Of course the HSCT treatment is not easy on the body so there are a number of tests required that will ensure that the patient will survive the treatment. The tests begin directly on the day after we arrive.
It seems to only be me and another woman, Amanda, from Australia who are beginning this phase together. So we get to meet and chat outside of each waiting room. Amanda is suffering from RRMS so her prognosis is excellent.
I can’t tell you how fun it is to do these tests – I am serious. It is the first time in years that I am doing tests to determine how I can be helped. All the tests I have done over the past years have been to determine the progression of my disease with the purpose of medicating symptoms. Can’t sleep? Here are some sleeping pills. Feeling down? How about some nice anti-depressants? Can’t walk? Get a wheelchair. And so on and so on. Now we are moving towards a goal instead of monitoring my decline and patching me up or even worse coming to the conclusion “Yep, you are getting worse – next patient please.”
What is more, all the tests, for the most part, are new! Beginning with a sonogram of my legs with slippery slimy gel running up and down up and down my thighs, hamstrings and calves is nice…. Then some breathing to test my lung capacity and finally some X-rays of my nasal passages and skeletal system and lungs.
In addition there is a nice doctor to follow me around to help with all the translations.
The next day I am told not to eat breakfast before doing a sonogram on my stomach, kidneys and liver. However I am given breakfast anyway, and once again the language barriers come into play. I try to say “No breakfast” but the woman nods her head and uses body language (she walks with her fingers through the air) suggesting that I would walk off the food before the tests? So I eat a little.
The tests begin with the sonogram and I am happy to be using my new translating app, where I finally can communicate and inform the technician that I had in fact eaten by mistake. How you can eat by mistake is difficult to explain, and even more difficult with a translator app. So all of the nurses are hovered over the app in anticipation, but of course the technology gods fail us and we are wasting precious time. Suddenly the woman says in perfect English:
“What do you want to say?”
“Oh. Yeah…Umm …I ate by mistake.”
“You ate by mistake? But the doctor told you not to eat right?”
“Yes. It's hard to translate, but the woman with the food walked with her fingers like this. And I thought that meant that I should eat.”
"OK.” (Perhaps more puzzled than annoyed)
Is there anyone out there familiar with a culture who walks with their fingers – meaning ‘should eat’? There must be one some where. I could use some help here.
Assuming she is a little annoyed I unleash the deep and complex JC-irony (which is apparently universal). As she glides the device of the sonogram over my stomach I ask her politely: “Could you tell me if it’s a girl or a boy?”. I receive a smile and possibly a laugh.
Finally this day ends with the dreaded MRI – brain + spine. Now for those
of you who watch too much TV you probably have a vision of the patient lying on their backs and being led into a pod-like structure like something out of 2001. There are of course soothing Star Trek-like beeping noises and perhaps sentimental or even dramatic background music. Not so. In reality, the machines look similar but the chambers are far from the spacious tunnels you are used to seeing. Spacially, to continue with the 2001 simile, it’s like you are being stuffed up HAL's anus. "I can feel it Dave. I can feel it. My mind is going. There is no question about it." Yes HAL, my mind is going to, but we will just have to accept it until they pull me out of here in two hours. BTW my name is John. Any claustrophobics reading this? Yeah, you wouldn’t like it. On top of that they fit a Hannibal Lector-like mask over your face, which puts pressure on the bridge of your nose, bracing you head in place. Oh yes, slang for anus is 'can' which is also appropriate here. This is because when you are thrust up into the 'can' and the process starts it sounds and feels like someone is standing outside banging on the surface of an oil drum (can) with hammers. Now, imagine the sentimental music and soothing bleeps replaced by hammers on an oil drum – does not make for good film.
I have done several MRI’s before so I know what to expect. I also know that I have a heightened nerve system and react to every ping and pang which makes it impossible to get good pictures – I get a sedative! This means that you are rolled up into good old Hal and only have vague memories of walking back to your room, starting to become aware again some time later in the evening. It is not exactly fun, but not bad either - kind of like drinking Budwieser - no it's better actually.
Following the final test of the day, Annica wheels me out into town on the main strip and I go for my first wheelchair ride of my life. I am so zoned out that I can barely take it in. It is great to get out of the hospital though and experience the suburbs of Moscow for the first time!
The following morning I do a quick heart sonogram in the morning before receiving the results of my tests in the afternoon. The tests will determine whether I will be a candidate for the treatment or not. It turns out that Annica is really worried about this and Emelie, my daughter, is terrified that I will not get the treatment. Must be progress for me since I don't feel slightly worried. It feels like after everything that has transpired, the universe has it's intentions - this is going to work.
Doctor Meets Human - Non-Cybornetic Organism, Living Tissue over an Auto-immune Disease
Doctor Fedorenka comes into the room and hugs us and does not beat around the bush – no problems and we can start the treatment the next day!
First he explains their philosophy at the hospital and it turns out that I am not a cybernetic organism, living tissue over a metal endoskeleton (give best Schwarzenegger accent while reading) - I learn that I am indeed a human with a disease and not merely a 'sick brain'. (He mentions nothing, however, about whether I am sick in the head – your call) This is the first time that a specialist actually acknowledges my humanity. I almost cry - OK I do.
He goes on to say there is a 70 % chance that he can stop my progression with modern technology. And with 70 % heart and mind on my part that makes 140 % - in other words with the right attitude I have an amazing opportunity to heal!
Then I receive explanations of PPMS explained in a way that no one had taken the time to explain to me before. He shows a diagram of how the cells in PPMS differ from the other types and can be more aggressive and difficult to influence. He further explains how they attack myelin sheaths with illustrations of how the varying types of MS differ. He then explains that my form of MS is an inflammatory disease even if this is not recognized in W. Europe and N. America. In my experience even if certain doctors believe that PPMS is an active inflamation, they do not dare to say this without the consent of public health official's and governing ministries' support. This is so liberating, because even if you read about it on the net, I have had several neurologists tell me flat out “it is not an inflammatory disease because it has never been proven.” Logical fallacy anyone?
Brain trauma is also taken up. How does playing American and having multiple concussions weigh in? His explanations are again like being stabbed with a catheter in a neck vein – attention grabbing just a bit more pleasant. Perhaps nothing new per se, but just his way of explaining it to me like a human being that has a disease enables you to really take it in.
“You have had brain traumas, mononucleosis, malaria, bilharzia, borealis (lyme dis.), you went through a stressful situation at work, 3 kids etc… All of these things have stressed the body and mind and your genetic disposition has resulted in an autoimmune disease. For someone else it could result in cancer, ALS, Parkinson’s or any host of diseases.”
It is so simple and in a way what I have always known, but it just feels so good to hear it from a skilled specialist with a heart. Perhaps it is not a coincidence that Dr. Fedorenka has a background in hematology and has worked originally with diseases of the blood. In his world it is the heart that is the central organ that drives us.
Before leaving us he informs us that the following day I will be given
steroid infusion once per day combined with stem cell infusion injections during the nights. We also learn that between 12.00 noon and 9 PM (21.00) we are free to play tourist. Time to start this journey, but not before experiencing a little Russia.
