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I’m sitting in the Beijing airport, with 3 1/2 hours to go until I board my flight to Chicago. My day started at 6 am, after 3 hours of sleep. I always do this, get an early flight and start packing around 10 pm, stupid. The flight from Qingdao was uneventful, 9:30-11. Chinese airport security was just as thorough leaving as coming. I thought it was just customs. Once again I was frisked within an inch of my life. At least this time, it was by a cute girl instead of Yao Ming’s big brother. I stopped at MacDonald’s, and they actually confiscated my soda!
So, I’m sitting here, waiting, and I just ate the best ice cold Big Mac I ever had. Since I’ve got such a long wait, it seemed the perfect time to continue this, at least as long as my battery lasts. Once again, I’m struck by the kindness and patience of the Chinese people. The airline provided a wheelchair and attendant again, and I asked to stop 3 times. At the McDonalds, at a rest room, and after we’d passed it by 50 yards, a shop to replace the afore mentioned soda. In the states, they probably would have done it, but by the 3rd stop, it would have been grudginly, at the least. This lady couldn’t have been nicer, it was as if she had nothing to do all day but take care of me.
I am pleased to say that the wheelchair was used only for the carry on bags. I walked, or pushed the baggage cart with the big bags, leaning on it, through both airports. Beijing has the biggest airport in the world, and I felt like we saw it all. It wasn’t easy, but a month ago, it would have been impossible.
I left the hospital quite early, avoiding extended goodbyes ,which I’m not very good at. Dannie and Bonnie were up, and they were my send off committee. Dannie and I hit it off from the start, and I’ll miss her and Jessica. I really hope Jess gets some help from this; she’s as sweet as she can be, and fate dealt her a real stinker of a hand.
Well, onto a brief list of my improvements. As told previously, I ran, walked a heel to toe straight line, rose from a sitting position with 30 lbs in my hands, did squats holding that thirty lbs, and held them for as much as a minute, and walked through a large airport. I also walked up and down a short flight of stairs normally (one foot on each step instead of two) without holding the rail. Jason told me I would do that and run before I left, and I really didn’t believe him. My fatigue and dizziness are basically gone, my balance is much better, I can recover from a slip. My speech is much better, pretty much normal (although not announcer normal) when I’m rested, I have a much easier time picking up something off the floor without holding on, I’m better, at carrying a cup of tea or soup across a room and I can play the violin again. Okay, I never played the violin. I still can’t write well or sing, but I’m working on it.
I hope this is only the beginning, that engraftment does occur in the coming months. I’ve basically turned the clock back over a year, and I’m hoping for more. I just wish I’d come here sooner.
Just landed in Chicago. The flight from Beijing goes faster than the flight there, but it still lasts forever. Now, my 2 hour layover has turned into 4 hours, making the total trip time 26 hours. The security in Chicago is almost as bad as Beijing. Next stop, New York.
Seeing my family was kind of surreal. I feel like a fish out of water. Funny how things never turn out like we think they will. Equally strange (not) sleepiing in my own bed. This jetlag is rough, adrenaline kept me going Sunday. Monday, I felt like I’d been run over by a tank. Walking through those airports was a mistake.
I was warned that the jetlag and fatigue would cancel out the improvements I had, but actually experiencing it is a still a jolt. I feel like I never left, and not in a good way. Guess I’ll just have to sleep it off. They say it takes over a week.
I’d like to thank Dr. Chen who performed the spinals on me, Dr. Bing, who was my main advocate for those spinals when they wanted to go with IVs, Dr. Tonny, my primary physician, Dr. Lisa, Dr. Frank, and all the other Drs. whom I didn’t even retain the names of (I knew I should’ve mentioned those cognitive problems!). My PTs, Jason and Martin, who helped me put those stemcells to work, Wendy who seemed to be at the hospital 24/7, Jack, who went above and beyond the call of duty for me more than once, and Amanda and Lucy, who listened to me ask for pizza or dumplings about 8,000 times, all the nurses who were so kind to me, and all the fellow patients and their families, who became very good friends very quickly, which I don’t generally do well. And of course my family and friends for all their support and love, especially my mom, my sister, my aunts Sandy and Sylvia, and most of all my wife Susan. And to all those specialists who said “you’ll be sorry”, I give a big fat raspberry.
Well, that’s all for now, for photos, go to qingdaochina.shutterfly.com. I’ll update this periodically to chronicle any new improvements. Thanks for listening.
November 22nd, 2008
Time to go home.
There were times during the last month when it seemed like I never would be saying that, but here it is, and it seems like I got here last night. I have had a somewhat frustrating day, but that pales in comparison to how much I have gained physically and to the fact that I am going home.
I spent another 3 hours on my feet shopping. I hated that before the ataxia. I didn’t get what I wanted, but I was able to cover everybody. I lost my bank card, and can’t tell my bank to cancel it. My arrival home has been delayed 3 hours, ruining my plans for dinner with my family. And it doesn’t matter. It’s interesting how a life changing disease can put things in perspective. Healthy people are always saying, “don’t sweat the small stuff” and, “stop and smell the roses”. But they often don’t follow through. I know I didn’t. So far, for the most part, I have been able to. We’ll see how long it lasts. During most of my life, I wasn’t a very patient person. Ataxia forces you to be patient, or you go crazy, not to mention fall down a lot. I’m not trying to say I’m perfect at it. Gandhi I’m not. But I’m certainly better than I used to be.
By the time I got back from shopping with Jack, it was about 6:30 and I had made him delay his dinner date. I wanted to help him pay for dinner. In fact, I really pushed it. Once again, he smiled and refused it. When I realized I was making him uncomfortable, I backed off. In the states most people have their hand out, expecting a tip. Here, if you offer, they generally smile and shake their heads.
It was too late to order dinner, but I still had some stuff, so I went to wash my dishes, and was invited to a pot luck dinner, even though I didn’t have a pot. About a dozen of us sat around the table, and I thoroughly enjoyed my last meal in Qingdao. Finally, it was time for goodbyes. They were bittersweet, particularly when Jessica and her mom Dannie got a bit teary eyed. Then I went to say goodbye to my sweet Sophia, and then I went to my room, packed, and wrote this. It’s 1 AM now, so I’ll leave the progress report for another day. I’ve tried to add to this everyday, but in the transition to home, I’ll probably miss a few days. But (with apologies to Arnold Schwarzenegger) I’ll be back.
November 16th, 2008
I think there’s something to that Valium idea. I was definitely walking better today. We’ll see how I am after the spinal without it. I was 90% at PT today. Jason had been admiring my walking stick, so I gave him my backup as a thank you. I think he liked it. Wine and booze for the interpreters. Nurses taken care of, just the doctors to go.
Since I wasn’t able to get everything I wanted yesterday, I’m going to make a quick trip tomorrow to get the last items on my list. I think I just missed them at the RT Mart, which would make it a short trip, but I may have to go to Jimo, adding an hour and a half in the cab. I’m going between PT and acupuncture. That gives me 3 hours to do it. 8 hats, 6 compacts, 3 wallets and one other item. I feel like Santa Clause East. And now, time for the spinal.
Well, apparently, there’s a trade off when you abstain from Valium. You feel better after, but worse during. Not as bad as the first one, they only stuck me 4 times, but they root around each time. Finally, they got it done, and wheeled me back to my room. But I had a harder time lying still than before, probably also the result of no Valium. However, when I got up, I knew I’d made the right choice. I was much better standing and walking than the last time, no slide back at all. Theory proven.
By the time I’d done my 6 hours, it was 9 PM. Then, telling my wife, my mother, and sister I was OK and eating my nuked pizza made it 11:30. This is adding another hour. After lying around all day, I really don’t feel like sleeping, but packing doesn’t hold much allure either. I don’t think it’s really sunk in that I’m done, and in about 30 hours, I’m going home.
November 15th, 2008
Had the day off. Way too much time on my hands. I went shopping for gifts today with Jack, wanted to pay him but he refused. Spent too much time on my feet, and didn’t get everything I wanted. Carolyn told me I looked in the wrong place. I’ll have to go back Saturday between PT and acupuncture.
Last spinal tomorrow, and frankly, it’s anticlimactic. I seem to have lost the big gains I’d made. I realize that fatigue or Valium might be the culprit, but I don’t know.
Also, the spinals don’t seem to have the immediate effect that the IVs do, so perhaps I should be looking down the road apiece. It’s discouraging when you can’t do what you could 5 days ago. But I’m coming back, and fortunately, the regression only involves balance and walking. More energy, no dizziness, and better speech are good: I’m just a little greedy, I want it all.
14 of us descended on the Holiday Inn buffet tonight, and we had a blast. There is a camaraderie among people facing these challenges and those helping them that may be like soldiers on the front. I’m not sure, having never been in the military. It is like being on a team, banded together in a common cause. I’ve made friendships a lot quicker than I have in the past. My father often told me, “we’re all in this together”, if I never quite got that, I do now.
Anyway, we ate too much, drank too much (those of us who could) and generally enjoyed getting out of Camp Stemcell. Got to see my friend Michael, the maitre d’, one more time. It was a going away dinner for me, Jim and Carolyn, and Debbie and Emma. We all leave in the next 4 days. Between tomorrow’s spinal, and Saturday’s packing, I won’t be going out again, but I won’t forget this place, or these people.
Well, since this is starting to sound like an ad for Bermuda Tourism, guess I’ll call it a night.
November 14th, 2008
Better night, but not perfect. Fell in the shower, with 5 guardrails! Didn’t call the nurse, because she ratted me out to the doctors last time, which had something to do with the IV decision.
This morning, they came in as I was coming out of the shower Fortunately, they didn’t seem to notice the scrape on my knee. They had considered my (Jim’s) Valium hypothesis (I had mentioned it to Dr. Bing, my spinal proponent) and after tests on reflexes, touching my nose with my eyes shut (really officer, I’m not drunk, I have ataxia) they agreed that a spinal would be best for the last treatment. Stubborn wins again!
Actually, I’m amazed at their willingness to listen to the patient, something you don’t see very often from the tin god specialists in the states . I also think they won’t change their minds because they don’t see the results. I’ll tell my general neurologist, but I’m not trucking up to Columbia Presbyterian, waiting 3 hours, and paying $900 just to prove a point. I may be crazy, but I’m not stupid.
Anyway, I felt better today, but not 100%. This was reflected in PT. There’s nothing like therapy to tell you where you stand. You’re doing the same exercises, and how you do is a great frame of reference.
I met another newcomer today, Emanuel. He has a form of ataxia called SCA-3, or Muchado Joseph’s disease. Worse than mine. I tried to give him the heads up on things (lidocaine good, Valium bad) he’s a nice fellow, I hope this works for him.
Tomorrow, I go on my shopping trip with Jack. Jim’s wife Carolyn spotted eveything I want at the RT mall. So we’ll have a little KFC for lunch, get the bootie, and head home. Then, one last trip to the Holiday Inn buffet with some friends. Friday, some photos and gift giving with the nurses, therapists, interpreters and doctors, and the last spinal. Saturday therapy, rest and packing. And Sunday, I am outta here!
November 12th, 2008
Not a good night. I know the beds have to have wheels, but when you grab at one to keep your balance…you don’t. I fell on the floor, scared the hell out of the nurse. She came in and actually tried to pick me up from a sitting position. Not going to happen. I told her to save herself the hernia and got to my knees, which made it a lot easier. Then we put the bed back in its place and I promised to be a good boy.
I lied. Couple of hours later, I’m getting back in bed, and I did the “Curly Shuffle” backwards about 15 feet across the room. Fortunately, the water cooler broke my fall. It never stood a chance. The same nurse comes flying in, and I’m lying on the floor in my shorts next to the broken remains of the cooler. Now this girl doesn’t speak much English, but I knew from her eyes that she was thinking “how in hell did he wind up over there and why did it have to happen on my shift?”. Luckily, no blood (or water) was spilt.
So now I’m the proud owner of a new cooler, and I do mean owner. But for $25 total, they had that sucker installed by 2 PM. Try that in NY. You can’t get an ambulance that fast. I also got a new bed, the old one never did work right, needs a brake job.
The renewed balance problem seems to have coincided with the 3 spinals in a row, and the doctors now want to make the final treatment an IV. I understand their reasoning, but there may be another culprit. Before a spinal, they pump you full of Valium. My friend Jim’s sister-in-law is an RN, and she told him that even after the initial drowsiness wears off, the muscle relaxant effect lingers on. Wouldn’t affect speech, energy, or dizziness. And it didn’t. But last night and this morning, my balance was shot. Now, it’s 10 PM here, and I’m feeling much better. This morning, I went for PT and Jason took one look at me and said, ” go home, sleep”.
I’m looking foward to making up for lost time tomorrow.
November 11th, 2008
Little late on this one. Spinal today, had to stay in bed until 8:30. That’s worse than the spinal itself. That makes 6 out of 7, 3 spinals and 3 IVs. My schedule was switched around, so Thursday is my last day off. For the first time, I’m hiring someone to go with me, as I’m shopping for most of the gifts for the staff and my family.
When I think back to how people wanted me to hire somebody for the whole month, I have to laugh. I don’t think I would have lasted a month in one room with my wife, much less a stranger who doesn’t speak English. My wife says my vacation is over soon, and back to reality. I’d make that trade any day, but it is good to know that I still like myself enough to be alone for a month. Although it’s much easier now than 20 years ago when I was touring bus and truck singing in Europe. Then, a weekly 15 minute phone call was an expensive luxury, compared to daily video calls now. Still, it was a lot more fun then. I was doing what I loved to do, and I didn’t have a wife and four little ones tugging at my heart strings. Now, I miss them like crazy and I’m getting IVs and needles in my spine.
It’s a good thing that I spent time in various training rooms when I was younger. Needles are no stranger, nor electrowave therapy, and all of the other fun things they think up to pass the time. How difficult it must be for the children, not knowing why strangers are hurting them, and for the parents, who must watch someone doing these necessary, but unpleasant things to their children (their children!). I know I keep coming back to this, but it has made quite an impression on me. I have led a sheltered and very lucky life; until I came here, I had never met a child with Cerebral Palsy, or ONH, or anoxia, much less come to care for them, and their parents. Of all the things I have seen and done here, I’ll remember that the most.
November 11th, 2008
Another day of slothfulness. Woke up about 4 AM, my back had gotten a lot worse. Showered, dressed, had the mandatory pop tart (I used to like those) and around 8 got my Aleve from Dr. Tonny. My friends had given me 2 prescription painkillers, they didn’t work as well as the Aleve. ”All day long, all day strong”.
After I talked to my wife and kids, I once again slept all day. Funny thing about the kids; with the exception of Jacob, the oldest, they don’t really miss me. They say a quick hello, and go back to playing. Well, sometimes Jenny (the youngest, by an hour) seems more attached. I think being able to see me has made it easier for them, which is great. Or maybe they just don’t give a damn.
Anyway, I slept until 1, when the phone rang. It was my Uncle’s fiancee, Tina, who just completed the Qingdao violin competition by winning the whole shebang. As a former opera singer, I know how hard it is to win those competitions. The best doesn’t always win, althouh in this case, the best did, I’ve heard her play. Then she told my uncle (he and his brother are also superb violinists) that she came in 6th and let him rant and rave for 20 minutes about how unfair it was until she finally told him she was the winner. Watch out, Uncle, she’s a handfull and a half.
Tina arrived with her folks, very nice people, and I took them to the Holiday Inn I had been to before. Or I should say I tried to take them. Tina had the check in hand right after we ordered, a very deft manuever. Tina and I ordered a la carte, and her folks had the buffet, so we got the best of both wolds, sharing mounds of food from the buffet and then having steaks. Between Tina shelling snails and shrimp for me (she has a neat way of shellng the shrimp, eyes and all in one piece,when I do it, it looks like the shrimp hit a land mine) and her father bringing me plate after plate of sashimi, then fruit, I thought I would pop. And the Chinese have a secret; their desserts are better than the French, Germans, and Italians rolled into one.
All in all, a wonderful evening. Back to the grind tomorow; spinal at 2. 5 down, 2 to go.
November 9th, 2008
[ Not much to say today. After last night’s spinal and getting up at 4, I went back to sleep, woke up at 9 to make some more calls, then basically slept all day. My back is sorer after 1 puncture than it was after 25.
Woke up at 6 and went to dinner with Dani, Jess, Jim and Carolyn, Pablo, Carolina and Sophia, Debbie and Wendy and three newcomers; Phillip, Debbie’s “replacement” for her mom, and a lady who’s here with a friend paralyzed in a horse riding accident. Another buffet, better than the last one. Positively stuffed, and surprisingly, still tired. The weather turned cold remarkably fast. Must’ve been in the low 40s tonight.
Just got home from dinner, and I’m staying up to say good morning to my family. The speakers on the computer went out again, so I’m using Skype for the webcam, and the telephone for audio. It works, but I’m glad it’s only for a week. Can’t believe I’m this tired after sleeping all day. Those spinals are rough. Due to the last one and fatigue, I’m back to walking and talking funny. Sometimes, I feel like I’m on a roller coaster.
Guess I’ll go shopping tomorrow, if I’m up to it. If not, I’m off Tuesday. Spinals Monday and Friday, and then, departure Sunday at 7:55. Due to the time difference, I’ll be home at 6 that night.
November 8th, 2008
Well, the second night of full rest did the trick. I feel like my new self. My computer speakers coming back to life also helped my morale. Last night, they stopped working, which meant no Skype. For the first time here, I felt truly isolated. I didn’t like it. Then, they magically started working again, and I was able to talk to and see my family.
I hadn’t realized how important that was. Skype, for all its faults, is a whole lot better than the phone. If those speakers can only last eight more days. Yes eight days; that’s all I’ve got left before the flight home, and being with my family again. And my wife.
Now, if they can just get the spinal right, I’ll be all set. It’s 4PM, and I just had my last drink of water until 9:30 or so. Spinal at 7, no food or drink 3 hours before the procedure, no drink for 2 hours after, no food for 4. The chief of surgery is going to do it, and he has an extra long needle. This better work, its what I came here for, and I will be very disapointed if they can’t do it. If today, and both next week are spinals, that will make 4 spinals and 3 IVs. Not bad. More on this later.
Tomorrow, I’m planning on going to the Jimo Mart (and McDonald’s) for the first time. I’m told that I shouldn’t miss it. I know what they’ve got at the RT mart, so I can compare. I want to get gifts for my family, the doctors, the interpreters, and Jason. I actually know what I want, so it shouldn’t be hard.
Then tomorrow night, a bunch of us are going to the Holiday Inn for dinner. Unfortunately, Clint and Luke won’t be joining us, but for good reason; they’re going home. In fact, I think with the exception of Jim and Carolyn, Sophia, Carolina, and Pablo, and Cindy and Xavier, we’ve had a complete turnover on this floor. From a newbie to a grizzled vet in just 3 weeks.
It’s 10 to 7, and we just found out that the injections been put off until 10 pm. Haven’t eaten or drank since 4, IV’s all hooked up, and now we eat and wait aniother 3 hours. Some advance notice.
Just got up from my enforced nap. They got the spinal done. This time, they used less Valium and (for the first time) some lidocaine. I was in an OR this time, no gloves no masks, nurses wearing sandals. Wendy came in with me. That girl does everything but lock up at night.
Anyway, I’m more confident now that they can finish this right, and I can put China in my rear-view mirror
November 8th, 2008
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