Thursday, October 24, 2013

now what?

There's a little someone that's kept me going for almost 10 months. He was born today. I have yet to see him and am excited to see the next generation of my family. I am also feeling a bit apprehensive and wondering what I will be holding on to next to keep my claws locked into life on earth. My health has been slowly, very slowly declining. It isn't that noticeable to regular folk. I'm still smiley and seemingly doing as much as before but I am also sleeping more, eating less and having more weird fainting spells that have nothing to do with blood-pressure, or pulse-ox (we measure everything). It's starting to feel like I was last spring when just washing and feeding myself consumed most of the day's energy. My mind is still full of creative projects but my body no longer has the energy it had during the summer months.

Of course I will continue to sew and knit for the little Monkey. Not being able to sit in my serenity garden is becoming hard. It means that I'm locked in the house for the most part. I am still able to go out once in a while, mainly to family as they are less than a few kilometres away but even that will eventually come to a halt because the cold air is painful on my lung and breathing.

For now, getting to know Monkey will have to be it.

Wednesday, October 9, 2013

great phlebotomy = hope

I just had the best phlebotomy ever! I'm glad I made the decision to go to the day unit to have it. The alternative that was offered to me was to have it at home. Being on 12 LPM always involves a lot of logistics to leave the house. I'm fortunate to have such a helpful spouse who's workplace is a bit flexible at the moment. I decided not stay in the comfort of my home because the vampires have usually had difficulty with my veins. If at home, there's no back-up staff to try again. At the hospital there's always someone who can 'get a good vein'. Today's phlebotomy was almost a cake-walk. (They're not a big deal for the normal human being but after a life-time of medical issues, it's just one more annoying thing to have done to my body.)

I think what really helped was the power of the mind. I chose to see this as a treatment, for which it actually is. I visualized the relief of fatigue and headaches I've been experiencing. It also helped knowing that this was the least of my medical worries to come. In preparing for transplant assessment I read the details of every single test required. (Ugh.) Some of them I've gone through before, as a child, and they were traumatic mainly because I was never informed about what was happening to my body. Some of the tests are incredibly outrageous. The amount of radioactive dies that will be pumped into my body is a little disconcerting. It was all so much to take in that I thought to myself "I can't do this; I can't put myself through some of this stuff I promised myself when I was 13 years old that I will never do again". So, for some reason I emailed the longest living heart-lung transplant recipient in Australia. I did it not expecting to hear back. It has been my experience that a bit of fame disconnects you from people. I've emailed Hélène Campbell at least 4 times since I returned home from the hospital and each time I get a generic response from her publicity team. So much for 'being with the people'. Surprisingly the guy in Australia replied, within 24 hours! In a nutshell, he wrote about belief. He wasn't talking about religion, but about our mind, what it can visualize and the tools he used to get through. All of the beautiful things I know and have taught others and have used at one point or another, but seem to disappear when I face my own medical PTSD. Here again, science and spirituality come together. This theme keeps repeating itself. Another long-time friend of mine and I also chatted about this. She's a scientist, of the hard-core kind: doctorate and all. Though I haven't seen her in over a decade due to our global moving patterns, I really cherish the continued 23 year friendship. I really respect her wisdom, education and most of all, her personal experiences. She really knows her stuff and it's comforting that someone else gets it: that science and medicine are powerful, but so is the science of the mind, belief, attitude.

As I prepare for TO to be ready at the moment's notice when they call with an available bed, I remember to pack my motivational authors and courage and the knowledge that I am in charge of my body and at any given moment I can say "this is the off ramp" if I can't finish the tests. People have the right to their personal opinions, but not to judge. They don't live in my body and I thankfully, don't have to live in theirs: it's already taken a lifetime to get to know this body, as damaged as it may be. It has carried me this far. Let's see where it can still go.

Sunday, October 6, 2013

Imagine the hardest decision of your life...

I had a dream last night, that I was in Toronto for testing. I can't recall the particulars, but I do recall the tests came out favourable for double-lung & heart transplant candidacy. I recall the dream being surreal, difficult. I woke up realizing this is one of the reasons I've been fearful of going for testing: what if I am a candidate? A while back I tried picturing myself making a decision and I couldn't. This decision is about more than just adding extra years to my life, should I survive. In essence it's about choosing how to die.
Think back to the hardest decision you've ever had to make. It could have been about what house to buy, what school to go to, whom to marry or not marry. It could have been about making the decision to pull someone off of life-support. All equally tough decisions.

Now, imagine for a moment, being given the opportunity to decide your own death. Stop, think. Breath about that for a minute. Choosing how to die. Note that I didn't say to die or not. At this point, death is inevitable (it is for all of us, eventually). Suppose you are in the prime of your life, your career is taking off, your family of origin is finally coming together, a child is being born in your world. Your marriage (or love life) is optimal. You have everything you've worked so hard for; everything you've always wanted and didn't think you wanted.

Now, after picturing all of what you have, imagine facing choosing death. Do you die, surrounded by all that you love, or do you try for more, and risk dying alone - away from all that you love. The risk of dying alone is so high it almost seems like an unwise choice, but the reality of a shorter life is inevitable.

In the spring when I shared about transplants as being a treatment option, many people around me didn't quite understand what that entails. They didn't realize that 2 lungs and a heart is one of the most rare and complicated transplants done ever. So rare that Toronto conducts on average one per year. Statistical outcomes and life-expectancy are also very poor. Last week my cardiologist put it this way: dying in a  post-op ICU in a foreign city without family and community around is, of the 2 choices, the most horrifying death that he wouldn't even chose. The post-op pain from that kind of transplant is apparently too much for most. It may be for me too. On the other hand, my cardiologist also said that this is the only treatment possibility, otherwise there is nothing else.

Given that I am not ready to go, I am utterly confused in what to do. For a few months I decided not to go for testing, believing that I wasn't even stable enough for the 5 hour-ambulance transfers. Having been outside in the 'real world' on occasion, I've changed my  mind and decided that I won't know unless I go. I am not looking forward to the week of testing. Some of the tests are not pleasant. When I think about voluntarily putting myself through the tests, I realize, if I move forward, I am voluntarily putting myself through my body being ravaged. For what? At best to wake up in an ICU alone and have my body reject both the lungs and heart? To have a successful surgery, painful long recovery only to live 2 more years (1 of which I still won't be able to travel).

I reflect in silence. My (O2) machines are off today and I'm using a large, quiet back-up. I haven't heard this kind of silence in so long. It's what creates fear. Fear of making the wrong choice, fear of having to choose my own death. Fear of being alone at the point of departure.

I already know that I am also very blessed to be able to have this choice at all. Who gets to choose that? Not many people get to choose home where I live, love, learn. I know the beauty in all of this on a highly spiritual and detached level. As a human being who's not yet ready to go, who's very much attached to all of her loved ones, close and casual, I cannot sit in that blessing today. I only feel the silence of the worst decision I've ever had to make. Some moments I travel back to last year (2012) and can't believe that life as I lived it out there is over. It's crazy the difference a year makes.

As for the worst decision if my life: in the spring I decided that my decision would be not to make one which by default, meant to not pursue transplant options. Just for today, that's no longer good enough. I will pursue as far as my courage or medicine will take me. Until then, I keep keeping busy for fear to losing it in this surreal life of mine.