Tag Archive for New York City

Funerals and passing time

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Image via Wikipedia

Sooner or later, a cancer patient has to confront the passing of time in one of the hardest ways – by dealing with the death or funeral of a close friend (or by planning her own funeral.)

I’ve never been comfortable at funerals. Perhaps two of the best were my friend Tim’s memorial after he passed from complications due to AIDs in the mid-90s, and my old boss Donny’s memorial in a church on Onondaga Hill that felt like a garage or a fire hall.

At Tim’s memorial, we gathered in May Memorial Unitarian church, and shared stories of his life, and his struggle with the disease. Religious and non-religious, gay and straight, men and women we stood to salute him, and then walked up the hill and held hands in a circle in the Thornden Park arboretum where his partner Russ planted a tree in his memory.

At Donny’s memorial after he passed from complications due to pancreatic cancer, his political friends and his fire department friends and his family stood to one side, while his old co-workers (me among them) stood in the back, together, and listened to a preacher talk about celebrating life, being in the moment. Again, it felt very one with the buddhist emphasis on mindfulness that softly guides my own days.

Both Tim and Donny’s deaths were expected, from critical life-threatening illnesses. But for me, it’s the death I didn’t see coming that is the hardest to handle.

In 2006, fresh off my liver resection, I ran into Joseph again while checking AOL mail. Joseph. Where to start? Joseph was my flirtation with how the other half lives, a millionaire media/PR guy living in NYC on West 26th St. and 6th Ave. We met at an online media presentation sponsored by SU, and then stumbled into each other again in an AOL chat room, back in ’91 when people actually paid money for hours of online time.

We emailed. We liked what each other had to say. We moved our conversations to the telephone. We talked for hours. One conversation led to another, and to an invitation to join him in NYC for a weekend at the end of February, 1991.

Joseph was, by his own description, a brilliant mind. He was a finalist on Jeopardy. He earned his MBA from Cornell before he was 21. Ten years older than I, I discovered that he’d been a part-time disc jockey for one of the local radio stations while he was attending Cornell – and I’d first heard his deep “radio voice” when I was a teenager.

He’d made his money early on by inventing the playback mechanism that the FCC insisted all radio stations apply to live telephone callers, and then later by inventing various mixing equipment musicians used and the GPS system that was the favorite for single and twin engine private planes. When he wasn’t inventing, he ran a media/PR company. He had friends in the music business, in aviation, in media – and I met many of them, and eventually traveled with Joseph to the trade conferences in those businesses where he was peddling his company or his inventions.

Joseph lived, in NYC and on the road, in a way that I hadn’t experienced long-term. He had two credit cards, but he always paid them in full each month and never carried a balance. He paid cash for most everything personal, especially in NYC. In a city full of amazing restaurants, he was inordinately fond of the little dive. There was this little mainly-breakfast joint over on 9th Ave. in the West Village that he loved for its Sunday brunch special, $6. He was frugal about some things – but he paid over $300 each month to garage his Jeep Grand Cherokee and his full dresser Harley. We did free things, rather than live the high life – and yet, on the road, we rented condo and ordered out and seldom economized.

Sometimes he would hand me a couple of hundred dollars and tell me to buy whatever I needed for a dinner party to entertain some out-of-town clients. He told me to buy whatever I liked (and paid cash) for two stained-glass windows for a redo of his kitchen. On one trip, I hadn’t packed anything suitable for an Upper West Side dinner party, so we went shopping – and from a small boutique in the village, he bought me a $300 little black dress, the undergarments that I needed, shoes, and rented me a fur (it was March, and all I had with me was a down jacket.) When he wanted something, he never asked the price – just said, “that one is perfect” and paid for it. On the other hand, he could haggle on Canal St. or with a printing supplier with the best of them.

He lived on an entire floor of the building at W. 26th and 6th Ave, in a loft he’d renovated himself. There was a door through the bedroom closet into his media company offices. He bought full health insurance plans for his five employees and himself. He’d had testicular cancer in his 20s, discovered when, during his loft renovation, he sliced his pinky and had to have stitches at St. Lukes. In their routine exam, they found a lump. Radiation and the testicle removal, and he was done with cancer. And he was continually mystified that the guy at the deli and the flower guy knew me by name, but never greeted him at all although he’d lived in the neighborhood nearly 20 years.

We were together, long-distance, for just about three years before I broke it off. Joseph’s concept of infidelity was “if she doesn’t find out about it, it didn’t happen.” My concept differed. We had an open relationship, and it wasn’t so much that there was another woman … but that he’d lied to me about it. I took the “if you’re going to lie about this, what else are you going to lie about?” In the beginning, I’d told him if he ever lied to me, it was over. He lied. I caught him. Millionaire or not, it was over.

When we ran into each other in 2006, I told him that I had stage IV rectal cancer. He was surprised, and concerned, and he wished me well. He was living in Florida, he said – on a horse breeding farm with a new woman who had surrounded him with animals and a slower pace of life. He’d had what he called a “cardiac event” in 2005, and felt that he was learning to live a more relaxed, less frantic life.

Two days ago, I got an email from his old email address, with a link to something that was clearly a commercial website. When I saw COMPELLERONE@aol.com, I remembered the buttons he’d distributed at a music conference we’d attending in San Francisco – Compel, Excite, Dominate. They were three words that described his mixer – and Joseph – to a tee.

I sent a response: Joseph, I think your email’s been hacked. I hope that you’re well. P.

Yesterday I received this reply: This is Joseph;s (sic) friend Elaine. His acct has been hacked. I am fixing it now. Unfortunately, he is not well. He passed almost 4 years ago.

Somehow, although I knew that this could happen (Joseph wasn’t in the best physical shape), I didn’t really expect that response. It shook me a bit…maybe more than I wanted to admit. The possible but unexpected is always the thing that throws me the most. I spent the day taking serial naps, broken only by taking the dogs out for walks.

But today, I shook it off, and took the girls to the dog park to enjoy the brilliant sunny fall day. Tomorrow, I’m going to try to make recurrent support group for the first time in almost six weeks. Some people weren’t doing so well six weeks ago – Joanne, who introduced me to the group, for one. I’m not really up for another unexpected expected passage of time.

But avoiding group isn’t going to keep bad things and the natural course of life from happening. It’s time to go back to group, to get the support I need – and it’s time to be in the moment, celebrate lives well lived and salute the passing of time.

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Catching up…

East River Esplanade, June 2009 - 05
Image by Ed Yourdon via Flickr

It’s been an amazing and crazy three weeks.

I spent Easter in NYC, in a lovely little apartment a block away from the East River and the walking paths that go from the Upper East Side down to the 59th St. Bridge. On the train down to the city, I opened an email from my friend Monica Burns, telling me that Quail Run Rumor Has It RN NA NAJ (Reuben) had died in his agility partner Bruce Burns’ arms on April 1st.

Reu had been just five years old when I’d been diagnosed, and after surgery was ruled out and I was put on chemo forever, I knew I had to re-home him with someone who could manage his activity level and give him the active life I’d trained him to enjoy. I had placed Reu with Bruce and Monica in October, 2004, at a pretty low point in my cancer diagnosis. They loved our crazy Gordon setter like he’d been their forever. He was their boy, and I kept my distance while he got acclimated. I saw him a few months later at the first AKC Rally trials of 2005, and that fall and the next during the Wine Country circuit, we had a small reunion. Each time I saw our boy my heart was proud that he’d adjusted so well. Each time I turned on my work laptop and saw the magnificent portrait of Reu posing in a field next to a pond, my pride in my setter cried a little.

I was supposed to die first. So I did what I needed to do to make sure he had a great home. But me dying first didn’t quite work out – Reu died three weeks before his 11th birthday.

The Monday after Easter, I discovered that my scans were, once again, ‘unremarkable.’ Who knew I’d ever grow up to want to be unremarkable? But there it is – and I’ve got the paperwork to prove it. Better still (I think) is that Dr. Personality put me on six-month checkups.

NYC every six months? I’ve been traveling to NYC for scans and check-ups at least every four months (or three months or two months) for the last five years. NYC is part of my world, so much a part of my life that I always wonder how to answer that NY state income tax question about maintaining a residence in New York City. Now, I get to go to NYC when I want to go – not just to have a CT scan.

Being unremarkable means that I’m going to look at something I think I can do – even if it does over-book me for awhile. I’ve applied to sit as one of the citizen reviewers on the Department of Defense Peer-Reviewed Research Committee for colorectal cancer research. I don’t know if I’ll get in, but I want to try.

Then, today, I found out that a friend from the Colon Club – Mary Catherine Dykhouse, who posted as “justsing” – passed away due to complications of advanced stage IV rectal cancer. She is survived by her husband Joe, her daughters and a son. She was 46 years old. She lived about 2 1/2 years after her diagnosis. MC and I didn’t always agree on approach, but we always respected each other.

What I find myself asking in my out-loud voice is why I’m breaking the rules, coloring outside the lines of expected survival, outliving yet another person who was diagnosed with this disease after my own dx in 2004, but who will not break through his or her own survival curve.

Lobbying in D.C. made me realize how effective I could be at getting people to listen, and act. The DoD peer-reviewed research committee sounds like it’s something I’m supposed to do, if I get the opportunity. Maybe this is why I outlived my wonderful, crazy Gordon setter. Maybe I can make a difference…and speak for MC, for Carolyn, for Janine, for Piotr, for everyone who isn’t alive any longer to speak for themselves.

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New York on $10 a day

Harlem Brownstones
Image by masck via Flickr

After six years of trips to NYC to visit the oracles at Memorial Sloan Kettering , it was bound to happen sooner or later – I’d pack, last minute, for an oncology follow-up and I’d forget something critical. Meds. Ostomy supplies. My phone (or the charger!)

Or I’d forget what I left behind this trip…my debit card.

I am an ATM girl. After my latest CT scan at the hospital, I stopped at the ATM on the first floor, opened my wallet, and saw the blank slot where my credit union debit card normally lives. I thumbed through my purse, remembering as I did the last thing I’d done on Friday night – after walking dogs and dropping them and Churro at the kennel, I stopped for gas at the Hess station and tucked my debit card into the right-hand pocket of the fleece jacket I wear to walk dogs. The fleece jacket I saw clearly, draped over the top hook of the wrought-iron coat rack by my back door. At home. Damn!

With $50 in cash and plastic access to my bank account, I long ago stopped carrying a checkbook when I travel to NYC. Luckily, this time I tossed it into my backpack so that I could pay some bills. Instead, I may need it to ‘cash’ a check to my brother in exchange for some folding money.

After Saturday’s bout of freezing sleeting sorta-snow, it’s been cold but sunny and bright. I really REALLY wanted to explore East Harlem, but limited to $50 in cash and a credit card I’d rather save for emergencies, I’ve been exploring on foot and by subway. I stopped at the Food Fare on Lenox Ave. and picked up staples so that I could cook in the apartment I rented through AirBnB. I didn’t go to Amy Ruth’s for chicken and waffles and I’ve ignored the tempting smells from the tacqueria around the corner. But don’t worry; Regina’s house is lovely and I’m sure I’ll be back in the neighborhood again.

In tribute to the neighborhood, I made my version of arroz con pollo – a small pot of turkey thighs and saffron rice (FoodFare takes credit cards! yippee!) Spent way more than I wanted to spend at CVS to justify picking up an extra package of Poise pads. But at least I’ve still got around $40 – enough cash to splurge on a cafe au lait tomorrow between doctors’ appointments., and pick up some travelin’ food on the train if needed.

Has anybody seen my mind? Or my packing list?!?

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