Rick Fights Cancer

Today I finally saw the surgeon who will be cutting me open and removing the tumor and the lesions on my liver. He’s kind of a young guy — handsome with a three-day growth like so many young male Argentines, and quite upbeat and friendly. He said that before they can operate they’ll need to get a better look at my liver. So, more imaging is necessary. I guess either they have an MRI or some other scanner at Hospital Penna, I don’t know.

The bad part, the typical part, is that there is a long wait to use it. The only way they can fit me in — and he’s yet another doctor who insists that the cancer needs to come out ASAP — is for me to be admitted to the hospital and wait around for a spot to open up. That could take 15 days. A faster way would be to go private but I don’t have the money for that. They’ll also be performing an endoscopy — sticking a camera up my butt — to better understand what everything looks like in there. Based on the doctor’s questions, it seems like that they might be able to remove my colostomy so I can shit like everyone else. You have no idea how happy that would make me.

Also typical for the public health care system, I have to bring my own sheets for the bed I’ll be using. I’m also bringing soap and towels since the first hospital I was in didn’t have those either. It’s not clear to me whether or not they’ll actually make me sleep there every night. I mean, they won’t scan me at 4 in the morning, will they? Could be. The city’s one big MRI runs almost constantly to cover the demand.

I’m checking in tomorrow at 8:30 with the help of Kate and Gabi. I’m not looking forward to the boredom of having no Internet and my iPhone’s Kindle app is not as well-stocked with books as I’d like but it’ll have to do. But Les Miserables ought to keep me busy for a while, no?

I came out of the hospital into bright fall air feeling elated. I can’t wait to get this crap out of my body and get on with my life.

I’ve slowly been trying to replace the clothing I lost when Conyers Thompson locked me out of the flat where I was living. It’s been almost 3 months and he hasn’t returned them. I believe I can call that theft.

I now have two sweatshirts (one hoody and one crewneck), 3 t-shirts (two of which have already stretched and shrunk after washing), 4 pairs of socks (I splurged on one pair of trekking socks after a big round of donations), two pairs of underwear (one of which already has holes in it after handwashing — Argentine, of course), two pairs of shoes (sandals and sneakers, the latter bought after a big Art Walk), two paris of jeans (one pair of blue with big, flared legs which I’ve come to love, donated by Kate Sedgwick — it makes me feel great wearing friends’ clothes! — and one pair of black, legs-pegged-80s-style Levis bought for a cheap 150 pesos at a stall in Parque Centenario run by an American dude) and one lightweight military jacket from an Army surplus store.

That’s it.

When’s it’s cold, I layer and wear both sweatshirts under the jacket. Makes it hard to juggle washings. (Who am kidding? I just wear them dirty but as David Byrne once said, If you want people to remember you, wear the same thing every day. I’m not sure it’s working.)

Winter’s coming and I’m going to be cold. There’s no way I can afford to buy a decent coat. Donations have trickled (I think everyone has help-Rick burnout and my sisters haven’t contributed a dime) and I haven’t had an Art Walk in two weeks. I’ve gone without eating a couple days, not in a row, and usually only eat one meal a day when I do have money for groceries. Coffee and cigarettes curb my appetite as does a general lethargic attitude toward cooking or shopping.

So I will be happy to accept hand-me-downs if you got ‘em.

One winter jacket, size L.

I sure miss my H&M coat and Docs.

I didn’t look at my latest MRI after I picked it up at Hospital Fernandez last week. You’d think I’d want to after all the crap I went through getting it done. But no, as I took the bag from the receptionist, I felt a flush of anxiety, or excitement, or something. 

Like I’d just gotten a letter from my college of choice, I didn’t want to open it. Best to just keep feeling like, It could go either way! It’ll be a relief to just go to junior college or work at Arby’s, anyway.

Dr. Paz did want to, however, and he was happy with what he saw.

The tumor on the cusp of my anal canal (my friend Beth calls it BUTT CANCER!) has continued to shrink and the lesions on my liver have disappeared.

“Muy bien,” Paz said, in a rare, mildy emotive moment.

I haven’t celebrated. I’ll cheer after they cut the fuckin’, dominating, cheer-sucking thing out. 

I will not make it to my surgery, and certainly not beyond when I can begin to start over, with food in my belly and colostomy bags glued to it — not without help.

I have USD $200 set aside to pay rent on the 19th but I now have a little over ARS $100 in my pocket to eat on. (And the pesos are adding up as I use this crappy computer in my neighborhood’s locutorio.) I bought two bags yesterday but couldn’t really see how I could afford to buy the special paste that keeps the bags from leaking so soon. A tube of Coloplast Pasta costs around 90 pesos now. Bags cost between 21 and 23 pesos depending on where I buy them.

Many people have donated money using the ChipIn widget over there in the sidebar. However, I know most of you are tapped out and you have no idea how emabarassing it is to always have to beg for money anyway.

So, there are other ways you can help.

1. Share this blog or a particular post on your favorite social network.

There’s a share bar at the bottom of every post and there’s a Facebook page which you can like directly from this blog using the Like Box in the sidebar on the right.  Despite having helped me in numerous other ways, there are close friends and family who have not done this very simple thing. It baffles me, frankly, especially considering what some of you post otherwise. Sorry, I’m scolding but this is obvious stuff. You never know who might see the blog and be moved by its content.

Most of you are on Facebook all frakin’ day long, after all.

2. Buy something from Amazon.com.

I have an affiliate account registered with Amazon and if you’re going to buy something from Amazon anyway, wouldn’t it be nice if a little bit of that money went to me and not to Amazon? Don’t worry, they give you the same price they give everyone else. There’s a banner ad in the right sidebar. Click on any link in the banner and then shop away. It doesn’t matter what link you click. Once you’re on Amazon by using one of those links, it’s all good.

To help you further:

Here’s a link to General Books

Here’s a link to Best Selling Stuff in Computers

Put these links in your Booksmarks bar, why don’t you? And whenever you get the urge to shop (it works on Kindle books, too) use my links and help me out!

3. Buy some politically incorrect t-shirts.

4. Buy some of my designs.

5. Got a blog? Write about my fight or put this blog in your blogroll.

6. Got a Buenos-Aires based blog? 

Come on the walk and write about them or allow me to advertise on your blog or put the San Telmo Art Walk blog in your blogroll.

Two art walks with 5 people each pays my rent. And that really is my favorite way of getting money from people — by providing something valuable.

Many thanks for your help.

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.

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.

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?”

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.

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.

Julia has been helping me pro bono for several months now as I try to get my emergency medical visa and navigate the beaurocracies of the public health care system.

She is Argentine with a soft-spoken demeanor but she doesn’t take no for an answer.

A day before Christmas Eve during one of Cristina’s populist faux holidays, I was scheduled to meet for the first time with the surgeons who will be cutting me open in a few weeks. The surgery will take place at a hospital new to me and my friends who have been helping me.

Kate Sedgwick had already shown up that morning for the consultation and Julia was running late (I told you she was Argentine!). During holidays, certain staff positions at city-run institutions get filled by temps who often don’t know what the hell they are doing or where they are. When Kate checked in with reception that day, the young woman at the desk informed her there was no record of my appointment and that, in any case, the surgeons weren’t there.

Kate’s a formidable woman herself  but was unable to make headway with the confused and incalcitrant temporary worker.

By the time Julia showed up, Kate was pissed off and I was discouraged. This was the next big step in my treatment, it was just before a week of holidays and we felt like we’d be foiled by incompetence.

Enter: Julia.

Despite her track record in aggressively getting things done, her style is low-key but persistent. Within a couple minutes of first talking to the receptionist, she’d discovered where the surgeons were hiding and we were off. Without her, I wouldn’t have been able to set up my next appointment (I also wouldn’t have gotten finger-fucked by an aggressive, bearish intern). I wouldn’t have been able to enter the system at all. It would have been back to Marie Curie to get them to make another phone call, to set up another consultation, make the trek back to this surgical hospital and hope for the best that they can work me in.

(My last round of treatment included both radiation and chemotherapy. The goal was to shrink the tumors and then take them out. But first, to determine whether any of that worked, I have to get an MRI. The order to get my MRI is still being held hostage by Conyers Thompson along with all my other papers, appointment slips, patient cards and previous MRIs and tomographies.)

So, last week watching petite Julia confront towering Conyers Thompson on the sidewalk outside the Montevideo flat, I had some hope that I would get my stuff back. But, she failed. He glared at her with those half-crazed eyes of his, which anyone who’s seen him mad or manic would be familiar with,  told her that my need for my medical records was merely “psychosomatic,”  turned on his heel with his little dog Tim on a leash and stalked off.

Coming back to me, she didn’t just look discouraged, she looked defeated, deflated, beaten. It hurt to see her that way.

Now, despite her dedication and  hard work, Julia is without sentiment. She busts balls with the best of them, makes jokes about my cancer and colostomy and tells me that she doesn’t feel sorry for me, that she doesn’t see how that would help.

Fairly unsentimental myself, her attitude is a tonic for the greeting-card well-wishes I sometimes get from all sides. It reminds me that I’m not going to get through this thing with words or happy thoughts, but with hard work and resilience, like every other endeavor in life.

Still, later that evening, she looked lost and tired as we began to think about eating something.

She stopped in the middle of the room, stumbled a bit and paused.

“In my whole life,” she said, “I’ve never known anyone to do anything so mean.”