Sunday, September 23, 2012

Quote of the day: ice cream

"when you are dead, you're dead....and until then...there's ice cream."  - Patrick Jane from The Mentalist.

I'm having Mint and Chip right now.  Later this week I'll have Praline and Cream with warm Cherry Amaretto topping.  mmmmmm.    If you had 14 minutes to live, what kind of ice cream would you have?

Friday, September 21, 2012

The 10K, challenges and problems getting to Seattle.

I finished the 10K of the Terry Fox. They closed the race when Cheryl finished her 5K. The participation ribbons were gone. The organizer drove back to let me know the road wasn’t closed anymore. I went faster the second 5K, ending at 2 hours 45 minutes.

Thanks to the six people who sponsored me for the Terry Fox run: Alex M, Sarah, Kate, Lene, Cheryl, and two anonymous donations. Due to the whole run being done by volunteers, there is no overhead fees so all the money goes to cancer research, treatment and quality of life.

We are having an odd heat wave here, up to 30 C. in many places, so I got quite sunburned, even with lotion. I think Linda must have as well. I wore a ‘Sweet and Toxic’ top over a sports bra. I have a plan and plan to reverse the edema mostly by creating only muscle mass and no fat. To get my natural body fat down to 8 or 9%, something ‘unhealthy’.

It is hard to know what is healthy when your own GP won’t see you and is a pout due to my not dying and getting off his list like his other palliative patients. So no exams, or blood tests or anything at all. It is why I am leery of taking more pain pills; if something goes wrong, how can I feel it if I am over pain medicated?

Being in this twilight place makes me act like it doesn’t matter what I do. It does. I pay the price, which might be passing out all the time, or falling asleep and not waking for 22 hours. But when no one shows any concern at all, then what difference does it make? If I can figure how to live with a heart that can never be recorded without 30-50% erratic beats and no one cares one way or another, then why should I? Same with breathing, with bleeding, with overheating, with everything. If people around can be cranky, irritable, silent, surly and they don’t feel every off beat of their heart and don’t have feelings of drowning every few minutes or reflexive gasps because I mentally forgot to breathe, then why smile?

I do smile, and try to not raise my voice, I am mild at last because for others nasty is a luxury, while I have a wall of hard and cruel and anything which can see beyond that is something to smile about. And when I can’t see beyond, then I just fake it. Regardless of religion, or even atheist or agnostic, the goal of reaching the aspect of love in our interactions is a goal; not to those who ‘deserve’ it but to see the best possible in everyone. As famous atheist Thomas Jefferson said, “Every human being must be viewed according to what it is good for. For not one of us, no, not one, is perfect. And were we to love none who had imperfection, this world would be a desert for our love.”

We are jammed on funds, having so much to pay off from the ‘lean years’ that though we can go to Seattle the next week, because it is technically high season and rooms are $140+, I don’t know if that is going to work or not. It sucks. But if life wasn’t hard all the time, unrelenting for years, then…….. (shouldn’t there be a lesson here?).

Blogger has put in the ‘new’ interface which takes me four times as long to try and get things look as they used to – it is ‘better’ and the choice to go back has been eliminated. Joy.
Sometimes I choose to do what is hard, because what I live in already almost unbearable; I want to know what can be bourne.

Friday, September 14, 2012

2012 Terry Fox Run this Sunday

So Shakespeare, whomever that may be, so observed rightly, that all romances are in some aspect, comedic; likewise, all relationships and the progression of life, in such a manner, tragic.

I live a life extra ordinary. Good hours, sunny evenings clashing with high fevers, ruptures and bleeding and a heart which beats like a banjo with one string. I went to bed for three hours yesterday evening: “I reset the alarm for an hour and tried to wake you each hour after, but this is the first time you responded.” It is 3:00 am. I drift back to sleep and hope for waking another day.

The Terry Fox Run is on Sunday. I am signed up. I found out two days ago that it was not in three weeks as expected. I have two days to fundraise and my goal is $500 (if you are going to do something based on an dream, you might as well dream big).
There is no fundraising for the disease I have. Cancer affects more people than any other serious illness with the exception of depression. In fundraising for those who get it, those who had it, who have it and the lives surrounding who are affected by it, I will try to represent for my friends and associates. Because if cancer hasn’t already touched your life in some way, it will. Click
here for the fundraising page.

I have watched Gattaca, the film with Jude Law as a paraplegic, once more and listening to the score by the quirky Michael Nyman, particularly his piano solo for 12 fingers (Nyman, a champion the difference of all).


Gattaca is for me minimalism and the game of go combined. Two characters, one with a heart which is to expire prematurely (like my Marfan’s) is excluded from the space flight jobs. So with will power and dedication, he assumes the DNA of one born with the perfect genes, but who is now paralyzed. Many of the things in the film are common practices in hiring and exclusions with insurance. Watching what both are prepared to do in order to keep the dream going sees beyond genome and even will power to perhaps the drive of the soul. Linda and I were both dry mouthed to see Jude Law pulling himself up an extensive circular staircase with his arms. It was a para’s hell, but a journey Linda has seen me make many times.

There are medical reasons that I should not do the run. But then medically I am not supposed to wake tomorrow. I can’t control that but if I wake on Sunday, I will be in the Terry Fox until I am not. Last year ended with me overheating, passing out and not breathing for some minutes. I think I have learned what I needed to succeed from that.

The medical reasons, and tests which say that I am in the late end stage of being terminal are cold medically tested facts:
*Body incapable or diminishing production or converting a large number of essentials including: red blood cells, hemoglobin, B-12 and others.
*Degeneration of: lung capacity, diaphragm function, cohesion of blood vessels, cellular cohesion, nerve death, muscle death, heart, lung, kidneys and liver function.
*Internal bleeding and muscular damage
*Pain levels now so high that my blood is ‘toxic’ with painkillers, a level which would put in a coma or kill a child or teen.


How do I still live? Beats me. But I am not alone. As individuals with stage four cancer, even with a rapid progression, are those with no hope of a treatment, and no way to treat or manage a disease spread to cells, nodes and tumors all over the body. Doctors can only make dying as painless as possible. Except…many people exist in this state, not in remission exact, yet not having it spread, until one day it does. So others who are told they should prepare for death but end up living and living and living. Us statistical anomalies need to stick together.

I have been told that it is ‘not possible’ for me to go that distance. But I have learned that what many doctors see as ‘not possible’ is often ‘what might be bourne.’ Or as one doctor, understanding that I manipulate or ‘hack’ my own body, from adrenaline, endorphin and other tricks, told me that when my heart gives out, I must take a pill, and then a great deal of morphine to cover the pain OR I wheel up a very steep hill.

So I have spent the last year, upright once a week on the treadmill, holding railing and working on staying upright, going forward and avoiding the ‘tip point’ of my heart. At ‘tip point’ the heart cannot move enough blood to bring oxygen to the brain as it is beating both erratic and quickly and blood is pooled inside. I then pass out. Also, sustained exertion very close to the tip point eventually causes tearing and bleeding within the heart. This pain is significant and tearing can require prolonged rest to avoid further tearing.

However, it means that on level ground, I can, with assistance, shuffle along, and on a hill, move at the speed of a turtle lame in one leg. The difficulty is that my heart beat is the same as an Olympic runner in competition for the 100 meters, and keeping it at that level makes my torso and body extremely hot. To keep it at that level for an hour induces heat exhaustion and later heat stroke. So, in training the trick is to notice when the profuse sweating, which is only about a quarter of what it should be, thus overheating, suddenly stops. As this is when it is dangerous, plus it makes me slow in wits and for living, a bit dicey.
I will walk on Sunday. So, better to live at the edge of a volcano, knowing that any fall is a true fall, than to go out falling from a stepladder. I have no disrespect of wheelchairs and the users, which is my primary state, in INDY. But, in that life and individuals can be complex and that I am tired of sitting merely because it is expected of me, I will be upright. The downside is that within a few minutes someone asks me if I am ‘okay and you really look like you should sit down.’

Please join me, I will post once I come home. I am mile 0 in Victoria. I will be in the back, the aptly named dead last, as I was last year (and I only managed to get done half of what I had intended). Still, not the worst spot for an event which is not timed, not a race, and has no losers, only winners.