It has been over a year since I last posted , and although I have thought about blogging a number of times, I never quite got to it – until today. Why? (Or why not?) Well, it has been a difficult year since I got the stem cells, and I have been meaning to chronicle it in brief, so here goes. After recovering from the trip itself, I went to a math conference in Ottawa at the end of May. This was great in many ways, not the least of which it forced me to do a lot more walking han I had been, which started me on an intense month of June doing quite a bit of walking almost every day. However, it all came crashing down at the end of June when I got an infection in my elbow. It required IV antibiotics for 5 days to contain and kept me in bed for 10 days unable to move due to a fever which kept me completely incapacitated. I don’t know why the infection happened – whether it had something to do with the my immune system having been compromised by the stem cell treatments, or the overexerrtion of the previous month, or if it was just bad luck. But, when I asked her, Dr. Hong told me that the stem cell treatments should only have helped my immune system. In any case, it took me until August to get much of my strength back; and then the next blow came. After seeing a nurse at the MS clinic, who suggested I try self-catheterization after discoverring that I was retaining about 400 ml of urine all the time, I really did try it, and promptly got an acute UTI (urinary tract infection). This put me on antibiotics for another 10 days. Once over that, the UTI recurred about a month later, although less severely, and I had to go on another course of antibiotics to take care of it. Then the fun really began. I got the idea in my head to try megadoses of vitamin D as a therapy. I was convinced this was a good idea because for once both Dr. Johnson (my MD) and Dr. Chu (my acupuncturist) agreed that it might be helpful. So I took 50,000 IU of vitamin D per day for two weeks. It backfired. My stomach became very sensitive, and my immune system was thrown way off balance. Oh, and on top of that it sapped my strength. Dr. Chu thought it would take about a month for my system to recover. A few weeks later, though, just to add to the fun, I managed to pick the perfect time to have my immune system shut down: swine flu season! About this time there was a positive, though. My Dad and I went to a lecture by Dr. Terry Wahls who had in two years gone from being in a power wheelchair with secondary progressive MS to riding her bike 5 miles a day through a combination of intensive nutrition and neuromuscular stimulation. To say I was inspired would be a vast understatement! And as an footnote, Dr. Ashton Embrry, who had organized the talk through his charity Direct-MS, had included a summary of a new treatment for MS called CCSVI in the handout he gave to all attendees. Enough for today, though.
July 16th, 2010
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.
April 12th, 2009
The last lumbar puncture on Wednesday went about as smoothly as possible. You know that feeling when you are nervous about something and then when it is over you think, ‘why was I nervous about that, again?’ Sort of what it was like. No problems to report after (ie no headaches or pains) and no side effects other than I feel really good. Well actually, last night I woke up at about midnight and felt very uncomfortable – especially on my left side – and irritable, to the point of anger even, but it passed after half an hour or so and I went back to sleep. Another perhaps hopeful sign that things on my left side are waking up! But there are some other things moving that are responsible for feeling good (and possibly waking up), too – or maybe it is all just working together…
In any case, I have wanted to share what has been happening on a more spiritual level. I have found myself thinking a lot about how to share this, and I couldn’t come to any kind of conclusion – so I thought I would just share my experience and forgo a lot of mental/intellectual stuff (which has been processing in my head around this). Anyway, I had mentioned in my previous blogs the spiritual journey that this trip seemed to be for me, and how terror of a very deep kind seemed to be what I was getting in touch with. An existential level terror that I had throughout my life associated with my Mom (not that she did anything, of course, just that I had associated it with her) I had been aware of and had worked through a lot and doing a lot of work on here. But about two weeks ago I realized that whenever my Dad would come over to my room (usually Mom has been my caretaker in the mornings – roughly 9:00 to 2:00 – and Dad from 2:00 to 8:00) I would experience a bodily terror around him. Then I had a powerful dream one night where I was playing with my Dad’s father (my grandfather) on a farm on a lovely, quite warm, late spring/early summer day and my grandfather jumped into a pool of clear, cool, lovely water with a few strands of straw floating on it. I jumped in after him and the feeling of being immersed in that water was stupendous – peace and joy and love – the kind of feeling you never want to leave. And I saw my father sitting across the way from this pool inside behind a pane of glass. It was a very emotionally charged dream and a day or two later I understood that the terror I felt with my father was terror that I had gotten from him that he had gotten from his father (and perhaps he from his, and so on - I didn’t see that far). And when my Dad came over that day I was able, and it felt right, to ask him directly if he had felt terrified by his father – to confirm what I had intuited. He said he had, and we had a beautiful talk about it. Bringing it out seemed to dispel the terror in me, too, and I felt it much less in subsequent days.
At the same time I was reading the book ‘A New Earth’ by Eckhart Tolle. This book has been showing up in my life all over the place for the last year or so, but never had it felt right to read it. Then I found it in the small collection of books they have here, and I borrowed it. Reading it was a journey in itself. What he talks about is what might be called ‘spiritual awakening’, which he explains is just the consciousness that whoever ‘I’ am is not who I think I am, or my experiences or anything else – ‘I’ am the consciousness that sits behind all that and is aware of all of it. I am the ‘I AM’, if you will. I won’t say any more here because Eckhart Tolle says it much better and also as I said before I don’t want to get down in intellectualizations. My experience while reading the book, though, is what was astounding. Eckhart Tolle in the book actually says that reading his book is transformational in itself and that its purpose is not to play with ideas, which are in the mind, but to serve as a transformational tool to help get beyond the mind to the ‘I AM’. And amazingly, I got it!!!! Somehow I was able to step back from my mind and my experiences and observe them. All I felt at first was a relaxation in my shoulders, roughly between my armpits – I can feel it now even as I pull back and observe myself writing this. And astoundingly, this was the exact physical location in my body where I felt the terror! I was a bit overwhelmed by it all, and just went on with my day – this was Sunday – but I began practicing stepping back from my mind and emotions and everything into this little place of relaxation between my armpits. The next day I continued practicing and began to notice that if something happened that would make me feel badly in some respect, if I just watched and felt what I was feeling and tried to get to the place of peace, whatever it was I had felt would just dissolve. I had to practice ‘doing it right’ because it was a skill I was very new at and it didn’t work right away all the time. But it always worked. And what is more, I began to notice that as I got bolder and tried to do it with stronger emotions, after the emotion had dissolved I was left with a residue of not only a feeling of peace, but often a little burst of joy as well. As I continued practicing during the day, the peace and joy became more sustained, and I noticed that I was more at ease with everyone, laughing more, being silly and fun – enjoying life! And this was happening with everyone, most noticeably with my parents!! I also noticed I had more energy and felt lighter. This thought of lightness of course brought up the thought of ‘enlightenment’, a term that I have disliked more and more in recent years. It had always come across to me as some unattainable spiritual peak that only a few ever reached and that mere mortals like me wouldn’t have a hope of ever attaining. I also had had the rather cynical thought that anyone who claimed to be enlightened was, by definition, not – the very act of claiming it precluded it. (I had heard, on a related note, similar things said about understanding Zen and/or quantum physics – that anyone who claimed to understand either by definition didn’t). But then I looked at my experience and thought that I liked the kind of ‘enlightenment’ I was experiencing a lot better. It was (is) so simple. More like saying ‘take it easy’ or ‘it’s all good’ or something like that. It felt like a little child going over to a friend’s house and asking “do you want to come out and play?”, that suddenly life was not so serious anymore and where I had been the child who is sad and won’t come out to play because they had more important things to do – like practising violin in the common caricature – I had returned to being the child that just wanted to play and have fun. What a wonderful feeling! “Be ye like little children” – isn’t that close to what Jesus said? So I feel very much like I have been reborn into a new way of being that is at once simpler and more profound and is full of joy and peace – real joy and peace and not derived from external things. In fact it has beome much clearer that external joy and pain are really the same thing – both keep me away from the space of peace and joy I can be in in an instant when I step back from either of them. They are transient where what I have found might be called eternal – not in some high falutin’ sense of eternal like I had imaged that word before – but in the sense that the awareness, the ‘I AM’ is not affected by anything transient – it is that which watches the transient come and go be it a cloud or death itself. Many more thoughts and realizations and connections have come to mind, and Eckhart Tolle’s book brought almost all of the spiritual ideas and sources of wisdom that had most influenced me together in one place: Among them the Bible, in particular the prophets and Jesus, A Course in Miracles, the Tao Te Ching and the poetry of the Sufi master Hafiz, among others. So it felt like the end of a phase of spiritual development for me and a transition into another. A final marker of this came on Monday night – really Tuesday in the early morning – when I had one of the most powerful dreams of my life. I was talking with my Dad in a very impassioned way, pleading with him to try and convince him of the reality of spirit. I was so animated I had tears running down my cheeks and finally something shifted and he got it, and with tears streaming down I ran to him to embrace him and right before I hugged him I saw he was me – I was hugging myself, and our embrace was beyond description. It then took me a full hour to wake up, and I felt drained as I have rarely felt before. This joy and happiness has continued all this week and it has been a blessed week. I continue to practice this new skill of ‘being present’ to everything, and a world of new challenges and realizations opens up.
It seems fitting somehow to be able to write this on Good Friday. And I thought of a nice connection with my experience. In the same way that I felt the ‘eternal’ peace and joy in the same place in my body where before I had felt terror, it occurred to me that the suffering we experience acts as a gateway of sorts to link us to the eternal in precisely the same way that Jesus’ passion led to his resurrection. Easter blessings to all.
April 10th, 2009
It is getting increasingly hard to keep track, but last Friday was my 4th (of 5) lumbar punctures. And it went very well. I am feeling like an old hand at this… The recovery was a bit faster than usual, although I rested most of Saturday and was tired. Sunday morning (yesterday) I actually felt energetic enough to go out of the hospital with my Mom for a little over an hour. We walked to a wonderful little park near the hospital – just set beside a road with a lot of trees and flowering plants, well-tended, some grass, and a little calm lagoon. There was a man fishing in the lagoon, and a woman washing clothes. And this not 50 metres from a major road! The little bridges and walkways are really pleasantly done, made out of stone, carved what seems to be by hand. Absolutely lovely. And we walked by a little space where there were some public exercise machines, apparently put there by the city to encourage citizens to get out and exercise more. In that park, they would get me out that’s for sure! And there were a number of people using them. Mom figured if they put a playground for kids next to it, it would be perfect. The weather is very humid here – so much so that we have rarely seen any blue sky, much less a clear sky like in Calgary. And it has been raining a lot. But yesterday the rain was not so cold as it has been, and no wind. It was a pleasant spring drizzle, and the sun even shone through the clouds briefly and warmed me up (Mom was warm from pushing me around!) Hangzhou is truly a beautiful city. Little parks like the one I mentioned are everywhere. The people here seem to take collective pride in making their city beautiful and a lovely place to live in. For me this was only the second time I have been out of the hospital since I arrived, and so the trip proved a good omen. The time I went out before, the cold and wind gave me a bit of a chill, and along with the exhaustion I felt from the treatments, I didn’t want to risk getting sick and thus delaying or having to cancel some of my treatment. The price was too high! But I feel stronger on all levels today. My spirits are good, and physically I felt strong. The improvement in bladder function that I noted after the third lumbar puncture last Monday seems to have stuck, and so I have gone to the bathroom only once during the night in each of the last 4 or 5 nights. Hooray! And I seem to be sleeping better, which I sense is deeply healing on many levels. I have more dreams and awake with the crazy, new sensation of feeling – wait for it – rested when I get up in the morning!! lt is one of those things that it has been so long since I felt rested that I had forgotten what it felt like. What a blessing. So I feel more peaceful overall. The sleep has dovetailed with the spiritual growth and transformation that has taken place and that I have been working hard on. I now feel I have done at least a large part of what I was here to do, and there is peace and a deeper gratitude – a calm after the storm of intense spiritual work. Not, of course, in the ego sense that I am somehow “there” or “done” growing - there are new horizons opening up on all fronts. But that I have a little respite from the heavy going. So I am appreciating that. One more lumbar puncture on Wednesday Apr. 8, most likely at 2:00 pm here again, and then a couple of days of recovery and the treatment will be over. Given that I seem to be recovering more and more swiftly after each successive puncture, I am hopeful that by the weekend I will feel good and will be able (finally) to do a little sightseeing. The weather will hopefully cooperate, and my Dad’s colleague Dr. Chen and his wife have been so kind and earnest in wanting to take me out to see some sights (they have taken Mom and Dad out, albeit seperately, a few times) that I would really like to be able to go with them, even if only for a few hours. There is a famous place nearby called West Lake that I would like to see. And it would be fitting to end the trip on such a happy note with Dr. Chen and his wife. They have been an integral part of our stay here – so helpful and kind and generous for one thing, but on a deeper level too. I found out yesterday that the amazing way in which my Dad was able to come here (because Dr. Chen just happened to live in Hangzhou, the same city the treatment is in) is actually even more miraculous. My Dad told me yesterday that in fact he had not sought out Dr. Chen in this at all, but that in around November 2008, Dr. Chen had emailed my father out-of-the-blue regarding his daughter wanting to come to the University of Calgary to study mathematics as my father’s student!!!! Then my father mentioned my treatment an everything fell into place. Wow!
April 6th, 2009
I had my third lumbar puncture on Monday, and it again went well. In a slight complication, they gave me the valium earlier than usual, and I had to wait longer than usual before actually going in to the operating theater. The result was that the valium had essentially worn off when I began to get the lumbar puncture itself, so I was conscious of the entire procedure – not something I want to repeat. It wasn’t bad, but the doctor poked a bit in the wrong direction at one point and I felt a bit of pain shoot down my right leg for an instant. Totally normal and without any effect except that I groaned a bit! The poor doctor – her name is Dr. Hong – she is so nice and was very apologetic afterwards! She said she never wants to give her patients any pain. I think that gives some indication of the extraordinarily high level of care I am receiving here. I mean really, how often do you hear about surgeons apologizing for their errors in surgery (except in a court?…), and this wasn’t even an error. My Mom said that little pokes like the one I experienced are the norm in spinals, and, really, it is the experience of having a completely pain free spinal (like I had for my first two) that is out of the ordinary!
But my thought was really how lucky I am to be an adult going through this process. The scary part of having a lumbar puncture is the thought that someone is going to stick a needle in your spine! The actual experience is not bad at all. I am able to breathe and pray and take my mind away, but most of the patients here are children, and they are terrorized! It breaks my heart – even when I was getting the last lumbar puncture, I could hear one little girl, her name is Abby, screaming in terror because she isn’t able to understand what is happening to her. And her extreme agitation, of course, makes the procedure that much more difficult and painful in a downward spiral. They had to just forego her lumbar puncture and try to get an operating room where they could give her a general anaesthetic. And then they detected a heart murmur that hadn’t been there before, and her Mom, Jenny, was so worried, and I am not sure they could even do the general anaesthetic. And Jenny is here alone with Abby, who has, I think, (this may not be quite exact) quadraplegic, spastic cerebral palsy, is in a wheelchair full time, can’t speak, has no control over her limbs, and, Jenny said, has had up to 70 something seizures in a 24 hour period. Abby is eleven, Jenny had to give up a really good job to take care of Abby, her husband is a cop and they have two more little boys. I think they had to take out a second mortgage on their house just to afford this treatment. And I know only a fraction of their story! My God!!! I don’t think I complain about my condition too much – I have many problems, but that’s not one of them! – but if I am ever feeling hard done by, all I will have to do from now on is think of Abby and Jenny and the other heroic people who come here to remember how good I have it and how lucky I am!!
The children are heartbreaking, but the adults are even more amazing. There is a patient Russ who has Muscular Dystrophy. He is in his 50s and has had it all his life. Also ALL his (I think 3) siblings also have it! And he came here with a caretaker (also named Jason!) who is Russ’s stepdaughter’s husband! The courage, stamina, sacrifice, and just general spirit and good will of the other patients here is truly humbling and awe inspiring.
This combined with the incredible staff make this a truly blessed and healing place. I really feel so fortunate and blessed myself to have been able to come here. And what I have said about all the staff doesn’t even come close. All of them, from the cleaning ladies (one of whom brings me food every morning without me asking!) to my caretaker (the cleaning lady’s husband, who spends the nights in my room to give my parents a chance to recuperate themselves and sleep well at a hotel nearby!), to the nurses and therapists and doctors and patient service representatives (who can translate and are eager to help with ANY problem that comes up in or out of the hospital) are each and every one some of the kindest, most caring, loving, friendly people, as well as being extremely skillful and professional at their jobs. They make this place such a nurturing and healing environment that it is a pleasure to be in! It is more likea 5-star hotel than a hospital!
My next lumbar puncture, injecting my own stem cells cultured from the bone marrow they extracted two weeks ago, is tomorrow, Friday Apr. 3 at 2:00 pm China time. I am hopeful it will go better than the last one – ie that the valium will knock me out for more of it!! 
Also, Monday’s puncture seems to have had a better effect on me. No headache or leg pain, and on Tuesday night I didn’t get up at all to go to the bathroom. This may not seem like much, but when my usual is between 4 and 10 times a night, this is great! So I hope tomorrow’s puncture will be even morer free from side effects and full of healing. They say that one of the first signs of improvement for MS patients is increased bladder control, so I am hopeful. But I don’t want to give any false hope either. Jenny said to me that she is not even telling her friends and family the hopeful signs she is noticing in Abby which are, perhaps, a result of the stem cells. She reminded me that we are here with no expectations for any improvements, and that she did not want to get anyone’s hopes up back at home only to have them disappointed by the hopeful signs being just wishful thinking. So there are some hopeful indications for me, but I offer her advice to all – don’t expect anything. But keep hoping and praying!
April 2nd, 2009
Today is Sunday here, and it is the first day since I have been here that I have not been either exhausted or had treatments all day, or both. I feel like sharing a bit of the what you might call spiritual healing that has been going on for me over the last weeks. From about the beginning of February, I realized that this would be a big spiritual journey – so big I couldn’t even comprehend it. So big that I began spontaneously asking everyone I know for their thoughts and/or prayers. And it has not disappointed. Although it may sound strange, my feeling from the beginning was that the spiritual healing that would come from this trip was the main thing – that any physical healing would be, in a sense, secondary; that I had to try this therapy but that it probably would not be the final healing for me. I was clear however that it was a crucial stepping stone towards healing that would come. Perhaps it will simply take a bit of time for the stem cells to do the healing. I am not sure.
The magnitude of the spiritual importance, however, was clear from the beginning, and several key events have unleashed such a deluge of realizations and healing in me that I have been hard put to it just to keep my head above water. The first such event was one I have already shared with many people. My Dad is here with me and my Mom, and my Dad was able to come because a colleague of a colleague of his (my dad is a professor) is a Chinese man, and just happens to live in the same city in China where this healing facility is located! And my Dad was able to come and visit him for 4 weeks at the same time as my treatment!!!!! Given then number of cities in China where this man could have lived, I don’t think it is too big a stretch to call this a miracle.
I really began feeling the intensity of spiritual transformation about 2 weeks before I left – roughly at the beginning of Lent, Ash Wednesday, as it turned out. I didn’t get much else done after that, and 4 days before we left, my Mom brought me a chapter from a book she had been reading that she wanted to share with me. Our relationship had been very strained for many years and we had both been working very hard on it and ourselves, the fruit of our labours being the fact that we could even consider going on this trip together at all; 5 or even 2 years earlier it wouldn’t have been possible. But the chapter she showed me was something she had found detailing an incredibly deep explanation for my deepest psychological/spiritual issues which were also at the root of the disharmony between us. What it said was that I had made the interpretation very soon after conception, yes in utero, that “I did not have the right to exist” which gave me a lifelong existential terror and rage at the core of my being. This is profound in itself, but the miraculous part is that I WROTE THOSE EXACT WORDS IN MY DIARY IN 1996!!!!!!!!!!!!!! I had already come to the same conclusion during a period of deep, introspective depression. To see the identical words in print in front of me that I had written in my diary almost 15 years ago was a shock of such a profound nature that it is literally beyond description. The fallout from that shock has been the spiritual journey of this trip. I have been brought to tears more than once in gratitude for the gift of the healing that has ensued. I have begun to feel the terror and release it – to allow love to enter and soothe that void in my soul. I have seen deeply into the pains and sufferings of both my parents which my own existential pain had precluded me from understanding before and I have seen that all the agony and blame I felt towards them was simply the projection of my own pain that I could not comprehend and that the only cure is to love both myself and them – to heal by understanding that anything that is not love is merely a lack of love, and thus to move to fill the lack with love. This loving of myself and my parents has been my prayer and my practise in every moment I have been here. Every morning I sit with my Mom and we laugh and joke like we used to when I was a child, and it feels like we are children again, splashing in puddles in a gentle, warm spring rain, poking at the worms. And with my Father, I see his pain and suffering, and that of his father so clearly like I was unable to see before. I see the pain of all men of his generation, how a sensitive, noble soul like his was forced to cut off his feelings in order to survive, and how the fallout that it caused affected me deeply in my existential void. I see it all clearly for the first time, and feel able to finally make changes to heal myself in relationship to him and to love him for the incredible man he is in surviving the sufferings he had to face so successfully. And the best part is that there is no longer any blame – I can love my parents, and I see above all the grace that has brought us all together in the exact way so that we can each help the other heal from our deepest wounds. I am overwhelmed.
The revelations will continue, and work will always be there to do, but love has come back to my life and my gratitude is unfathomable.
March 29th, 2009
After the second lumbar puncture on Wednesday, I felt good all day Thursday and then, in exactly the same pattern as after the first lumbar puncture, I got a reaction starting about 7:00 pm on Thursday night. This time, though, the reaction was different than the leg pain from before. I had a bit of a headache when I went to bed on Thursday night, nothing serious, and I slept well and deeply – some vivid and varied dreams. But after breakfast on Friday morning, the headache was worse, to the point where all my therapies were cancelled. And as it hurt only when I was vertical; bedrest was (thankfully!) prescribed. I stayed in bed all day and interestingly felt very fragile emotionally. So I meditated and prayed and got through alright. The headache, however did not let up. That night (last night) I was extraordinarily thirsty all night, drank about 1.5 litres of water, and must have gone to the bathroom 10 times! Made for a fun night. Fortunately, in between trips to the bathroom i again slept very deeply with intense dreams, so I didn’t feel too tired this morning. But at breakfast this morning (Saturday) the headache as worse than ever. I had to lean forward while eating because it was too painful to sit up straight! Needless to say, I was back in bed quite quickly. As the morning progressed, things felt a bit better, and at lunch I could sit up and eat although I felt light-headed and tired and had the strange sensation of my head seeming to want to ache, but being somehow not quite able to get there! After resting this afternoon, things seem better to the point where I can sit up and type this blog without pain. All-in-all, my reactions seem to be totally normal (if rather uncomfortable) and none of the nurses or therapists or doctors seem to be concerned in any way. In fact, the only reaction from them was the delivery of the notice of my next lumbar puncture to occur on Mon. Mar. 30 at 2:00 pm here. This is good I figure – apparently there are no problems that are enough to alter the treatment plan at all. I just wish I could go a bit longer before the next treatment gives me another reaction Hopefully the next one will not be so painful – but then again, if all the discomfort is just the stem cells working their magic, I am more than willing to suck it up and take a bit of pain and discomfort! I am hopeful that the deeper sleep and more intense dreams are a sign that the nerves in my brain are waking up and healing.
The other notice they gave me today was that (assuming all goes well with the lumbar puncture on Monday), the next lumbar puncture will be on Fri. Apr. 3, probably at 2:00 pm here again, although I will have to confirm that time later in the week. The interesting thing about the one on Friday is that it will inject the stem cells cultured from my own bone marrow into my cerebro-spinal fluid. I should apologize here for a little lack of clarity – the procedure I had last Friday which I called a ‘bone marrow transplant’ was really not a transplant at all in that 200 ml of bone marrow was taken from my hip, but nothing was ‘transplanted’ back in to replace it. It was used solely to culture the stem cells which will be used in the lumbar puncture this coming Friday, which I suppose you could say will ‘transplant’ them back into my system. I don’t know. The problem, of course, is that we are doing all this in China, and the use of english here in general is, at best, imprecise!
Thank you again to everyone who has left a comment. It is really wonderful to read your thoughts and feel your care and support. It makes all the difference and truly makes my day!
March 28th, 2009
The second lumbar puncture was even easier than the first. I was a bit nervous waiting for it, but once the valium kicked in, all was good. It was really less traumatic for me than getting a regular IV put in my arm. Again I had to lay flat on my back without lifting my head for 6 hours afterwards, but the first 2 hours were essentially sleeping waiting for the valium to wear off, the next two chatting and having some food (no water or food 2 hours before or after the puncture), and the last two watching Ghostbusters – bit of comic relief. I felt more comfortable with the whole procedure this time. I slept pretty well, no headache, and just a bit of a stiff spine this morning. No problem at all – except for the interesting fact that it is impossible to execute a complete sneeze with a lumbar puncture stiffened spine! But I felt good this morning. Also, every day the weakness from the bone marrow transplant wears off a bit more, so that helped me feel better, too. By the way, the next lumbar puncture is scheduled for Mon. Mar. 30, probably at 2:00 pm again although the date and time are tentative at best at the moment. The next one is a bit different – they will inject the stem cells that they cultured from my bone marrow. That is why the date may change – they have to time it relative to how well the culturing process went. Usually about a week, they say, but it can vary.
But I feel like I am digressing from what I really want to say today and just giving (albeit important) news. I finally have enough energy to blog about some of the other wonderful things that have been going on here and not just the basics of the treatments. The first thing is to mention the effect of the first lumbar puncture. All was uneventful until about 36 hours after (Thursday night last week for me here) when I felt an ache starting from my left buttock and travelling down the outside of my left leg to my foot and ending at my 4th toe. A sort of dull ache, and I could feel the beat of blood flowing. I took no notice of it because I was focussed on the bone marrow transplant that was coming up the next day (Friday), but that night the ache was still there and even stronger than before, strong enough that I had to take an Advil to help me sleep (I figured that given I had just had, essentially, surgery, It would be worthwhile to have a good sleep!) Then the next morning an astonishing thing happened. I was lying in bed (enforced bed rest for 24 hours after the bone marrow transplant) and the vice-head doctor came to see me to check how I was doing. I had not met him before, and I told him about the ache in my leg. I had mentioned it to some of the nurses, my assigned physician, Dr. Hong, and my parents, and we were hopeful that it was a good sign. However, when the vice-head doctor checked the strength in my legs by pressing down on them and asking me to lift them up one at a time my left leg was stronger!!! For anyone that knows my condition, this is astounding as it has always been my right leg that has been stronger!! And the vice-head doctor commented “so your left leg is stronger” – the fact that he had never met me before just adding weight to the astonishment everyone around me, and no one more than myself, was feeling. So something good appears to have happened already as a result of the stem cells! Hooray!!!!
The weakness caused by the bone marrow transplant masked any further awareness of this hopeful sign as my whole body was weak for 3 days and so I couldn’t tell if anything was stronger (in fact I was beginning to wonder if I would ever feel strength in me again!) But I had an interesting insight on Monday that seems to have paved the way for another astonishing gain. The insight was that, after really straining to do my best in my physio workout on Monday morning – you know clenched teeth trying to do sit-ups, etc – my neck really hurt on Monday night to the point that I couldn’t fall asleep for over 2 hours. Or maybe you don’t know in the sense that I realized that I really do push myself waaay too hard and, more importantly, I realized that I compensate for weakness in all other parts of my body by straining my neck and shoulder muscles – literally, it seems, trying to use them to move, say, my legs. This perhaps doesn’t sound like much, but it came as a revelation to me; not only from the physical point of view, but from the emotional/spiritual side of things too where I seem to have somehow been able to release, at least to some extent, my deep-seeded need to push myself beyond my limits all the time! Anyway, the next morning in physio (Tuesday) I talked to my therapist, Tina, and we decided that I need to do the exercises but really focus on not using my neck and shoulder muscles. Things appeared disasterous at first as without the compensation the muscles in my legs, back, abdomen, etc. were revealed to be much weaker than I thought. However, I was less tired after the physio session, and had no pain in my neck that night. This continued yesterday (Wednesday) and this morning, but this morning an amazing thing happened. I was trying to open and close my right leg – move it laterally lying on my back – and it was really difficult. But then somehow, I was able to switch the intention of my brain from moving the leg through using my shoulder and neck to just sending the signal directly to my leg and letting my neck and shoulder muscles relax. And my leg went crazy!! Suddenly I was opening and closing my leg at 3 times the speed, and did about 5 or 6 repetitions where I could barely do 2 slow ones just moments before!!!!! My Mom and Tina were as astonished as I was! Then the same thing happened with the left leg, 1 or 2 slow, laborious movements, and then all of a sudden a switch and 5 or 6 fast ones!!!!! So hope abounds!!! Of course not all my muscles have responded this well, and there is a lot of work to be done for me to retrain myself not to compensate, but something seems to be shifting. We told Dr. Hong about this, and she said Congratulations!
March 26th, 2009
The next lumbar puncture is Wed. Mar. 25 at 2:00 pm in China (again, 14 hours earlier in Calgary). It is definitely less stressful than the last one – the lead up to it, that is, anyway. The stress at the moment, for me, is the fact that I have been exhausted following the bone marrow transplant last Friday. And they are working me hard here! My day begins promptly at 8:30 am with an hour of physio. My physiotherapist, Tina, is great. She is about half my height, but works me hard – she’s tough! The big revelation today was that I use my neck and shoulder muscles way too much to compensate for my weakness in other areas. So today I was focussed on lifting my legs, etc. on their own without straining my neck. It took a lot of concentration as my compensating habits are well ingrained. Also, it’s not fun finding out I am weaker than I thought!
Then right after physio I have 30 minutes of elecric wave therapy – pads on my leg muscles conducting current through them; actually more pleasant than you might think. The torture of the day, though, is the acupuncture session which happens for 30 minutes sometime between 11:00 am and 2:00 pm each day. It is a curious quirk of Chinese culture that they are very punctual, but also very fluid in their scheduling. Pretty much I just show up when they say (a bit early as a rule) and don’t question the changes in my daily schedule that will almost inevitably occur! Anyway, I have had a lot of acupuncture in Canada, but it was not until I came here that I found out how pampered I have been. The acupuncturist here puts needles in my arms and legs, and every time there is at least one point that hurts enough to make me howl out in pain. Unfortunately, this seems to incite the acupuncturist not to pull back but to try again – usually with more vigor! Then he hooks the needles up to electric current which makes my legs spasm even more strongly. So I don’t look forward to acupuncture really (not that I have ever really looked forward to being poked with, albeit very thin, needles). I console myself with the idea that the acupuncture is awakening my leg muscles, something I am more than willing to endure a little pain for!
The final therapy of the day is called standing therapy. It consists of standing (surprise…) on a slanted piece of metal pushing my toes up and heels down so that my calves are stretched. This is only possible for me to do because my hips are strapped to a vertical board in front of me with my legs pushed straight with pads between the board and my knees. Does that make any sense? The point being to get me standing straight and to stretch out my hips, lower back, hamstrings, and the muscles that lift my knees (hip flexors?). And after being strapped in for 30 minutes a day (40 minutes today) things are indeed stretched! I literally fall back into a wheelchair afterwards as I have no strength in my back, and then collapse in bed for at least half an hour.
I have been going to bed by 8:00 pm every night. I feel tired just writing about my day!
March 24th, 2009
Well, the best way I can say it is that the bone marrow transplant was both very stressful and anti-climactic at the same time. It was scheduled at 10:30 am here on Friday, and all was ready, not too nervous, but then there was some sort of delay in the operating room (OR, I guess) – hopefully not too bad for the person (people) involved – but we had to wait an extra 2 hours. As everyone can probably guess or relate to, the waiting kinda sucked. But finally the wait was over and I was whisked away in my bed down to the OR. I haven’t had surgery since I was 3 years old, so it was interesting to see the ceiling whizzing by. Got to the OR, got on the operating bed on my right side to take the marrow from my left hip, and then I laid there listening to all the activity (in Chinese!) around me wondering when the general aneshetic would start to kick in so I could stop thinking about size of the needle they were going to use! And then, after what seemed like less than a minute, the doctor says, “OK, all finished.” I was stunned and impressed. The anaesthetic was so good I literally felt nothing. What a relief! Half an hour in the recovery room flirting with the nurses in my (very) limited Chinese and I was back in my room. A few hours a bit groggy, and then I felt fine. 24 hours of strict bedrest was imposed, though; but as I was weak as a babe, it was no problem. Still recovering and weak today (Sunday), but the most major procedures are now over. The next lumbar puncture will be on Wednesday afternoon Mar. 25 here (14 hours earlier in Calgary). I will try to give a more exact time when I can.
Oh, I forgot the best part! At 8:00 on Friday morning, while I was still dozing in bed, I had the unique experience of having a nurse come in and shave my entire hips and bum – with a safety razor no less! Certainly an interesting way to start an interesting day!
March 22nd, 2009
Previous Posts
