Monthly Archives: March 2012

Good news, for a change

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Thanks to Supergirl Julia, Conyers Thompson’s lawyer returned my medical records, including the MRIs I need to proceed with an essential surgery. It took two phone calls and an appeal to his humanity to do so but eventually he messengered them over. (They were not returned in their original folders and bags, however, but were quite obviously rifled through and itemized.) I’ll leave it to you to wonder why it took so long (over a month) or why arguments had to be made at all.

But there are people for whom bargaining over medical records, using them as negotiating tools for purely selfish and venal ends, presents no great moral impediment.

 

Back on chemo

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Yesterday I saw Dr Paz for the first time since my checkup after the 6-week radiation/chemo treatment for my colorectal cancer. He always tries to speak English with me even though I tell him it’s not always necessary — I can ask questions about what I don’t understand.

Then again, he, and the rest of the oncological staff, seem to feel it’s their duty to at least try to speak the patient’s native language and I really do appreciate that. Even though it sometimes means consulations last longer than they would normally have to.

But Paz says, even after I tell him that I think his English is getting a little better, “My English is very bad. Very bad!”

His English seemed OK when he asked me if I had told the police about Conyers Thompson’s locking me out and separating me from my medical records, MRIs, and all the rest of my possessions. I told him I did but didn’t go into detail.

“I do not understand this man. You need…studies…for you surgery!”

I don’t understand him, either, but an abnormal psychologist might. Or just someone familiar with vindictive, megalomanical queens.

Paz said that the middle MRI, the one from another public hospital, probably could not be replaced. “Very difficult,” he said. “Very difficult.”

If an Argentine doctor says it’s very difficult then I’m inclined to think that it’s impossible.

The first MRI, which is the most important one, showing the extent of the lesions on my liver, can be replaced since it was obtained from a private clinic. But it’ll cost — at least 1000 pesos, said Paz. $250 USD is the quote I got.

The original MRI, the one Conyers Thompson is either holding hostage or has thrown away, cost $530 USD. I went ahead and paid for it because it was pretty much an emergency. I could not afford to wait 6 weeks for an appointment at Buenos Aires’ only location for free MRIs. I’d already waited too long as it was.

So, freelancer writer Carla and her Argentine husband, Fede, offered to loan me 1000 pesos and donations made up the rest. (Conyers was behind in paying salaries at the time. No surprise there.)  I especially appreciated the loan considering that Fede was out of work at the time, but some folks have been very kind to me.

I have held out hope for some time that Thompson would come to his senses and give me back my medical records, that some vestige of morality still remained in his sick brain. But, no, he has refused.  He is every bit as venal and uncaring as his actions indicate. It will require a civil suit to get my stuff back and that won’t be in time.

My next MRI is on the 31st. After I get it, I return to Marie Curie, they will call the surgeons at Pena and hopefully schedule a timely excision. So we’re talking only a couple weeks. Without that first MRI, the surgeons are partially blind. Until then, Paz put me on a short treatment of oral chemo. 6 pills a day for 5 days. Then I guess it’s a race to the finish line.

Time is something I really don’t have.

 

Implausible deniability

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Five days before my mom puffed out her last little breath — fribrollating her lips as if they were a loose rubber flap, as if she were only snoring — and succumbed to renal failure, my sister and I had sat down in the local Steak ‘n’ Shake and discussed how to take care of her when she got out of the hospital. I’d move back home from Chicago and get a job in Indiana. Vicki would move in to mom’s big house. We’d take care of her.

The day before that when alone in the room with her I’d finally broken down sobbing and begged, “Please don’t go.”

“That’s the only reason I’d want to stay — for you kids,” she said. “But, Rick, I’m ready.”

For years, ever since leaving for Bible school in the early 80s, I’d been returning to mom and dad’s house to mow the lawn, to clean out the garage, to tar the driveway, to eat the world’s best macaroni & cheese, and yeah, to pick up some extra cash. Every three months, more or less, for almost twenty years.

After Dad died, Mom and I took some trips together. My freelance status allowed me the freedom to accompany her back to the town of her birth — where rambling ribbons of blacktop could still be uncontroversially named, “Niggertown Road” — to Disney World — where Mom nearly fainted in the Haunted Mansion and complained about foreign tourists not speaking English —  and to “The Holy Land” — where I jacked off to a “blue” movie with a butch Israeli tour bus driver while my mom and her church group praised god and shouted hallelujah a few meters away.

But when my mom told me on the phone that her liver was failing, I found reasons not to go home so much. They seemed Good Reasons, at the time. The Internet bubble had popped and I went from being a barely competent Web designer who nevertheless charged $5000 a pop for decent sites (and wore Comme de Garçons and Matsuda along with my thrift store garb) to delivering newspapers in a beat-up Chrysler mini-van. (Still wearing Comme, by the way.) I worked only a few days regularly and needed every dollar.

Mom never said the words, “I’m dying.” She never asked me to come home. My memory of those months is that my mom was just sick, as she’d been in the years before, but that she was not on the way out and that there was nothing to worry about.

I don’t know how much suffering this denial caused my mother. I know she often sounded confused and sad when I called her. But, even though I know it’s not true, I feel like the reason why my remaining family is paying so little attention to me now — except for my oldest niece — is because I didn’t pay enough attention to Mom when she was asking me to come home, if only indirectly. The only contact I’ve had with any member of my family since being diagnosed with cancer has been through Facebook messages.

Facebook messages.

I can’t think of another way to more effectively say, “We can’t be bothered to care any more than this.”

The dying of a loved one who’s far away brings death closer and no one wants death in the room. They want the good memories and the good memories only.

But the person who’s dying or even fighting to stay alive can’t help but ask, “But don’t you want to see me? Don’t you understand that we don’t have as much time as we thought?”

Thanks for all the donations!

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Since most folks want to remain anonymous I won’t name names. But you know who are and I know who you are and I thank you all so much for your kindness and generosity.

For the past 22 days since Conyers Thompson locked me out of the flat and separated me from my possessions, I’ve been lucky enough to receive money to not only live on, but also to replace some essentials, such as a change of clothing and colostomy bags. (Obviously I wasn’t carrying another pair of shorts or underwear or medical supplies in my backpack when Thompson locked me out and no, he hasn’t returned anything to me.) I’ve also enough to pay for one month’s rent in a new flat and replace my stolen passport.

But, I’m still a ways off from self-sufficiency.

My Art Walks are continuing, however, and if you can’t afford to donate the best way to help me would be to spread the word about my tours in San Telmo, Buenos Aires. I conducted a great one on Thursday with some smart, engaged folks, two of whom know Patti Smith personally. (Yes, I bowed down and said, “I’m not worthy.”) and one of whom is well-informed Travel Chica. We stopped off for a beer or two at cafe notable La Poesia and lucked out in finding an art opening at Zavaleta Lab.

The Malbec was great; the art was not.

By the time the tour ended in front of Grolou’s mural of Gauchito Gil on Belgrano, we’d been chatting and walking and looking at art for just over 5 hours! Most walks aren’t that long but when my guests are enthusiastic, it’s a pleasure to relax and let the tour give itself. Thanks so much Paul, Francine and Stephanie!

Next week, I’ll be back at Marie Curie public hospital to find out what I have to do to replace my patient card that shows I’ve been admitted, re-schedule my routine checkup and blood test, as well as replace the order for the MRI. Then I’ll need to travel to yet another hospital to confirm the appointment. Then it’s off to one more hospital to consult with the surgeons and hopefully get a firm date for removing the hopefully still-shrinking tumor in my colon and the metastases on my liver.

If Thompson has not returned my previous MRIs to me by the time I see the surgeons, I don’t know whether or not they will proceed without them. During my initial visit, they emphasized to me that they need to see the progress and process of the cancer in order to operate, not just what it looks like now. This is especially true of the cancer on my liver. All areas that were previously cancerous need to be excised, even though the metastases have been reduced. The only way the surgeons can know what to remove is by looking at my previous MRIs which Thompson is still refusing to hand over.

So, these are the logistical problems of a life or death issue for me and even though the prognosis is as good as it can be for someone in my situation, it’s still very serious.

And yet Conyers Thompson has decided to play legal games with my life, And, oh yeah, he owes me back salary which would instantly solve most of my money problems.

Please, if you are moved at all by my plight, consider donating using the widget on the right. There’s no amount too small.

What happens when it leaks?

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Few people understand what a colostomy is and I still find it embarrassing to answer questions about it, even after a year of living with one that was supposed to be temporary.

To educate yourself, click here.

It’s not pretty (yet I’m perversely drawn to mirrors to check out how bad it looks), it’s not comfortable (my abdomen is always swollen, particularly after a night’s sleep), it’s not easy to live with (it aches, gurgles and farts far too close to other people’s stomachs), it doesn’t contribute to healthy body image (I can’t even imagine having sex anymore) and it’s far more diffiuclt for me to live with on a daily basis than the knowledge that I have stage 4 colorectal cancer. I believe, to a large extent, I’ve accepted an abbreviated life. What I’d like now is to enjoy what time I have left. Living with a loop of my colon sticking out the side of my abdomen has made that a lot harder.

I never thought that I would miss sitting down to take a crap, but I do.

Fun Fact: If I have to empty my bag when I’m out and about, as I sometimes am, I need to kneel down on the floor of the public toilet in order to do so, else I risk, ahem, missing the target and soiling my clothing. Drop a bomb too high and the backsplash is gonna hit me anyway. Plus, have you been in a public toilet lately?

“What happens when it leaks?” my friend who’s housing me right now asked as we were on our way up to her flat in the elevator.

“Well,” I said, feeling heat flush my cheeks as I answered, “I have to clean it up.”

She paused, nodded, thoughtful, no doubt thinking about her clean sheets.

“Ah.”

I haven’t had that many “accidents” since getting the colostomy. There have been more than enough, though, to make me paranoid. I’ve learned to power through it and simply do what’s necessary, ignoring the shame and despair I feel having lost control of my bowels.

That’s really the key to understanding what living with a stoma and a bag is like: You can no longer “hold it.” Shit comes out when it comes out. There’s no warning. A couple times when it’s come out at the wrong time it’s made me tear up, like when I’ve just taken my weekly shower and I’m all clean but then a stream of shit bursts out one of the holes and sprays the wall and runs down my leg. I’m naked and dirty and feeling helpless.

I’m not nearly as strong as the folks I read about on the colostomy forums who run and bike and swim (WTF?!) and go about their previous life’s routine as if their bodies look and feel normal. That is, I read about it when I actually have the stomach for that shit. I admire their proud retrieval of dignity but I’m just not there yet. I’m still a big baby about it.

The colostomy bag opens at the bottom for emptying and is closed via two tabs that look like garbage-bag twistie ties, except they fold instead of twist. Yup, that’s all that separates my shit from the outside world and from the waistband of my trousers. But, usually that part of the bag works fine. Just not the other night.

I guess I rolled around a lot while sleeping because when I got up during one of my several piss-runs in the middle of the night (a leftover symptom from radiation therapy), a nearly full bag of runny shit splashed out on the floor in front of me as I got up. Both tabs had come unfolded and the weight of my crap had pushed them open completely.

Small chunks of cerdo, a paste of papas fritas, the smell of sour beer and bile.

And it really spreads itself around when it hits.

But, I cleaned it up.