Saturday, April 27, 2013

blood pressure

So my doctor came by to evaluate the blood pressure situation. It's part of the process as I know but don't want to accept. It's job in this palliative journey is to keep going down until... of course, I'm not "ready" - sometimes I wonder if I ever will be but then I trust that I will know, just like I was "almost ready" to leave. I have decided that when I became almost ready, it wasn't about leaving life or the planet but about the work and rat race. I was completely ready for that. (I think most people are and some days I feel guilty that I'm at home, enjoying the sun, my sanctuary etc. and ma belle still has to be out there in the race. Then I realize we will all have our time.
Anyway, back to the visit. The doctor consulted with dr. cardio man, and of course his reply was "there's nothing we can do". I've started disliking this man - espcially for not giving me the transplant option for me to peruse myself. Who is he to make these kind of decisions for me? So my dr. Lady took away one of my not-so-essential meds and we'll see what happens (that medication is known as a hypotensive). I've also increased my liquid intake (also medically supervised). That's been such a challenge after getting used to consuming only 8 cups of liquid total (including ice-cream, yogurt etc.) in a day. I was down to about 7 a day. Now I'm making every effort to consume that much not including soup and liquid. It's also essential to space it because all at once could start the "congestive" part of congestive heart failure (for which I'm not congestive, thankfully). My body has great alarms mechanisms. I feel the edema (the slushy galoshes feeling in your feet) that I know to slow down.

I have an amazing family dr. and I'm so glad she's been following me the past 12 years. Despite her busy schedule (she's on faculty at our med school), I'm still on her roster. She has a few palliative patients and really understands that sometimes just alleviating symptoms is enough. Dr. cardio man and his "nothing we can do" approach needs a bit of humanism.

Wednesday, April 17, 2013

follow-up interrupted

Well, I was going to write about my Telehealth Intake with Toronto transplant services, but now I'm updating where my sats are at. The palliative nurse took my blood pressure and it was 90/50. It's slowly dropping. Or quickly, depending on how you see time. There's really not much they can do. I am sad because advanced cancer death is not like advanced cardiac death. I could pass out due to low BP and that's that. I'm alone during the day so no one's here to shake me awake. Even then, I'm DNR so no one can resuscitate me (if that's what's needed).
I'm increasing my liquid intake and even had bread last night (bread, by nature, has a lot of salt).

I'm sad and scared. I was believing and enjoying my plateau. Now I really do feel like a ticking time bomb: fighting to not lose consciousness. I'm finding it kinda hard to keep anxiety at bay :(

Sunday, April 7, 2013

doing my homework: reading the transplant manual

This journey is not an easy one. It's an emotional roller-coaster for lack of a better metaphor. I've spent the weekend doing my homework. As someone who used to wait until the last minute to start and finish homework and assignments in school, I've done it again: waited until almost the very last minute to start serious reading on the (heart)-lung transplant manual for the TGH telehealth (video-conference call) intake appointment I have early this week. I have good reason to wait this long: when I first received the book, reading, discussing with my spouse and thinking about possibilities was pointless. It created anxiety and worry long before I needed to think about things. As a natural worrier, I found myself months down the road, tangled in a web of details that had almost nothing to do with the present moment. As someone who also (quasi) practices mindfulness, this was not good for my mental health. And so I put the transplant book away. That was a few weeks ago.

Since pulling it out this weekend, reading and doing web searches on heart & double lung transplants I have so many questions, mixed feelings and yes, even some anxiety starting to brew. My first thought is how this is going to be discussed with my spouse. Work is a great concern to her. She would have to leave the services which would mean an end to her career and our income/security. Ma belle doesn't want to sell our house, nor does she want to rent it to strangers. We would have no income, a mortgage, rent in TO (which even for a bachelor with roaches is more than our total mortgage here in this town). All of these logistical concerns come up, never mind thinking about how I would even get to Toronto. I cannot leave the house now due to my high oxygen requirements: more than all the portable oxygen compressors combined have to offer. I remind myself that I don't have to think of those things until I get a yes. If I receive a no from the TGH transplant team then I move full steam ahead towards the death and grieving plan. I've been slowly saving up for my burial (which I have yet to pay for due to my miscalculation years ago). My Sick employment benefits are about to end and I'm officially not eligible for my work's tong-term disability despite paying into it. They have a "no pre-existing condition" clause. I wouldn't be me if I didn't challenge it, so I will and hope for the best, because if the team does give me a yes (that I qualify for the transplants) then I will need the meager income and the decision-making will begin. Their yes doesn't infer one from me.

There are so many things to think about.

One but not all of the factors include life expectancy after such a serious surgery (for which less than two dozen are performed per year at the TGH). If I survive, I have a 50% chance of dieing after the first year. Risking my home, my spouse's career, my family, and dieing on the way to Toronto never mind on the operating table is a lot to wager for one year of life to live afterwards. I was happy and actually found myself hopeful when I read about the rare patient who celebrated 5 years of living after their transplant (right before the story continued with them usually dieing of kidney failure, diabetic complications, etc. as brought about by the anti-rejection/immunosuppressant medications that you must take for life). it was nice to dream for that short time, thinking about the places I still want to go see, the things I would love to do with ma belle. Some of which included a bike ride. I would love to ride a bike with her. I would love to kayak with her. Something I have always wanted to do but could never ever do, ever, is go for a run. We used to joke how I have somewhat of a runners' body and how I'm always so busy on the move doing something or other than she speculated that if I was able to, she bets I would have been a runner. you bet 'cha I would. To feel the freedom of moving so quickly on your own speed... I've never felt that and would probably cry every time I would do it if I could.
Oh to day-dream!

Thursday, April 4, 2013

Creating Consent*

Sometimes I wonder why NO is taken so personally.
We live in a world where women's bodies are other peoples' properties. Even here in the "western world" where the phrase "no means no" was supposed to mean something. Now, it's just a phrase. This post, although sounding like a reflection to 'rape-culture' currently in the media actually has everything to do with my illness as lived by a woman. You see, when a woman is pregnant stupid people still think they have every right to touch her belly to feel her own fetus. A woman isn't thought able to make our own choices. I'm being sarcastic but truthful. I'm a feminist. I took women's studies in both undergrad and graduate schools. I'm not a man-hater, despite devoting my intimate life to a woman. It's just taste. Like wine: liking one type doesn't imply that one hates the other, they simply know what they prefer. That's all. In fact, I spent much of my career helping men...a feminist knows if you want to chagne something, begin with the men.

Anyway, I'm straying again... so what on earth does consent have to do with being palliative, or being ill for that matter? Everything. In this society, despite being taught that women have the right to say no, speak up for herself or make her own decisions, those decisions or NO's are still second-guessed. Not just second guessed, but women are expected to defend their position because all too often the receiver of their decision takes it personally.

Why can't a woman make her own decision without it having anything to do with 'the other'? The simple explanation that women are always the viewed, never the voyeur (or at least that's how I learned in gynergenic art history class). To be more blunt: women are always in relation to something else, never  accepted as an independent organism unto themselves. So, when she says "no thank you", it's assumed the no has something to do with the other person. When a man declines an invite, it stands. Period.

Illness? Palliative?
There are well meaning folks who insist on being a part of my process but I never asked them to be. That's where the notion of consent comes in. Perhaps I should explain it another way: why are (my) boundaries always taken personally? Why does my "no thank you" have to do with your own grieving process? You don't need me to process losing me. You need your own therapist, friend, partner, etc. NOT me. I have enough on my plate already then to entertain folks who want to be supportive. Support comes in asking. Support comes in consent. Support comes in not taking it personally if I exercise my right to say NO.

When I was in the hospital I had a visit from a couple that I'm not even close to. I never had ill-feelings towards them, we just weren't close. Their visit however was non consensual. (They irony is that this particular couple speak about consent!). Actually, I think it's sad, not ironic that they could visit, unannounced, without consent, and then overstay their visit. People also assume that because they know you, consent is implied. Hm, sounds like another excuse to bypass the process of asking. I had another situation where someone who was once close also broke many boundaries, boundaries that perhaps weren't there years ago when we were tight. Times change, people change  and even if they don't, you still need to ASK.

So here's the second part to consent. Being able to exercise our voices through asserting boundaries. Sometimes boundaries unintentionally hurt others. That's hard to avoid especially when others' intentions are well-meaning. If we (women) do say NO we are seen as bitches, not nice and cold. Yet we continue to do it to each other, and allow ourselves to become people-pleasers. I could have told them that it wasn't a good time. I did tell them, many times, when I was tired and I wanted to rest. But that aside, the fear of hurting their feelings made it so that I didn't say "not a good time" when they just showed up, without consent. I see the intention in people and it inspires me and even moves me. It's that feeling that keeps me from setting a boundary. So I end up hurting myself rather than the ones who were non-consensual to begin with.

There was another occasion where a very clear boundary was crossed which resulted in my deleting said folks from social media. I'm proud of myself for the boundary but sad that it had to come to that. It hasn't stopped there.

Folks, as well-meaning as they are, have been crawling out of the woodwork it seems to 'get a piece of me' while I'm still alive. For a while, I thought "what do I have to lose, I'm a nice person who can see their intention" however the more I reflected on it, the more I realized that I am a nice person, and it's time to be nice to me. My time is my time and I have every right to say no and if someone takes it personally, that's their issue with NO, not mine. If they are struggling with the thought of mortality and youth (yes, I still think I'm young, despite being 40) then it's up to them to get the appropriate help, read the appropriate literature etc. It's not up to me to give up some of my precious time to help them through it simply by being a presence.

As I moved into my recovery community I moved out of the women's 'alternative' community. As time progressed all I heard were new discussions on the importance of consent versus non consensual acts etc. but loads of people not practicing what they preach outside of the 'discussion' venues. I don't miss the politics or people walking all over my/your no, well-meaning or not.  I'm not suggesting that everyone on a spiritual path or 'in recovery' is respectful, but I've had an overwhelmingly positive experience of 'those folks' asking before doing anything. None of 'them' in my life make assumptions. Most of them don't take it personally when I say no or 'another time' and they sure as heck don't ask for an explanation. No means no period. I've been so blessed to have some of those folks in my life.

All this to say it's never too late to turn over a new leaf. I'm starting to say NO and if you're on the other end of the NO it isn't because I don't like you, it's because my energy is going elsewhere. Some of the time it's with close friends/family but most days it stays with me. I'm spending time immersing myself in creativity - allowing my soul to speak while I still have the chance. Afterall, if you can't do what you love during your last chapter, then what exactly are you doing?

*"creating consent" borrowed from a friend and her brililant response to 'rape culture'. She's building curriculum "creating a culture of consent". Support it at