Let me dedicate this post to people who have felt disconnected from me by my attempt to joke about what I am going through. People want to know how I 'really' feel.
In a word, Chemos sucks, but I tried to make it fun. MS sucks, and I am trying to make it funny (it is never fun though). There are no shortage of people who sit around and shrink themselves down to that ‘star’ I talked about in my last post and try to 'fight' through chemo and even 'fight' through life. Before I had done that ridiculous dance film in my previous post I had felt really like 'fighting' the chemo, but instead I ‘danced’ with chemo (literally). Has anyone done that? By the end of the film I was laughing and happy even filled with toxic chemo!
So ‘dance', for me, really means to find joy in the difficult journey. Wheras 'fighting' just leads one to struggle against the journey. 'Dancing' got me through this difficult time and I actually had a blast!
Since I can put much of the pain and difficulty of this treatment behind me now, this post will try not to embellish and be ironic...too much. Here I will present more a treatise for myself and using this treatise I hope to respond to an article on www.healthline.com that had a link to my blog (so grateful btw). The article briefly writes some of the pros and cons about HSCT treatments and focuses in on risks such as shorter life span and mortality rates. And although the journalist fulfills her obligation of trying to present a balanced assessment of HSCT; warning about scams, lack of clinical evidence while at the same time still presenting optimism, she misses a huge point - at least conscerning the treatment in Moscow - The role of heart, mind and positive attitude.
So these are the things that I will attempt to address in this post.
Enjoy!
Life after Endoxan
With chemo behind me, I can still feel her smooth shiny skin and perceive the sounds of her tepid drooling. Her long tentacles, which once had reached toward me and penetrated my being, is no more. But I do spy her in the corridor, although she does not see me nor does she come to me again. Oh Endoxan, Endoxan
Ode to Endoxan
My dead Endoxan stands in the stagnant corner of the corridor.
She stands. She waits. She drips again.
Occasionally.
Bits of chemo drops from her throat from
Time to time.
And soon will drool into the mire of her next lover.
She also smelt a great deal.
Inspired by Vogon poetry
We have a day of rest before the stem cell implantation. Sleep has been a problem throughout but I tend to catch up during the days with small slumbers. This day is no exception.
What a day! I just curl up onto my bed with enormous pillows and start to read “Game of Thrones”. I like it immediately but can’t get past 3 pages without dozing. Anyway I doze in and out move back and forth to my book and slumber. What is amazing is that I am not even slightly restless.
After the afternoon steroids' infusion at 17.00 (5 pm) I get a boost. Amanda returns from a walk and she has had an epiphany. She knows how her life must and will change. You can read it on her post and It is really exciting to hear about so many of her conclusions and future plans.
Revelations About Life and MS
We meet for our favorite pastime – drinking coffee – and she tells me of all her plans and new found purpose. Her business ideas, her newly found belief in helping others, her attachment to things and rinsing away all the junk she has collected throughout the years.
Yes! Let's get rid of all the junk!
We sit out in the main lounge since we will be locked into our chambers for up to 10 days. She is currently carrying around a notebook and writing up every bit of information she can collect: books, films, quotes etc... Swedes will be interested to know that the concept ‘lagom’ has, according to her, changed her life.
Perhaps the most interesting part of the conversation is about dishwashers. Not a joke, and not of course an indicator of the quality of the rest of the conversation - I hope. So be patient. Anyway, she talks about the fact that when her dishwasher is loaded by anyone other than herself, she is forced to restack it; even when her well-meaning children try to help, she gets annoyed and sometimes even yells. Then she restacks anyway. This will become even more problematic if 'second breakfast' is introduced.
This anecdote perfectly describes myself. Not necessarily dishwashers, but I also have a need to rearrange. We conclude that tt is more about the symptom of not letting go – of holding on to how things ‘should’ be.
We also expect the same for explanations concerning MS. This is the toughest thing about MS - living a life with no answers. What kind of MS do I have? What is the prognosis? What should I eat? What symptoms will I get? How fast will it progress? What medicines work? Will the medicines kill me in the long run? And on and on. Answer: none and none and none.
Since we love control, it is the worst disease to have, because there is so little that is done within our modern healthcare systems that truly deal with its complexities. This consequently leads to more things to grip onto - complaining chronically about how things should be just builds up further toxic stress, more victimhood consequently leading to more progression of our diseases.
But even realizing that these examples above are only a minor part of the story we both recognize that this treatment is so much more than utilizing a technological process to receive a new immune system. This treatment is about really realizing and internalizing the issues that are causing ourselves to suffer. It is discovering what the true stresses are that contribute to our respective diseases.
Conclusion: Technology alone cannot fix us.
Being Reborn - Physically and Mentally
This is such a well-timed revelation since on the following day we are being given our new stem cells. On June 28, 2016 I get a new birthday. We get new healthy cells to replace the faulty ones, but it does not stop there, we also get a new body and mind - if we choose it.
in fact, beyond the new cells, every living healthy and unhealthy bacteria, parasite and fungi will likely be eliminated from our bodies. Even some conditions and toxins that we are not aware of will be eradicated. The floral of our digestive tract is totally reset and since up to 60 percent of our immune system exists in the gut and is connected to the brain, we get, in principle, a new delicate organism. That is why the stem cell party is so symbolic and important. It is our new birthday. But what will we do with our new lives once technology has done its job?
Now getting back to the dishwasher. Your old body, which you have more or less destroyed intentially or unconciously thanks to the likes of dishwashers, has been ravaged. What are you going to do with this new miracle of a body you have been given? Will you take the body, say thanks and continue on the same road following the same old toxic patterns? Will you continue with the same unconscious habits of reaction and stress? Will you continue with toxic relationships without being transparent about how you truly feel? Will you continue to blame others for your own failures and react to people who you feel treat you unkindly? Will you continue being jealous of others who appear to have it better then you? How will you be different when you are born again? These are all questions we have been asking ourselves.
To remedy this, Ammanda is going to get a muscular dishwasher, who must work topless and clean all dishes manually. And I am going to continue with my poetry.
The article on Health Line claims that HSCT stops the progression of 70% of sufferers of MS. For the 30% who are not helped it would be interesting to know more about their cases. Have they taken to heart Dr Fedorenko's emphasis on the mind and positive thinking? Have they ransacked their souls to find the root of their disease? There are no quick fixes in life this is a lifelong journey.
I have not yet become a part of the 70% yet but either way Dr Fedorenko's words stick with me in a daily mantra "heart, mind, positive thinking".
To help others remember this important idea, Amanda and I created a sign to hang outside on the door of the ward which everyone reads before entering.
This is what Amanda and I have discussed incessantly over the past week and our talks culminated by going into a private room where we were totally transparent - Being transparent is liberating. You should try it! The details we share are different, but the overall phenomena are the same.
A Detailed Summary of our Revelations
Here is a summary of our chronic disease anlalysis. Of course we are both convinced that sufferers of MS share many common traits. One is they become a ‘star’ thereby shrinking their worlds, which reflects itself in so many ways. Single 'stars' are not transparent and close themselves out from their closest friends, leading to enstrangement and self-focus. This can mean leaving all responsibility over to people that they love, putting immense burdens on them. It can be taking on the role of the victim – where you establish a belief about yourself that you have been unrightfully wronged. It can be constantly deliberating what is wrong with the world, focusing on how your bosses should be, how your parents should be, how your spouse should be, how you yourself should be, how the world should be. In a word it is a minute observer's chronic attachment to "what should be."
This is the summary of a mind with a chronic illness at the same time it is the summary of the average person’s mind as well. The chronic illness part that we suffer from comes from the combination of our chronic thought patterns and the extra physical stresses we have exposed our bodies to. As Fedorenko explains it, this combination can lead to any number of diseases.
New Hope
New hope for me came in a conversation with another patient - I experienced a 'new' me. A patient here at the hospital had first reacted to the ideas above and asked in a reactive manner: “So you blame yourself?”
“Yes…” I started but then hesitated. Wait at some point I had stopped blaming myself and others. Above all I had stopped seeing my demise as bad luck. And then I changed my answer. “No. I take responsibility for my disease. When you take responsibility you accept and then act. When you blame, you beat yourself up and fight anything in the way. You then attach yourself to your weaknesses and react. This furhter exacperates the disease.” It comes out just like that. I had never thought about it before.
So taking responsibility for my disease means that all the choices that I have made, both good & bad as well as neutral have all lead me to this point. What I am going to to from here on out? I cannot speak for everyone's choices and do not believe anyone deserves this disease by any means. Ok maybe that kid who spit on me on the bus in elementary school deserves it (damn Italian genes - Ok I forgive you). The point is that if this treatment is to work than one needs to heed the advice of Dr Fedorenka: 70% technology, 70% Heart, Mind and positive attitude. For me this implies taking responsibility for the choices that have been made that has lead to this disease.
"Health Line" Scrutiny
The risks outlined in Health Line mention such things as, scams, serious complications, shorter life expectancy or even death. The biggest risk, as I see it though, is never laying all your cards out on the table. Do you believe that you deserve to be cured? Can you use heart and mind to create a belief in recovery? Can you find happiness in suffering? Are you willing to come to terms with who you are and why you are in the situation you are in? Who are you without MS? All of these enquires need to be ascertained. Then worry about the physical risks if there truly are any significant risks.
What about the scams? Read on Facebook about the numerous success stories from Russia. My wife and I have had contact with people who were told it was only a matter of weeks/days before they would never lift there butts from their wheelchairs; and now, they are walking normally.
What about the lack of clinical evidence? Clinical evidence actually requires, you guessed it, clinical trials and there are so few. There are lots of clinical trials for expensive pharmaceutical companies - that may or may work in the short term. This is not a conspiracy, this is a rational business model. If companies make milions off MS drugs - cures are not a good business model.
In the ony clinical study done in Sweden, it was declared that HSCT does not work on my PPMS. So we were at first sceptical about Russia. But this Swedish study was based on one small sample size with no follow up studies. And then, we began finding several PPMS sufferers who were not only halting the disease, but improving! When you do not have anything to lose and you meet 'real' people - a first hand source - who have gone through it successfully, it gives authenticity to the organization.
One of the biggest differences I notice here is the doctor-patient relation. In Sweden there are two words for our practioners: 'Doktor' and 'Läkare' - where doctor describes the academic crudentials and läkare means 'healer'. Sorry to say I have yet to meet a 'läkare' until arriving in Russia. Is this why they have such a high rate of success here? Has anyone met one of those before? Modern 'healer' are like dinosaurs - and Dr Fedorenko is like Barney in this metaphor! He hugs me almost everyday and yesterday got a high five! This adds to the feeling of not be an object, a sick brian and nerve system under a microscope 'a mere star in the Milky Way'. Here you are the vibrant universal human that we are.
And if this treatment gives me what I believe it will give me I think the life I will be living will be much more, even if shortens life-expectancy, which my disease will do anyway. And if I become the first person to die from this treatment here in Russia, well hell, I have given it my all and taken a risk and that is my choice - but that’s not in the cards. I have got work to do. Poetry to write.
Final Clip
After a day long of these discussions thoughts and ramblings I unconciously walk back to my room quite elated, determined. Everyone stops what they are doing; “John! Get out the camera!”
And this is what we experience:
Two weeks before I could not walk without a cane and sat in a wheelchair.
Upcoming: Stem Cell Party & isolation
Bye for now!