I Got Rhythm

What do you think The Donald does on a dull day? Apart from something to do with abusing women. Or black people. Or Muslims. I expect he finds dull rather tricky.


He strikes me as a classic drama queen. Braggadociously ghastly megaphones, spouting offence, provocation, armageddon, and hate. Now we know he won’t get into office, but just imagine if he did and there was a quiet week. He’d go even more nuts than he already is.


Madmen need drama. Adrenaline, huge rallies, ramping up the ante with every speech. We’re caught in a whirlwind of revelations and accusations, with responses on both sides becoming ever more extreme. We’re living in a pressure cooker and there’s no sign of let up until the magical November 8th….


At least there’s a deadline.


For me, these last couple of months have seen the drama of the first half the year replaced with a sort of ‘steady as she goes’, as I live MRI to MRI. I’m over the initial hiatus, and focused on the day to day business of staying healthy, but the fundamental rhythm of my life has changed, and I haven’t quite found my new groove yet.


There are some regular(ish) drum strokes. Immunotherapy infusion every two weeks. Blood work the same. Brief neuro exam also. Pills morning and night. Chemo 5 days every month. Electronic helmet changed twice a week. No food after breakfast twice a week.


There are some developments (although I hope not of the tumor kind). I’ve now completed six months of heavy duty chemo pills five days each month. The side effects of tiredness and nausea, imperceptible at first, now make their presence known, causing me to curl up and snooze for most of last week.


But, well, yawn.


It’s not that I’m bored by all these treatments (although I can think of better ways of spending several hours in the waiting room of Columbia’s infusion center each month – hours I will never  get back), but I don’t know how to construct a meaningful and – yes please – exciting life around them. And I need to. I need a sense of rhythm, a bit of Buddy Rich in my life. Something that makes me get out of chemo slumber and nausea yug and instead punch the air because I’m doing damn well, considering.


I do what I’m told. I take the pills, I walk the dog, I wait, and wait, and wait, for my infusions. But being good all the time isn’t in my nature. I used to think a useful marketing segment would be to divide people by those who, at school, would go to sit at the front of the class, and those who naturally veered to the back.


Well I’ve spent all year at the front of the class, and I can feel the back row drawing me ever closer.


I’m not going to suddenly eat a tub of ice cream, or skip my bucket of pills. But I am going to go dancing. I’m going to leave my helmet and exhaustion at home and go hit the dancefloor. And seek out friends who are so fabulously sensitive about not crowding me but please! I need the friction of friendship to get me outta here.


And I am going to construct a calendar that combines the bare necessities of my myriad treatments, with the projects I Am Making Happen. A steady beat with Whiplash moments of exhilaration.


I’m living in the moment. The one where patients like me move from being passive recipients of treatments designed to tackle conditions, delivered by saint doctors, to one revolving around me. Us. The VIPs surfing, riding, fighting – above all, living – with TEFs. What we think about what we can do to beat TEFs is what matters most. I’m not going to spout any more Stephen Jay Gould at you, but I am going to bore the pants off as many of the people treating me as I can. We are all on a quest to beat TEF, and we know the answer lies with me and my comrades – those of us dealt the shit hand.


Let’s document how we’re doing, what we’re doing, and how we’re feeling. Let’s feed those clever epidemiologists a banquet of data so rich they have to digest carefully. Let’s make that data work to get us the funding we need to knock TEF out the park. And meantime, empower everyone with a TEF to know what the choices of treatments and doctors are out there, what  the best advice is, who else is out there should they wish to connect, and how we can use our very special status to get the action we need.


As I typed that last para, I could see myself getting up from that back desk, walking to the front of the class, and taking charge.


Braggadocio I ain’t. But idealistically pragmatic I am. (with thx to Gehl for that magnetic line….).


Better go dance it out.







7 thoughts on “I Got Rhythm

  1. Just found your lovely blog. Please keep writing as good to hear your voice.
    If anyone can find a new grove you can as you have a fantastic capacity for joy.
    Have never had the pleasure of seeing you dance though….


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