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We saw some fireworks last night from our hospital window. They were brief– lasted less than five minutes, but were pretty impressive for a private show. I wonder what they were celebrating?
Jim spent his last official day in therapy yesterday (Saturday), and he and James took a stroll around the entire 20th floor, Jim walking unassisted except for the grab bars which line the walls. Walking is slow and difficult for him, so the mere fact that James gets Jim out of the wheelchair and up on his feet each day is a minor miracle. We’re going to miss his diligence and encouragement, “Dui, dui!”
We said good-bye to Jim’s doctors and he presented Dr. Mike with a San Francisco Giants ballcap and Dr. Mary with a box of Sees chocolates. When thanking Drs. Mike and Mary for the important work they are doing, Dr. Mike had this to say: “We all need to be working together to understand and end these diseases. Thank YOU for being part of us.” Teamwork.
There’s that collective consciousness again…so different from our individualist ways. The Chinese are very good at sharing: technology, space, the road, even time. No one gets steamed up if someone else cuts a line here, it’s just not important. There’s very little, if any, road rage even though horns are used often. They’re more of a reminder; “I’m coming up on your left” or “watch out,” than an expression of anger or aggression.
China is beautiful, and thriving. The people we’ve met have been so gracious and kind. Regardless of Jim’s outcome, we are honored to have been part of the stem cell program in Hangzhou. The next few months will tell if the stem cells are able to grow and repair any of the damage to Jim’s brain. But in the meantime, we plan to live life according to the wisdom on the back of this t-shirt I saw today:
“Live Life Treasurely”.
That about says it all.
August 13th, 2007
Despite the heat, Jim was feeling good so we took a taxi to The West Lake to see the legendary pink lotus flowers in bloom. They bloom only in the heat of August, and some of the plants can reach six feet tall. Lotus leaves have a wing span of 12 to 18 inches and the flowers are incredibly delicate multi-shaded pink blossoms rising out of the water on thin, graceful stalks. It is breathtaking.
The Lake itself is beautiful, with stone bridges and wheeping willows. The large sycamore trees in Lakeside Park create a lovely canopy (and welcome shade) as we walked past historical buildings and gardens. There are always eager helpers who rush to our aid in getting the wheelchair up and over a curb, or through a too-narrow door opening.
We finally found the Zhejiang West Lake Gallery and went inside to see the Last Days of Pompeii exhibit. Exceptional! It’s pretty amazing to be able to get that up close and personal with a dining couch and a wall mural from this ancient Roman period. The delicate patterns and incredible craftsmanship in their jewlery and silver goblets are mesmerizing. It makes you wonder not only about the people who owned these things…but about those who made them.
We commandered another taxi before Jim got heat stroke and and soon we were collapsing in our air-conditioned room back at the hospital. We took out the computer and opened up our emails. There was one from Dr. Wu, stressing how important it was for Jim to stay out of the heat and sun.
Whoops.
August 12th, 2007
Jim woke up around nine o’clock last night, got up and had a good dinner. I ordered tofu and vegetables, cashew chicken–but hold the chicken (yes, they think I’m crazy) and white rice. The cashew chicken is cooked with vegetables, carrots, cucumber, etc. in a great sauce, so without the chicken it’s a really nice, nearly vegeterian dish.
He’s feeling good today…energy is up and he’s off to physical therapy. If he holds up for the weekend we might take an outing to the West Lake District. Besides the amazing pink lotus flowers in bloom during Autust on the Lake, there’s a museum we want to check out.
The Shejiang West Lake Gallery is hosting “The Last Days of Pompeii” exhibit. I hear that there are room-sized frescoes, mosaics and statues, as well as jewelry, tools and other everyday stuff that was excavated from the towns that were destroyed when Mount Vesuvius erupted. We’ve been watching the BBC series “Rome” so the timing couldn’t be more perfect.
It’s interesting to be able to see Roman history while we’re in China getting stem cells.
Unfortunately the American contributions to Hangzhou are MacDonalds, KFC, Pizza Hut and Hooters. As Jim observed, “fast food and fast women”. Aren’t we proud.
August 9th, 2007
Today is Wednesday, August the 8th, and it’s Jim’s fourth and “final spinal” stem cell transfer. It’s also the first day of Fall here in Hangzhou, and as if on cue the sky has cleared to a beautiful blue with puffy white clouds. It’s the first non-grey, not hazy, clear day since our arrival.
Jim has been a bit weak and tired again today. James returned him to our room early from physical therapy, telling me that he was too dizzy to continue. We cancelled the electro wave therapy and Jim has been napping…waiting for his 2:30 appointment with Dr. Mike. At 2:00 the nurses came in to prep Jim and get his IV going. He was feeling pretty relaxed as they wheeled him away.
We have a floor to ceiling, large picture window in our room that looks out over the city. On a clear day like today I can see out to the horizon, and it’s all buildings. Some are businesses, skyscrapers and industrial buildings, but by far the majority are apartment buildings…large complexes and older, smaller buildings in their shadows as far as the eye can see. Very few people in China live in single family homes.
One doesn’t often see grassy lawns, at least not in this part of Hangzhou. There are occassional lovely plantings of lantana, ice-plant, and perfectly manicured bushes, and just like in Sonoma, the crepe myrtle trees are blooming. But any available vacant lot or plot of land has been cultivated into productive vegetable gardens. And to me these are more beautiful than lawns.
On very hot evenings some people drag cots up to the roof tops of their buildings and sleep outside. It’s such a beautiful evening tonight that people are bringing chairs outside on the sidewalks and terraces, and gathering to talk. The rickshaw drivers are sitting on the sidewalk in a small circle playing cards for money. The break in the heat seems to have energized everyone!
I spaced out today and got off on the 19th floor instead of the 20th. It turns out to be the maternity ward. A very proud grandma and grandpa were with walking with their brand new little grandbaby. They were so in awe and so joyful that they had to come over and show me. There is nothing more beautiful than a newborn, so tiny and perfect and fresh from god (whoever she is)!
So I’m standing up here in the window on the 20th floor sending out a quiet prayer of gratitude to all the Chinese mothers and babies who have donated the umbilical cords for these stem cell treatments. Xie xie.
August 9th, 2007
I smell a little like a campfire today. It’s from our freshly laundered clothes, delivered to our hospital room yesterday. They have that tell-tale stiff feel and slightly smokey smell of clean clothes hung out on a clothesline to dry in the city. I appreciate that about the Chinese…they try hard to not be wasteful of anything…food, water, energy, or space. Why waste the energy of using an electric dryer if clothes can hang on a line and dry naturally in the heat?
Most babies and toddlers here are dressed in clothing that has an open seam at the croch from the front to the back, so they can easily squat or be positioned over an available trash can or bush when nature calls. I know what you’re thinking…it sounds a little unsanitary. But what’s a little baby tinkle, anyway? What really makes more sense, filling up landfills with billions of diapers that take so long to decompose or allowing a little urine to evaporate naturally, or be mopped up and returned to the water treatment system? And, I understand that it’s much easier to toilet train a toddler here.
I’ve heard westerners say that the Chinese don’t understand personal “space”. I disagree. When you see a mother on a small electric bicycle, balancing a five-year-old standing behind her and a three-year-old in front, this is someone who has an intimate understanding of personal space.
There are four million people in the city of Hangzhou. Everyday I watch a small army of bicycles, motorcycles, mopeds, pedestrians, rickshaws and cars intersect with each other seamlessly, sometimes with only an inch to spare. I’m the one who is nervous and awkward, like being out of step on a dance floor. Everyone else moves with calm precision and grace.
It’s true that the elevators can get uncomfortably full sometimes. The personal record for me is 18 1/2 (including the baby in its’ mother’s arms). But when you consider the sheer number of people that the elevators need to move in a busy hospital, pressing up against each other to fit in a few more is not only understandable, it’s considerate.
We’ve begun our last week in China and as much as I miss home, I’m going to miss here too.
August 6th, 2007
It’s difficult to write about a bad day for Jim, as I don’t want to cause worry to our friends and family so far away. So I want you to know that I’m writing this from the perspective of Sunday morning, and Jim is fine and back to normal.
Friday, however, was a different story. Jim woke up feeling weak and dizzy, with aches all over his body and tingling in his legs. We cancelled his therapies for the day and he took his Parkinson’s meds from the U.S. as well as the Chinese medicinal tea.
By mid-morning he was very anxious and needed some pain killers to try and relax. We had starting watching Chinese soap operas on the tv without the sound, making up our own dialogue, but today he wasn’t interested. Mid-afternoon, more pain meds. We spent most of the afternoon just quietly talking about our life together.
By evening his breathing was shallow and he felt that he wasn’t getting enough oxygen. He was put on oxygen and the doctors ordered an EKG to check his heart. It was a long night and throughout the doctors and nurses came in regularly to check on him. He was not running a fever, but was sweating profusely even though our room was cool. We directed a supplementary fan on him and and covered him with Jeanne’s silk sleep sack. The fan ruffled the silk against his legs and he was smiling in his sleep.
He awoke in the morning, drenched from a night sweat but asking for toast and eggs for breakfast. I knew he was back to normal!
In conferencing with the doctors we have decided to forego the Chinese Medicine for now, and be extremely careful with the pain meds. There may have been too many chemicals crashing into each other in Jim’s body in addition to the stem cells. This may have caused an anxiety attack.
By Saturday noon he was back to normal and I was breathing a huge sigh of relief!
August 5th, 2007
Jim had his third stem cell treatment (second spinal) on Wednesday, August the 1st. He had electro and physical therapy in the morning, but choose to cut short the acpuncture. The electric currents attached to the acpuncture needles are a little tough for him to handle and he wanted to be rested for the stem cell treatment in the afternoon.
The actual spinal treatments take no more than a half hour. When Jim was wheeled back into our room he was a bit groggy and surprisingly did not ask for his ipod. He wanted to be turned on his side (this is allowed as long as the head does not move upward at all). He was tired and wanted to sleep. A while later one of the nurses awakened him and asked how he was feeling. “HUNGRY!” was the reply. “No, no…are you feeling good?” she asked again. “I’m in a hospital…how good could I feel!” Smarty pants.
He went back to sleep, waking a few hours later and again, asking when he could eat. That’s our boy. At four hours the nurses said he could eat something, but could not raise his head for another two hours. It’s tricky eating while you’re lying down, especially for Jim who can choke easily. But I found that spooned applesauce and mango juice (thank you Meng) through a straw did the trick. He closed his eyes again and was smiling, talking, and at times even shouting out in his sleep.
Thursday morning Jim was feeling a little rough…the hangover thing again…and passed on the morning electric wave therapy.
Later in the morning James got him up on the parallel bars for physical therapy and added a little twist: tossing a large, soft ball to Jim as he stood between the rails. I was surprised at Jim’s coordination in being able to use both hands to catch the ball and throw it back, without losing his balance.
It’s a huge effort for Jim to walk, partly because the disease has caused a significant stoop in posture and a chin-to-chest position of his head. He and James work dilligently on the parallel bars everyday to improve this. There is a large mirror so patients can see their posture as they move. Anchored to the floor of the bars is a 6 inch tall plank of wood running straight down the middle. This visual guide encourages proper feet alignment. Then there are movable triangular stops, also about 6 inches high, placed between each step so that patients must lift their feet to clear them. James walks along side the bars, tapping Jim’s back to remind him to stand tall, repeating the mantra, “head up, head up!”
As I watch I’m struck by the irony. Jim has kept his chin up with such incredible courage and spirit throughout his battle with this devastating disease.
August 5th, 2007
The 20th floor smelled like cooked cabbage for the entire first week we were here. We blamed it on the Irish boys next door but they said it was the Hungarians, and then we suspected it might be a plumbing problem. After all, a plunger was on the required gear list we received from the hospital (no joke).
I waited until after 8 pm, past the dinner rush, to brew the medicinal tea. I had just gotten the instructions by email from Greg…this was going to be no ordinary pot of tea.
At lunch today Lua brought us a beautiful clay pot for brewing the tea. Unfortunately the convection hot plate only works with metal pans so I used the clay pot for soaking the herbs.
The herb formulas come in folded brown paper packets, and each packet contains about two cups of herbs, roots, bark, and other botanicals. I was praying that there was no una de gato or valerian in there or I’d be banished from the 20th floor! There’s another small folded packet that contains turtle shell. The turtle shell needs to boil longer than the other botanicals, so I put them in 5 cups of water and got the water boiling while the other herbs were soaking in the clay pot.
Then in come the Italians to cook their dinner. So as they’re whipping up their pasta with red sauce and cannellini beans on THEIR burner, I’m simmering turtle shells on mine. “Chinese medicine” I say, trying to explain. “Ah, yes,” they answer and I can hear the pity in their voices.
Two hours later the tea is ready: Four cups of deep brown liquid that surprisingly does not smell that bad at all. This is a two day supply for Jim.
Since starting the tea yesterday Jim has taken no pain meds and one problem he has struggled with for the past few months seems to be under control. This is strong medicine.
August 1st, 2007
Our dear friends in Hangzhou offered to put us in touch with a very respected Chinese doctor and professor, Dr. Wu Bo-Ping, who would evaluate Jim and prescribe any Chinese herbal medicine that he thought would be beneficial.
Early Monday morning President Meng sent a car to the hospital to pick us up for the 45 minute ride to the doctor’s office. Temperatures would climb to 100 degrees by 11:00 and with 50% humidity, it seemed more like 120. Greg had come early to the doctors office to get in line and get us a number to be seen.
The doctor’s office was in an older building with a large, open air courtyard on the ground level. We sat on long wooden benches similar to church pews waiting for the doctor to come down to see us. (Jim could not navagate the steep stairs to get up to his office).
Several Chinese pharmacists were located here in the atrium, blending personalized prescriptions from large glass jars and bins of dried herbs, barks, botanicals, mushrooms, roots and other interesting looking substances. This is an ancient science, and quite a contrast to the modern frontier of stem cell treatments. We were quite surprised, however, to find out that Beike (the stem cell company) does not incorporate Chinese herbs, diet or massage into their treatment protocol here in Hangzhou. We are very grateful to Greg and Meng for making it possible for Jim to be seen by such a gifted physician as Doctor Wu.
As we sat in the sweltering heat, Greg warned us about heat stroke and Casey immediately went and purchased a straw cowboy hat for Jim from a street vendor outside the doctors building. People here are very careful about sun exposure. Women riding their bicycles wear lightweight shawls which go down their arms and attach to their fingers, covering even their hands. Everyone wears hats, and some bike and motorscooter riders wear full face visors…like a single, giant sunglass lens which covers their entire face.
We drew quite a curious crowd when the doctor came down to examine Jim in the atrium. After reading his MRI’s in the natural light, he held Jim’s hands, looked at his tongue several times, and asked many questions about the extent of Jim’s symptoms. He seemed to have an innate understanding of how the disease was manifesting itself in Jim’s body.
Greg asked if I’d like to have the pharmacy brew the prescription that the doctor would write, or if I’d like to do it at the hospital. I agreed to do it at the hospital, as we have a tiny kitchen and convection hot plate on the 20th floor. It would prove to be quite an involved process….
We had a lovely lunch with President Meng, Lua, Casey and young Sam (Meng’s son) at the Holiday Inn across the street from Huisong’s corporate offices. The hotel is beautiful and the food was the best we’ve had in China so far. Jim had one bit of bad news from the doctor: No more alcohol (not even wine) and no more spicy foods. So Meng and Lua ordered carefully and the food was just delicious, including freshly sqeezed orange juice. It was touching to see how attentive and considerate Meng was with Jim, gently helping him steady his tea cup, requesting small bowls for Jim instead of plates, serving him and even putting food on Jim’s spoon for him. We are surrounded by such exquisite acts of kindness and concern and feel so blessed to have these wonderful friends.
August 1st, 2007
Jim is feeling good today and back at his physical therapy and acpuncture routine. While we haven’t noticed any “wow factor” changes, I continue to be amazed at what his physical therapist gets Jim to do physically. The workout is intense, and although he’s tired afterwards, he says it feels great to be using the muscles and have some range of motion back again. One thing we’ve both realized is that the old adage, “move it or lose it” has never been more appropriate.
Jim has relied increasingly on his motorized wheelchair for the past year (at his doctor’s advice) to reduce the risk of falling. Unfortunately this has also contributed significally to his loss of movement. So a good, supervised physical workout each day has been very beneficial, and he usually gets through it with a minimum of whining. James is Jim’s therapist and Jim refers to the physical therapy room as “James’s house of terror”, but James and James make a pretty good team.
July 29th, 2007
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