Let the Dance Begin

"What's on the other side of fear? Nothing."

- Jamie Fox

Waking up in the morning to the sunshine streaming into my window, I realize that it is way too early. The room is quite hot since the window faces the east and even though I like my nice corner room, I am quite happy when Dr Fedorenko says that I will be moving down to the isolation ward in the afternoon. It is a lot cooler and there are other patients there to socialize with, which is nice.

This is of course a new phase with lots of unknowns and scary treatments. But now it is time to put together everything I have been working on for the past years - letting go, acceptance and taking responsibility for my disease. It's time to start dancing instead of struggling.

My things should be packed by 1:00 PM (13.00) and I have the whole morning to prepare. Now If there has been one theme on this journey thus far it would have to be ‘time’. You see, I love my good old fashion watch that Annica has bought me for my birthday. It’s really a great piece of technology, you just look at your wrist and shazam…you know what time it is.

The problem is that heeding the advice of my wife, who is usually right about things, I leave my watch at home. It is a nice watch and I cannot wear it in isolation anyway. Just easier without or?

Now technophiles might claim that wristwatches are obsolete with all of our modern and new smartphones and PCs. And beyond that they are unnecessarily complicated. When arriving in Moscow, which is one hour ahead of Stockholm time, this means pulling out the tiny dial on the side and spinning the hands around to the correct time – a waste of ‘time’. Our amazing technology just cinques itself and you always know the exact time. Right. Well, not our devices.

Our devices all show different times. My PC has remained on Swedish time, my iPhone is one hour ahead of Russian time and Annica’s iPhone is on local time. Of course you don’t need to be a mathematical genius to keep track of this but you’d be surprised at how confusing it is – it turns out that we never know what time it is.

So in other words, we don’t know whether we are moving down to isolation at one o’clock Stockholm time, Moscow time, or Kazakhstan time. So when Annica says that she will be over at 11 am to help me pack, I assume she means Moscow time, but my computer says Stockholm time. She calls frantically from the hotel at around 11.20 – Moscow time, but I am not sure because I am holding my iPone when she calls. “I am so sorry I thought my iPhone was on Kazakhstani time!” "No, silly mine is on Kazakhi time." Everyone got it?

Anyway she arrives quickly and we start to pack and move down to await my date with stem cell extraction!

Catheter Time!

In the middle of packing I am informed that it is time to put in the catheter in my neck. I meet Amanda on her way from her insertion. She has her newly inserted catheter jutting upward out of her neck leaping and flopping in all directions like gaudy Christmas ornaments hanging on the back of flexible pipes. Beautiful really, but what is holding it up? A spike in your neck vein.

I enter the room and climb up on the table lying on my back to prepare for insertion. I am told to place my hands under my butt and turn my head to the left. For me this is difficult since I have a lot of spasticity in my left arm and in this position I fear one of my so-called startle reactions; my nerve system is heightened and I overreact to stimuli and well…spaz out. To explain, I once made myself some cold porridge (luckily) when suddenly one of the children thrust open the front door. My reaction to the sudden noise activated my left arm throwing the contents of the bowl into my face and showered the wall. BTW did you know that if you if you don’t clean up oats immediately it becomes like concrete? Or so I have heard.

Anyway, this is the point I am trying to get across as the doctor is sticking a rather large catheter into a major vein in my neck. I am pleading with her “just tell me when you stick me. OK?” She replies with a “Yes, Yes”. You know not a real 'yes', but one of those 'yeses' that mean "I hear your whining and I do not understand you and now I am going to cover your face with blanket and douse your neck in alcohol". One of those yeses that we all experienced soon or later.

Suddenly the prick comes followed by some jerking and tugging, then a sensation of something being shoved where it, if we are honest, does have an earthly business of being. "Deal with the pain" I tell myself then I am reminded of a tip from Amanda. When faced with pain she sings repeatedly Tina Turner’s “What’s love got to do with it”, but instead replaces ‘love’ with ‘pain’.

"What's pain got to do with it. What's pain got to do with it."

Brilliant. I give it a go, but it doesn't feel right. My blog is about my dance - how can use the dance concept? Then suddenly lying with my hands on my buttocks and head turned to the left I get a vision of a terrible epoch in human history - noneother than the 90’s hit “The Macarena”. So I sing:

When I dance they call me Macarena And the boys they say que soy buena They all want me, they can't have me So they all come and dance beside me Move with me, chat with me And if I could I'd take you home with me

No need to replace words such as ‘love’ and ‘pain’ here, this song is so painful that it makes me forget that there is even a lab technician stuffing a rod down my jugular! And then suddenly I sing “Hey Macarena” and roll off of the table and it’s over. (Admittedly I replace ‘boys’ with ‘girls’ in the lyrics –and that makes me feel good about myself)

The point of this blog is not to blame, judge or criticize, but we who were young adults in the 90’s stood by and let the Macarena happen.

As expected, it feels extremely uncomfortable with these ornaments dangling from my neck, but luckily Amanda has an extra tube-like thingy that I can put on my head which lets me tuck in the rods so they don’t dangle. I kind of look like a rock star – it is said.

I move into my newly renovated room and honestly it makes the hospital in Gothenburg look like something out of “One Flew Over the Cuckoo’s Nest.” Newly painted walls, newly renovated bathroom, fridge, micro and a small table to eat at. Of course the rules change in this ward. Now all visitors have to wear the entire hospital garb to protect the patients with little or no immune system. For me Annica always looks dashing in green and I ask myself what I wouldn’t give to get this woman?

At least 50 camels.

Farewell Annica

It is Annica’s last day and she stays for as long as she can and we sit in the darkening room and talk. It feels great that we have done this adventure together and we are incredibly thankful for this amazing life changing opportunity. Everyone who lives with someone with a disease like MS knows the toll it takes on loved ones, so having some time together is great! If nothing else she has built up her arm muscles radically.

When it is time to go, it is hard and she says it feels like when we had said goodbye in France for exactly 22 years ago – that feels amazing to hear. We hug and she leaves. Time flies though - especially without a clock.

Stem Cell Extraction

At 7.00 am sharp Dr Fedorenko rushes into the room and informs me that it is time for the stem cell extraction. I feel a little anguish over it – this is because I have heard that one of the other patients took 2 days to collect her 3 million stem cells, but in total had gotten over 4 million! More is better, I reasoned. So on the one hand I desperately want to take out my catheter rods while on the other I want to maximize on my stem cells.

Fear of missing out. That is something I have been working on. I decide to turn it over, once again, to the universe. Everything leading up to this Moscow journey thus far has seemed … guided, so I decide to not worry and see what happens. Whatever happens will be for the best.

In my new bed I had slept poorly and was hoping to take a nap during the 6 and a half hour extraction period. However, there is construction going on in the hospital and I swear they are jig sawing beams within the same room. Of course, I am not complaining, they had considered closing the hospital while renovating, but decided they had too many patients to help!

I can live with a little sawing. In fact my wife sleeps on her back and the jig sawing just makes me feel close to her and I doze off.

In rolls the stem cell machine. In brief it basically pumps blood from your body, circulates it through the machine and filters out the stem cells. Then it pumps your blood back into your body. That’s it! For 6 hours.

Stem cell machine_edited

stem.cells.2

stem cell machine.panel

And then six hours of stem cell extraction and a twenty hour fast from the night before and its time to gorge!

Stem Cell Count

2 hours later after reading out in the park, they find me and tell me that

they have enough stem cells and we can remove the catheter.

Back inside, the nurse is extremely cordial and asks me to look at what she has removed. For those doing the treatment it is better not to read further. Or what's on the otherside of fear?

Can someone please explain to me where this was in my body?

And BTW, as it turns out ‘more is not better’ – the amount of stem cells needed is calculated by body weight so it does not make a difference whether you have more. But I should know this after so many years in Sweden where ‘Lagom är bäst' (not too much not too little) - even when it comes to stem cells! Jösses. Who would of thought? (I did generate an exceptionally high number – not that it matters though – just saying).

So the next day we start chemo and I really will try to keep in line with my blog’s title: just dance with the pain and except it – don’t fight it. Oh and when I dance please don’t call me Macarena.