I am so thankful for the amazing response that I have been receiving here. I have heard from so many people that they are thinking about me and following me, sending prayers, thoughts, meditations etc…it gives me strength as some of the difficult phases approach.
Now it is time to describe what for many is the dreaded chemo. But before I do that a word on “the fight”. The word ‘fight’, as I see it, is not compatible with the philosophy of this treatment and I will try to explain why. I mentioned in the section “Why Dance?” that I am tired of fighting. When you are in a fight, you kick into survival mode, setting into action chemicals such as adrenaline and cortisol which in turn set into motion a heap of bodily actions – the immune system increases its activity, blood leaves the digestive track and focus shifts to the ‘enemy’ - the disease.
What happens when focus shifts to the ‘enemy’? Your world shrinks – you forget what is important: your place in the world, society, culture, community and family. It becomes about you and this causes a stress that further exasperates your disease. In the worst case scenario you end up fighting the ones you love the most.
These picture Admanda has received from her friend Jerry Houston, in Australia, illustrates this perfect on a macro macro level.
This picture represents so much. When we 'fight' we get so focused on the one little star (the disease) and forget the beauty and the multitude of the universe around us. Do not be the star - dance with the universe! God these steroids are good!
Of course I realize the whole concept of 'fight' is merely metaphorical but we need new metaphors to describe the healing process. So as I enter chemo and I accept whatever it is that will come and will not give it one thought until the tube is attached to my catheter.
Thesis: Can chemo be danced with?
Chemo: Day one
Wake up after a rather short sleep. The new catheter doesn’t allow me to get confortable so I convince myself that I will not be able to sleep, but as soon as I try sleep comes immediately. First breakfast and then a visit from Amanda who is experiencing a little angst over the chemo. “I mean they are putting poison into your body.” It’s true, but I try not to think about that. I try a little Australian “She’ll be right mate” and we smile. Actually, she doesn’t seem too worried – just had some thoughts about it.
Even if I have not been worried, I can say that there is one thing that I found really intriguing – the hallucinations that some patients experience during chemo. I actually think it could be kind of interesting. In fact, my grandmother, when she was passing claimed to see and interact with 3 of her past siblings. Also their are several patients at this clinic who have experienced such things as little green men and men in suit and ties coming into the room. So, when the brain is exposed to toxins it sees things that aren't there or Do they help our brains see really is there? So this could be interesting and I will be on the look out.
So if you are also slightly intrigued by hullicintations – sit back because have I got a story for you!
The Hallucination
I sit on my bed in an upright position with a large pillow propping up my laptop, trying to kill the 3 hours it takes by working on my blog. I actually have good flow and I only stop to think about what is actually being done to my body briefly.
After about two hours I gradually start to experience strange sensations, a slight buzzing feeling in my head and then tingling feeling in my hands and feet. Becoming aware of the buzzing I look up above my laptop across the room and the scene of the room in front does a Matrix like ripple like the air over a warm field on a hot day. Not really as cool as I thought since the buzz, which is not entirely pleasant, makes you aware that your brain is not altogether with it.
I continue typing and after several minutes the screen starts to go a little blury when suddenly the words on the screen slowly…every so slowly start to run like wet ink on a paper dripping down the surface. I focu in and the pace picks up gradually and starts to stretch down the screen like spider legs extending from their opisthosomo. Suddenly the lines spread feverishly down the page like falling into a bottomless pit into which I am almost sucked down into. My eyes jerk open and my head has flopped foward towards the screen. .....Woah.
Let's try that again! Back to typing more buzzing then nothing for a long time. But then being focused on the screen, a warm wet feeling at the entrance of the catheter sets in, which first inches down over my collarbone and continues down towards my chest. It occurs to me that the catheter may be leaking and I calmly glance down and witness a green glowing liquid like some kind of toxic waste running down my chest! I jerk back from my snooze back to reality once again.
Most of you are thinking why not just go to sleep? Well, I find this interesting so please do not say that I am mad. The chemo has simply sharpened my senses not destroyed or dulled them. Please notice how healthily and calmly I can tell you the whole story.
I continue to write. This time I feel myself nodding so I almost sense there is another experience on the go. Just as I come to this realization I hear Dr. Fedorenko's voice coming into the room, but as I look up from the screen I
see the bright and coloruful Anastasia's lower body staring at me. My eyes dart upward towards the head area only to only to find Dr. Fedorenko’s face! I let out a shriek - my eyes rip open again to reality.
But when look to my left by the table there is a large grizzly bear with a shirtless Putin screaming “second breakfast”!
I hope you have enjoyed my story. I get a lot of inspiration from E.A. Poe and Axel Green's blog about his hullicinations. Of course none of this happens to me except the buzzing and the ripples. And of course the fact that second breakfast does arrive. Oh, and, yes, they call it second breakfast.
Second Breakfast
For me, 'Second breakfast' evokes romantic images of the lovely Hobbits of the Shire in Lord of the Rings. Now that I am in Russia, however, it will always have a new image. I think of that scene in Rocky IV where Rocky is just about to fight the genitically enhanced ironman Drago. They stand at the center of ring facing off and you can see the rocks turning in Stalone’s head; he’s thinking “man, this guy is a muscle machine, what has created this freak of nature?” Rocky puts out his gloves and Drago approaches. Drago slams his fists down with an inhuman force. As he does this he appears to read Rocky's mind by answering all of his questions: with a heavy Russian accent he says “second breakfast”.
So second breakfast, on chemo, is much more like Drago than the Shire. It usually consists of a slab of meat and two baked apples. Honestly a lot has been written about this on various media, but before chemo I quite enjoyed it. I can even say I like the ox tongue with the apples. Now, though, I am experiencing the common symptom of loss of appetite and I cannot eat or even think about food. I am forced to use modern art to deal with my second breakfast.
But no nausea or loose bowels though so I can live with loss of appetite and some art.
Then as I am finishing and I need to practice some dance steps with chemo in our preperation for the final dance. So day one dance moves: Ballet, Irish Dancing and The Mecarena.
After I am disconnected it really is not at all bad except you know that you are under the influence of something that is not quite pleasant but yet not entirely unpleasant. I suppose if you sit and focus on it to much it could be a bit unnerving but I go into Amanda to discuss our experiences. This a great way to cope.
Of course she, who was a little worried, feels nothing and I, who had no thoughts, am a little freaked. We talk for several hours – you know teacher babble - all the way up to and through the 4 pm infusion of steroids, which, for me, provides an enhancement to the unpleasantness.
To try to shift focus I go out and sit in the park to read and feel better. When I come back I feel really elevated and eat some dinner and await the last steroid infusion. It goes quickly, but afterwards it is impossible to sleep. My body is tingling down to my toes and I have no focus – I cannot watch a movie, can’t read, can’t sleep. It is a pretty long night and I start to wonder how I will be able to handle the next session at 10.00 tomorrow morning.
Chemo: Day Two
I wake up early and feel the same and wonder if the upcoming infusion will exasperate what I am feeling. Don’t get me wrong its not bad, I just don’t want to add onto it. When breakfast arrives, the first one, I have zero appetite but decide to force it down anyway. The result is that I immediately feel better! "Russian breakfast numma 1. Is nice!"
When it is time for the treatment I feel totally normal. And this time you won’t believe what happened! No you won't, I have fallen out of the circle of trust now. But please come back to me and I will try to be honest...a little here.
So, nothing happens. I pretty much feel no affect. Time flies by and I read and listen to a podcast. That simple. The only real symptoms I feel is a slight uncomfortable buzz and loss of appetite and I have to force down a little food, often skipping 'second breakfast'. Sorry Drago. And btw, Drago, you were totally juiced up and were genetically minipulated - at not a thing to do with 'second breakfast'. Besides, Rocky and America won and we learned a lot from that movie.
Then, more dance steps for our preperation. Today's steps are slow dance, The Waltz and The Jitter Bug.
In the afternoon I lay on my bed to get some rest and the air conditioning pumps into my room and I curl up under the covers and snooze. Feels so good. Sleep takes me into the steroid infusion at 16.00 (4 pm), which again feels like nothing. Amanda suggests that we go for a walk in the park.
In the park is where it happens friends. Day bloody 2. With cane in hand, Amanda suggests that I walk down a few stairs to take a short cut. Stairs don’t like me but it is a short cut. We walk out the back door and start along the normal path that stretches through pleasant trees and crosses over a road that leads to a gate. This is where I normally turn left walk 10 meters turn left onto to the parallel path. This time though I am walking without my cane. Amanda notices immediately and says “I am about to cry.” Except she pronounces ‘cry’ in a weird Australian way. You can't say that word with a rising diphthong! The 'y' in 'cry' has to go down - you know 'down' is 'sad'. But wait! I am not sad I am glad! And then I cry.
The mathematician, Amanda is logical though, which is good. “Ok, if we are critical what can this be attributed to?”
1. It had been cold all day in the room, which always helps.
2. The other explanation can be all of the steroids, which kills inflammation. If this is so than I do indeed, as Dr Fedorenko has claimed, have an inflammation. There are, however, few doctors in the west who recognize this. Regardless, this is great because there are no shortages of scientists who show how inflammation can be treated with diet.
3. The other explanation is that my nerve system has started to be put at bay, which is the optimal news. Here my Italian side celebrates "Die rogue-cells die....but ehhh there is no vegence in my heart."
4. Finally: "Second Breakfast" - with iron Drago pronunciation
Honestly, I don’t give a flying flop why. I walk the circumference of the whole park for the first time, further than I have walked in months. Like the Flavor Flav from Public Enemy says: "Yeeeaaaahhhh Boy!"
For once in my life I don’t push it too far, but as we head back I get an attack – a bladder attack. I will not make it and there is no Ivan the Terrible to piss on in this park – but there is no choice, I find a tree and strike an inconspicuous pose - the boogie woogie (AfroAmer jazz dance) where you keep knees together and hop forward. Very inconspicuous and I fit right into the park scenery. Besides, I can only assume that with so many MS patients visiting this hospital the luscious gardens can only be explained by the extremely fertile effects of human urine. We go back for dinner – I am tired.
The final infusion gets me wired again and once again I can’t sleep – my feet are electric. A film seems possible, however, and I watch an independent movie “Short Term 12” – Oh man I cry my eyes out. Sure the chemo right? Well anyone who knows me from childhood knows that I am a woosy – I have cried after nearly every single sporting loss in my career. I cried while watching "Wedding Singer." It is probably the chemo though.
Again, as I lay in bed something interesting happens. My feet are burning and all electric and keep my attention during the film. I try wriggling them to take focus off of the unpleasantness and I realize that I am wiggling the unwiggleable! I am the chosen one - I am the wiggler of my left foot.
Chemo: Day Three
Even though I don’t sleep well, I should mention that the discomfort from the catheter is gone. The ornaments dangle freely and carelessy from my neck.
Now time for the final rehearsal. Today's dance steps are Break Dancing, The Fox Trot, and oops we got a little intimate there.
This day is a breeze, chemo-wise, but it is hot and the air conditioning only dents the temperature. Walking on my own I stumble around the short loop and struggle, but it does not phase me. It is just a bad day, I reason.
Besides, the evening offers the same sensations from my foot despite the fact that I had been extremely warm. So I choose to see that as a positive sign rather than dwelling on my walk.
I have sleeping pills, but I don’t take them because all of the fluids being pumped into my system are wanting out and I pee nearly 20 times per night. Two flasks save me the trip to the bathroom, so sleep is possible. But sleep is difficult.
Chemo Day Four
The final day of chemo starts with no appetite at all. I cannot eat and I sleep right up until the infusion. Once again I feel no effects from the chemo and with both of us in good spirits, Amanda takes ridiculous dance photos of me during me and Ms. Endoxan's rehearsal. Since the incident on the floor I call her her true name. Eventhough we have developed a relationship it is challenging, and Endoxan will not cooperate. We try the Dirty Dancing finale move but she just won't dare to take the leep without a lake or pool of water. I try to dip Enoxan, but her head keeps threatening to fall off. Finally, I say "Hey. That's just be satisfied, it's good enough. Endoxan, we must try to get away from these perfectionist tendencies. We'll just wing it!" Endoxan just looks at me and swallows, or perhaps she lets drool run down her throat. I am not sure.
Soon after, however, for the first time I feel down. It would be ridiculous to think that it should be any other way, I just went through four days of chemotherapy! It is pretty much a breeze. According to Dr Fedorenka this is because of the lovely Endoxan, which is much milder. The chemotherapies used in the rest of the western world still have a signigicant mortality rate. Here? 0%.
So that is it. I dance and embrace Endoxan the whole way and it is …..pretty easy. To cap off the last infusion and say goodbye to Endoxan I dedicate this film to our time together. And I bow, look it into her shiney head and thank her for her time; thanking her for my new nerve system.
As we start to film I had been feeling low. But wouldn’t you know it, we get laughing and suddenly I am happy – just as Mr. William James had said.
Seriously though, I couldn't do this 2 weeks ago.
Conclusion: You can, without a doubt, dance with chemo: metaphorically and literally - You can even pinch it in it's Endoxan on the way off the floor!