Archive for March, 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
As the capper to what has been quite a busy week, I have my bone marrow extraction tomorrow morning Friday Mar. 20 at 10:30 am here in China (Thurs. Mar. 19 at 8:30 pm in Calgary). It looks to be the biggest of all the procedures I will undergo while here. I cannot eat for 8 hours before and can’t drink anything for 6 hours before – thus I am planning on having a big dinner tonight! Then I will go under a general anaesthetic and they will siphon 200 ml of bone marrow from my sacrum. Freaked out yet? I am. Well, not so badly. All the other procedures have gone extremely well, literally without any problems at all, so I have every confidence that this one will too. And as my Mom pointed out, it is probably a good thing that I will be out cold for this one – I don’t think it would be much fun to be awake. Then I am instructed to stay in bed for 24 hours afterward. I can say with some certainty that I am looking forward to this after the week I have had!!
As to the week, in short, the lumbar puncture went extremely well and was in fact even easier than getting an IV. They laid me down, put a saline IV in my arm, gave me some IV valium and I was relaxed and mellow and half asleep in a few minutes. They wheeled me in to the operating room, and alll I felt was a little poke in my back, and what felt like 3 minutes later I was out in the hall way flirting with the nurses! I had to lay on my back for 6 hours without lifting my head, but I was so relaxed and tired from the valium that it went by pretty fast. A touch of a headache when I got up too fast was the only effect, and a bit of stiffness in my spine, all normal.
Anyway, another delicious dinner awaits, so I must go.
March 19th, 2009
The first week in China is turning out to be quite packed. Yesterday (Monday Mar. 16th here) I had an MRI (which seemed to take at least 45 minutes), a chest X-ray, a lung function test, and that was just the morning! Then I had my first stem cell treatment, this one IV. It went off without a hitch. In fact, I felt a bit drunk (well, tipsy…) after it was over, and then I had an enormous amount of energy. I practiced some Chinese with my parents and wore them both out! Apparently the energy is normal after the IV stem cell treatment. In any case, the first hurdle is passed.
As the IV stem cell treatment went well, I am cleared to receive my first lumbar puncture stem cell treatment. It will happen at 2:00 pm on Wed. Mar. 18 here in China which is midnight in Calgary (12:00 am) on Wed. Mar. 14; China is 14 hours ahead of Calgary.
Today I had another busy day. I started off with physiotherapy at 8:20 am for an hour. The therapist, Tina, was very sweet and worked me hard. There has been a lot of muscular atrophy over the years, and so she started to work on areas that are the most affected – the abdomen, in fact all the core especially. Then after a short break I had electric wave therapy which consists of pads being placed on the muscles in my legs and then an electrical current run through them making the muscles jump a bit. This is to help build back muscle. Also somewhat easier than doing situps! Finally, after lunch I had acupuncture in my arms and legs hooked up to an electrical pulse again. So, I suppose I have to say I feel energized…sorry, it was over the plate. Anyway, the physio, electric wave therapy, and acupuncture will be my daily routine 5 days a week from now on. I am really looking forward to getting my muscles back in proper order along with my nerves! I think it will be hard work, but that’s what I am here for.
On Friday Mar. 20, though, there will be no physio, etc. as I will be having my bone marrow transplant in the afternoon! As I understand it, some of the bone marrow in my hip will be extracted, and they will then process it somehow to take stem cells from it which will then be injected in my spinal cord by lumbar puncture maybe next week. The bone marrow transplant is only scheduled for sometime on Friday afternoon between 2:30 and 4:30, but I will try to pin down a time later in the week.
So almost half of the major procedures I will receive are all this week! I think I will probably not be doing much sightseeing this weekend!
March 17th, 2009
It is Mar. 10, 2009, less than 24 hours before my parents and I leave for China. It is an auspicious day in many ways, and I woke up in the night last night feeling I had been lax in keeping up with this blog over the last couple of weeks.
First of all, today is, in my own personal calender of things, the 16th anniversary of the day I was officially diagnosed with MS. An infamous anniversary as the neurologist was cold and, after making my parents and I endure a very apprehensive wait for over an hour, went on to explain that pretty much I should just go home and get a wheelchair and forget about any hope. My Mom has a much clearer and less positive recollection of the events that took place, I think!
Over the years I have forgiven this neurologist, and see him more as a poor soul put in the unenviable position of having to communicate very difficult news without any preparation or training in how to do so. In any case, fortunately, his coldness helped create in me an anger against the arrogant absolutism of western medicine (as I saw it then). I was especially angered by their use of the word ‘incurable’ with regard to MS and other diseases – incurable engenders fear and hopelessness which is totally unnecessary as, really, MS is only incurable within the paradigm of western medicine at this particular point in time! There is absolutely no reason to conclude that it is incurable in all healing traditions, or that western medicine itself will not find a cure for it in the near future.
I say fortunately because from this anger I felt came a stubborn drive to not give up hope and a defiant sort of openness; a willingness to try any kind of therapy I could lay my hands on – my motto, gleaned from my friend’s father, being “I don’t care if I have to dance naked around a fire waving eagle feathers; if it works I’ll do it!” And so for the last 16 years I have tried every kind of therapy I could get my hands on that I could afford. As I didn’t know the cause of my illness, I didn’t limit the kinds of therapies I tried in any way; I worked on the emotional, spiritual, mental and physical levels constantly trying to heal as best I could on all levels. A blessing that did not look to be such when delivered as a cold diagnosis.
But I digress. I have not written on the blog recently for the simple reason that the healing is already begun. The last two weeks have made it clear that this is, you might say, a spiritual journey. I have noticed that the anxieties that have come up in me due to the stress surounding this trip, have been spiritual or emotional in nature. I am hardly worried about the physical voyage or physical treatments at all. Some are surprised at this when I tell them, but I lived in Korea for 4 years, so being in foreign country not knowing the language is not as big a hurdle for me as it would be for many others. As to the treatments, I have tried so many different kinds of therapies that one more engenders little fear. What does shake me to the core is the fact, the miracle you might say, that I am going on this voyage with my parents.
I finish this post after arriving in China on March 15. I was so stressed and anxious about the trip that I felt I could not focus or get clear on what I wanted to write. I hope what I wrote is of interest anyway, and that all the other things I wanted to write will come back to me so I can blog them in the near future as I settle in here!
March 15th, 2009
My apologies to anyone who has looked on the blog lately and found nothing. The leadup to coming to China was very stressful and I was not coherent enough to write anything! The trip itself was good, although I have been so tired that I have slept or rested most of the time I have not actually been travelling. Also, the internet connection in my room in the hospital did not work. Alas!
In any case, my first stem cell treatment will take place at 2:00 pm Monday Mar. 16 China time, which is 12:00 am (midnight) on Monday morning in Calgary. It is IV and not a lumbar puncture for the first one. The doctor explained that they have found it most effective to do it this way because (as far as we could make out): 1) it is not as invasive a procedure as the lumbar puncture and so serves as a good test to make sure my body reacts well to the tem cells and 2) it gets stem cells into my entire system, not just the cerebro-spinal fluid.
Thank you to everyone who has written or called or sent thoughts and prayers my way. They are deeply appreciated, and helping healing to occur already in profound ways.
March 15th, 2009
