Posts filed under 'ms'
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
Well, I suppose now that I have a blog, I had better blog! I hope that word is, in fact, both a noun and a verb. One thing that occurs to me to post is the interesting fact that the stem cells that I will be receiving are “ethically friendly” as I like to put it. Although China certainly didn’t have the same ethical problems with doing research on embryonic stem cells as we had in North America, what their research found out was that the embryonic stem cells don’t really work. They are, you might say, too adaptable. Apparently, as I understand it, when they tested them on animals, the animals grew really strange, awful, monstrous tumours with hairs and teeth and eyes and the like! They had no control over what kind of cell the embryonic stem cell would turn into. However, umbilical or plaacental stem cells (also called adult stem cells I believe) work very well, and are what I will be receiving, along with stem cells harvested from my own bone marrow. They are also, of course, ethically friendly. I find this fascinating as it makes the whole furor over stem cells rather moot!
February 22nd, 2009
Welcome to my China blog! I have never had a blog or really done anything with a blog before, so it should be fun. Please excuse any blog ‘faut pas”s I may make! I hope you enjoy it. I will try to keep up with it while I am in China (and before, I guess) but I don’t know how much the treatments are going to take out of me.
At present, I am slowly getting things organized to go and studiously avoiding thinking too much about the treatment. It seems like such a huge experience that I feel overwhelmed just thinking about thinking about it. So I am just praying – a lot! I want to thank already all those who I have talked to and who have offered me their suport and prayers. I really, deeply appreciate it. Your support and love is what will make this a wonderful, miraculous trip!!
February 17th, 2009
Welcome to Stemcellschina.com. This is your first post. Edit or delete it, then start blogging!
February 16th, 2009
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