Sometimes I get over-enthusiastic about things. If I start a book, I finish it in 48 hours. And then I don't read for a month. (unless Hello magazine and Facebook posts count) I had a torrid 2 day affair with Christian Grey and then my interest in him and his 'mouth pressed in a hard line' waned. Laters baby.
My friend Tessa, who despite being about 5 foot 3, has a real 'don't fuck with me' disposition, suggested I start running with her. I was in. I pictured myself running Two Oceans, bought Runners' World magazine, Googled running tips and woke up at 5am three times a week to run with Lil Tess. I even interviewed myself in the shower for a radio show talking about how 'if I can be a runner, anyone can'. Don't judge me. You've done that sort of shit too. Needless to say, there was no marathon and no radio show and after a month of unbridled enthusiasm, there was no running.
It's a bit of a paradox though, because I hate quitting and I think quitters are odious delinquents. I started university doing Speech Pathology and Audiology. It was clear in the first year that it wasn't a good culture fit for me. The rest of the class would sit studiously in Anatomy and Physiology learning about lung function, while I sat on Senate House floor teaching the actuarial science students how to blow smoke rings. Nevertheless, I finished the degree (by the end of four years, the Ac Sci guys could blow music notes)and won some medals for various things that are now just props for my kids' Olympic charades.
My excessive nature is an inherited trait. At best, I'm exuberant, imaginative, animated and full-on. At worst, I'm anxious, demanding, obsessive and full-on. Our family is kind of like a melange of Girl, Interrupted, One Flew Over the Cuckoo's Nest, Sybil and The Big Lebowski, so it's quite unsurprising really. I sometimes wonder where the line is and whether or not I'm straddling it. Am I Type A or am I OCD? Am I jubilant or manic? Am I pensive or depressed? Moody or moonstruck? A little excessive or a little borderline?
Yesterday I had an ECG and cardiac enzymes tested because I had horrible chest pains and shortness of breath. Today, I dragged my whole office to the Westcliff stairs and lungs burning, I pushed my iron-deficient body up and down with a crew of 20-somethings. Right? RIGHT?
Whatever. Alice in Wonderland says that the best people are mad and her life was magical. x
Tuesday, July 24, 2012
Thursday, July 19, 2012
An incurable will
It's been a while.
Since I last blogged, I've had half a dozen venesections and a bone marrow biopsy, and have started what is likely to be a lifelong daily dose of oral chemotherapy. Sometimes it doesn't matter. Sometimes it matters so much that it feels like I've been swallowed.
I never really thought about mortality. Planning ahead for what is likely to happen in 60 years felt excessive, even for a planner like myself. And then, one day, a doctor told me that 60 may be 20 or it may be less and then there it was: a big thing called Death, coming in and out of focus in the not-so-far distance.
I have primary polycythemia vera, which is basically a rare kind of blood cancer. I won't go into the details of the pathology, because it's hematologically complex and psychologically depressing, but suffice it to say that it's incurable. I may be lucky and be just fine or I may die of leukemia or fucked bone marrow. In the interim, I have to be on chemo meds forever, which have their own issues, especially if you're on them for long, which I (hopefully) will be.
The week before last, I sat in a chemo room on a black leather lounger, part of a circle of people trying so fucking hard to survive. A woman in a Discovery Health uniform made arbitrary chit chat with me and then gave me a gift pack: branded tissues, anti bacterial hand gel and a few minutes later, a teddy bear with the Discovery logo embroidered onto its chest. This friends, is EXACTLY what you feel like 15 minutes before you're about to have a piece of your hip bone extracted while you're awake: a pity bear from a woman with shitty highlights.
Needle 1: Blood test #34. Barely feel these now.
Needle 2: Saline drip. No big deal. I scroll through photos of my children on my iPhone.
Needle 3: Venesection. This needle is like 5x thicker than the blood test needle and it hurts like a mofo when they put in it. It proceeds to drain a pint of my blood.
Needle 4: Dormicum to sedate me for the bone marrow biospy. 3mg. Doesn't touch sides.
Needle 4 again: 5mg IV Dormi. I'm still wide awake and debating with the pathologist.
Needle 4 yet again: 10mg IV Dormicum. I remember feeling pain and apparently I was still talking, but it sedates me enough for them to give a local anesthetic (Needle 5) and do the biopsy (Needle 6, in other words, The Drill).
I went home with a white plastic zip lock bag of chemo medication, a small dressing over the biopsy site and a broken heart. I cried for 2 days.
Fortunately, my counts now look better and I have responded really well to the meds. I'm not good at wondrous oblivion. I'm good at thinking of every possible worst case scenario and believing that I deserve to suffer. I can't make sense of the fact that I'm not in control of this. I'm struggling to just let it go and live. It's not in my nature.
Friends and family have been wonderful and it's made me feel so loved and ironically, so alone at the same time. Amazingly though, even people who know me and know how much I love being busy and productive seem to have the 'solution' to this: just stop working. WTF? If this thing called Life just got a little shorter and a lot more precarious, you'd better fucking believe that I'm going to pack it in even more now. Even my bone marrow is hyperactive. Go figure.
Since I last blogged, I've had half a dozen venesections and a bone marrow biopsy, and have started what is likely to be a lifelong daily dose of oral chemotherapy. Sometimes it doesn't matter. Sometimes it matters so much that it feels like I've been swallowed.
I never really thought about mortality. Planning ahead for what is likely to happen in 60 years felt excessive, even for a planner like myself. And then, one day, a doctor told me that 60 may be 20 or it may be less and then there it was: a big thing called Death, coming in and out of focus in the not-so-far distance.
I have primary polycythemia vera, which is basically a rare kind of blood cancer. I won't go into the details of the pathology, because it's hematologically complex and psychologically depressing, but suffice it to say that it's incurable. I may be lucky and be just fine or I may die of leukemia or fucked bone marrow. In the interim, I have to be on chemo meds forever, which have their own issues, especially if you're on them for long, which I (hopefully) will be.
The week before last, I sat in a chemo room on a black leather lounger, part of a circle of people trying so fucking hard to survive. A woman in a Discovery Health uniform made arbitrary chit chat with me and then gave me a gift pack: branded tissues, anti bacterial hand gel and a few minutes later, a teddy bear with the Discovery logo embroidered onto its chest. This friends, is EXACTLY what you feel like 15 minutes before you're about to have a piece of your hip bone extracted while you're awake: a pity bear from a woman with shitty highlights.
Needle 1: Blood test #34. Barely feel these now.
Needle 2: Saline drip. No big deal. I scroll through photos of my children on my iPhone.
Needle 3: Venesection. This needle is like 5x thicker than the blood test needle and it hurts like a mofo when they put in it. It proceeds to drain a pint of my blood.
Needle 4: Dormicum to sedate me for the bone marrow biospy. 3mg. Doesn't touch sides.
Needle 4 again: 5mg IV Dormi. I'm still wide awake and debating with the pathologist.
Needle 4 yet again: 10mg IV Dormicum. I remember feeling pain and apparently I was still talking, but it sedates me enough for them to give a local anesthetic (Needle 5) and do the biopsy (Needle 6, in other words, The Drill).
I went home with a white plastic zip lock bag of chemo medication, a small dressing over the biopsy site and a broken heart. I cried for 2 days.
Fortunately, my counts now look better and I have responded really well to the meds. I'm not good at wondrous oblivion. I'm good at thinking of every possible worst case scenario and believing that I deserve to suffer. I can't make sense of the fact that I'm not in control of this. I'm struggling to just let it go and live. It's not in my nature.
Friends and family have been wonderful and it's made me feel so loved and ironically, so alone at the same time. Amazingly though, even people who know me and know how much I love being busy and productive seem to have the 'solution' to this: just stop working. WTF? If this thing called Life just got a little shorter and a lot more precarious, you'd better fucking believe that I'm going to pack it in even more now. Even my bone marrow is hyperactive. Go figure.
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