There are inconsistencies in the stories I have started to spin about me. Often I lie. I explain away the absence of my hair – as the heat being too oppressive for any other length. I’ve shorn the sides – so it looks like a deliberate hairstyle. My father summed it up as, “punk” – but it works and people believe me. I attribute the chemotherapy burns on my right arm to a birthmark and I fudge the truth about my unemployment this past year with the very vague, “I’ve been freelancing.”
But sometimes I am candid – and I tell whoever asks about the madness that made up these past months. Some have met my pronouncement with obvious relief – that this didn’t happen to them. One even reached over me to superstitiously “touch wood” and ensure that her health remains intact. And I am amused. She couldn’t quietly thank the gods in her head? Seriously? I am sitting right here.
Usually though, it is pity. The pity I can stomach. If I am being honest, I even appreciate the pity on some deranged level – because for all my efforts to move past this, I do feel sorry for myself and if I ponder about what has happened and everything I’ve lost for too long – all my calm unravels. So I try to avoid this.
It is strange – this post-treatment life. My eyebrows and eyelashes have returned – this has helped me return to normalcy in a way that the last day of treatment failed to. I haven’t been blogging – because what is there to say, really? That today I woke up and I worried that the cancer had recurred? That last night, I struggled to fall asleep as I laid there contemplating the reality of my life expectancy and the meagre capabilities of my insurance plan. It is the same worry – every single day. I worry about my death and I worry about my life.
It is unbearable.
I joined a cancer-support group and there I met a man with stage 4 melanoma and his calm in the face of this death sentence moved me. I drove him to the support group and on the drive over, we would talk. He about his fear of leaving behind his two little girls without a father and me about my anger at being robbed of my youth. But he was lovely and he was optimistic. He didn’t want to get bogged down in the statistics that predicted his survival. “I’m alive today and I’ll probably be alive tomorrow,” was his maxim.
He died last week.
And yet – it isn’t that hard.
Z made delicious crab curry on Sunday and we sat around watching Bollywood video clips. My father bought me a beautiful rosewood rocking chair to sit and read in. In this way my days are – dare I say it? – good.
Money is a little tight so I’ve started looking for a full-time job and the tedious task of cover letters is proving far more painful than chemotherapy – but I got to keep moving forward, because really what else can I do?
Last night I got drunk. I roamed a little bit of my island, inebriated and clutching onto a friend – giggling and gleeful. This may not seem worthy of an announcement – but to me it is significant – it was the first time in a long time I had fun. Actual, genuine, uncluttered by cancer fun. And what really thrills me is that my diagnosis came up in conversation numerous times but it didn’t dampen my spirit and at the end of the evening when I got really angry and outraged – venting and fuming about the state of it all. It, finally, wasn’t about my diagnosis but the politics of my country. I am not deluded. I understand the road to recovery is long and slow and there will be good days and bad days – and when I reach the end I still won’t be me at all. Not entirely. But last night? Last night I got drunk.
There is much to say.
Two days ago, I completed my last dose of chemotherapy.
I dropped hints the entire day for a celebratory party – and by hints I mean I shamelessly asked for balloons and cake from the nurses in the clinic but alas no success.
Chemotherapy has been a strange experiences – I’ve had 3 different regimes in 2 different clinics with so many different nurses. I much preferred my first clinic – it was a warmer place. The more recent one is so busy, they could never remember anything. Every-time I walked in they would ask some three times, why I was there.
“Are you here to see the doctor?”
3 minutes later.
“You’re waiting to see the doctor?”
And on it goes.
I know it may seem trivial but it is difficult to explain how daunting being in the hospital can be. Taking the lift up – you’re acutely aware of how this is a place for the sick and the dying. Before I got sick – whenever I found myself in a hospital for visits I would speculate how suffocating it must feel to be at the mercy of this building and the doctors behind their heavy clinic doors and I felt sorry for them, the ill. But back then, I could wrap up my visit after a brief spell – and saunter back out into the world – healthy. Now I’m one of the sick and there is no sauntering back out into the sunlight. Now I can feel other people in the lift staring at me, my bald head, the burns on my arm – and I can hear the pity whirring their minds. So being made to constantly confirm my status as sick repeatedly is depressing and I resent the clinic for this – perhaps unfairly.
When you show up for chemo – you are first subjected to a blood test to ensure your white blood count is normal. They draw blood, stick a plaster over the hole and send you off for lunch while they churn out the results. Then you return and they stab you again for the IV.
I found this to be ridiculous and unnecessary.
So, by my second dose – I figured out that they could simply leave in the cannula when they draw the blood for the test saving me a second prick. And for the seven doses that followed this is what I did.
Except for my last round – I was so excitedly jabbering away to SK that I didn’t realise the nurse who was drawing out the blood didn’t have a cannula and instead she removed the needle and plonked on a plaster.
I looked at her in genuine surprise and inquired why they weren’t doing what I had requested for all the previous times.
“Oh I had no idea,” she says by way of explanation.
“I always get the cannula put in immediately – isn’t that in my file?”
“Well, it is not so painful right? You can always do it again later.”
So I lost it.
“It isn’t about how painful it is or it isn’t to you – if I can avoid an additional needle, why should I not be spared it?”
And as I spoke, I found myself fighting back tears – so I stood up quickly, walked out of the clinic and suddenly I’m in the middle of a melt-down.
This being her first time as chemo-companion, SK was utterly lost by the tears over one more needle.
“It won’t be so bad,” she says soothingly.
“I hate this clinic!,” I spit out. “I hate that my doctor says “leaky leaky”, that they burned me and they don’t seem to remember anything about me – what I’ve asked for or need. I feel like I made a mistake choosing to switch to this clinic. I worry I’ve made so many mistakes dude – from choosing doctors to drugs. What if it doesn’t work man? And this has all been a waste of time. I’m both relieved and terrified today. At least when I am on the chemo – I am doing something, I am fighting this disease. Once the treatment ends, I have to leap off the ledge and simply hope for the best,” I sputter all of this out, between sobs and rubbing the supply of tissue SK hands me all over my snot-covered face.
Then I exhaled, walked back in, told the nurses to expect me back in two hours and off we went for a lunch of pasta, hot chocolate, and chocolate crepes- till I felt better about this nervousness I’ve been carrying about the end of treatment.
To be fair, chemo hasn’t been this bad every-time these past months. It has been pretty bearable. In a way, I know I am very lucky within the sphere of my bad-luck.
The clinics are swish, with large windows and cups of Milo. Sometimes I get a private room so there is plenty of space for me and the friend who has followed me – usually it has been Z – to spread out and chat till the anti-allergens in the IV causes me to doze off beneath a mountain of blankets.
Often we get food too.
Three weeks ago – the nurse walked in to find a fast food feast spread out before us.
“I like to eat healthily before a dose,” I remark dryly.
She doesn’t laugh. Tough room. I wonder how annoying a patient I am – with my cannula demands, the food I show up with, the noisy chatter and the screeching every time a needle comes close to me. I am not a brave person, this much I must admit.
But most of them – despite my hysterics – have been very lovely. They smile and call me “sweetie,” pat me on the ass tell me I am looking sexy when I turn up in shorts, patiently cover me in blankets till I am no longer shivering and they entertain my countless questions about everything – from the order of the drugs to how regularly do the nurses end up marrying the doctors.
“I hear my doctor’s husband died of cancer,” I asked one nurse.
“Yes,” she says fussing over me with a blanket.
“Isn’t that a terrible sign you think? That she couldn’t cure him?”
“No!,” she shushes me. “You have a different cancer – everybody is different.”
I shrug, not entirely convinced. But what can I do? My surgeon insisted this oncologist was the best – so I ended up here.
Once the IV is in my hand, it starts. The process lasts up to three hours and is painless but if not administered carefully the drugs can (and has) burn my veins. That big juicy vein in my cubital fossa (that’s elbow pit to you and me) has also been destroyed. A friend tells me to lie about the cause of these busted veins.
“Tell em’ you’re a druggie – give yourself some street cred.”
But now that I have pushed through this chemotherapy business – I am no longer a druggie! And with any luck, I never will have chemotherapy again. May something other than cancer kill me, I pray.
Up next? I get through the 3 week cycle of this dose before I am carted off for 4 weeks of daily radiation.
And then – I am done!
Till my check-ups. In another clinic because despite my surgeon’s preference, this oncologist does not make me feel comfortable any-more. So I’ve found another doctor – one who has been diagnosed with cancer too and is currently treating himself. Isn’t that odd? I tell J it is almost poetic. The cancered clinging onto each other.
But yes. Check-ups. Every 3 months for 5 years.
Sigh. I am firmly planted in the world of the unwell for a long time to come.
At least my hair will start to grow back.
“If you believe that your recovery depends on your attitude, then you feel this terrible pressure, like ‘How can I be positive when I’m so miserable?” said journalist and cancer survivor Barbara Ehrenreich in her new book Bright-Sided, offering compassion as an alternative.
The seed for Bright-Sided was planted ten years earlier when Ehrenreich, newly diagnosed with breast cancer, got a hefty dose of the “pink ribbon culture’s” exhortation to just thinking positively, which, she writes, “attempts to transform breast cancer into a rite of passage – not an injustice or a tragedy to rail against, but a normal marker in the life cycle, like menopause or grandmotherhood.” The seed germinated years later when, while researching a book about white-collar layoffs, she realized those who’d been downsized got the same line as people with cancer.
“I began to see how ubiquitous it is in our culture,” she said, and then recited, “This is not a bad thing, this is an opportunity for growth, and renewal, blah blah;” and “you have to think positively to get through it” – because nobody wants to be around anyone negative!
“It’s cruel and it’s also false,” Ehrenreich said.
Dr. Groopman has seen it from the other side of the stethoscope. “It’s wrong, it has no scientific basis and it’s very, very cruel to the patient,” he said, “because you’re basically saying you’re responsible for your cancer and because you’re having negative thoughts or because you’re despairing, you’re going to be responsible for your own demise.”
Indeed. “The failure to think positively can weigh on a patient like a second disease,” wrote Ehrenreich.
Psychiatrist Jimmie Holland has seen that happen far too often. She wrote in The Human Side of Cancer, about the “Tyranny of Positive Thinking.”
“For most patients, cancer is the most difficult and frightening experience they have ever encountered. All this hype claiming that if you don’t have a positive attitude and that if you get depressed you are making your tumor grow faster invalidates people’s natural and understandable reactions to a threat to their lives.
An excerpt from 20 things people with cancer want you to know by Lori Hope, courtesy of J.
It started off innocently enough, a red line running down my vein. (Ignore the black paw, that’s LKY either being supportive or trying to weasel his way into my shot)
And then it got increasingly worse, till it became a sprawling and unsightly burn on my arm.
So I went to my oncologist and asked her why this happened since I survived the harsher and stronger drug without a single scar in my previous clinic but have ended up so badly burnt with the milder drug.
She took my arm, stroked it and said “You might have leaky veins.”
“How is that? Won’t my blood be gushing out then?”
“Hmmmm, it happens. This is nothing – it is just a leaky leaky.”
And that, my friends, is a direct quote.
My brother and I had to laugh – and then we changed oncologist.
Leaky leaky? Seriously?
Have I said I am not a fan of doctors?
Looking back on the past year – I must conclude it was a great year because I managed to accomplish that most important of all aspirations: I did not die.
I sit here, alive.
Come what may eh?
Happy New Year.
Mike DeStefano: When I was 21, I found out I’m H.I.V. positive, O.K. I was diagnosed with H.I.V. That was 22 years ago, 23 years ago, and that’s what changed my freakin’ life. I met this beautiful girl, Fran, and she had been a recovering addict as well, and she was also [H.I.V.] positive. We moved to Florida.
DeStefano: Because we were dying. I was 22; she was a little older than me, about 28 or 29. And we literally came to Florida like two old people would do, Marc, and that’s what my life was at that time. I didn’t know how long I would live. I was told by the doctors back then, people got the virus, and they died in four or five years, you know, so I expected that to happen.
She started getting sick. I think it was a five-year period of slow deterioration and then these rapid, like, she had pneumonia 15 times, and she was in the hospital, and she was given her last rites a few times and survived it, and it was just a brutal time.
Maron: I remember you shared a story once about taking a motorcycle ride.
DeStefano: Yeah, during her last days, she was in the hospice, and I had just gotten a Harley, my first Harley.
Maron: I saw you drive up on one.
DeStefano: Yeah, I rode up on one today. I love motorcycles. And, you know, she wanted to — well, she came out and saw it, and she got upset, you know, like she was angry at me, and she went back inside all pissed off that I had the motorcycle. So [I say to this guy that worked there], I forget his name, let’s call him Bill, “Why is she so mad at me?” He goes, “Well, she just feels like you’re moving on with your life, and you don’t love her anymore, like you have this motorcycle, and you don’t need her anymore.”
And I realized how much I did need her, like I loved her, she was my best friend. And so what I did was I went home, and I brought some of my work shirts back to the hospice. And I brought them into her room, and I said, “Franny, my shirts are a freakin’ mess, and I need you to iron them for me.” She got all: “Screw you. I’m in the hospice.” So I left. I come back, 20 minutes later, all the shirts are ironed. You know, she got up.
And then she’s like, “Where’s the motorcycle?” Now she’s excited about it.
And that guy was right. She just wanted to know that I still needed her, like I loved her, you know what I mean? [Dying] people, they feel “I’m alive.” They pass away at one moment. Until that moment, they are alive, and they want to be loved, and they want to give and share, you know.
So now she wants to see [the Harley]. I take her out; she wants to sit on it. I put her on it. She wants to start it up. Now she’s wearing a paper dress, she’s got her freakin’ morphine pole next to her, and she’s sitting on this Harley, and I’m worried about her burning her freakin’ leg off. So she says (pleading voice), “Can you just take me for a little ride around the parking lot?” And I’m like, no, I can’t — I’m thinking, get the hell —
Maron: You’ve got a drip IV —
DeStefano: Yeah! And then it just hit me: I’m like, no, you have to, you’re in this moment, you have to do this motorcycle ride. You know? And it’s dangerous, and what if she falls? And what if one day I’m telling this story: “Yeah, my wife, she almost died of AIDS, but then I killed her on my Harley. She fell off and banged her freakin’ head.” That’s a messed-up story.
And that’s when I realized, you know, screw it. Of course I’ll — yeah. So I’m riding around the hospice parking lot, and then my friend who’s a cripple in a wheelchair comes barreling over in his van, laughing, “What are you doing?” I said, “I’m riding Franny around.” Franny’s like, “Can we just go out on the street a little bit?”
Maron: Where’s the morphine drip? She’s holding it?
DeStefano: She’s holding the pole! Marc, it was a pole with four wheels on the bottom, and we’re riding around this hospice, and you could hear the goddamn wheels jangling and banging; it was insane.
And then I pass the front door, and all these nurses are standing out front, and they’re all crying. They’re watching us, and they’re crying. And I didn’t know why they were crying. I was like, Why are they crying? I didn’t get what they were seeing. I didn’t know. Because I was just in it; I was living it. I knew my wife who had suffered, she was a prostitute, she was a freakin’ heroin addict, she was beaten by pimps — this was her past — and then she ends up with AIDS, and she’s dying, and all she wants is a goddamn ride on my motorcycle.
So the next thing you know we’re on I-95, because women, it’s never enough for them. We’re on I-95, and she unhooks the pole, and she’s holding the morphine bag over her head with her gown that’s flying up in the air so you could see her entire naked, bony body with the morphine bag whipping in the wind, and we’re passing by these guys in their Lamborghinis, and I’m looking at them like, What the hell kind of life are you living? Look at me, I’m on top of the world here.
And that was the last thing I did with her. And I feel so blessed and lucky, you know what I mean? You can’t ask for a better moment and memory than that. And at some point in there, Marc, it clicked in me that, like, I never thought of leaving her. I never even considered it, you know. And today it’s the greatest decision I’ve made. It was the greatest thing I’ve ever done was care for my wife. I’ll never do anything that great again. Freakin’ HBO specials, whatever you want to give to me, nothing will be better than that because it was such a deep reckoning within myself that I am not a piece of crap, that I don’t deserve to stick needles in my arm. I am a good person, look what I’m capable of. I’m capable of deep love and commitment, you know? That was my whole life was taking care of her.