Wednesday, January 30, 2013

roller coaster through hell

My cardiac NP called me today, in partial response to my email sent the other day regarding transplant. She also called to check in. I will give it to this woman to work long hours serving her patients and wishing them wellness. My positivity stops there today because I'm now left in a cloud of confusion wondering what exactly I'm doing home.

Our conversation meandered through complications with getting my Designer Drugs (now that I'm not working, they aren't covered, all $4000/mth). I have a phone number to call tomorrow. She also shared with me how she was in communication with my family physician who has been by twice thus far. She was telling me dr. Phys was asking the thousand dollar question: how long. NP shared with me that she told dr. Phys they didn't know. I didn't want to be rude, but this was confusing as a cardiologist read to me what Dr. Cardio man had written in my chart: 100% mortality between 6-12 months. Of course, NP added that it's hard to tell since I've surprised everyone. I get that, I'm not saying I'm giving up, but seriously at this stage there are some things that are certain, like the death of heart tissue, my incapacity to breath with room air. Then she through in confusing statement number two: my heart isn't as dead as I was told. What? This lead to her trying to answer the question about transplant. She added that until I go for a workup they won't know what's really needed but that I may not need a new heart, I may just be fine with lung replacement. I listen closer as she tells me that none of this is possible in this city. Confusion number three: I thought we had the best heart hospital/cardiologists in Canada. If I were to apply to have a lung transplant I would have to move to within one-two hours of Toronto... no ifs and or buts. No chartered plane would be acceptable. Only a move. And then, I may die there waiting. I asked about Montreal, since it's closer and she stated that not only is there a 5 year wait list but that it's inter provincial so our province wouldn't cover it. I cannot believe the politics that exist in order to live. But wait, I'm not done with the confusion.

She insisted that this is all dependent on Dr. Cardio man's opinion that I can even apply. Well, according to ma belle who's been asking him for years what else can be done, he's always stated that I wouldn't survive the surgery. I'm still left with wondering WHY this wasn't talked about before I became so ill. I'm also wondering why this is being talked about now that I'm considered so ill? We chatted for a little while longer with her drilling into me the point about being willing to move to TO. She mentioned Helen Campbell who did earlier this year (she was in the news so NP mentioned her). Great... WHY THE FUCK WASN'T THIS TALKED ABOUT EVER?

Ma belle comes home and I tell her all of this... within a half hour we are on the roller coaster of false hope and magical thinking: she already has a place in Trenton, we could live with her friends, the house could be rented etc. etc. In all this dance I think to myself, if I can't even make it out to the store on such high litres of oxygen, how on earth am I going to make it to Trenton? And how are we going to actually live there? Sure, she can have work, but what about me: my friends and family are here. Where will my support be? I can only knit so much! What if I die waiting (there's a high possibility)? How would she get my body back in Ottawa to bury me? This and a hundred other questions rush through my head as we realize this is all just magical thinking IF and only IF I was deemed "stable" enough for a transplant. It has been drilled into me that I'm not. That saying that "it doesn't hurt to try" is so very false. It's hurts so very much to have hopes raise within minutes and have them crushed again moments later with the reality that I "should have" asked years ago. I should have been persistent. I've lived my entire life thinking I've been informed, persistent and stubborn about my health only to find out that I'm asking all the right questions when it's too late and I didn't even know I could ask them.

I can't reverse time and now it's my fault, had I only asked when I was given the 'sentence' 4 years ago. What was I thinking not asking for a second opinion. I believed that I was dealing with the best.

The nightmare that ma belle has been living is finally starting up in me. This has awakened so much sorrow I feel so powerless. A once opinionated informed woman now reduced to sobs of reality.

Tuesday, January 29, 2013

a lifetime of work

A few years ago I started "the big clean up". What that meant is I started purging the copious amounts of stuff that I had, especially my fabric collection. Well this past summer and fall I went on a fabric shopping binge thinking that I felt well enough to sew, create etc. Why be so conscious of everything that was coming into this house when I thought I'd actually have the time to "do it all". In the back of my mind I thought that perhaps I was jinxing myself. I was right... here I am doing it all over again, but this time, every thing's gotta go.

Tonight I sat on my study/sewing room floor going through teaching paper and art therapy articles. My history of coordinating college programs, teaching at the college and my own work was all tossed into the recycle bin. Of course, I put aside any art & addiction articles for my colleagues, hoping it would be of use for someone, but everything else: all the PowerPoint's I made up, handouts, exams, copies of useful tips and articles all gone. I also came across articles I've either written or was mentioned in. My work and art work have appeared in many local newspapers, pride guides, new-age local magazines etc. Each time I'd ask ma belle (who happened to be witnessing this also from the floor) to take out her reading glasses so she could see my name in small print either at the back of a college brochure (a program I coordinated in 2005/06) or my name appearing under the art listings. I also coordinated the pride art show the year I was on the pride committee. All of this work, a lifetime of being active in my community, pushing art forward be it in mental health (I coordinated a few arts & mental health programs for which an article appeared) or art in pride. All of that work...

I've finished for the day not only because I'm physically tired but because watching all of this being tossed out, rendered useless is emotionally taxing. Ma belle never knew me as a college teacher. She met me after I left, knowing I had no more stamina to teach. She was seeing another side that she never had the privilege of knowing. I always wanted to touch peoples' lives and I hope I did. Actually, today I heard I did - I received a letter from one of my clients (my coworker delivered it during her visit today). He shared just how touched he was to have me as his primary counsellor highlighting how he didn't feel judged for everything I heard about him. Why would I? I've received plenty of judgement for how I've lived my life - too many people judge me - some don't even know me (you know, all those homophobic, racist, sexist folks in the universe). I am writing this client back. It's my goal to write something for each of my recent ones - but this one in particular needs a little more from me, and I'm working on giving it to him. What an honour to have been part of their journeys....

Monday, January 28, 2013

(Past) candidate for heart/lung transplant

I started cleaning out my office - it's going to take a long time since I kept much of my graduate work, articles, resources etc. You don't counsel/teach without having resources at hand. I realize that's what the Internet is for however I love the resources I've collected over the years.

I started with a small section - my legal and health records. I have a pile for the confidential shredders including my old housing papers, leases (what am I going to do with them in the afterlife?). Then I read my old health records. I will back track for a moment here and say that I've been keeping copies of my files for year now, going back to 1986 actually. in 1986 I had a double lung biopsy where the results indicated pulmonary hypertension. Records since then indicated that theoretically I was on a transplant list however each note added "she is currently too healthy" to be considered but will be an option when the time comes. So when did it jump from too healthy to too late? Why was this missed? Why were none of those options given to me, discussed at least? How could I have moved from that place to "too late"? I am monitored twice a year. Who wasn't doing there job? I am emailing my cardiac NP in the morning. I recognize that none of these questions or answers will change anything but I want some understanding. I am angry.
Devastated actually.
To think I could have had more...time, more love, more life!

Wednesday, January 23, 2013

1 month ago

The visiting nurse came by today, with a nurse fresh off mat-leave. She was a tag along to get reacquainted with the job. They're both wonderful, in fact all the nurses are great. They are real, down to earth and able to talk about anything - not exclusive of symptoms. One of them suggested a book so I have it on hold at the library now. I did share with them that I'm quite fine being in denial (for now) as I don't have to miss me once I'm gone so why go through the agony now?

When one of them was listening to my heart my beat was irregular (as has been since a month ago (exactly, almost to the minute) when it needed a kick start again with atropine. I asked her how it sounded because I was curious if she could hear how I feel (or if it was my head playing tricks again). I was a little surprised when she reported to the other nurse that I had no pattern to my beats. She looked at my quizzically wondering if I was okay. I told her that it's uncomfortable, not painful as in tights, squeezing or heart attack type pain but just very uncomfortable. When you don't have a specific rhythm the feeling can be disturbing and very unpredictable. It's usually followed by a semi-black out or what I call a grey-out: when I haven't passed out but it feels close to it as the O2 decreases from my brain. In these times I usually put my head between my knees and try to breath it out.

Here again it's 00:08 and I'm still awake, fearing to got to sleep. I need rest but I want my day to last forever in case I don't get anymore days.

Saturday, January 19, 2013

order - more random thoughts (fear of not getting it all down?)

People think that the Universe works in mysterious ways but if you start paying attention you'll notice that it works with a certain order. That order doesn't always make sense to us mere mortals who are limited to only 5 senses and one physical plane, but order exists nonetheless.

Take what's going on now. I've been living with this illness all my life. It's been getting worse - as any illness does. Yet, only chose to worse dramatically when I found a new love and packed an entire relationship into the span of about 2 years. This love story has been told before: newly married couple who had the time of their lives end so tragically and so young (both in age and in relationship years). Ours is not a new love story. We've seen it in films: in the recent past some non-hits such as Autumn in New York with my favourite actress Winona R (whom I apparently look like on side view, at least that's what one of my first ever ex's said) and Sweet November (with Charlize T). Yes' it's Hollywood but where do you think art derives it's ideas from. Art comes from life, life comes from art. Art if life and life is art. I get it, I'm an artist; a creator. I'm also a creation - we all are. And yet we forget that. We carry on like little ants on a mole hill... going to and fro, rarely taking time to slow down and bite into a ripe watermelon, feelings it's sweet stickiness dripping from our fingers. That's why i stopped eating pears some time back. I love pears, they are so much softer than apples, much sweeter too. However that juice would run down my hand, sometimes down my arm and getting everything sticky. I became one of the asleep for a while. It wasn't fun. It didn't last long as I am and always have been unique. I've always danced to the beat of my own drum, hummed my own tune and sometimes none at all. I think, or at least hope I've left some of that to those I touched. It's important to never stop enjoying the watermelon, or avocados or whatever your favourite fruit.
Never stop living.
Never.
That's why I've chose to have the Hebrew letters/symbol of life (Chai) on my gravestone rather than a mogen david - life is sweet.
What we're doing to life is horrible and I won't miss it. In fact I'm a little relieved I'm getting out of it all - gang rapes every 20 minutes around the planet; willfully destroying our precious home (earth/water); it's too much.
The Mayans were right - a new time is coming, people need to change or the end is near - not in a big-bang kind of way, but life as we know it. Well, that's true for me: life as I know it has changed. The same is true for those close to me: life as they know it is changing and soon I won't be in it anymore. I'm sad, sad because I wanted to do so much more. In the hospital my mother said I wasn't done here yet. There's only so much I can do mom: I can't change the world, even though I really wanted to when I was 16. My late teens, a time when I discovered that there was an entire world out there beyond the small suburban town I grew up in - my best friend and I (friends to this day) had so much fun while we were trying to change the world, protest (war in the middle east), save forests (temagami, clayquot sound, malaysian rain forest, brazilian rain forest), save Native Lands from being drowned (James Bay project), save ourselves (became vegetarian).
So much destruction in life for no reason - empires to rule? We're MORTAL folks. There's no dominion to be had over mortality. It's time to stop - too many people are suffering. Except me - I'm not suffering, I'm not mourning me. I don't want my life to end but I have no choice. I don't want to suffer and I don't want those I love so deeply to suffer.

There's order and I can't stop it. I know I will be dead before my brother and sister in law have a child. They had a miscarriage in August. It wasn't time yet for their child-soul to appear just as it wasn't yet my time. There's only so many souls in the Universe and it always happens, a birth follows a death - it just is. They have not yet announced that they are trying again, but I know, I know this to be true. (I "predict it" if we want to get all esoteric) It's not about woowoo though, it's the order of the universe. And when they do get pregnant, we will know just how little time is left for me. Right now I'm trying so hard to absorb all the thoughts being sent my way to get me to my 40th. 49 days is what the counter says on my smart phone. It's like a death sentence. I've joked with visitors that knowing me, I'll probably die the very next day - just because I'd pull something like that. But what would really be me if I still had the energy would be to see the entire year - just to prove everyone wrong again. However I just don't need to play that game anymore. I've done it all my life and it's shown everyone "I am strong". Next.


Take a bite, savour that juice from that ripe watermelon, let it drip, down along your hand.
That's life.... it's that sweet.

Denial and random thoughts

Denial is so powerful... that it can be a choice. I've been reflecting a little about denial and it's usefulness. I could in essence choose to ignore what's going on and continue to be me: joyful, laughing, free, smiley, etc. I dawned on me that I don't actually have to grieve, because in the end it will be all over for me. Unlike everyone else who will be left behind to mourn the loss, I will be gone. It will be all done.
So why start crying now?
I did it in the hospital a few weeks ago and it clogged my cannula, I couldn't breath. So what good is all this crying, emotional turmoil? What good does all this "processing" work do for me, that one who doesn't have to miss anyone once I'm gone, because I'll be gone?!

Someone called me courageous recently. I think it takes more courage to feel those feelings, share the journey of loss that others are beginning to feel (and will continue to feel once I'm gone). I'm not courageous. I don't want to feel it all. None of it.

Ma belle asked me what I want for my 40th birthday in 49 days. I simply replied "life". She/we cried. I don't want anything, nothing at all. We can't take anything with us and so as much as folks want to bring me lovely "things" in the end, they're just "things". Material objects may serve as a reflection of love and care but they've never been able to replace the words!

Wednesday, January 16, 2013

sister reads

I wonder if my sister has started reading the book I lent her tonight. I wondered that as I finished the first chapter of the book she brought for me to peruse. In it I skimmed ahead to something the author calls a "death meditation" - a friend on mine taking yoga teacher-training this year also suggested that meditation. I did not do the meditation as I was done reading for the night, but I did read a few of the questions. In it it asked, what are your regrets. Funny that, as I wait for death, I think, I regret not writing more, not finding some way into my sister's life, perhaps to come together to co-author my memoires. I always imagined bonding over a big project like that. She's always wanted to write, I have always wanted my story out there.
I regret that.
Of course, I also regret not squeezing in a trip to San Fransisco last fall when we had the money and I had the time, but ma belle couldn't get it off. Would it have changed things? No, however I did want to see it, be amongst tall trees and just breath before my own breathing became so difficult.

There's so much going through my head and not enough time.
TIME
only time

My mom came by this afternoon and made me some tea. I pulled out some knitting, nothing in particular, just spending time creating something (which I may not be able to finish so in the end, it will be a waste of time). My mom commented how at least I'm not sitting in pity, doing nothing. Yes mom, I have a work ethic until the end: must be active and do something to show for it always. Yet it is helpful - maybe - to be using my time creating things to leave people. Then again, it really is not that helpful, feel the anxiety of leaving, never to do any of the things I like again. At least I get to see people when they come to visit, but visits are usually cut short as my energy wanes and as each day passes so does a little more of my energy. Passing, right before my eyes.

Monday, January 14, 2013

the disappearing me

It's 22:33, I'm still awake but tired. I don't want to go to sleep because, although I used to be a night person, I now fear the night. I want to wake up. I'm afraid to close my eyes for fear I won't open them again.

My mind plays tricks on me, sometimes psyching me out, sometimes giving up. I couldn't feel my feet about two hours ago, they were freezing. My wife, ma belle, felt them and asked me to put the pulse-ox on my finger to read my numbers. For once, I didn't care about my numbers anymore, knowing that if they were low, I'd only worry that much more. Surprisingly, the number was irregularly high for me. Then again, numbers aren't symptoms. Dr. Cardio-man always told me it's how I feel and not the numbers that counted. Well, now I feel scared, sad, frightened, angry, overwhelmed, confused, terrified, ... are those enough feelings Dr. Cardio-man?

Every time my nose runs with blood, I know this is the beginning of the end. In reality it's simply my nose not being able to deal with the high oxygen output, but the bright red liquid running down my face and dropping all over the place scares me. I haven't seen that much blood in so long. Daily. I've always been squeamish with blood. I wonder, will it ever stop?

I'm determined not to have any breathing crisis, not start withering before I finish some things. It's amazing how my goals/bucket list last year included wonderfully wicked things like seeing a pyramid. Right now, they include simple, mundane things like finish ma belle's necklace, and jacket I was about to sew her before all this happened. The sad part of that little goal is that I don't even have the energy for something I could whip off in a weekend. I had all sorts of little bedside projects in mind, things to give people as my "parting gift". It's hard accepting another stage of this illness. I lived in denial for so long, pushing through, doing anything I wanted, within reason of course.

Now I wait. I keep busy to avoid driving myself crazy, looking at the Palliative Percentage Scale and quizzing the visiting nurse how long she thinks before I enter the next stage, one where I am helpless, bed-bound and can no longer even type. When I arrived home I had to adjust, and successfully I think, as I can type without problems now, but in small spurts. Now the question remains: how long at this plateau, where I can type, knit for a little while, sit up in my bowl chair and have a visitor? How long before I become NOT ME?
How long before I lose ME?

Saturday, January 12, 2013

leash - the O2 situation

I'm on 12 litres per minute of oxygen - It's a pretty high dose as far as the home care O2 company is able to handle. It requires two machines put together which makes it very noisy and very hot. The output of heat from one machine was enough to make the bedroom warm. With two machines together they've had to be moved to the adjoining room. A hole was drilled through the wall and the O2 cord goes through it to where I sit, in my bedroom. The room that now houses the machines used to be my office/sewing room. It is currently 26 degrees Celsius in there, with the window opened to the winter air. When the window was closed it was 35 degrees. Ma belle has a thermometer in there to keep track. This feels like a band aid solution because honestly, with the heat in there our entire house is out of whack. Apparently the heat is not going on in the basement due to the sensors reading wrong. I am currently on a leash as the O2 cord only reaches the to the washroom. I cannot answer the door to visitors nor can I fix myself lunch. I have access to my room and the washroom. I am a little prisoner in my own home. Then again, many days I do not even have the energy to walk to the living room if I could.

When professionals come, from the agency I'm working with, they use the lock-box. Soon ma belle will be back to work and I will be alone all day, virtually stuck to the house. If anything happened in this house, I would be screwed. Her return to work worries me, but what can she do, remain unemployed until I die? Knowing me, that could take a long time, longer than traditional compassion leave will allow. There's no sense in her life being interrupted any more than it already is just because mine is.

I know this sucks to say this, but I'm not sure I could go through this is it lasted that long, injecting myself every time I can't breath. Feel like I'm dying over and over again? I'm just not that fearless, brave or graceful. I know people have been writing to me lately using those and other words to describe me but the reality is, as much as I'm an ox, a fiercely stubborn woman, I am full of fear. I am just not able to embrace with grace the decomposition of a living body, MY living body. It scares me. Dying quickly in an instant scares me also.

I don't want to be going through this. The only two options make me very very mad and both end (badly).
Why does death have to be as difficult/painful as birth?

Wednesday, January 9, 2013

the start of the last chpater.

I started this blog on Tues. Jan 20th, nearly 4 years ago. Then I had hoped and prayed to get 4 more years. I really wanted to prove my dr. Cardio man wrong.
Today I am at home after a 17 day stint in our Heart Hospital. So much to update, so little energy. I hope to write everything that's been going on but I am now home, being covered by palliative care.

I had my first breathing crisis today - or what my family physician would call a breathing crisis. I felt like I was going to die in that instant. That's why I'm getting an Rx for morphine. It hasn't come yet and today would have been one of those days to use it. M scares me as it requires a needle - I hate needles, but I hate the sensation of not breathing even more.

I am not very ambulatory, and it's taking almost a day of rest to be able to spend a few minutes to type.

I quickly looked at entries from 3.5 years ago that stated I am not ready for this, and I'm still not. We've packed in almost an entired lifetime in one year (with travelling, activities etc. ) that I really wanted to give ma belle MORE. I can no longer do that. Sad doesn't even begin to express my sorrow. Watching someone go through this was one of the hardest things in my life - going through this myself is THE hardest thing in my life.