Monday, November 24th
Up early again….Quelle suprise! Talked to the grandkids before they left for school…It’s a regular physio day for Kevin. Alot of patients are having stem cells today. Kevin isn’t one of them as he is getting his bone marrow treatment tomorrow. Stem cell treatment days are Mondays, Wednesdays and Fridays as these are the days the stem cells get flown in to the hospital from the “banks”. They are always fresh never frozen and their shelf life is 12 hours. If you are scheduled to go on treatment day, they tell you your time and you best be ready. There are usually 2-3 beds coming or going all day. Bone marrow is kept here so when it is ready, they are ready….no waiting. It is by lumbar puncture as well. Kevin is on deck tomorrow at 11:00 with Dr. Mary and Dr. Tony.
There are a couple of ladies here from Romania. Their mom came as their caregiver. They are the nicest people. “Mom” doesn’t speak any English but one of the girls speaks some…..Ella came to visit me today and stayed and played while her mom, Georgina, went for a foot massage with Jill ( she is here for a week to help George)….What a blast they had….lots of stories and sharing experiences….”Did they make you turn over on your belly and lay the chairs right out??” Why, no….did you order first thing on the menu? Foot massage?? Yep sure did…..we flipped over and the guys just staddled the arms and started massaging our shoulders……GUYS??? Louise, we got ripped off…..or you ordered wrong…..we’ll just have to keep going back til they get it right 
November 27th, 2008
(Sunday, November 23rd)
Today, we actually had a chance to sleep in….It’s another free day and there are no doctor’s visits either. If we need them, we know where to find ‘em. I headed off early to the RT Market as it is Sunday and we are booked to go with Jack later. Will I ever shop here on Sunday’s again? Not likely. Sunday seems to be the day that everyone does their shopping…..nope, nada cart left….and they push their carts the same way they drive – no rhyme nor reason BUT there are few crashes, cars or carts….so obviously there is a system. Family is important and everyone goes shopping from grandma to baby all in little family groups….makes sense as they all live together too. They seem very happy and oblivious to the fact that it is wall to wall people. All in all, it took me 2 hours to pick up what I needed and I carried it back in ONE BAG! ergh!
Just arrived back when an invitation to lunch came in…..will we go….ahh yeah! ahh, no….we have Jack booked for the afternoon….oh what do you mean he triple booked?? Whatever…we cut him loose and decided to go to lunch afterall…..Name the time and place….Louise, Clarence, Leslie, Kevin and I all rolled down the street to the Grand Century Hotel….It was sooo good and we were all alone….big restaurant…go figure. We were out for a couple of hours and then pushed the big guy back home. We tidied up and hand washed some laundry that doesn’t go out with the ladies if ya know what I mean. Talked to the girls tonight on Skype for quite a while. Good to know they are playing well together. Did some floor visiting and called it a night…..
November 27th, 2008
(Saturday, Nov 22)
It might be the weekend, but for Kevin, it is not a day off. It is regular physio until noon and then rest. It was a little on the quiet side today as alot of the patients were off and tore outta here before their leave could be revoked. All drivers were long gone but that’s ok. Yesterday was enough for us and we have Jack booked for tomorrow afternoon. I booked him last weekend and confirmed him last Thursday through Alf. It is really important here to get out and about but we haven’t had much opportunity to do that. There are only three drivers. There are some who go almost everyday but it can get pricey to do that. Two hour minimum is 200 rmbs. If you go out to eat, you are suppose to feed the driver as well but Jack won’t eat. Not sure about the others. The best place to go eat Western food is the Hyatt but it is about 228 per person for the buffet….roughly $45 before tip if there is such a thing. We are trying to arrange reservations for next Thursday evening for a traditional American Thanksgiving Dinner. The Hyatt is charging 308 rmb per person…way to much for a turkey dinner. We have found another spot…So Lucy, a gem of a girl, and one of the favorite translators here, is arranging the reservations and two vans. There are about 15 of us going. Yeah, I know….I hear ya….15 is an odd number ….why, you ask? Well, some people have brought more than one caregiver with them. It’s actually a good idea. It would give a person a bit of a break. It takes at least a good hour to hustle to the market and drag the sack back 29 floors and always “Where did ya go?! is the first thing I’m asked. I am told to get out more with hope that I don’t wander too far so here I stay…..I’m the paid entertainment! As he settles in more, hopefully I will venture a little farther.
I had mentioned earlier that there was another Canadian family here….Clarence & Louise Wells and their daughter Leslie (Garnier). Wonderful company for us and today, Louise came and asked if we might be interested in going for a foot massage. Sounds interesting but I’m not crazy about having my feet touched….ah, well…when in Rome, right. OK…..let’s do it….I’ve heard everyone talking about it so why not? The boys were interested as well so the four of us went off on our merry way….oh wait, now…”where you going, Kevin?” You must sign out and tell them your return time….. “Going for a foot massage…. where’s the best place and….here’s my leash….I’ll pick it up around 5 pm…..don’t hold dinner….:-)”…..
Quite a spectacle we were, rolling down the avenue with Kevin in a chair…..you would think it was the first time they had ever seen a physically disabled person before….and both of us have blue eyes…well….they are totally amazed….and will actually reach out and touch blonde or red hair. Anyone remember Howie Mandel’s baby impression “What”??? I think it all the time but I really don’t have the heart to say anything….I just smile and say “Knee how” ….(no, that’s not the real spelling but phonetically works better for me)…good morning/hello……they smile, bow and hopefully, usually, move on.
Well, we made it and rolled right up the newly laid red carpet….Look Kevin, they knew us Canuks were coming! They hustled the 4 of us into the same room, low lights, 4 leather recliners, panel tvs, thought we were in Business Class on Air Canada….brought us hot tea and slices of sugar cane….”You sit here”….okie dokie….take off that…(socks and shoes….easy now). What’s with the bucket and towel….hmmmm ok….placed our feet inside….are they coming back with the water?? No water….it’s gettin pretty hot…eyowsers….hot steam……”you lie back…relax” Here….what’s this….it’s a menu? Great, how do order??? It’s all chinese?? What if we order something wrong? Yeah, yeah….the boys obviously felt that was impossible but Louise just pointed to her feet and they got the message….I hoped. Turns out in the end, that we had a fabulous time with 4 cute little Chinese girls who pointed and giggled and gave us quite a massage…here, a foot massage includes head, neck, shoulders, back, arms, legs andfinally the feet….Oh my goodness…wow….all for $12.50 canadian….no tip allowed……we’re going back….Clarence and Kevin have decided what they would like to take back to Canada as souvenirs…..figures
Yes, dear, I do see you....
November 26th, 2008
Friday November 21
Today, we’re getting outta here. The schedule says it’s a free day. I took Yan’s advice and hired a local guy who specializes in Hangzhou tours. His name is Jerry Chow and if you are coming to town, google his name and check out his website. His English is decent, his cab was larger (Hyundai….it has over 500,000 clicks on it and still purring….he says he’s goin’ for a million!) and he talks like he’s a history book. Pickup time was 10:00 am. Beike hires a few drivers for the patients to use ( and yes, you have to pay for them but it is a set price). Because of this, Jerry doesn’t come up to the top floor. We were on our way out of the room to meet him and ran smack into a school of doctors! Wasn’t aware they were coming in today but I quickly called Jerry and told him we’d be about 15 mins…..”no problem”….of course. What did he care? We were paying. By 10:30, we were on our way. The secret elevator was out of commission again so we waited for the cattle car…20 mins….jeesh. Today, we wanted to see more of “green” Hangzhou, have lunch and visit the silk factory…not the one that everyone goes to but the one that Jerry’s wife just found.
He makes his "get away"!
West Lake
Jerry and Kevin at Dragon's Well
Tea Mountain
Me picking tea leaves
Kevin wishing he had his chopsticks that Virginia gave him!
around West Lake
Stretching the silk to make a quilt
We drove up to Dragon’s Well and stopped at Tea Mountain. Beautiful area. Next pit stop was an authentic Chinese restaurant. Jerry ordered 4 dishes for us…two local delicacies( fish and shrimp), tofu and rice….the rice and shrimp were good but the other two…not our cup of tea but at least we tried it. Looks like it was our day to pick up the tab. 228rmbs……….tipping is not big here. They just smile and say no no…Off we went to the Silk factory. They gave us a tour including how they get the silk worms out of the cocoons and stretching it over the frame. They followed this little show with a bit of a shopping haven where you could buy anything made of silk…..amazing quality. They also demonstrated how to tell the difference between real and fake silk…..about 95% of the so called silk at the Night Market and the Silk market, is polyester….prices that seem like a steal….probably not real silk….buyer beware..
We returned back to our digs around 3:30 and showed off a bit of our purchases…..looks like we’ve started something….had a quiet supper and did some room visiting….So far, Kevin’s stamina is holding a bit better than before ….pray it holds and continues to improve. He spent some time on the bike tonight too…..lights out….
November 25th, 2008
(Thursday, November 20th. …and yes, I know that I am behind! I lost almost a week’s worth of writing when the server went on hiatus but I did take notes and I am rewriting as quickly as the patient will let me!)
So, as it turns out, Prison Break Season One is not yet over….Kevin didn’t tell me there was another disc so technically you know who to blame. That pretty much tells you what we did last evening. Sleeping is finally back into a steady pattern again….thanks for another small miracle! It was regular physio day….
Linda the electric wave therapist
Linda's handiwork
which means they start trooping in at 8:30 and peace decends upon us at noon…ahhh…hear that?? nothing! yes ….Kevin is resting and watching??….you guessed it! The afternoon sped by and before you knew it, supper time…5:00 pm. We made plans to go out for supper and then to the night market. Most of the message got lost in translation so when Jack picked us up at 5:30, we mentioned supper but he had no idea what we were talking about. Kevin was already pretty annoyed as he is nervous to go out……if he has to go to the bathroom, will they understand what we’re asking for? And more important, are they wheelchair friendly?? We got Kevin squared away in the car and took off to West Lake. We parked at the swanky Hyatt Hotel…incredible spot. We are suppose to go for supper here before we go home…..western cuisine! It is right on the lake. We crossed the street and sat and watched the laser water show…..it was kinda cool especially when the last fountain caught a breeze and covered us! It was so nice this afternoon and absolutely freezin’ tonight…I was wishing for a hat and mitts. We did stop in at the night market…not impressed. It was packed solid and not a great place to push a wheelchair. There were alot of knockoffs but nothing that shook cash out of my wallet. I saw a decent NorthFace jacket….At this point, I was a little touchy as we had just spent 20 minutes being pushed and shoved and stared at… lots of tourists here, lots of different countries too…all the same….get a good deal or die trying…..and the aisles were ridculously narrow. I looked at one jacket and the girl was dogging me the whole time….” you want?” That.. depends…how much? 375….(rmbs divided by 5…roughly $76)….Nope, shi shi…..I turned to leave….a calculator was thrust into my hand….”you put number”…..Yeah baby, now, we’re talkin’……I put 150…it’s a nice jacket…..she countered 325…..I jabbed in 200…..she punches in 300….I shook my head NO! Punched in 200 again….it’s a knock off for goodness sake. She tries staring me down….I stared back….She punched in 250……oh really…..I punched in 150 again…..the look she gave me…..she points to Jack …150 is for chinese not fo you! You 200! No Lady, me not 200 either…..see me leave?….lots more where that came from…..take us home, Jack…we’re done here.
Jack took us back to the room and ran to get the key….they run everywhere…no hurry Jack…no rush….As John Pinette would say “we’re starvin’ “, we’re cold and so very glad to be home….if you know what I mean. We dined on toast and peanut butter in front of the fireplace ( ok, ok…in front of the electric heating fan). We all have our dreams:-0
Heat is not on in the hospital yet….hopefully soon. We froze until we got into bed! Brrrrrrrrrrrr! Ahhh… Prison Break…..:-)
November 25th, 2008
(Wednesday, November, 19th)
With visions of the lumbar puncture dancing in his head, Mr. Jones tossed and turned again tonight. Up early and deep in thought. All food must be taken no later than 8:00 am and remember, NO SHOWER YET. He had his electric wave therapy this morning but nothing else as he has to be ready to go to the stem cell room here on the penthouse floor.
Stem cell surgical room
At 10:30 sharp, with an IV inserted and a little shot of valium, off he went, bed and all, with two nurses. Dr. Mary met him there where they hooked up his blood pressure machine…..it was good. Woosh, doors open…..woosh, doors closed. I have 30 minutes until he comes out. Shaken but not stirred…..
My heavens, what will I do with all of this time??
The decision was made for me. Laundry lady was here. Well that should chew up 20 mins. There are two types of laundry service here. The first and least expensive costs 7 rmb per half kilo…about $1.20. wow. The other type of service is pay by the piece and can be pricey. We, among others, have opted for the expensive type……Here’s why: From what we have heard and seen, the laundry is washed in the river and hung to dry. Bless her heart, laundry lady #1 works hard for that itty bit o’ cash but the clothes are so stiff and hard, ya can’t wear ‘em. And did I …mention the smell?…….not so good fo me. After many complaints, Johnny was tasked to find a better service….and might I say, what a great job he did. The new service is picked up on Mondays, Wednesdays and Saturdays. You are given a sheet to fill out and each piece is priced according to what it is. It is 11 rmbs for a pair of pants, 5 for a towel (did I mention we needed our own?? Who knew?) and 10 for a tshirt….suffice it to say, that laundry is easily $60 bucks a week…but it is more like dry cleaned and comes back packaged in cellophane like it is brand new….AND NO SMELL……YaY Johnny boy! They make their own little tags with numbers on them and hand sew them onto your clothes so it takes a few minutes to unpackage everything and remove the tags….if you’re ever coming here, take a little pair of scissors with you!
Kevin was back in the room by noon and slept for the next 4 hours….Dr. Mary said she would give him a little more valium next time as he felt everything and it really bothered him….they found his muscle very tight and the spinal was more difficult but next time, she promised it will be easier. He got through it and by the time he woke up, he was able to eat but not get up. He had to lie flat until after supper. I slowly feed him toast and water to ensure he was ok with it. He even waited until after 7 to get up and even then, we brought the bed up just a couple of inches every 10 minutes. That took about an hour but it worked….no sickness; no headache…..he said when he coughs, his head felt like it was going to explode but it quickly went away….minor…all things considering….check another day off half a world away
November 25th, 2008
Tuesday, November 18th
Have you ever seen the show Prison Break??! With 24 hours of bed rest ahead of us yesterday, I toddled off to the front desk to check out the dvd selection. Dr. Mary inquired if we had ever seen the show, Prison Break…..nope, can’t say I have……all the nurses just gushed about it….”favrit show!” Well, maybe we should see it after all….there’s four seasons ??! good heavens….just give us season one….I doubt Kevin will stay awake for most of it and I’ve got work to do……NOT! We love this show! Can’t seem to get enough of it. We wake at 6:30 and watch it for an hour before the kids start calling and showers. Any downtime….straight to Prison Break….totally hooked.
The day opened with a visit from the head doctor and all of the medical staff. He asked Kevin alot of questions about his history with MS and everything that has been going on here since his arrival. He spoke really good English….if I am not mistaken, I believe he did some of his studying in the US. Kevin is still counting the hours until he can get up….noon can’t come soon enough. We have completed Season One though! Kevin has the afternoons off from physio so he decided to oversee the fence production below us.
Johnny came in for a half hour visit…..and an English lesson. A year ago, he knew no English. Now, he is here as an interpreter….and he thirsts for more. Kevin introduced him to licorice- the best kind – nibs! Not the chopped up nibs …the looooooooong ones….yummie…..so now, Johnny comes in every few days to eat a piece but only if Kevin eats one too! Not really a tough task. With Kevin, it is a whole other food group.
Last night, there was a social in the recreation room, which just happens to be next door to us. There are 3 rooms leaving this week so we got together for cake and pop. All of the patients are American except for two Canuck rooms, one Romanian and one from the UK.
partay!
...and the beat goes on
Joanne from San Francisco and Rick from North Carolina
- Lennie, Drew, Bob and Robyn all from the States
- Georgina and Ella from the UK
Work skyped me today! It was great to hear from them all. We scheduled a little meeting for tomorrow night, China time, to go over a couple of items that need a wee bit of a discussion. Our phone rang today….first time….who in the world??! It was one of my friends and coworkers, Yan! She is Chinese and has been living in Canada for over 10 years. The ironic part: Hangzhou is her home city and she is coming to visit in 2 weeks while we are here!:->….time’s a tickin’…Kevin has his first stem cell lumbar puncture tomorrow morning….wonder what’s for supper tonight??…
November 24th, 2008
It is Monday morning (Nov.17th…still trying to catch up!)….a new week, and apparently, a new font to write with??! Weird.
Today, Kevin is having his bone marrow extraction at 10:30 am. He didn’t sleep much last night. It was a very early rise and shine and into the shower…..and no, I didn’t feed him anything this time! I don’t think that he would have eaten anything anyways. His marching orders from yesterday: No eat after 4:30, No drink after 8:30 and no physio. The anesthetist came to visit last night with an interpreter. They wanted to make sure Kevin was well and that he understood everything about the aspiration procedure as well as the basal anesthesia. It really didn’t do much to calm him.
He was dressed, laying on the bed, pretty quiet. He wouldn’t really speak. Catherine and Kitty, two nurses, came in and told him to turn over….”What for?” ”we shave you”……..”where??!!”…..WELL, turns out they shaved him from the tops of his legs to above the waist..his butt is smooth as a baby!….he just buried his red face into his pillow and refused to come out until they were done……lol…….funny, it didn’t bother me at all . They asked him to hop back into the shower and put on a johnny shirt. Although aged beyond repair, the style was rather ingenious…..every part of it was together with ties. Nor interference with the IVs or problems taking it off with an IV. Amy came to take his blood and will take it again after the procedure. She is 8 months pregnant and we keep teasing her that she’s not going to last another week! Kevin was scheduled to head to the 3rd floor OR at 10:30. Around 10:00, he mentioned he had a bit of a headache…..this was a little serious as they watch for colds, fevers, headaches constantly. So, I went to let the nurses know but I also told them that it was only mild. I pointed out that he hadn’t eaten since supper last night and was very nervous at this point. She said she would mention it to the doctor and I returned to the inner sanctum……I was only back a couple of minutes when there was a knock on the door and in came Dr. Mary……and Dr. Tony and the head doctor, three nurses, Luca, and Johnny, oh my. They quizzed Kevin about his headache and determined that he was hungry and stressed. Dr. Mary put her hand on his shoulder and said ” you must relax, you have nothing to worry about….you will be asleep”. As it was the first procedure in an OR for Kevin, Luca decided to stay and chat with him about it and other patient’s experiences. Within a few minutes, Dr. Mary came back with a couple of nurses and off we went. Luca and I went as far as the OR doors. Once they took him in, we returned to the penthouse. It was a little lonely….
even his cane seemed to miss him.
He was no time coming back and didn’t remember anything past the first 5 minutes….whew….thank goodness. The next 24 hours were spent tending to the boy as he was on complete bed rest. He did very well and had no side effects. I can’t stress enough about the care he is getting. There is at least one doctor always here and you can just stop at the door and chat to them whenever. Kevin slept on and off for the next 5 hours and then woke thirsty and hungry….doc’s orders: no shower for 3 days (great), lots of protein and veggies over the next couple of days….hmmmm….sounds like an easy task….riiiiight…..gone on a quest…..chat later.
November 23rd, 2008
ok…so it’s not exactly morning….it’s 3:30 am Sunday the 15th….it’s morning somewhere, right?! Kevin is watching a DVD “Open Range” with Kevin Costner and “I can’t remember the other guy’s name but he’s good”…..we borrowed it from the stack of choices at the nurse’s desk….pretty funny watching them with chinese dubbing but it had English subtitles so it wasn’t too bad. I spent about 3 hours uploading pics to the laptop and fixing the sizing on them all. The blog can’t handle anything too big……..I am going to start going back and putting some pics here and there for you. Can’t seem to get the video clips going yet…..another question for Alf. Laura and the kiddies called at 6:00…..she noticed that our skype was online. It’s always nice to chat. We really miss them.
A quick shower and breakfast and we were ready for the day. This morning’s meal was the same as everyday: oatmeal for me, toast and jam for him. Little bit of fruit and away we go. Today, we’re breakin’ free….we hired Jack Lee to take us out of here for a few hours. There are 3 drivers who work for the hospital. Two of them don’t speak any English and one, Jack, speaks a little. We tidied up, made our beds and got ready to go. Patients cannot leave the hospital without signing out and having the doctor approve it. Dr. Mary signed us out and gave us a return time of 1:00PM…..one o’clock??! What happened to our “get out of jail free ” card?? Oh, the schedule came out for the next week and it appears that Kevin is getting his bone marrow extraction tomorrow… We, err…Kevin is CB’d to barracks for the afternoon and evening. Well, a change of plans then. Jack met us at the nurse’s station and after a little chat with Alf to confirm where we were going and timeframes, we were off. We borrowed a wheelchair from the hospital so Kevin wouldn’t be too tired for his treatment tomorrow.
Leaving the hospital
We were off to Wushan Market via the back street path….We pulled up to one place and Jack got out. There were alot of tiny little places that had seen better days but nonetheless people were smiling and selling their wares. While Jack was out of the car, Kevin said “Where in the world did you arrange for us go today??! You can get out but I’m not.” Just hold your britches on there, Kevie, he’s only getting the tire on the wheelchair pumped up……a couple of minutes, a couple of coins, and a couple of “shi shi” (thank you) and we’re off again….funny….not a chev in sight…. Here are some of the sights on the drive to the market:
Jack
tons of contruction
Living and selling on the boat
We arrived at the market to find that it was on a very long street. Both sides were lined with century old storefronts still selling their wares. In the middle of the cobblestone streets, there were many carts and tables selling stuff, making candy, paper cutting, and so on.
traditional store front
...and another
And who knew Kevin had relatives in China!?! It’s Budda’s brother!
budda
We bartered for some beautiful silk pictures. Jack is marvelous at it, of course, getting us less than half of asking price…..I bought one that reminds me China and home. It is a picture of West Lake with alot of beautiful colored leaves….striking. We picked up a couple more small items and then headed over to West Lake…..it was so foggy, we had no idea we were even at a lake. There was a Starbucks near by so I made a beeline over to pick up lunch and went directly back to the hospital. Jack and Kevin hit it off well so the next outing will be easier on him. We booked Jack for next Sunday for a day tour. There is a magazine at the front desk with lots of things to do here. It ‘s a great tool. Dr. Mary and another doctor came in and discussed tomorrow’s procedure with Kevin and to have him sign papers. It was an early supper and an early night…..nerves are running high tonight………….
zzzzzzzzzzzz
November 22nd, 2008
In case you are wondering, Skype is a way to communicate with people without….I repeat, without cost if you use your computer and call someone else’s computer. We had our girls buy a webcam for about $30 (although you don’t need to have this unless you would like to see who you are talking to) and download the application from www.skype.com. You follow the directions from there and Voila! (See!!?? I did learn something in French last year!) There is a cost if you want to use your computer and internet connection to call someone’s phone and it is really cheap. However, that is not the route we chose to take. We set up to use our internet connection to call someone else’s internet connection. Now, they say that you need a headset and a mic (attached) but we don’t use one at all. There is a mic built into the laptop. So here is a suggestion….If you wish to talk to us, get onto skype and give us a call…..we are kevinjo55. Even if you don’t have a webcam, you will be able to see us if I start the video. It ain’t pretty….maybe it’s just us? So give it a shot. We leave the computer up all day and evening to check the mail, take calls and check on all of those messages you lovely people thoughtfully leave! IF we’re not sleeping or out for a period of time….We are getting lots of email at our home address too. I can see most but not all of it from here….oh happy days…..we’d like to keep them happy so remember….we are 12 hours AHEAD of Atlantic standard time…
November 21st, 2008
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