A banner day, the last day in China, and the trip home – this time with words!
April 12th, 2009
Well, it seems I got away without any computer glitches until my last post in China – and then all my writing got deleted. Alas. In any case, I will try to rewrite what I wrote here now, plus a bit more!
Mom and I arrived home safely on Monday afternoon after a long trip. All went better and better as the travelling progressed after a rocky start. After being ready to go at 8:00 am, our ride somehow mixed up 8:15 with 8:50 and chose the latter time to show up. No problem really; our flight left at 10:55. But then at the airport, we apparently got the Air China rookie to check us in: even with a translator there to help us it took a full hour. With 10 minutes to spare we made it to the plane, which then thought it would be best to wait on the tarmac for 45 minutes while take-off was delayed. Sigh. But we did finally get going, and the rest of the trip went very smoothly, except for the fact that by 8:30 that night I had been up for about 28 hours. The fun of jet-lag; I am recovering from it as I write.
All this was preceded, however, by a rather eventful weekend. After my last lumbar puncture on Wednesday (Apr. 8), as I mentioned before, on Thursday I was a bit weak and woke in the middle of the night feeling quite uncomfortable but got back to sleep and got up full of energy at 5:30 am, showered quicker than ever, and wrote my last blog for an hour and a half before physio at 8:30. This would have been an amazing day just from that, but it became a true banner day. I went to physio a bit late, but made up for it by being able to do much more of my exercises than ever before. For example, one of the exercises Tina had me do each day was to (lying on my back) lift the knee of each leg to my chest, one leg at a time. She would help me do the movement correctly and assist my leg if it was too weak on its own. For the entire trip this had been one of the more difficult exercises for me to do, especially with my left leg. But on this morning, where I could usually do only about 6 or 7 repetitions with my left leg with a lot of assistance, I was able to do a full 20 repetitions mostly with hardly any assistance at all! And similar things happened for every exercise! One more example: I was able to stand easily, unassisted and straight, for a full 30 seconds, where a difficult 5 or 10 seconds standing had been the norm. Tina and my Mom were both watching and were as astounded as I was. But it seemed like a huge success for the stem cells and the therapy, and confirmed what the doctors had observed with me repeatedly over the 30 days: That the stem cells seem to have a very positive effect in my case.
The vice-head doctor and his entourage came to visit me during this amazing physio session. I say entourage because he never comes alone but with my attending physician Dr. Hong, who gives him a run down of my status, and also with at least 2 other doctors, 3 or 4 nurses, a translator, and often a young woman with a video camera. A veritable swarm of professionals all looking intently and kindly at me! A bit overwhelming at first, but I realized that it did make me feel very supported and cared for. The Chinese way of doing things I suppose.
In any case, the doctor asked how I was and I said that I was doing extraordinarily well that day. As he spoke no English and Dr. Hong had not yet heard about the amazing things going on, he did not hear about that day’s great improvements at all. However, even on the basis of what had gone on before, he confirmed again that the stem cells were working well for me and then suggested, rather dispassionately, that I should come again for another month of treatment in 3-4 months time and continue coming every 3-4 months after that for a while – that that would be the most effective treatment for me. I was a bit shocked, and only managed to quip that I would love to come but I had no money. This got a chuckle, and then the swarm moved off to the next patient. Sadly the video camera girl went with the swarm, so none of the amazing feats I was accomplishing got caught on tape.
A few minutes later Dr. Hong came by to chat by herself, and I told her about what was happening that morning. She was delighted! I then asked her to explain why the doctor had recommended coming back so soon. She said that the stem cells take 2 or 3 months to mature after the lumbar punctures, and so the improvements that they will give will show up during that time. However, after that period no more improvements will occur. Thus, she said, the doctor’s opinion was that it would be most effective to get another infusion of stem cells immediately after the first round had matured in order to continue to make progress without interruption. I said that made sense, but again it was the lack of money that was the real obstacle. She laughed and said something like, “you’re smart, you should go make lots of money and come back”. I laughed faintly and rather half-heartedly in a somewhat discouraged manner. I felt demoralized and a bit hopeless. It had seemed so hopeful – finally a treatment that actually had a positive effect for reversing the MS symptoms rather than at best merely stopping or slowing the progression. But how would I ever be able to afford it? Not on a graduate student’s salary for sure. The cost would be in the range of $100,000 a year.
I returned to doing my exercises and left the problem alone. The exercises continued to go extremely well, and I was not even tired after we were done. I reconfirmed with Tina my realization that relaxing the tension in my shoulders and back relaxed the muscles in my legs which in turn allowed them to work much more strongly, and that this, along with and aided by the effects of the stem cells, had allowed us to see the great improvements we were witnessing. She also confirmed that my legs were indeed much more relaxed than they had been on other days.
All the spiritual work I had done had showed me that the tension in the shoulders had come from the deep terror I had carried there all my life. My revelatory week had given me some spiritual tools and understanding that had allowed me to let go of the terror and work through it in large part and to be able to replace it with peace and joy and well-being. All together, perhaps, I had finally found and begun to undo the (or at least a) root cause of the MS, something I had been searching for for 16 years. I don’t know, but greater peace and joy and contentment and well being, especially in my body, can do nothing but good I figure. I feel as though I can continue to use the spiritual tools I have gained to keep undoing layer upon layer of tension that has built up in my body over a lifetime of carrying and dealing with a terror I was unconscious of. It seems that process is symbiotic with the stem cells as evidenced by this day of great healing physically coming in the wake of a week of spiritual opening and work using the same tools. Only time will tell.
After physio, I had electric wave therapy as usual and then acupuncture which for the first time in a month was almost completely painless; I actually almost fell asleep! Another amazing event. And, interestingly, James, the acupuncturist, had said that the reason for the pain had been that because my muscles were very tense, when the needles were pushed through them it would hurt. Hmmm…
I did standing therapy after that, and Mom and I had a good and unexpected chat with Luca, one of the patient coordinators who happened by. Somehow our concern over getting funding to come back for treatment came up, and he told us that some of the Italian patients had asked their government for funds to do subsequent stem cell treatments, and one had even gotten some funding. He described the long process that one had to go through in order to get official documents that one could use to petition one’s government with. But he assured us that everyone there was more than willing to help the process in any way possible. He also suggested other ways that patients and their communities had raised funds to enable them to come back, and we left feeling inspired – ready to go home and write letters and do what needs to be done to make it happen!
After the amazing morning, we had lunch and then my Mom and Dad and I went out with a driver we hired, Ms. Lee, to a wonderful little tourist street in Hangzhou. The afternoon was sunny and about 20 Celcius – truly a perfect afternoon. We bought some knick-knacks (Ms. Lee was a ferocious bargainer and got us some incredible deals), saw the working end of the Traditional Chinese Medicine Museum (where they treat patients and give them herbs), and then had green tea in a truly lovely traditional tea shop. It was served with an assortment of dried Chinese fruits, some seeds and some fruits and raw vegetables, all delicious and mostly unlike anything I had ever had before. We then went to Mom and Dad’s hotel room, rested for a bit (a little red wine helped) and then went to dinner. By 8:30 I was home and in bed after a truly splendid Good Friday.
The next day we all (Mom and Dad and I) were taken to a beautiful spot called West Lake by Dr. Chen, my Dad’s colleague, and his wife. Sadly I was tired from the day before, and was a bit overwhelmed by the incredible number of people there on a Saturday. But it is an incredibly ancient and beautiful spot, and most of the trees had just flowered and were gorgeous. Then we all went to a restaurant (according to Dr. Chen the oldest restaurant in Hangzhou, founded in 1930) for a late lunch which was possibly the best Chinese food I have ever eaten. Unfortunately the food, the heat, the fatigue, and really the effects of an incredibly profound and intense month, all culminated in a huge headache for me, and so we went back to he hospital soon after.
Easter Sunday we relaxed before our trip home, got packed, and went out for a foot massage. This is one of the most wonderful things in China! For the equivalent of around $20 CDN, you get seated in a very comfortable chair and have your feet soaked, your shoulders, arms, and legs massaged and then your feet thoroughly rubbed all while drinking some of the best green tea I have ever had. It was my third such massage (I had been there twice the previous week), and it provided a fitting, decadent, and well-deserved ending to a truly incredible trip.
Entry Filed under: ms,Uncategorized
