When I started to write this blog it's purpose was to keep the people who have funded this whole journey informed. However, while at the hospital some of the patients had read the blog and thought it could be helpful for others considering doing the treatment. I am not active on social media and never put anything personal on the web, but it is worth it since I hope that it can help and inspire others. And maybe, just maybe, you will even be a little entertained.
Another Catheter Please
We actually get a day of rest before chemo and a night’s sleep without a catheter. However, as soon as I have eaten and done my morning exercises, Dr Fedorenko comes in and informs me that it is time for a new catheter! Yayyy! This time on my right side. It seems that some people get them in the chest but of the patients here it’s about 50/50. So the question is do you want a long spikey hose stuffed down your neck vein or do you want one pierced into your heart? Unfortunately, you don’t get to choose. This, however, should encourage anyone engaged in the upcoming American election; at least you get to choose.
Humor and tragedy
“In this world there are only two tragedies. One is not getting what one wants, and the other is getting it."
- Oscar Wilde
In case you haven’t noticed, humor is a wonderful tool for pain. I once met an Irish professor who started philosophizing about humor, explaining how the Irish way of dealing with pain and tragedy is to laugh tragedy in the face. If it is true that we laugh to be happy, this makes complete sense. So just laugh at the fact that I have to lift my left leg up with my hands to get them into my pants. HA! HA! It doesn't always work.
So what does the Irish way have to do with me? Well, my dad’s grandparents both come from Ireland and well norms, even over generations, die hard. The first time I discovered that my family was different was during my grandmother’s funeral where my father and his brothers were laughing uncontrollably throughout the entire event. Well that is not entirely true. The laughter was broken on occasion when one of them would suddenly become dead serious, admonish the others for laughing and cry out: “Hey, hey! We are in mourning”. All would break out their best anguished expressions, which really just turned out to be a contest to see who could hold the expression the longest - then uncontrollable laughter.
That is not the end of the story though. There is more to me than that. For my mother’s side of the family, whose father was from Sicily, funerals and dealing with pain take on a whole new meaning entirely where there are emotional outbursts, screams, tears, fainting and even threats of revenge (usually after mafia hits). So that is a summary of my early life cultural conditioning.
Consequently I am kind of schizophrenic when it comes to my MS. Most of the time I joke about it as a way of dealing with the pain in order to be happy. But then there is the Italian side. There is this feeling of revenge that has been festering in my soul, which really never subsides. So even as I joke, I also take heart in the fact that my rogue cells’ days are numbered – and I hope they suffer a long torturous death - I think of the direct translation of Chemo in Swedish "cell poison". Yes cell poison! And when they are gone I will go to their funerals and laugh my head off - no mourning, however.
So what I am saying is that when I speak about the catheter, for example, it is really not so painful, it is just a little unpleasant - nothing to be afraid of. The point of my last post was actually just to point out that it is good to shift focus from pain and it is always good to get ideas about how to deal with discomfort. For example, I am a little nervous about the stem cell transplant since I use breathing techniques, but how do you use breathing techniques when you feel like you can’t breathe, as many do experience? BTW – I did not sing the Macarena and I never have and never will. So hopefully someone will have some ideas – “What’s breathing got to do with it” doesn’t work since breathing is, in fact, ...everything.
A journey into Brain Fog and its Resolution
I had planned on getting out to town to eat, but my catheter is too uncomfortable and Amanda, who has hers in her chest, feels pressure in a nerve in her back and cannot push me into town. So I stay and hang out in the lounge and meet some of the new patients that have just arrived. It is a Norwegian invasion.
Over the years I have had more and more difficulty following Swedish conversations that move quickly especially when there are several people. I thought it was just my Swedish in demise but realized when I was back in the States that it was actually just good old MS brain fog (or my English in demise?). Regardless of the language I struggle to follow lively discussions.
Trying to follow a conversation in Norwegian proves to be no exception.
I could have made it easy on myself but for some reason I start speaking Swedish instead of just explaining that it is demanding on my brain. It actually works ok in the beginning and it is kind of fun to be communicating with others in another language. And it does work.
Norway and Sweden used to be the same country until the Swedes let all of that oil walk away almost a hundred years ago. So the languages are quite similar. I guess it could be compared to a Scott trying to understand a hillbilly from the Appalachian Mountains, almost the same language with different registers and inflections.
The conversations go well at first, but the problem is that my fog is kicking in fast and the group is growing. One major obstacle here contributing to my fog is words that differ - words that force you to use your imagination. For example the Swedish words giraf (giraffe), kondom (condom) and olja (oil) are completely different in Norwegian. They say periskophäst (periscope horse), fröjdepinnepådrag (pleasure stick pull on), and arabmelk (Arab milk) respectively. So when the conversation, as it often does, starts to drift over into conversations about periscope horses covered in arab milk wearing pleasure stick pull ons, my brain fog overwhelms me and I plead for everyone to speak English.
Actually all the Norwegian words above are just made up – just Swedes poking fun. Actually though, this describes perfectly how exhausting it is to decipher words that are similar but yet totally different. And just when we start to speak English and my fog finally starts to clear Amanda, from Australia, walks in wearing a pair of thongs looking for a mate. She really does. But when pronounced in Strine, as they call it, it simply means “wearing flip flops looking for a friend”. As it turns out, it is not any easier in English. Language and brain fog - be forewarned.
Thanks to all the talk about giraffes, thongs and oil, I am half in a daze and a nurse leads me back to my room, ties me to a chair and gives me some brain fog therapy. It really clears my head.
Most people here seem to be ok about shaving off their hair, but others are more attached. For me personally I am convinced that my attachment to things has caused incredible stress in my life, which has inevitably lead to my disease. I think anyone with a chronic disease, which is stress related, must deal with this question sooner or later. Attachment to things, to how things should be, to what people have done to you, to what may or may not happen to you - all put great stresses on our nerve system. I am one hundred percent guilty of this and take full responsibility. I realize, just as Dr Fedorenko implied, getting this treatment will only help me if I change and live with heart; that means letting go of how things should be. Consequently, it does not bother me in the slightest to lose my hair. And hey, I look like a bad ass. Well I prefer good ass.
A teacher, with Lab equipment - how about a TV series called "Breaking Good"?
Reflections on Donuts - A cross-cultural minefield
The evening ends with a stem cell party where 4 patients will be celebrating their new ‘birthdays’, which I will write about more when I do mine in a few days. What is of interest here for this post is the donuts. I do not eat donuts, since I am a health food nut who denies himself most worldly pleasures, but the donuts are interesting anyway. Being a mere observer, I notice as the donuts start to disappear from the box and eventually there is one left. My focus shifts and when I look back, there is only half a donut in the box! There are sneaky Norwegians about! When I glance around trying to find the culprit, the donut has been divided once again! And then again and again! If the ritual is the same as it is in Sweden then the amount of times a cake, cookie, pie, you name it, can be divided depends totally on the sharpness of the knife. What is sure though is that whatever cannot be divided will be left on the plate. This anecdote illustrates just how deep the cultural chasms can be here at the hospital so be forewarned! And when the Australian grabs the last piece, all the Norwegians gasp.
One Final Observation – A Serious Note
One of the great things about being at a hospital like this is the comradery that develops. First off when you have a disease and are surrounded by suffering souls there is a certain transparency that does not exist in the “real world.” People are in general more open about their issues and problems and it creates an openness which is so energizing. As Amanda says: “With all of the great people, it feels like the treatment is something I am just doing on the side.” The other important thing you learn here is that there are many who have suffered more than yourself, which always gives perspective. Actually, I am amongst one of the worst, physically, but I also realize that I have had and have a great life – I have travelled, hiked, climbed, played sports – and I have an amazing wife and three kids, great mother and father, sisters, inlaws etc.. – I have more material things than I need. My life is still great regardless.
This makes me think of Anna, a 26-year-old patient here, who was diagnosed when she was 16! She only knows MS! Anyway, I think all of the other patients here in their 40’s, 50’s and even 60’s will be thinking about her a lot when she goes into isolation. Hopefully you will too. What an amazing gift it will be for her to get a chance at a normal life like all of us here have had the chance to have! And who knows, with another success story this treatment will one day be offered to everyone - in their own countries. So pray, chant, meditate, call out to the universe - do what you do - but give one out to her.