas and various snacks. This was an original idea for them and they were very appreciative. I had also written up a personal thank you incorporating a picture of TK and I that we had printed and mounted in a nice picture frame. I was really quite pleased with the originality of our parting gifts as the usual gifts and thank you offerings are very repetitive. I was so happy to be leaving yet sad to say farewell to all of our new friends. I truly think the world of the staff that took such exceptional care of us all for thirty days!
It was now 11:30 am and time to hit the road, unfortunately in the pouring rain again! The CTV camera man was back at the hospital for one last shot as we were packing up our luggage and heading out. We made it to Shanghai in 2 hours but once in the city it took us just as long to get through traffic and find our hotel! I thought Hangzhou was big but it was nothing compared to this enormous metropolis! We actually didn’t run out of urban sprawl the entire drive to Shanghai. I suppose with over 1.3 billion people there’s not a lot of open and unoccupied space. The crazy driving didn’t change at all; in fact it is worse in this city especially with the amount of traffic! We are staying in the Bund district and after checking into our hotel we travelled to the Bund fabric market where you can get suits, shirts, dresses and pretty much anything made in the fabric and style of your choice for extremely reasonable prices. TK got a dress, 2 shirts, a coat and I got a shirt which we will return to pick up on Sunday. Three day turnaround time for custom tailoring is pretty amazing! We’ll hit some more markets and do more shopping tomorrow; I just hope it stops raining! It feels so good to be out of the hospital and feeling better, I can start enjoying myself again! Stay tuned for more exciting adventures coming your way from China!
Wednesday, November 5, 2008
I had my Day 29 and 30 blog complete several days ago but could only post it November 5th because I couldn’t access the Blogger.com website for some reason. I could get to any other website I wanted but not this one so I began to wonder if I had written something bad and the Chinese government was blocking me from it. After getting some IT help from brother in law Bob I changed some settings and rebooted my computer and finally it worked. I don’t know what the problem was or why it occurred, just another technical frustration and it wasn’t over yet. After rebooting I was able to access Blogger.com but I still couldn’t post anything because I was only getting Chinese and had no idea what to click on to add to my blog. Frustrated to say the least but finally I got the English language page but I don’t even know how so finally onto day 31.
The pain in my tailbone continues to bother me and thus my physio therapy was cancelled again. It seems as though I’ve only been able to do the physio part of my treatment for half my stay here which is really too bad because I believe it is very important to my overall improvement and healing. When I return home I’ll definitely keep up with the routine I’ve started here and adapt it to focus more on strength building. I think what I’ll be looking for is more of a personal trainer with a physio therapy background. I don’t know if I’ll be able to find this person in Strathmore but I’m sure the right trainer is out there.
Rather than do physio I was going for another session of Andy’s vibrating heat pad followed up with acupuncture. When Andy came into my room and saw me grimace with pain he changed his normal acupuncture routine to focus on my back instead. He had me lie on my stomach and stuck 6 needles in my back and 4 in the back of each leg. I didn’t actually make it through the half hour that I was supposed to because I had to make an urgent bathroom break so I wasn’t sure if it helped or not. I still felt pain throughout the afternoon so I was given an injection to stop the pain. The injection to my butt really worked and provided relief into the evening. TK made spaghetti with shrimp for dinner and that pretty much finished off our food supply which was good because we had planned on eating out on Tuesday for our last night.
The night went pretty well and I had a good night’s sleep but awoke with the same old pain. I took some pain killers and got ready for my final day, what a joyous thought! I wanted to ask the doctor some questions and see if they would provide me with pain medication to make it through the rest of my trip. Dr. Jack said that would be fine but as we started discussing my back problem more he thought he should bring Dr. Mike into the conversation. I think they were both surprised that I was still having this much pain and difficulty when Dr. Mike came up with a new theory on my situation. He now believed that the stem cells were causing some sort of chemical reaction which was the source of my problem so he wanted to try a new medication. He also wanted to have a new doctor look at me who is a pain specialist. The result of his new idea meant staying in the hospital a few more days. I’m sure he could see the reaction of shock and dismay on my face. He was really quite serious about his recommendation to stay so I agreed to one more day and we’d see how things went.
This turn of events totally took the wind out of my sails and I was feeling quite perturbed. Shortly after this the CTV camera man showed up so explained the situation to him and that I’d try to keep my aggravation hidden. At least it was finally sunny so we had a beautiful day for shooting the interview and I don’t think I came across as grumpy although I was!
We had planned on going out for dinner on our final night so Johnny took us to what is supposed to be a very good restaurant, Chinese of course. I was already grouchy and going to this restaurant didn’t help matters. It was a very nice place and when you entered there was someone to greet you and walk you through what was similar to a buffet display of their main dishes and fresh fish, basically a virtual live menu. They serve snake and you actually walk by the snake enclosure and choose which one you would like to eat. I was just not in the mood for trying anything different and everything looked so unappetizing. It’s very difficult viewing and choosing food from a wheelchair, I couldn’t stop thinking how much I missed my scooter and a regular Canadian restaurant! At any rate I didn’t enjoy my dinner but it was still nice to go out with Johnny.
When we returned to the hospital it was getting quite late and I was quite tired so I had my medication injected into my butt and went to sleep. I was able to get another good sleep and woke up feeling pretty good but not pain free. Dr. Jack and Luca came to take me to the second floor around 10 am to see the pain specialist. He examined me pushing and applying pressure to various areas of my back and spine while conversing with Dr. Jack and Luca learning the details and history of my problems. He did reassure me that my pain and discomfort would go away yet he was going to have an MRI done just to make sure they had a full understanding of everything that was going on. He told me that they would be giving me a new medication by injection this evening and sent me next door for a new treatment. I was told to lie on my stomach so again I couldn’t see what was going on but according to TK two patches were placed on my lower back with wires attached and a separate bag that appeared to be filled with small stones was placed on top. This was also an electrical stimulation treatment that produced a tingling sensation and felt like a small colony of ants running around on my back. Then the technician placed a patch on my tailbone that heated up and actually felt like I had a heating pad on my back the rest of the day.
I finished up my interview with CTV at about 1 pm and felt good the rest of the afternoon. At 4 pm Luca and a nurse showed up to take me down for my MRI. This MRI was no different than any others I’ve had in Canada except they didn’t provide any ear protection. If you’ve ever had an MRI you know those machines make some pretty weird noises and get very loud. I’ll find out the results tomorrow morning but I fully expect to be leaving the hospital tomorrow. If continued treatment is just a matter of taking a new medication that I’ve already had 4 doses of then I don’t need to remain in the hospital but Dr. Jack will be in with his recommendation tomorrow morning.
I did find it impressive to receive such attention and so quickly! The waiting list to receive an MRI in Canada can be months and you would never expect to get the results the same or next day. Now I can just hope and pray that everything is good and I’ll be on my way to Shanghai tomorrow.
On day 30 I awoke to another overcast and rainy morning, I’m really getting tired of this weather. I’ve written how tired I am of this sore back too and guess what; it’s still here as well. I needed a break from the hospital so bad that the weather wasn’t going to stop me from getting out! We had booked Mr. Chen to drive us to the pearl factory which is located in another city about 1 hour away. Johnny came with us since he had never been there was very interested in helping TK out with interpreting. TK makes her own jewellery and was interested in grabbing some good deals on pearls and other supplies so Johnny wanted to make sure he could help her out.
We arrived to a HUGE complex that was very clean and elaborate that housed many different jewellery companies, all specializing in pearls of course. It turns out that this building housed the wholesale and retail outlets and not the actual pearl factories. There must have been at least 100 companies located here and I don’t know how they can all stay in business. Very little differentiated one from another except some were much larger and upscale but they were all selling pearls. The factories are located all around the wholesale complex but we didn’t see any which was too bad as we would have wanted a tour through one. We did get a bit of an education on pearls, how they’re cultivated and quality criteria. It was absolutely amazing how many pearls there were!! Apparently this place is one of two pearl centers in China and must be one of the worlds largest.
I’ll admit I had no idea what the value of pearls are, especially quality pearls and what we had found was an incredible bargain buyers paradise. We questioned many vendors on whether their pearls were fake and I don’t believe you’ll come across very much that isn’t authentic. One vendor held a lighter under a pearl to show us that if it doesn’t melt, it’s not fake. The price range varied drastically depending on quality but TK left with a large quantity and variety of very unique pearls and traditional pearls for less than $150 US dollars! I’ve included a picture of her stash, she’s pretty excited. Too bad I don’t have a woman in my life to buy for at the moment, she would’ve been very happy but I don’t buy on speculation.
I’ve also included a photo TK shot while driving into the pearl factory and there were piles upon piles of what appeared to be garbage or broken bricks and stones along the road and surrounding areas. Mr. Chen’s car has a dark tint on his windows and with the grey sky and rain it was difficult to really make out what this was but as it turns out they were empty oyster shells! Tons and tons of them that just get dumped and left for locals to pick through. I’m still not sure whether they were digging around for missed pearls or for oysters but they were all over regardless of the weather.
It was great to get out of the hospital for a day but it seems I’m paying the consequences. The 2 hours of driving and 3 hours sitting in my wheelchair really aggravated my back, UGHHH! It’s frustrating and not looking good for the rest of my stay in China, I can only hope and pray that things will get better.
Friday, October 31, 2008
My lower back was already hurting lying there in my bed and I knew that the six hour recovery time was going to be terrible so for the first time I asked to be drugged before the procedure. Since I was already feeling the lower back pain I just wanted to be sure I had pain killers available for later or that I could get something to sleep through most of it. It was somewhat difficult to explain what I was after but they did give me valium through my intravenous wrist tube which was still a very slow injection but it was not painful this time. The nurse repositioned me on my bed and got me ready in the hall, I was wheeled into the transplant room and the procedure began. The valium was making me groggy but did not put me out and I actually felt more during this procedure than any other. For the first time the nurse came to my side to rub my hand telling me to relax and sleep as she saw me wince in pain a few times. Everything was over in usual time but today the nurse and doctor had to assist me in rolling onto my back again when they were finished because they thought I might have been too out of it. I returned to my room and actually slept for about the first two hours. The rest of the afternoon was rough as usual with the same old uncomfortable pains and bladder problems but eventually five o’clock finally came and everything was now over! YEE HAH!!
Everything would’ve seemed so smooth had I not encountered the problems I was forced to endure this last week. It’s too bad because I haven’t heard of anyone else going through that much trouble but I guess in the end it just added to my overall experience. The rest of the evening went well with no head or leg aches’ so I was very happy and again had a full nights rest. My tailbone continues to be sore but I think this will alleviate itself over the next few days. I don’t have any treatments planned for the weekend but at least I won’t have to spend it in bed trapped in my room. Unfortunately it is very overcast and hazy again but I’m sure we’ll find something to do. My physio therapy and acupuncture treatments will begin again on Monday and Tuesday for my final days here at the hospital. W-Five is now scheduled to do their filming on Tuesday and Wednesday morning which will then end our adventure in Hangzhou. This doesn’t necessarily mean the end of my blogging but we’ll see what happens.
Thursday, October 30, 2008
Growing up in Calgary I’ve had my share of slips to the butt on ice and know very well that cracked tailbone feeling and that’s exactly what it felt like. So I buzz the nurse to tell her about my pain and she sends the doctor in quickly and I requested some pain killers. Linda came by on schedule to do my electrical wave therapy at 8:20 am and again determined that I wouldn’t be doing physio. Andy was still coming in to my room to do acupuncture when I somehow explained to him where I was hurting and he changed his mind. He left and returned with a contraption that he strapped around my waist that covered my backside and had me lay flat on my back. He plugged it in and said “forty min” as he usually tells me how long he’ll leave me for whatever treatment he’s giving. This belt heated up and vibrated sending out ultrasound waves or something, I don’t really know what it did but by the end of forty minutes I felt a whole lot better!
The whole day was very typical for the week, I didn’t do much and most of it was very uncomfortable. By midday I was concerned that I hadn’t heard back from the doctor about my final bone marrow transplant scheduled for tomorrow so I had the nurse confirm that it was still on. Yes it is which is good on one hand because I want to get this all over yet scary on the other. I didn’t receive my notification slip about the procedure as usual and I was worried that they had some concerns and might not go ahead with it. Well tomorrow at 11:00 am I’ll be wheeled into the transplant room one last time, hopefully my experience tomorrow will be a lot easier this time around!
Wednesday, October 29, 2008
Now it’s Monday and I’m scheduled for my fifth and final stem cell transplant. Everything starts off as usual with the nurse starting my IV at about 10:00 and by 11:00 I’m being wheeled into the transplantation room. Nothing different than any of my other lumbar punctures and I’m out in 20 minutes and dreading the next 6 hours. I got some sleep in the first hour and by the end of the second hour my lower back was starting to ache so I popped a couple of extra strength Tylenol. Coincidentally I’d had a conversation with TK the day before about how extra strength always did the job for me but nothing relieved her pain without codeine. At about the four hour mark I was taking a couple of her codeine pills as my discomfort was increasing. Finally the six hour mark hit and I was able to get out of bed and walk around a little where some people were gathering around the common area. After standing around for 10 or 15 minutes my lower back wasn’t feeling much better and I did notice some pain in my upper legs.
My neighbour Drew who suffers with ALS had a terrible night two nights earlier because of an adverse reaction to his lumbar puncture where he experienced extreme pain in his legs as if they were on fire. We could hear the commotion for quite some time and apparently it took a lot of drugs to finally calm him. This occurred two days after his treatment and apparently similar reactions have occurred with others but this was the first I’d heard of it. They do caution of headaches after treatment and I was starting to get one and wasn’t feeling as well as I normally would’ve expected so I explained this to Luca the head interpreter so he could explain to the doctor. The doctor offered ibuprofen but I had already taken Tylenol with codeine so that wasn’t going to cut it. He said he could give me something stronger through intravenous and we agreed that I would see how things went during the next half hour. Well before that half hour was up I was back in my room waiting for this IV.
Things were beginning to intensify for me quite rapidly now as I wasn’t getting relief once the IV had finished and my head was killing me! Next they gave an injection through the IV tube inserted into the vein of my left hand, now I understand why they require the IV tube remain inserted until the next day. This wasn’t making a difference either, it might not have been so bad if it were just my head in extreme pain but it was coming from my lower back and my legs too! I’ve always considered myself a tough guy in terms of withstanding pain and punishment, I can’t recall crying tears from physical pain since I was a young child. Emotional pain is a different story; I’ve cried rivers over some of the emotional suffering I’ve endured but never from physical suffering until now! Not like I was balling my eyes out or anything but tears were flowing.
Next they asked if I’d like to be knocked out and you bet I did! Again through the IV tube in my hand the nurse began injecting valium which is also very painful going in. She had to inject it slowly while gently massaging my vein as it went in. Towards the end of the syringe I was feeling groggy but kept opening my eyes, not to fight being put to sleep but I just couldn’t be knocked out the pain was so intense. I don’t even know how many other drugs they gave me and TK wasn’t there the whole time but she said she lost count. Sometime before midnight I took an oral dose of something which finally put me to sleep but not for long. I woke up again sometime before 1:30 am and both TK and I thought it would’ve been around 4 or 5 am! Yet again I took another oral dose of a different drug and finally slept through the night until approximately 7:30 am. What a HELLISH NIGHT!
When I woke up my head ache, back ache and leg aches were still with me but not nearly as severe. I buzzed the nurse to ask about my next medication and she said the doctor would be in to see me at 8. Dr. Jack did arrive at 8 along with Dr. Mike the head doctor and Doctor Tony who was the doctor on duty the previous night. They explained to me that this happens due to a change in the pressure of the fluid in my spinal canal, discussed the medications that I’d be taking and told me to tell them right away if I experienced anything new or increased pain.
So now I’m into day 24, feeling pretty lousy and spending another day lying in my bed. They monitored me pretty closely as they always do and I did improve throughout the day. My head and leg aches diminished to nothing by the end of the day but my lower back remained sore. My concern was what was happening to my spine. I couldn’t bend my head forward or bend my torso forward without excruciating results and when I moved in a way that aggravated my spine a resounding bark of agony was the result. The situation did improve throughout the day but never resolved itself and I remained on medications, both oral and intravenous. I didn’t really get out of my room all day and couldn’t do much because sitting for too long in one spot such as typing on my computer was difficult. I was feeling more confident about recovery as time went by; it was just going by slow! At one point during the night I was in the bathroom and suddenly sneezed, you know how they can sneak up on you unexpectedly which produced a loud yelp that I think really startled the night shift nurse! My room is located directly across from the nurses’ station but she was in my room within 20 seconds! Ever since that sneeze I’ve been fortunate enough to hold off several others by pinching my nose right before I feel the urge!
Day 25 started out pretty good other than a lousy sleep the night before. Everything was feeling much better other than my lower back pain, right at my tailbone now. I had electric wave therapy at 8:20 am as usual and was told that my physio would be cancelled for the day. I was up and about and walking around the halls talking with people I hadn’t really seen in a few days. I was looking forward to taking a shower for the first time in three days and finally getting the intravenous tube removed from my hand. I had a bag of glucose with vitamin B and C infused earlier and was finally going to get the tube removed, thankfully because after three days it was sore.
I did get to shower and shave and was feeling somewhat normal again. A few other patients were leaving the hospital this afternoon for the long awaited return home. Oh how we all look forward to that day! We were taking pictures, saying our good byes and making sure everyone had each other’s email, we’ve definitely met some interesting people here! That was pretty much my day, I can only hope and pray that tomorrow will be better again. W-Five was supposed to send their film crew today but we emailed them to say that I wouldn’t be able to do it and are now waiting to see when we can reschedule it. I don’t have too many more days here so hopefully it works out. That’s all for now.
Sunday, October 26, 2008
Well its Saturday again, overcast and light showers, could mean another cancelled West Lake outing. I finished my morning therapies from Friday at 11:30; we had all of our plans arranged again and the driver booked. We decided that we were going regardless, after all we’d missed two Saturday ventures in a row and it was only showers. Besides we had a very busy day planned with some things we had to get done. One of our interpreters Johnny had the day off and was coming with us so he was our first stop at noon.
Our 2nd stop was in Hangzhou core where we were heading to buy a wheelchair. After I leave the hospital I won’t have access to one for the rest of my journey and try as we might we couldn’t get a rental or loner anywhere. Johnny found a supplier and he could get a discount because of the hospital so off we went without knowing exactly where we were going which made this drive even harrier. When we finally found the store Mr. Chen our driver pulled up right in front and parked. This was a busy street that would never have parking allowed at home but not here and not Mr. Chen. He parks anywhere regardless of the mayhem it may cause as long as he gets me as close to the entrance as possible. We always try to book Mr. Chen, he hardly knows any English but he’s great! So I got a chair for just under $100 Canadian and I’m very happy with it. Most wheelchairs are so crappy in airports and hotels that I can never push myself but I can with this one. Did I mention how much I miss my scooter!!! It provides me so much independence and opportunity to do things that I just can’t do without it.
Our next stop was a famous tea house that we saw on TV located very close to West Lake. It was supposed to be on Longjing Rd. which weaves around a mountain side where the famous Dragon Tea is grown. We pulled off the road to one of the many buildings we’d seen that didn’t look like the famous tea house but there was a stone set of stairs to climb and maybe we’d see it at the top. Then again, maybe not! We walked across a very quaint patio surrounded by lush vegetation that was actually quite beautiful had it not been raining, into what looked like the backroom of a diner! TK and I just looked at one another thinking this can’t be it. I guess Johnny and Mr. Chen didn’t really know the famed tea house we were thinking of but explained that the area we were in and Longjing Rd. were the legendary attraction. Okay whatever; we’re here for the experience so just go with it.
We were the only people in this little tea house and the lady (apparently the owner or tea farmers wife) came to greet and seat us. She then went on to explain that a tea would cost 20 RMB; my instinctual reaction was forget it! 80 RMB for four cups of tea, did she think we were stupid? She then explained that if we bought some tea leaves we wouldn’t have to pay for the tea we drank but the tea cost 600 RMB per half kg. That was too expensive as well and our Chinese hostess seemed a little offended. She went on explaining the history of this place and how they grow the tea themselves up on the mountain side and on and on, good thing we had an interpreter! It all seemed fine with our two Chinese companions, tea really is a huge thing in China and this is the best so we sat down and went along with it. Our tea was served with a bowl of sunflower seeds and peanuts, both shelled and unsalted of course. The tea was served in a small clear glass that was so hot you couldn’t even pick it up with what looked to be little weeds floating in it! So we went through the whole ritual of how to make the tea, the smell and flavour, I was actually very unimpressed but TK drinks green tea all the time so she bought some to take home. She did barter it down to 250 RMB at least.
Next we had planned on touring around West Lake some more and maybe a boat ride since the rain had let up a little while we were having our tea but it was still showering and Mr. Chen explained that it would be much cooler down at the lake. We had plans to go for dinner at an infamous Chinese restaurant called Beggars Chicken which was at the lake so we headed down anyway. Unfortunately traffic was a mess and it took over one and a half hours to get back to the lake even though we were very close to it. By the time we made it back it was getting dark and time to eat anyway. We were lucky to get into the restaurant without a wait because it was very busy. There is over 150 years of history to the restaurant and it has served many dignitaries and famous people. The famous chicken was discovered by a beggar who had come across a chicken and wanted to save it so he wrapped it in special leaves that grow in West Lake and buried it in mud. When it came time to eat it he just threw it in the fire and what came out was an incredibly tender and flavourful chicken that is still enjoyed today. They barbeque it slow for about five hours and it’s so popular they make hundreds every day. It was actually the best Chinese meal we’ve had to date and Johnny and Mr. Chen were very appreciative!
Next stop was back to the night market to try and return a watch I had bought that didn’t keep time. I never would’ve thought you could return something or even find the same vendor at that market but Mr. Chen walked directly back to the same guy who sold it to me. He didn’t have any more of that watch but replaced the battery and it’s been working fine ever since. It’s so good to have our interpreters and drivers who really know what’s going on. This was a very fast stop and I didn’t even have to get out of the car!
It was about 6:30 by now and there was a large fireworks festival happening tonight so we headed off for a spot to watch. There is no special holiday associated with the event it’s just something the city of Hangzhou does once a year. They set it up on the river so there are several bridges and areas to view from but you can imagine how busy the roads were getting to a viewing spot. We drove right up to the point where the police had barricaded access to the bridge and were directing traffic away. Mr. Chen pulled up to the police officer directing traffic and in a loud and what seemed heated conversation told the officer he didn’t want to be diverted pointing to me to infer I couldn’t walk. This heated exchange carried on for a few minutes with Johnny joining in. Eventually Mr. Chen ignored the officer and pulled forward to a different one and started the same rant again! This lasted for a few minutes as well until he finally put the car in park and ran around to the trunk and unloaded the wheelchair. TK and I just looked at one another and said I guess we’re getting out here. Mr. Chen then drove off to park the car somewhere and returned within a few minutes. Kind of what I’m used to at home with my handicap placard and getting Rock Star parking!
So we walked across the bridge as far as we could go before entering the area that required tickets and waited there. We had to wait for about 45 minutes before it would start and people were flooding in. Bus after bus went past all empty now but there must have been a few hundred thousand people out and I again was the target of everyone’s stare. Eventually the show began with some thunderous booms and started out beautiful. There was at least a 2 km section of the river that was set up for the fireworks display so it was an enormous area and seemed to encompass the entire sky from what we could view. IT WAS THE MOST PHENOMENAL FIREWORKS DISPLAY THAT I’VE EVER NOT SEEN!!
No that was not a grammatical error, we really couldn’t see them. The sky was overcast and there was still a slight drizzle but no wind. Maybe the air was very heavy and humid but there was nowhere for the smoke to go and with the frequency, large size of some of the displays and the enormous area that they were being fired into, there was a lot of smoke being generated. You could see the entire sky change colors: red, green, blue but could only imagine the amazing images that were forming in the sky above. They went on nonstop for over half an hour and you could feel your whole body shake with every boom. It still turned out to be great and capped off a fun day!
I was almost finished this blog but didn’t get around to posting it, I’ve been sort of preoccupied which I’ll explain in my next one.
Above is the Beggars Chicken and the West Lake leaves they cook it in and that famous tea!