Tuesday, April 28, 2009

feel like a broken record ~ Still Here (size alert: long!)

Went to a medical professional, nothing good to report. What's changed?
Had my yearly cardio appointment today - except that it was uneventful since I've been in contact with the NP and saw Cardio-man while I was hospitalized four months ago.

I always go there with a sheet-full of questions. I always take a front seat to my health care, my body. Something was very very different today. I had NO questions, not one. The NP seemed more matter-of-fact today. Maybe it was because the clinic was running late, maybe it's because we've already gone through loads of paperwork together, maybe there's not much left to say. Except this: KAt, you have to adjust your lifestyle now - it's time to slow down. That came from the Cardio-man himself - not the nurse.

Me, re-adjust my lifestyle? What on earth does that mean. OK, I know what it means: stop being me! I don't know how to be anything different than a stubborn, gleefully creative smart-ass. That and I can't slow down. We. have. a. mortgage. to. pay.

I've seriously been considering selling this house. My folks don't want me to - they see it as a loss (their loss since they co-signed) and tell me to wait five years when the percentage of interest versus capital that I'm actually paying down (sadly, next to peanuts) will equalize. Well folks, I DON'T HAVE FIVE YEARS!

Every one's in denial!

Back to my appointment.
My wife and I had a spat - this is straining us, she is in her own denial. So of course, rather than fight in front of people I read The Economist. The pre-Obama issue laid on the waiting room table ready for me to pick up. I grabbed it and opened it to the first interesting article about, nonetheless, the hospice movement. Now, having been to several SAH (Society for the Arts in Healthcare) conferences, I know a bit about the hospice movement and how new it is in North America and how most doctors are still not trained or even oriented in palliative care. Most still want to "find a cure" at all costs. These docs are not into "acceptance" and letting the person live comfortably for their last months/years. So there I was reading about hospice care, about how there is a slow but sure (underground in Canada, in my opinion) movement towards pain management and quality of life that respects the dignity of dying folk.

That's not me - not yet anyway. I can still dress myself, feed myself etc. For the most part. I do have days where I need the help but they don't yet outnumber the good days. My limbs are weaker, I'm dropping cups and breaking things more often now. I average one broken item a week now - just because weakness hits at the most inopportune time now (although, I'm sure in months or years from now I'll see this part as heaven-still). I feel like I'm 86 - avoiding falling by holding onto railings, walking close to walls etc. just so I won't fall. If my BP drops and I faint (which it has, and I have) I don't want my head crashing to the ground. If I don't come to the DNR is in effe... well, the trick is to not lose consciousness. That paper still scares the begeebees out of me. If I revoke it, we're moving into territory I really, really, adamantly, don't want. That however is not the point of this entry. I digress again.

Fast forward to the actual appointment where NP asks me if I want the paperwork started for Bosantan/Tracleer. For the first time in my health-care I have no opinion. I do not care anymore. The only thing I will not budge on is the catheterization. I make it clear that I will not undergo another one of those - (I need to keep my childhood promise to myself). She says that another patient was recently accepted on the basis of a 20 year old cath. Well, mine's been more than 20 years but I tell her to go ahead and try. The funding requires lots of paperwork and proof that what I have is irreversible - apparently catheterizations prove this. Whatever. So the cost for this med is, get this: $2500 a month. USD. No, I'm NOT kidding. And that's not even a cure. It's a treatment for my pulmonary hypertension (the feeling I get when I don't feel I'm absorbing O2 even though I'm plugged to it!).
Yeah, $2500 for "quality of life".

I wonder if it will mask some of the symptoms, allowing me to live in denial once more, only to have the end hidden and more abrupt when the time comes. I wonder if it will turn my liver to shit, leading to a very ugly death, like the "Birdman" I visited in the CCU when I did my pilot project at the HI during my masters. (There was a man whom I'll identify only as Birdman who was for the most part unconscious but died while I was doing my 10-week project. He and Blue-Eyed Girl were the only patients I saw more than a few times. The rest were lucky enough to be in and out within a week.) I will never forget the colour of skin when the liver stops working. This drug fucks with your liver enzymes!

I suppose I was so quiet today because I know where we're at. We're at the "let's see what we can offer you to improve your quality of life" stage. Cardio-man even pointed out that the heart pumps until it can't cope. Now it can't cope. His exact words, not mine.

It can't cope - I wish someone could tell it I can't cope. I can't cope with it not coping. I am so full of those positive thinking Louise-Hay type affirmations. Those positive-thinking and power-of-intention schools of thought are helpful, but sometimes reality just kinda gives you a swift punch in the chest and says ENOUGH. The will is only so strong. The physical being is t.i.r.e.d. The spiritual being, not so much. It just feels trapped by the physical limitations.
That punch was Cardio-man. No he didn't "punch" me perse, but did push down (on the chest), felt it beat back, made a comment in my chart and called it a day. That was after he came in, sat down, read my chart and put his hands up in the air (as if to surrender) saying "I don't know what to tell you, we're really in uncharted territories here". I was almost waiting for him to say "you're still here"?

Yeah I'm still here.

This makes me mad - and when I'm mad but can't yell, I go for a walk... a long walk. I usually walk for hours when I'm mad (and "healthier"). I can usually walk from the Heart Institute home: almost 5km. That would take a normal person about 75 minutes (based on the 15mins/km formula). I've done it in two and a half- in my healthier days.

Today, even with adrenalin running through my 86-yr old body, I found out the hard way that I can no longer do it. I took almost an hour to walk one kilometre, and after that I had to sit, unable to move for several hours. I absolutely cannot believe the deterioration. I mean, I can, but this tells me that the strength of spirit - doesn't matter anymore. It doesn't provide fuel.

So yeah, I'm still here - but I wonder what exactly is that's "still here".

Two weekends ago I finally sat and watched the end of "Still Here". It's a Bill Moyers (PBS for all you cable tv folks) special presentation on the project that the Arnie Zane/Bill T. Jones dance company did in the early '90s. Jones' partner (in dance and in love) Zane died of complications to HIV/AIDS. Jones is also HIV+. He did workshops with those living with terminal/chronic illness to help them express themselves, and then his dance troop performed there moves. I never did see the end of this video. I first saw (the beginning) of it during the AIM (Arts-in-Medicine) intensive I was privileged enough to attend at UF in 2003. The video was too much for me: lots of triggers - that I didn't even know I had. I recall leaving the room balling. For the first time in decades other people were putting words to my life as I was experiencing it. That intensive occurred only 3 months after I turned 30. It was at that time I was asking myself "now what". I never ever thought I'd live to 30 so now/then all that existed was emptiness, blank canvas.

I was naive at 30. I thought I could fill it with a whole new lifetime of things. It was at UF that I decided graduate school was a possibility. It was also at UF that I thought that the power of art heals so much that maybe, just maybe my spirit and will are this strong: strong enough to keep me living long enough to see all my hair turn silver!

Recently, I made it through the end of the video, tearful no less, wondering about the beauty that is Bill T. Jones. I have to admit that when I googled him I was upset to find him still living. Yes, I thought that!. You see when I watched it and listened to him saying/dancing how he's too young to die, I found myself calculating his "would have been" age. So yeah, when I found it that "he's still here" I felt a tinge of jealousy. Although there's still no cure for HIV, medications have vastly improved since 1992. Although there's no cure for what I have, there's no medication that will stop this deterioration. It's too late for me - but not for him. It's too late for my dreams of bed-side art at the Heart Institute. That, for those that didn't know my secret, was my life's dream. Simple but profound. Deliver what's helped me to patients like me.

And it all started at CHEO - the little art room and the little girl that was stuck in the scary hospital - but was saved by art.