Well, I am sorry to have to report this to you, but it turns out that Chemotherapy sucks.
Why, oh why am I always surprised at how hideous medicine for cancer is? I can't remember for one minute how perfectly awful every single treatment turns out to be, and always show up dressed for a cruise and packing an eyebrow pencil. But they are all monstrous, clearly designed in a Transylvanian laboratory by some scientist with crazy eyes who has been kicked out of every legitimate institution and is assisted only by an abhorrent little pervert who calls him master. Chemo especially. Don't tell me that hideous drip came from any normal person. How did I not think that this was going to be terrible? I know that someday in the future, they are going to look back on Angelie Jolie cutting off her own breasts with the same horror with which we view Aztecs throwing virgins off of pyramids. When faced with chemotherapy, the people of the future are going to be all
"They did what?"
I am frequently accused of heroism and bravery, as though some baby was going to be rescued from a burning building if I say Yes! to this surgery or that chemo treatment. The fact is, I probably would take a chemo treatment to save a baby from a fire, but up to this point, well, nobody has asked me if I'd like to choose.
I'm sure I would save the baby. Pretty sure. But the point is, I'm not brave. Just obedient. And I have the long term memory of a gnat. I keep forgetting that my obedience is going to result in feeling bad in ways that I have never imagined. Not that there's a lot of choice.
I mean, I guess that all these Doctors kind of give me a option. Do the treatment or die are usually the selections. But I approach these various forms of torture with such a positive attitude! When I know it's going to suck!I learn nothing from previous experience. I keep telling myself things like "Anybody can do anything four times" or "How bad can it be?" Oh brother. I keep forgetting!
Did I learn nothing from that surgery, where I thought I was going to be given some good drugs for a couple of days wearing my cute pajamas and then go home? Did I learn nothing, when they bolted my head to a conveyer belt, worse than the scariest movie ever made? And then microwaved me on high for twenty minutes? Did I forget about the feeding tube in my nose and that I wasn't allowed to have so much as a sip of water for weeks? I learned nothing. And now this.
I had a little chemo lite during radiation, back when I was going to the opulent private operation run by Dr. Carlos, or Dr. McSueño, as we call him around here. It's a bit different at the National Health system, I don't mind telling you. At Dr.McSueño's they had individual booths outfitted with the most comfortable loungers I have ever draped myself over, and equally comfortable chairs and tables for visitors in case you wanted to offer cocktails, along with individual flat screen tv's.
My new set up is very different indeed. The room is tiny, and they fit two chairs in there. In order to make it work, the chairs face each other, and you sit sort of knee to knee with your cube mate. The nurse has to edge in sideways every time the IV alarm goes off--which it did about a dozen times, and which always turned out to be me, forgetting to keep the hand receiving the IV motionless. Trying to use my eyebrow pencil.
My roommates rotated during my session, which was kind of fun. The first was a skate park type with a spray of hair that rose into a magnificent curl over the shaved sides of his head. He left half way through my session and was immediately replaced with an old cowboy, skin like hide and a fine old hat and wranglers. Neither roommate was disposed to conversation
I was fooled for about eight hours after the actual chemo session that for once treatment was not going to be a grisly nightmare.I even bragged to my friends that they had fed me so well on homemade bone broth that I was going to sail through it. I was wrong. I started getting sick that evening and stayed sick until the middle of the next afternoon. I was raised too delicately to talk about what I mean by sick in this case, but it wasn't pleasant.
The worst, though, is that it has messed with me emotionally, and has been relentless in the battering of my mood. I got over the physical, flu like symptoms in less than a day, and I felt I might be safe. For a minute. But there's something about being back in treatment that makes it hard to forget what's been happening to me.
This is the fourth day since I shared chemo time with that old cowboy, and I feel dejected, and insecure, even though everything is good and I'm getting ready to go see my family. I feel afraid, and my stupid doctor told me I have to wear a mask on the plane, so I'm going to be that person, and instead of picking out an awesome capsule wardrobe which can make twenty five outfits out of five pieces, I'm trying to figure out if I've got all my medications.
Don't tell me to keep my chin up! Oh, yes, I know you were going to. I know you were going to tell me to be grateful and remember how lucky I am, to count my blessings and think of the good things. I am doing those things, I really am, and I have moments when I remember that I can eat and drink like a normal human being without wearing a maxi pad tied around my neck, so wearing a mask is not that big a deal. Sometimes I feel like the luckiest girl in the world.
But not when I'm picking out turbans to wear because I'm going to go bald.
Well, I can tell you that her talent doesn’t come from her formal education. She dropped out of that as soon as she could, so she didn’t have many people telling her what she couldn’t do or say, and trying to squeeze her onto some shape she couldn’t fit in, which she wouldn’t have done anyway — but her going her own way saved everyone a lot of hassle. But she was a voracious reader, and a discerning one. And she was always happily juiced up. She would have been outrageous if she weren’t so good natured. That’s what gets her through the tough ones like this. She’s a lot like her mother, come to think of it. As one of my sons said, “I’m not sure I could even be a fraction of that upbeat, but that’s her and I’m me.”
Saturday, June 20, 2015
Saturday, June 13, 2015
Chemo Frenia
I am someone who bursts into tears.
As you know, if you've read the blurb my uncle unknowingly supplied for the header of this blog.I don't have a lot of formal education. The lure of lime colored chiffon and feathers dyed to match that was offered by ballroom dance schools was more than I could resist when I discovered it in my late teens. I had already exhausted my ability to be a hippy, which turned out to be a suprisingly similar thing to being poor and trashy, only with poor, trashy musicians. That was the first thing I tried after leaving high school, at much too early an age. Then came the lime chiffon.
Regardless, I do know that one wants to avoid cliches like "burst into tears." ( and one wants to describe oneself as "one," so refined! ) But I can't help it. No other phrase will do. Daily I burst, and thankfully it's into tears, at the tiniest provocation.
One minute, I'm minding my own business and wondering if I have to wash pre-washed spinach, the next I'm spraying saltwater over who ever has poked me in the emotions, which are right up there at the top, easily reached.
For instance, yesterday, I bumped into Don W. I was at SuperLakes, the local equivalent of Wegmans. Sort of. I was having the same washing discussion with myself over Kale...nothing but cancer fighting superfoods in my grocery cart...when I bumped into him.
Don was one of many who sneakily participated in an underground fundraiser for me. It wasn't the sort of thing where there's a bake sale and the chance to throw darts at balloons or guess a person's weight.
Pause. I'm just thinking what an unholy disaster a weight guessing concession would be around here. Wow. Okay, unpause.
Somehow a number of friends got organized by my friend Jan into slipping a little cash here and a little cash there into envelopes and making sure that it got into my hands, disguised as a a "Get Well" card. Yesterday, I was trying to thank Don for his participation in this effort, and ended up wiping my nose on his shirt. It's awful. I can't get through a conversation without crying.
My sister and mother are particular minefields. Zero chance of getting out of a text or email exchange without me bawling. But you know what? It's only things that make me see how wonderful people really are, or how great my life actually is, that has this power over me.
I seldom cry over what people would consider bad news. Well, cancer is bad news, let's face it. But I didn't cry when I was first told I had cancer. Or any of the times since, which seems like about a thousand. I cried with Bruno when we first considered the reality of being separated by how the world is made. That got a pretty good Celtic style keening out of both of us, but not so much since.
Oh, I feel it. I react. I react as though Thor the Thunder God just swung his hammer of doom into my solar plexus. It just doesn't make me cry. Things I love make me cry.
So, I didn't cry when they told me I was having chemo after all. Yep, you read that right. We went to see my doctor on Thursday, and he wrote an order for chemo as though the last time we'd seen each the topic of chemotherapy had never even come up, never mind that we had high fived over not getting it.
And of course, I had promised in a group email, to all my friends, that I would never, ever, make Marti of the fluent Spanish go to IMSS with me again. So there I was, unable, with my faltering Spanish, to ask questions of the doctor who had just told me to order up a wig, sister, looks like your hair's going to be falling out after all.
In a later conversation, Bruno talked about how they had moved the football again, but I didn't feel that way. I'm not excited about getting chemo, because I'm not an idiot. But I know that this was the original plan. It seems, therefore, that there must have been some kind of communication between my surgeon and my oncologist, at IMSS. There aren't any new tests, there's no change in my status (cancer FREE), so I think we've just gotten on to the original treatment track, and I find that reassuring.
Still not excited about chemo, though.
Naturally, I had just made an appointment for an expensive cut and highlights because I wanted to be looking good when I go back to visit my family.Hair genius Jim Coolidge at Gloriosa ( oh, come on, a little link is the least I can do) isn't the kind to hold you to an appointment,though. And, of course, he has no desire to see his work coming out in handfuls. We'll work it out. I've seen all those movies where the heroine goes crazy and starts hacking off her trademark hair with a Swiss Army knife and it comes out looking adorable, so Jim can certainly pull that off. What could go wrong?
My doctors somehow managed to intuit, perhaps as a result of me bursting into tears, that an upcoming trip I have planned is very, very important to me. I want to see my sister and my brother. I want to see the rest of my family, and they will all be gathered in the same spot so that I can. I want to see my children, who aren't technically mine, but I think they are. Don't tell anyone, that's the kind of thing that gets you into the Lifetime movie rotation.
I want to see my Mommy. Whoops! Bursting into tears over here, kleenex, stat! Thinking about this sort of stuff is what gets me.
If you can believe it, they have planned the chemo around my trip so I can still go. I can still go! I have my first treatment on Tuesday and the rest when I get back. So probably just a few weird patches of my hair and maybe one of my eyebrows will fall out during the week I have to recover before I leave, but you know, it's family, they have to love me.
Cancer is not exactly what I would call my friend. But I am growing used to the idea that I will live with it until a safe labeled Acme falls on my head.
So I cry. I burst into tears. But about cancer? Fuck you, Cancer.
Thursday, June 4, 2015
I'm Cured! Um, I guess.
So where's Elliott? Did I die? Back in the hospital? Some other ghastly medical disaster? Believe me, after experiencing that business with the hole in my neck, I've learned that we don't know what we don't know as far as how weird the body can get.
However, the answers are nope, nope, and nope. Where I have been is standing in line. Yes, I have literally been standing in line since May 27th, the date of my last post. Not the same line, sometimes we changed lines, and there have been moments when instead of standing in a line, I've been waiting in large rooms filled to overflowing with people who, like me, are waiting to find out which line to stand in next. It requires a certain Zen outlook to remain positive. But I am! I am positive! Why wouldn't I be? At the end of one of those lines was a doctor who looked at his computer and said "No need for chemo. You are cancer free." Yahooo! Yipppee! Hot Dang! Right?
No. I don't know why. Maybe I've got that weird Baron Munchausen disease, where you don't want to give up being sick. But I don't think so. My genius local therapist, Valerie Rhoda, writes
"The specter of cancer & the recurrences put a damper on any relief & joy because you don't, can't, really trust that it is gone. As you said you were prepared for chemo & odd as it sounds you now have to adjust to no chemo. Chemo represents actively fighting the disease, doing nothing is scary, it's passive"
I was really, really happy. It's just that I'm no wide eyed cancer virgin. I've been cured of this shit before. Twice. And the doctors always say some variation of "You're cured. But don't go too far."
It took a a couple of days to realize how strongly the assumption of chemo in my future had taken hold. The biggest tip off was during my next turn in the giant waiting room. I found myself scanning the room for women who had come up with interesting ways to tie their headscarves, and had to keep reminding myself that my hair wasn't going to fall out. Because I'm not having chemo.
Yet.
See what I mean? I just can't quite get free of this. And if you write me and tell me I have to think positive I'll write you back and it will not be pretty. If my future depends on the quality of my thoughts, after all of this, then I. Am. Doomed.
No, I think I just "have my walls up" as they say on the Bachelor. ( Don't watch the Bachelor? I'm shocked. But every single one of the promiscuous ninnies that line up to be hosed by whichever fatuous himbo is this season's Bachelor announces that she has her walls up as a result of a previous heartbreak.That's usually about one minute before she takes off her underwear.) Leave me alone, I've been stuck at home for a long time
So that's what Bruno and I have been doing. But we sure didn't do it alone.
My friend Marti, fluent in Spanish and willing for reasons unknown to do anything for anyone lucky enough to be her friend, has been with us and we could not have made this transition from private care to the National Healthcare System without her. Leaving at 6:30 in the morning to arrive at the National Health Hospital in Guad in time to wait for four hours before spending twenty minutes with my surgeon, which is just long enough to receive a stack of authorizations written on post-its and scraps of file folder for appointments and tests to be scheduled at the same time in different places with a variety of specialty departments. ( We had to travel up and down stairs and back and forth across the building, making individual appointments at, respectively, plastic surgery, rehabilitation, Xray, imaging, and oh yeah, oncology.) Thanks to Marti and her Spanish and unflappable patience, and Bruno and his ....thereness, I have somehow managed to enter the Mexican Medical system and come out on the other side.
I have wanted, often, to somehow address the village that I live in and their participation in my recovery. I don't know how to do it. It is so much the stuff of the Disney movies of my youth, and so unlike the world I left behind when I moved here, that I just don't know how to describe the way that I have been held aloft for this entire time. Groups of people have coalesced into teams. Sometimes corralled into teams by friend who were born with the get 'r done gene.
Teams and individuals have kept me upright and fed, have groomed my dogs, and given me free passes for counseling, who have provided homemade gruel for the feeding tube when that was still going up my nose, who have kept me on a steady diet of bone broth which I believe to be responsible for the successful healing of my surgery. Fresh aloe vera and honey, cases of Ensure from Costco, handmade cards. Friends who have kept our refrigerator stocked and made sure that Bruno never went without lasagna. Friends who snuck around and collected anonymous envelopes of cash like it was hush money so there would be a little something to help. It's magic, and impossible to adequately describe. I would have to write a song, like Lulu in "To Sir with Love"
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Waiting in Line. |
No. I don't know why. Maybe I've got that weird Baron Munchausen disease, where you don't want to give up being sick. But I don't think so. My genius local therapist, Valerie Rhoda, writes
"The specter of cancer & the recurrences put a damper on any relief & joy because you don't, can't, really trust that it is gone. As you said you were prepared for chemo & odd as it sounds you now have to adjust to no chemo. Chemo represents actively fighting the disease, doing nothing is scary, it's passive"
I was really, really happy. It's just that I'm no wide eyed cancer virgin. I've been cured of this shit before. Twice. And the doctors always say some variation of "You're cured. But don't go too far."
It took a a couple of days to realize how strongly the assumption of chemo in my future had taken hold. The biggest tip off was during my next turn in the giant waiting room. I found myself scanning the room for women who had come up with interesting ways to tie their headscarves, and had to keep reminding myself that my hair wasn't going to fall out. Because I'm not having chemo.
Yet.
See what I mean? I just can't quite get free of this. And if you write me and tell me I have to think positive I'll write you back and it will not be pretty. If my future depends on the quality of my thoughts, after all of this, then I. Am. Doomed.
No, I think I just "have my walls up" as they say on the Bachelor. ( Don't watch the Bachelor? I'm shocked. But every single one of the promiscuous ninnies that line up to be hosed by whichever fatuous himbo is this season's Bachelor announces that she has her walls up as a result of a previous heartbreak.That's usually about one minute before she takes off her underwear.) Leave me alone, I've been stuck at home for a long time
So that's what Bruno and I have been doing. But we sure didn't do it alone.
My friend Marti, fluent in Spanish and willing for reasons unknown to do anything for anyone lucky enough to be her friend, has been with us and we could not have made this transition from private care to the National Healthcare System without her. Leaving at 6:30 in the morning to arrive at the National Health Hospital in Guad in time to wait for four hours before spending twenty minutes with my surgeon, which is just long enough to receive a stack of authorizations written on post-its and scraps of file folder for appointments and tests to be scheduled at the same time in different places with a variety of specialty departments. ( We had to travel up and down stairs and back and forth across the building, making individual appointments at, respectively, plastic surgery, rehabilitation, Xray, imaging, and oh yeah, oncology.) Thanks to Marti and her Spanish and unflappable patience, and Bruno and his ....thereness, I have somehow managed to enter the Mexican Medical system and come out on the other side.
I have wanted, often, to somehow address the village that I live in and their participation in my recovery. I don't know how to do it. It is so much the stuff of the Disney movies of my youth, and so unlike the world I left behind when I moved here, that I just don't know how to describe the way that I have been held aloft for this entire time. Groups of people have coalesced into teams. Sometimes corralled into teams by friend who were born with the get 'r done gene.
Teams and individuals have kept me upright and fed, have groomed my dogs, and given me free passes for counseling, who have provided homemade gruel for the feeding tube when that was still going up my nose, who have kept me on a steady diet of bone broth which I believe to be responsible for the successful healing of my surgery. Fresh aloe vera and honey, cases of Ensure from Costco, handmade cards. Friends who have kept our refrigerator stocked and made sure that Bruno never went without lasagna. Friends who snuck around and collected anonymous envelopes of cash like it was hush money so there would be a little something to help. It's magic, and impossible to adequately describe. I would have to write a song, like Lulu in "To Sir with Love"
In minutes, there were so many comments and likes and words of support and encouragement, I felt like Kim Kardashian.
I want to be very clear about one thing. This isn't about people liking me, facebook thumbs or no. This is about the kind of people that live in this place and the the kind of place that it is. In other words, it's not me, it's you.
I wrote a story about community after my first Christmas in Mexico. As part of my project of getting all my stories under one roof, as it were, I've posted it here. It was a different community, but the magic is the same.
Wednesday, May 27, 2015
You have to try, when you're a girl and you're fighting cancer. It's hard, and believe me I'm not talking about blowing my hair dry and putting on mascara before I wake up my husband in the morning. I'm talking about taking my hair out of it's ponytail and putting on clothes once in a while. Still, you gotta make an effort. It's hard when all the things that have happened have happened to your face, when it's all scarred and crooked, and your lips are just busted up, but you gotta.
It's six weeks since I limped home from the hospital, feeding tube up my nose, IV pole permanantly attached, cast that weighed as much as a kettlebell dragging my arm down, and a drain draining....something, I don't know or care what, from my neck.
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I'm having lunch. The bandage on my neck is holding a drain in place |
I always have napkins and paper towels and bits of rag and washcloths stuffed around. Since the radiation I've had problems with extra saliva (but that's only when I'm not suffering from excessive dry mouth. Listen, I am the list of side effects on the drug commercial) In fact my poor exercise class had developed a special etiquette to cope with the fact that it had become pretty common for me to slobber like a St. Bernard every time I did a move that required bending over. They pretended not to notice and in the next move I would hop over to stand right on the spot where I had drooled on their floor. God, I love that class, I miss them so much.
Then I had the effing fistula to worry about. That required me to really amp up on the paper products because if I ate or drank anything with a consistency more liquid than a cinderblock, I was going to have to mop up my neck and chest, goddam evil disease.
So when I reached for a hanky to dab at my misty eyes in the Doctor's office, I came up with a vile and over-used paper napkin, ripped and wrung out and dotted with mustard colored tumeric stains. A girl had forgotten to make an effort. Oops.
But why was I crying, and leaving tumeric trails on my cheek?
Because I'd gotten a break, that's why.
For some reason, I am often complimented on my courage and positive attitude. I feel guilty for the deception I've managed to perpetrate, because believe me when I tell you that I spend most of my day shaking my fist at God, and wondering why I'm going through this, or swimming around in the murk of a depression so deep and muddy that continuing on to the next event ( chemo! yay!) just seems like a waste of effort. I've done everything already, and I keep having to do more shit. I'm sad, a lot. I'll never be the me I got to know again, and I never said good-bye.
So when Dr Hector explained that I had gotten a break, it was a powerful relief in a pretty bleak landscape.
I didn't even know that I'd dodged a bullet, because nobody had seen any benefit to advising me of the utter unlikelihood of this operation working. But now it's been six weeks, and ....oh God, I'm scared to even talk about it. Here is what my husband wrote the day of the appointment.
Today actually the surgeon revealed how complex the operation had been, and until now we didn't know that the risk of failure had been very high. he recounted most of what transpired during the eight hours, how the lead surgeon had stopped everything half-way through, advising the team he needed to remove a three-inch diameter area next to the tongue, which was subsequently grafted. the graft was at high risk of failing, but is now safe and we all breathed a lot easier.
Dr. Delgado had excised all of the tumor that was visible, including scraping and cleaning the jaw. Not to get too technical, it was a major operation, and the team now is saying that we have a very good chance the cancer was removed. What happens next is evaluation by the team whether to move forward with chemo as preventative measure, which is likely. We will know more after the appointment at Centro next week.
At some point in the future, Dr. Orozco will perform surgery for the stretching and lumpish appearance, because they decided to leave in all the healthy tissue that they could. The procedure will be done as an office surgery under local, and is purely for cosmetic purposes. After everything he'd heard today, Bruno said "I could care less what she looks like after all of this miraculous work you've done!" No leaks, the grafting is secure, we are truly grateful.
Wednesday, May 20, 2015
It Always Happens on the Weekend
Dr Santiago and his battalion of cancerfighting superheroes were not my first team of doctors. My first team, whom I adored, were urbane, professional and educated, and they treated me like a princess.
Nothing but the sheerest desperation would have led me to cheat on them, which is what it felt like to me when I called Dr. Santiago. I didn't even plan to cheat on them. You know how these things are...it just happened.
Although there's a certain amount of party trick value in finding out that by pursing your lips a certain way, you can make a Bellagio style fountain of water jet out of the side of your neck, it freaked me out the first time it happened on Palm Sunday morning. Palm Sunday in Mexico is the beginning of a two week period where the country is essentially closed. Gone Fishin'.
Gone to the beach is the fact of it, and Guadalajara, rich and poor, my doctors included, had headed for the coast. I ended up at Dr.Santiago's because the fix they had put in place to get us through the two week holiday period hadn't lasted the weekend, and I was headed for a panic attack and I didn't have a doctor. It was a Sunday, and Dr. Santiago, who I had been hearing about around town, is one of the few, or possibly the only, local medico who has a fully functioning webpage which allowed me to make an appointment for the next day. In Chapala! No schlepping to Guadalajara! Because obviously I wasn't going to get through the next two weeks in the get up shown below;
This situation had been coming for some time. I had been balking for weeks, absolutely unwilling to admit that anything might be going wrong, although any nitwit that wasn't in one hundred per cent denial would know that the fistula was already something gone wrong.
But see, the way I saw it, I had done my time for Cancer. I had had surgery. I had had part of my tongue removed. It was stage one, clean margins. Done with cancer, let's carry on with my excellent life. No double jeopardy. One bite of the apple only.
But then there was more, and I had to have radiation. Day, after day, every day, for thirty five days, I was driven into Guadalajara by a rotating cast of loving friends. Once there, I would be attached to a bed by means of clasps on a mask, that when placed over my face, were fastened to the corresponding hardware attached to the the bed. Yes! It is the stuff of horror movies. You can be thankful I don't have any pictures of that, although this comes surprisingly close:
So after both of those things happened, nothing else was possible. Because it wouldn't be fair, right? Lightening can't strike three times. Oh boy, fair schmair, that's cancer.
This fistula thing, we all told each other, was because of the radiation. It had made the skin so weak and fragile that it had literally collapsed. That explanation I was willing to buy. When my first surgeon , who had done such an excellent job on my tongue, started talking about operating again, using words like skin grafts, I went deaf. Not possible. No surgery. My surgeon was a fierce little firecracker, and she really, really hated cancer in all it's hideous forms. She also loves surgery.
I, on the other hand, had become afraid of surgery. I never had been before, finding it kind of cool that you disappeared from the world for a snap of the fingers, and then you wake up fixed. But that's when you're talking about a wisdom tooth or something. This was a different animal.
It was that snap of the fingers, that folding of time that made me anxious . I didn't like it anymore that I'd count back "99, 98" but when I got to 97, a whole alternate world had occurred.
Do you remember those Al Jaffee Mad Magazine fold-ins?A regular size magazine page had a normal (for Mad Magazine) picture on it, but you could unfold it and reveal another picture entirely.
Only in this example, of general anaesthesia, when you unfolded the picture, what would be found inside were phone calls to my family in the States, decisions about my quality of life and what it meant, conversations with surgeons about discoveries they had made as a result of cutting me open, good or bad, and what they were going to do about it. And while that picture was coming alive, I would be lost in that crease in time.
The decisions to be made while I was "in the crease" so to speak, would decide whether I could speak or eat or breathe on my own when I woke up. Bruno and I had spent a lot of time in serious and very difficult conversation and we were in agreement on what to do with the choices that we knew about. I knew he wanted what I wanted and would honor my wishes, however difficult the choice. But I was afraid that options would be revealed that we didn't know about, that we couldn't discuss and that Bruno was going to have to choose.
,
My medical duo--oncologist and surgeon-- admitted there were a couple of mysteries they'd like to solve before they put me back under. One, there was something peculiar located at the base of my tongue that kept showing up on MRI's and various other modern diagnostic monstrosities. The mystery thing was getting smaller since my vacay in the chamber of radioactive horrors, but it was still puzzling. It was either malignant, which meant cancer, or it was "necrotic" which meant okay. Believe me, you've come to a hard place in the world when you're hoping for something located in your head to be necrotic.
The second question that begged an answer was, what was causing the fistula? So team one and Bruno and I had a conference and agreed on a plan. The plan called for a pet scan, the only kind of test I hadn't yet taken, horribly expensive, available at one lab. Hopefully this Pet Scan would solve the riddle--is it or isn't it, yes or no? Their other suggestion, which I grabbed on to like a drowning man, and which you've already heard about, was to try to fill the hole in my neck with, well, with surgical crazy glue. There was a chance that it would set and last for long enough for me to enjoy a few months of pretending I'd never heard of cancer, get the pet scan, and gather some strength for the next step. Both parts of this plan met with my approval, because neither involved surgery. The downside was that it left me with no doctor to turn to when the the surgical super glue failed the weekend after it had been put in. It had lasted just long enough for all of us to agree that it had been a big success, and for the my original oncologist and surgeon to shout "Cowabunga" and head for the Pacific Coast.
(Sitting in a new doctor's office the day after Palm Sunday a surgeon in Guadalajara I had never met looked at the photo that Dr. Santiago had snapped and sent on his phone. This remote new surgeon took a less delicate approach to my desire for options other than surgery. Without so much as a glimpse of the real me, going solely on the picture, he didn't hesitate . "Oh Shit" says he."I know what's making that happen. Yep, it's got to go."
"Er," says I, to Dr. Santiago, who was manning the smartphone that made this conference possible, "shall I have a pet scan?"
"Pet scan?" replied the doctor from Guadalajara "Why bother? You're going under the knife, sister, so get used to it.We'll find every thing we need to know once we're in there."
The tone of his response made me feel as though I had asked if I should take a Meyers Briggs Type Indicator, or a Cosmo dating quiz. )
Obviously, this translation of the conversation is something less than accurate. But the gist of the exchange was clear from where I sat, eavesdropping on Dr. Santiago's Samsung.
This is the end of this post, but not the story. Things happened fast after that, and as we know, I left very good hands to end up in very good hands, for which I am grateful. As it turned out, as we got further into the process it appeared that I might be able to eventually see the man who would become my new surgeon through IMSS, or the Mexican National Health Care, and so that had a lot to do with the change. But mostly it was timing. By the time my first doctors got back from their richly deserved annual vacation, the surgery had already been done. The fistula fixed, the cancer removed, and me in the hospital getting better.
Nothing but the sheerest desperation would have led me to cheat on them, which is what it felt like to me when I called Dr. Santiago. I didn't even plan to cheat on them. You know how these things are...it just happened.
Although there's a certain amount of party trick value in finding out that by pursing your lips a certain way, you can make a Bellagio style fountain of water jet out of the side of your neck, it freaked me out the first time it happened on Palm Sunday morning. Palm Sunday in Mexico is the beginning of a two week period where the country is essentially closed. Gone Fishin'.
Gone to the beach is the fact of it, and Guadalajara, rich and poor, my doctors included, had headed for the coast. I ended up at Dr.Santiago's because the fix they had put in place to get us through the two week holiday period hadn't lasted the weekend, and I was headed for a panic attack and I didn't have a doctor. It was a Sunday, and Dr. Santiago, who I had been hearing about around town, is one of the few, or possibly the only, local medico who has a fully functioning webpage which allowed me to make an appointment for the next day. In Chapala! No schlepping to Guadalajara! Because obviously I wasn't going to get through the next two weeks in the get up shown below;
Me, relieved to have gotten an appoint- ment with a Dr. in Chapala for the next day. |
This situation had been coming for some time. I had been balking for weeks, absolutely unwilling to admit that anything might be going wrong, although any nitwit that wasn't in one hundred per cent denial would know that the fistula was already something gone wrong.
But see, the way I saw it, I had done my time for Cancer. I had had surgery. I had had part of my tongue removed. It was stage one, clean margins. Done with cancer, let's carry on with my excellent life. No double jeopardy. One bite of the apple only.
But then there was more, and I had to have radiation. Day, after day, every day, for thirty five days, I was driven into Guadalajara by a rotating cast of loving friends. Once there, I would be attached to a bed by means of clasps on a mask, that when placed over my face, were fastened to the corresponding hardware attached to the the bed. Yes! It is the stuff of horror movies. You can be thankful I don't have any pictures of that, although this comes surprisingly close:
So after both of those things happened, nothing else was possible. Because it wouldn't be fair, right? Lightening can't strike three times. Oh boy, fair schmair, that's cancer.
This fistula thing, we all told each other, was because of the radiation. It had made the skin so weak and fragile that it had literally collapsed. That explanation I was willing to buy. When my first surgeon , who had done such an excellent job on my tongue, started talking about operating again, using words like skin grafts, I went deaf. Not possible. No surgery. My surgeon was a fierce little firecracker, and she really, really hated cancer in all it's hideous forms. She also loves surgery.
I, on the other hand, had become afraid of surgery. I never had been before, finding it kind of cool that you disappeared from the world for a snap of the fingers, and then you wake up fixed. But that's when you're talking about a wisdom tooth or something. This was a different animal.
It was that snap of the fingers, that folding of time that made me anxious . I didn't like it anymore that I'd count back "99, 98" but when I got to 97, a whole alternate world had occurred.
Do you remember those Al Jaffee Mad Magazine fold-ins?A regular size magazine page had a normal (for Mad Magazine) picture on it, but you could unfold it and reveal another picture entirely.
Only in this example, of general anaesthesia, when you unfolded the picture, what would be found inside were phone calls to my family in the States, decisions about my quality of life and what it meant, conversations with surgeons about discoveries they had made as a result of cutting me open, good or bad, and what they were going to do about it. And while that picture was coming alive, I would be lost in that crease in time.
The decisions to be made while I was "in the crease" so to speak, would decide whether I could speak or eat or breathe on my own when I woke up. Bruno and I had spent a lot of time in serious and very difficult conversation and we were in agreement on what to do with the choices that we knew about. I knew he wanted what I wanted and would honor my wishes, however difficult the choice. But I was afraid that options would be revealed that we didn't know about, that we couldn't discuss and that Bruno was going to have to choose.
,
My medical duo--oncologist and surgeon-- admitted there were a couple of mysteries they'd like to solve before they put me back under. One, there was something peculiar located at the base of my tongue that kept showing up on MRI's and various other modern diagnostic monstrosities. The mystery thing was getting smaller since my vacay in the chamber of radioactive horrors, but it was still puzzling. It was either malignant, which meant cancer, or it was "necrotic" which meant okay. Believe me, you've come to a hard place in the world when you're hoping for something located in your head to be necrotic.
The second question that begged an answer was, what was causing the fistula? So team one and Bruno and I had a conference and agreed on a plan. The plan called for a pet scan, the only kind of test I hadn't yet taken, horribly expensive, available at one lab. Hopefully this Pet Scan would solve the riddle--is it or isn't it, yes or no? Their other suggestion, which I grabbed on to like a drowning man, and which you've already heard about, was to try to fill the hole in my neck with, well, with surgical crazy glue. There was a chance that it would set and last for long enough for me to enjoy a few months of pretending I'd never heard of cancer, get the pet scan, and gather some strength for the next step. Both parts of this plan met with my approval, because neither involved surgery. The downside was that it left me with no doctor to turn to when the the surgical super glue failed the weekend after it had been put in. It had lasted just long enough for all of us to agree that it had been a big success, and for the my original oncologist and surgeon to shout "Cowabunga" and head for the Pacific Coast.
(Sitting in a new doctor's office the day after Palm Sunday a surgeon in Guadalajara I had never met looked at the photo that Dr. Santiago had snapped and sent on his phone. This remote new surgeon took a less delicate approach to my desire for options other than surgery. Without so much as a glimpse of the real me, going solely on the picture, he didn't hesitate . "Oh Shit" says he."I know what's making that happen. Yep, it's got to go."
"Er," says I, to Dr. Santiago, who was manning the smartphone that made this conference possible, "shall I have a pet scan?"
"Pet scan?" replied the doctor from Guadalajara "Why bother? You're going under the knife, sister, so get used to it.We'll find every thing we need to know once we're in there."
The tone of his response made me feel as though I had asked if I should take a Meyers Briggs Type Indicator, or a Cosmo dating quiz. )
Obviously, this translation of the conversation is something less than accurate. But the gist of the exchange was clear from where I sat, eavesdropping on Dr. Santiago's Samsung.
This is the end of this post, but not the story. Things happened fast after that, and as we know, I left very good hands to end up in very good hands, for which I am grateful. As it turned out, as we got further into the process it appeared that I might be able to eventually see the man who would become my new surgeon through IMSS, or the Mexican National Health Care, and so that had a lot to do with the change. But mostly it was timing. By the time my first doctors got back from their richly deserved annual vacation, the surgery had already been done. The fistula fixed, the cancer removed, and me in the hospital getting better.
Wednesday, May 13, 2015
What does Cancer Feel Like
There's been a lull in my cancer. I didn't really anticipate when I started this blog that there might be times when I wasn't getting into hilarious scrapes or intense dramas to write about. I secretly had sort of a "The Adventures Of" model in my mind. Cliffhangers! Code Blues, Paddles! Handsome Doctors! Sex and Romance!
That's what happens when your experience of hospitals and medical stories is cobbled together from Dr. Kildare, House, and Grey's Anatomy. In other words, no relationship whatsoever with real life.
Well, there is a regular avalanche of handsome doctors, that is true, but so far the closest anyone has gotten to a sexual escapade is that time I had to pull the leg of my sensible briefs to one side in order to have the incision at my groin examined. And in my opinion, the minute you say "groin" all hope of sexual adventure flies out the window.
At the moment, the thing that is most likely to kill me is boredom.
Cancer, if you're lucky, is just pretty boring. But wait a minute...was it just a month ago that I was confined to that hospital bed, with a tube that felt like a garden hose running through my nose, forbidden to have so much as a sip of water while I was forced to watch vampire movies filmed in a garage in Indiannapolis? That wasn't boring! It was Gitmo!
I wrote a blog post very early in this endeavor, when I realized that I had the freedom to walk from room to room and to watch as much Judge Judy as I could handle, and that only days before I had solemnly sworn that if only I could do those two things, I would be good for the rest of my life ( a promise I have worn threadbare recently and resold more times than Florida beachfront.) That post was written on the seventeenth of April. I was released from the hospital on the thirteenth. Four days later I was grumbling about not being allowed to talk.
A lot happened those first couple of weeks. We had nurses, and Bruno learned how to work the feeding tube, I had a cast on my arm, I couldn't take a shower, fungus was being discovered in the least likely, or probably the most likely, of places. I seemed to be getting blood tests every other morning. I was full of drains and pipes going here and there and then there was that insatiable feeding tube, 3 times a day, 3 bags each time.
As I write this today, I don't even have a band aid on! Little by little the nurses left, the tubes were removed, the bandages came off, the grafts are supervised and determined by two out of three handsome doctors to be "superb" and by the third to be "perfect, but don't forget the story of the woman who...." In other words in one month I have pretty much recovered. From being in the hospital.
Do you know that my cancer was discovered in November of 2013, and I still don't know if I know what cancer feels like? I'm not sure it feels like anything. I think it just does things.
I know what it feels like to wake up post surgery, and to keep trying to do something with something that isn't there anymore. I know what it feels like to have the shit radiated out of you and the inside of your mouth charred black. I know what if feels like to wonder if it's possible to die of anxiety, and to believe that it is not possible to survive another hour of stress while waiting for test results. I certainly know what it feels like to feel doped up, and to wish you were more doped up. And I know what bone deep exhaustion feels like, too, which I prefer to insomnia, and it's late night demons, which also makes the list.
I know what it's like to see your husband cry, and to never want to see it again. I know what it's like to cry yourself, because your life is never going to be the fucking same. I was delighted to learn what it feels like for the love that you always knew was there for your family to turn in an instant from a gas to a solid, to take on form and substance and develop the power to hold you up and make you feel like your life had a point.
I know what it's like to feel happy, I know what it feels like to have faith. I definitely know what it feels like to believe in nothing except for the inevitability of your own misery. That one sucks, let me tell you. When you go there, it is a bad place.
I finally know what it's like to be the same weight as the chart says I'm supposed to be
I just don't know what Cancer feels like.
.
That's what happens when your experience of hospitals and medical stories is cobbled together from Dr. Kildare, House, and Grey's Anatomy. In other words, no relationship whatsoever with real life.
Well, there is a regular avalanche of handsome doctors, that is true, but so far the closest anyone has gotten to a sexual escapade is that time I had to pull the leg of my sensible briefs to one side in order to have the incision at my groin examined. And in my opinion, the minute you say "groin" all hope of sexual adventure flies out the window.
At the moment, the thing that is most likely to kill me is boredom.
Cancer, if you're lucky, is just pretty boring. But wait a minute...was it just a month ago that I was confined to that hospital bed, with a tube that felt like a garden hose running through my nose, forbidden to have so much as a sip of water while I was forced to watch vampire movies filmed in a garage in Indiannapolis? That wasn't boring! It was Gitmo!
I wrote a blog post very early in this endeavor, when I realized that I had the freedom to walk from room to room and to watch as much Judge Judy as I could handle, and that only days before I had solemnly sworn that if only I could do those two things, I would be good for the rest of my life ( a promise I have worn threadbare recently and resold more times than Florida beachfront.) That post was written on the seventeenth of April. I was released from the hospital on the thirteenth. Four days later I was grumbling about not being allowed to talk.
A lot happened those first couple of weeks. We had nurses, and Bruno learned how to work the feeding tube, I had a cast on my arm, I couldn't take a shower, fungus was being discovered in the least likely, or probably the most likely, of places. I seemed to be getting blood tests every other morning. I was full of drains and pipes going here and there and then there was that insatiable feeding tube, 3 times a day, 3 bags each time.
As I write this today, I don't even have a band aid on! Little by little the nurses left, the tubes were removed, the bandages came off, the grafts are supervised and determined by two out of three handsome doctors to be "superb" and by the third to be "perfect, but don't forget the story of the woman who...." In other words in one month I have pretty much recovered. From being in the hospital.
Do you know that my cancer was discovered in November of 2013, and I still don't know if I know what cancer feels like? I'm not sure it feels like anything. I think it just does things.
I know what it feels like to wake up post surgery, and to keep trying to do something with something that isn't there anymore. I know what it feels like to have the shit radiated out of you and the inside of your mouth charred black. I know what if feels like to wonder if it's possible to die of anxiety, and to believe that it is not possible to survive another hour of stress while waiting for test results. I certainly know what it feels like to feel doped up, and to wish you were more doped up. And I know what bone deep exhaustion feels like, too, which I prefer to insomnia, and it's late night demons, which also makes the list.
I know what it's like to see your husband cry, and to never want to see it again. I know what it's like to cry yourself, because your life is never going to be the fucking same. I was delighted to learn what it feels like for the love that you always knew was there for your family to turn in an instant from a gas to a solid, to take on form and substance and develop the power to hold you up and make you feel like your life had a point.
I know what it's like to feel happy, I know what it feels like to have faith. I definitely know what it feels like to believe in nothing except for the inevitability of your own misery. That one sucks, let me tell you. When you go there, it is a bad place.
I finally know what it's like to be the same weight as the chart says I'm supposed to be
I just don't know what Cancer feels like.
.
Saturday, May 9, 2015
Waiting
Honestly? That's what I get for growing old, is one way to look at it. Although it seems as though there's plenty of new stuff going on around the world to kill people, a lot of the old stuff has been eradicated, and people are just living longer, and getting illnesses...like mine...that come along with it. Which is not to say that this evil scourge hasn't been around since Ancient Egypt,
if you believe the papyrus, and it's been mankind's cheerful companion ever since. But let's face it, we've invented all kinds of stuff since then to cause it, and as a trade off, gotten rid of stuff like measles.
Oh.
Anyway, I'm a healthy girl. I pay a lot of attention to eating good food, I exercise, I read Oprah. My friends and I are that kind of woman. But it wasn't always that way.
Several people have mentioned that there was an absence of posting for several days. It's not like I got cured or anything. What was going on was that I was trying to get my healthcare somehow moved from the private sector to the that of IMSS, which is the Mexican insurance system. That move was the ultimate objective. Between that and where we started, there were steps to be taken. Many, many steps. Many exhausting, we are going to kill you while you arrange for your healthcare, now that you're here you have to go there, now that you're there you have to go back, steps. By the time Bruno dragged me home from these exertions every night, I was so tired I could barely even text my Mom, which I like to do in the evening.
That, my friends, was a segue. One of the silver linings--there always are some, no matter how tarnished!--of getting this shit is that it reminded me that writing is good for me. I have stuff floating around that I might as well get under one internet roof while I'm recovering from last week's ordeal. More to come on that. I think. I was emailing with a friend who has been through a similar escapade, and the thing is, it seems like there's a lot going on when you're living through it, but when you reflect back all there is is ....waiting.
Tomorrow is Mother's day, and since I still can't quite wrap my head around what we accomplished and how we accomplished it this week, I want to republish an article I wrote after we'd lived here for a very short time that is my Mother's favorite.
The only relationship it has to my illness is that it may give you an insight into my former lifestyle. As I have written in this blog, the thinking now is that it's pretty much just bad luck and living long enough that is to blame for me being sick. But it's also possible that I laid some groundwork with an exuberant youth that my Uncle referred to as "always happily juiced up." That was the least of it.
I smoked, I drank, I did a lot of other stuff. And when I first moved here, I was given an opportunity to remember one of the more vivid times of that era. Did it give me cancer? I don't know, it's been twenty years since I gave up drinking and drugs, fifteen since I quit smoking. But if you'd like to read the story, it is here.
And we'll get back to the Mexican Insurance System later, dear reader.
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