In Which I Whine, and Try to get Kleenex to Sponsor my Dinner Napkins.

I have an appointment for a new pain therapy this Friday. "What?" Sez you. " I didn't know you were in pain!" and I know you said it, because every one says it.
  
Well, yeah, they cut off  some of my tongue, and then, mad scientist style, they followed that up with 30 days of radiation aimed directly the surgery site, burning it to a fine crisp. That shit hurts, and it's gonna hurt for a long time.
   
Like all survivers, I've learned a sort of etiquette that goes along with cancer treatmentst. You just kind of figure out what people can tolerate and what they can't, and you learn what you yourself can take and what you can't.
 
 Realistically, how long can you stand around in your good outfit saying "Gosh, that's interesting, " and then following it up with "Ow, ouch, whoo, man, OW, oh boy! Damn, that hurts!" Right? Who needs it at a party? Who needs it anywhere?
   Well, you get it. There's just not really a way to work chronic anything into a conversation. and cancer is so gross, God, if I spent one minute talking about what's really happening? Echhhh. I can't even say the word mucus out loud, and apparently I am entirely constructed of....that. Ew.
     
I've developed plenty of eccentricities, the ones that it appears people can live with. At least, I hope it's not just good manners but, no, I think they've really forgotten how bizarre I've become. For example, I have this weird brown bottle with a long snoot on it.Well, snoot is not the right word,it's a needle nose cap designed to get to hard  to reach places, like the way back of my mouth. Several times during a conversation or at out at a meal I will take this bottle and aim that snoot waaay back there and give it a good squirt. I don't even know I'm doing it anymore. Can you imagine someone taking out a can of deodorant and spraying themselves three or four times while you're trying to talk to them about something? It is so strange.Believe me, I only try to get away with this in front of people who love me.
   
What's in the bottle? It's lidocaine, similar to the stuff the dentist gives you before the needle. It certainly takes the pain away, replacing it with an odd stinging numbness, and rendering my tongue useless.  But I do it and don't even realize it! And that's not the only odd thing that I do that people seem to take for granted after a while. I'm thinking about the trail of napkins that follows me wherever I go. And just in case I can get them to sponsor a lifetime supply, let me tell you that it has to be Kleenex dinner napkins, and nothing else. I won't tell you what I do with them, who cares? It's revolting, but it seems to be one of those things people let me do.  I personally would not enjoy talking with someone who dabbed constantly at either corner of their mouth with the Kleenex Dinner Napkin, until coughing up a some kind of hairball and then returning to the conversation without blinking an eye..I make veils out of them to avoid spitting on my audience, and often use them just to blow my nose But there is never a trash can anywhere near by and I've gotten used to that, too.. I just got out of a meeting with the mayor with two of those things stuck in my bra, one in the waistband of my pants and one in my hand, and even he took it in stride.. They might be secretly thinking " Oh my God, that s so revolting," Well suck it, if you are. You should see what goes on at home.

The other thing is, I'm not kidding, when I have to sit down, or go home, I mean at that moment. Not  in a minute, or when you finish your sentence.

     I am embarrassed to report that I  had a client, once, who said that she had to sit, and plopped down on a stone step right where we were standing. I didn't want her to have to look up my dress, so I plopped myself down next to her, leaving the issue of how I was going to get up again for later. She told me that she had MS. I had two thoughts. First of all I didn't all the way know what MS was, but it sounded like the the telethon thing, and I could see she didn't have that. Second, I thought, " Oh, come on, Miss Munchhausen, you could have made it up the fricken' steps and into the car, and then you would be sitting! Now look where we are!"

   Well, paybacks are hell, they say, and now I know.When I have to sit, it's because I've reached sit or fall, a state that comes over me not like a wave, but like a kidnappers hood being dropped over my head.  When I say I'm tired, I'm using the only word in my vocabulary to describe something so far beyond tired, I don't know what else to call it. And all of that comes a lot from having pain all the time.

So there's a new therapy, and they're going to try it on me. They do try new stuff on us, in measured doses. That's how things that weren't available five years ago are available now. I'm going in tomorrow for a new pain treatment that requires a two hour IV (Just like chemo! Yay!) and if it's successful over time, I'll have nothing to whine about. I've had so many treatments I dont' have much of a reaction to whatever any doctor suggests, but I am kind of guardedly excited about it.

But yo, Kleenex, I'm still going to need those Kleenex Dinner Napkins.

It just never fails. The minute the plumbers show up, I am overcome by roaring attacks of flatulence that will not be denied.It is completely involuntary, and clench what muscle I may, any movement at all will release a noise so loud there's not even any point in pretending it didn't happen. The poor plumbers' assistants look as though a chandelier has fallen from the ceiling, and I feel as though my cover as La Patrona is kind of tarnished. I'm Melanie Wilkes, blowing her own hoop skirt up at a tea for Scarlett.
    I must carry on, with my chin held high. I have spent nearly twenty years with Bruno trying to create the illusion that this never happens at all, and now I am reduced to blowing air pockets into my pajama pants in front of the work crew. And woe betide us all when I think I'm alone in the room! I will make a sound like the Queen Mary saluting the Statue of Liberty with a couple of deafening blasts and when I turn around, there again is the plumbers' assistant, looking thunderstruck.

So. Let's move on, shall we? This is not the only indelicacy that somehow has become my new normal. Cancer and it's treatment is gross, and that's that.

   I was so sad when I wrote my last post. Many of you could tell and wrote to me, and I thank you.That feeling of going down for the third time has passed. It always does, and I know that.
   So what happened? I dunno. You tell me. The Big Giant Something got a hold of me before I went down for the fourth time, and I realized that night in bed that I was back.

Of course. It always passes. Always.

 I knew it would pass because I'm fifty seven, and I've been through some shit. I knew it would pass because my sister and my step daughter, who are my Spirit Guides, kept telling me so, although there were many times when it was only because my sister and my step daughter,(the unlikeliest Spirit Guide in the world, by the way, with her Fendi and glossy hair),  kept telling me so. That's the bottom of the cycle, when all you've got is knowing that it will get better, and hopefully someone to tell you so, but you can't remember that it's ever been any different, and you can't believe that it's ever going to change. Horrible. Hurts.

And passes.

And then there's this plumbing thing that's happening. Really? Plumbing problems, now?
Yes.
This is what happened practically the minute that I published that post, from the depths of that well where I knew only God was going to be able to save me. The plumbers came. It doesn't matter why, but I'm ridiculously panicky about things having to do with home repair.They did their job, and then came to me and reported that they suspected a leak, either under the floor or in the walls. Excavation would be required. This would be a CSI operation, since they had no idea where to look. This was not exactly what I was expecting from God. Hmm. Mysterious ways and whatnot.

In the state I was in, I felt...nothing. No, what happened was, a clear image of a tree branch presented itself in my mind, and then snapped itself in two. I could not absorb the tearing up of tile floors until a leak was found. And what then? Putting the tile back? Putting back the concrete walls? No. Broken branch. I had been crying buckets all week, sobbing when the breeze blew, and that just dried it up. For a little while. It made me feel so scared, which my therapist, Valerie Rhoda, explained was me feeling like the cancer had spread to the house. Yes, possibly. I was thinking it might be about costing money we couldn't possibly have to undertake an operation like that, but mostly it, it just sounded ...impossible.

   But you know what? When Bruno got home, he didn't throw his hands in the air and say " Oh, Lawd!" When a new cast of plumbers came to look, none of them looked at each other and cried "Oh, no,what shall we do!?" In fact, nobody that knew anything, which does NOT include me, freaked out at all. Below you will see pictures of all my worst nightmares coming true. Thank you, God. Hilarious.

Is it here? No!

How about here? No!

CSI Detective Brad Grieve using sonar so the house didn't have

to be completely torn up.It ended up being maybe 5 locations they
had to excavate before they found the leak.
Pretty cool.

Somehow, it was during this chaos that I got tossed back up on the beach from the ocean of black depression that I thought might just drown me. Hate my life? That's crazy talk! I love my life, and want it and wish some things were different. I'll try my best to make them different, to get to the finish line even if I am stumbling. I am already being held up by my friends--you know how they do as you get closer and start really falling down-- my friends and my husband and my spirit guides hold me up and make sure I don't fall apart or fall down with the finish line in sight.
I went from feeling despair to living my life, feeling normal, having my house torn up, getting chemo on Monday. What happened? Like I said, you tell me.

Mind you, the dial has only swung to the middle, not all the way to the other side.
I mean,I'm going to chemotherapy on Monday, and I haven't done laundry in eight days because my house is torn up from end to end .I think my posse would be a little alarmed if I was feeling joyful about it.
No, I am right in the middle. I will spend a lot of days just boringly being me.
This entails;
   Wishing I was better at meditating. wishing I was motivated  to attend free online College courses instead of watching Judge Judy. Wishing I would study Spanish. Thinking I need to start exercising.
   I will wish I had that elusive gene, the Pinterest gene, that makes it impossible for some people to sit in their house if it's not spic 'n span, I will spend hours on Pinterest. I will be grateful and delighted that I'm out of the abyss, There's going to be a lot of gratitude involved.I will dream about the day that I  feel that charge of electricity that comes with joy. At Christmas, maybe, or on a beach vacation with my family. Oh, I know it's there.
Someday.
It's not far now.

   

Grief and Gratitude

I am, shockingly, a member of a church. Old time religion.
 I say shocking because it seems so out of fashion among the people I hang out with. Most of my friends look serious and say something like "Oh , I'm spiritual, not religious", or "My religion was such bullshit when I was growing up that I rejected it and went out and shot heroin," something along those lines. I have more than a few friends who insist that we are here, and then gone, that our existence is nothing but an accident of cells banging together.

It's a choice we are each allowed to make, and since I'm too lazy to organize a whole church with its own songs and literature etc., for myself, I stick to the one I was raised in.
   
 I am aware of the mistakes and atrocities that have been, are being, made in the name of religion. I can't help you there. All I know is that in a situation like mine, I gotta have a Something to depend on. A Big Giant Something. I find comfort in the things I recognize from childhood, no matter where they may be found, so my reasons are neither holy or pure. Going to church reminds me of the days when my sister and I wore matching hats at Easter Time.

As far as my big Something goes, I don't treat him very well. I just want him to get me through this cancer. Period.
 Example: I am alive through a series of miracles, medical and otherwise. Right now my blood is cheerfully coursing through veins ( and so forth, you know how I am about anatomical language ) that once were running down my arm, my arm is being supplied by blood that once was running through my groin area. What's happening in my groin I don't know, perhaps the doctors thought it it was no longer a big deal to me, but whatever it is, it's working.
   
For two days after surgery, someone came in every other hour with a miniature doppler machine, much more powerful than a stethoscope, and gently ran it over the area of the skin graft. With it, both the nurse and I could hear the sound of the ocean, which was actually the sound of blood running through the successfully connected veins. Can you imagine? I gotta tell you, for me, it was hard not to feel a Big Giant Something at work there.

 However, and this is just between you and me and the internet. I hate my fucking life. I can't do the things I love to do, so what am I doing here? If I was talking to you, I would sound like one of those awful teenagers who has been watching too much of  the reality show in which the subject always receives a BMW as the high note of her sixteenth birthday party. The party is invariably on a yacht or in a circus tent, and starts with a day of professional hair and make up and mani/pedis for everyone she knows. Then there's the party with a celebrity band, and then she gets the BMW.  Can you hear her if she received the keys to a nice sensible Prius instead?
 
 " Oh gee, thanks a lot. What am I supposed to do with this? It's a Prius. All my friends have Land Rovers." 
  That's me.

I know how that sounds. Ungrateful. It sounds that way because it feels that way. I told you, I hate my fucking life. What? Are you surprised? Shocked? Do you want it?  My tongue hurts every minute of the day and I talk like I have my mouth full of rocks, and if I did,they would be falling down my shirt. Want it? Yeah, that's what I thought. And by the way, what is my Big Giant Something up to in the first place.

But I have a sign on my wall, where I post important sayings that immediately become invisible, that says "Smile. You don't own all the problems in the world"
   
I once read ( or heard, or possibly just decided ) that a human does not have the ability to conceive of a God larger than their relationship with their parents. Time has taught me how much more capable and interesting and loving and sometimes freakishly misguided my parents were. But on the subject of their ability to run the universe and count the hairs on my head and know when a sparrow has fallen out of a tree and whatnot, I'm quite clear. It would be a stretch. So that means  I have to have a bigger God than I am able to think of. Give that some thought. I can only meditate on it for a few minutes before it gets too big for me. I interpret it as meaning that if whatever I'm imagining isn't big enough. I gotta believe that God is bigger. That's where it gets outside my limits. I know that my having cancer is not a failure of thinking the right thoughts or having the right God, and I know that if I close my eyes and thing about wonderful things, Disney style, everything will be okay. Nope, it's just something that is outside the limits of my ability to conceive. So instead, I'm going to keep my eyes open.

In West Virginia, I rented a private tub for thirty minutes, filled with the spring water for which the resort is famous, heated to one hundred and four degrees and filled up with magic potions.The room, also completely private, was made of cedar , floor, walls, ceiling, and had a window in the far end that looked out on the sky. The tub was big enough to walk around in, and there was a shower in case you got too hot, and stacks of fat, soft, towels that made you hate the ones you have at home. It was lolling around in that tub and looking out the window, that blue sky, the clouds, the tops of spruce trees that really got me going down this sort of mystical trail. Life is hard for me right now, but there's still that window.

photo courtesy of Annie Campbell

     Perhaps I am too impatient. Less than five months ago there was a moment when I was attached to the feeding tube. The feeding tube was also supplying my hydration, as I was not allowed to get my mouth wet at all. My arm was in the cast. I hadn't had any kind of a drink of water in nine days.

     
The home nurse on duty that day suddenly brought a stool over, and an assortment of supplies. She sat down in front of me and, one q-tip at a time, one tooth at a time, scrubbed them. She did the same with the inside of my mouth, using tongue depressors wrapped in gauze and a spray bottle of disenfectant. That was the first time that even that much moisture had been allowed in my mouth, and when she got it clean, oh, I heard that choir of angels, let me tell you

And now I am writing to you about having the same kind of moment in a spa tub in West Virginia. Bruno always points out when I cry about spilling food while I eat that at least it's not coming out of the side of my neck.

Listen it sucks, it really does.I have more treatments, more doctors,more medicine,more blood tests, more trips in and out of the city, a giant sucking hole in my bank account and the best case scenario includes a lifetime of looking over my shoulder.That's me getting the keys to the Prius.

I gotta keep my eyes open though. The difference between rejoicing because someone brushed your teeth with a q-tip and rejoicing because you're in looking at clouds float by from a private tub in the mountains...well, what will come next? I get that it's going to come along with chemo, like a fab party favor with a terrible meal.I get that I may not have ordered it, because I've never even seen the menu it will come from.

Maybe it will be a Mercedes.

Life is Like a Bowl of Cherries!

Boy, am I glad I'm going to finally see my psychologist in person this week. We've communicated via email, and she's somehow managed to help me that way, but remember, I wasn't able to talk  before. Talk therapy is best practiced, I believe, with someone who can talk.

 I'm in a tricky place, my friends. What do I do, now that I'm well enough to do some things, but not all things? And I kind of don't want to do anything. I don't want to write, in case you're wondering where I've been since the twentieth of June.

 My life doesn't feel like it belongs to me. It feels like I showed up at someone's door after being robbed on the highway and had to borrow something to wear, and somehow that's all I'm ever going to have, and it doesn't fit right. If I could scratch from the inside, that's where I itch.

 Jesus, I look at the pictures on facebook and can't imagine who that is waving so cheerfully. Photographic evidence suggests that not only am I okay, I'm awesome. I keep explaining to people that I'm not going to snap a quick selfie during the times that I'm flat on my back staring up at the ceiling fan whap around and around,I'm not Kim Kardashian for Pete's sake,but I had many of those moments. At least as many as the ones that are chosen to be posted online. Look at this ;

Fun, right? Of course.This is a photo collage of our family vacay in the mountains. Look at me! I'm celebrating the Fourth of July in matching scarves with my Mom! Look at me doing a touchdown dance because I scored in a game with the graceless name of Cornhole. ( Come on. Is it just me?) I'm spending quality time with my sister, sharing a morning routine that developed  instantly and without discussion to be together, and that I miss every day. There's my nephew with his wife and kids, and my adorable niece, and my great nephew. And look, there's my brother!

All of these photos documenting my super fun life were taken on a recent visit to see my family, and if that's all you knew of me, you wouldn't think emotional suffering was my close personal companion.

But that's been true for a while, and  it was miraculous, indescribable, to be with the most understanding people of all, my family, when I tried a few baby steps back into the human race.

 During those two weeks my brain was kept busy. It's distracting spending every moment either bursting into tears or having a great time, caught between enjoying the feeling of being something besides a cancer patient, and feeling like a freak because, well, that's what I am.

   I tried eating solid food again with very iffy results, and sat at a table three times a day making only slightly less of a mess than my almost two year old nephew. I may have made more of a mess at some of the meals. I went from using a whiteboard to communicate to trying to talk at the dinner table with some really smart, funny people, and having some smart funny things to say, but not being able to get them out before I had swallowed my food and chased it with water. By then, the conversation would have moved on to a new and different place, and my witty comment had to die on the vine in my head. My head is a withered vine of unsaid witty comments.

But there's more.
When we left the mountain resort, I was able to spend some time with my stepchilluns, who are my favorite people in the world. That was wonderful too, and there are pictures to prove it, believe me. To look at those photos, you'd think I was a Real Housewife of Northern Virginia. Their Mom was obviously once married to My Husband, and I often sneak glances when she's not looking and wonder how that happened, but I have grown to love her dearly, and on this trip she pampered and cossetted me as though I was a cancer patient. Hahah.
  My two daughters helped me take a step toward chemotherapy that I wanted to share specifically with them to kind of include them in "my journey" (One of them is my favorite. You know which one you are.)

My thinking was that it was a step closer to my hair falling out, and we'll all be a little more used to me this way.It still seems like a good idea to me. However,  I had a chemo on Monday, and I have two more which I suspect are going to be spaced three or four weeks apart. It gives me the suspicion that my hair's not going anywhere. So now I have two wigs, two turbans, two little caps to wear underneath hats and to sleep in. Oh, and a really cute short haircut.

The photos don't lie. All of this happened, all of it was wonderful. I learned that you can enjoy yourself and be depressed. Now that I'm stronger,  I'm going to try to string together some "enjoy yourselfs" but maybe not too many, too soon, even if it does take my mind off feeling sad and as though sometimes I can't push the dumb rock up this hill anymore. (I can, by the way ) I've never thought that it was my entitlement to feel good all the time, and I'm persuaded that it would be a poor idea if the option were available.

By God, everyone should write a blog. I feel better. Not perfect, not "happy" but aware that I have access to "enjoy yourselfs," lots of them, and I can go out and get them as I choose.

That makes this stupid outfit I borrowed after getting robbed on the highway feel a little better.

Chemo Sucks. Who Knew?

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.


 

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?  

The short curly (!) hair is what's growing in since my
last dance with chemo. That whole area just went...
bald. Which I didn't know until I wore my hair in a fabulous updo to
a party and caught sight of myself in a corner mirror.

   
      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.
 

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.

Waiting in Line.

    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"

Got out yesterday to my first Dancefit class with James since
the surgery. Christine wrote this
 "

So looked who joined us for exercise this morning! She started at the back but by the end of the class she was on stage with James. So not surprising. Welcome back Elliott xxxxxx

   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.

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.

I'm having lunch. The bandage on my neck is
holding a drain in place

    Last week I cried at the doctors office. I did, I broke down in tears, and had to reach for a tissue from my purse.

    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.
 

Dr. Hector, Vascular Surgeon who gave
me good news and made me cry. You can see
that the scar starts at my lip and travels down to that
drapey part under my neck. You can also see
my bra strap, because I'm a professional model

    One time Bruno and I were driving home from a medical appointment at the National Health in Tlajamulco  and I wanted coffee. So used was I to the absurd condition I was living in I took off my blouse and rode home in my bra, napkins tied around my neck with a bandana. Never thought twice about it. Gross. But I can tell you that after a few months of that, the idea of reaching for a paper towel, dabbing the hole in my neck, and then throwing it away before reaching for another a second later was absurd. I was using handfuls, all the time, and I've grown very careless about their care and storage in between uses. Also,  I've developed the habit of adding tumeric, a well known anticancer superfood, to practically everything I eat..
 
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.

Dr. Hector is checking out the integration of the skin graft on
the inside of my mouth. I could tell he was happy...although he still
had to tell me a scary story before I left.

Bless his heart, we truly are grateful, and he really doesn't care about the "stretching and lumpish" appearance-- which is revolting, by the way, but I have noticed that it's getting more and more normal looking as time goes by. Six weeks isn't that long. I'm getting better, I really am. Even without trying.

   

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;

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:

Athletic types will recognize this as a hockey mask, but
it's actually surprisingly close to the hideous apparatus they actually used.
On Halloween, I pasted a Bandido moustache on it when the attendants
weren't  looking. Haha. A little radiation humor.

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.

It's a shame about the quality of my one and only picture of Dr. Delgado.
He's the one who played Luis Miguel instead of having me count backward.
Look at me..don't I look like someone who's hoping to get asked to Prom?

 
 

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.
.

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.
 

Although Bruno is used to the absurd crushes I have on any and every white coated Mexican Doctor,  he was  still surprised to see me flip the hem of my dress up over my head and pull my sensible panties to one side. Turns out, he had completely forgotten that during the operation, an incision had been made at the very top of my leg. Where the rubber meets the road, so to speak.

    This incision, if you can believe it, provided the necessary ductwork ( nothing is going to make me start using words like "veins and arteries") to replace the ones that were removed with this sizeable patch (do NOT click if you're not the kind of person who likes medical stuff. In other words, me.) of skin, that was then transferred to the place in my mouth causing all the problems.  Honest to God, it's kind of incredible, but because of all that, blood is being carried back and forth from old skin to new, and the new skin is settling into it's new home and doing nicely, thank you very much, and the horrible fistula is....fixed. I can eat, I can drink, I can sit around and feel sorry for myself...oh, oops. Lost my train of thought. I know everybody thinks I spend all day dancing on my tip toes and counting my blessings, but frankly, that is seldom the case.

   
   So, back to Bruno's shock at what seemed to be a sudden fit involving indecent exposure This happened in the private offices of our plastic surgeon. I love him with the same fatuous giddiness that is my response to all the white coats, with their olive skin and haughty Conquistador attitudes, but my feelings for him are tinged with hostility. The other guys just tell me I'm doing awesome.
 " I think that it is perfect" they say to each other in their devastating accents, adding a sort of latin gesture that in Alabama would be a chest thump. But Dr. Hector likes to throw in a scary story, a little morality tale.

Dr. Hector is on the right. That's Dr Santiago Hernandez
to my left. He's my team co-ordinater, so I get him in all the pictures.

  I was born in Germany, and my brothers and sister and I were raised on a book called Der Strewelpeter,  Dr. Hector could have written it. Every story in that book ended with the most hideous end coming to bad little children who broke the rules....eaten by sharks, getting set on fire, having their thumbs cut off...and that's the kind of thing Dr. Hector likes to throw in after telling me that everything is fine. When my horror at how mean he is shows up on my face, that's when he throws in the Latin shrug. "Well," says he "It is for you," as though I've got some nerve to look terrified at his awful fables.

    So, because of Dr. Hector, Mr. Wolf in sheep's clothing--I mean, look at that face! You can't imagine him being scary, can you?--because of him, I'm back on silence. I was given permission to talk normally by the oncological surgeon, but apparently the women in his life are too dazzled to talk much, so he didn't know what normal talking is. And Dr. Hector told Bruno one of his dumb scary stories about what would happen if I didn't shut the hell up right now, and stay shut up for an in definite period, and so... I'm back to my whiteboard.

This is me, using old school face time with my Mom

 So this is how I'll be winning friends and influencing nobody for the next couple of months. But listen to this...He ALSO said, in front of Bruno, the chief custodian, that I can't type with my left hand!

   Um, hello, I'm trying to write a blog here because I can't talk! But see, just when I get snippy like that, I see Dr Hector's face, and I hear him say "Well,"( latin shrug,) "It is for you."

And I think of all of you...Oh my God, what this community has done for me during this time! And I think "Well....it is for them."

I gotta work on that shrug, though.

All right, all right, my teeth aren't like totally black. I admit that last post was a little on the melodramatic, "Why Me, Lord" side. We all know that the likelier question is "Why not me?" It's not as if we're talking about a prize, either blue ribbon or booby, that somebody wins. Or one of those lottery type things so popular with the young adult set these days, where if they pull your name out of a bingo hopper, you get to spend the next two months of your life training in parkour before being let loose in a jungle full of people that hate you with nothing but a can of sardines and a sewing kit. You know,cancer, shit like that,  you just get 'em. Or you don't. And you get well. Or you don't. But I aim to have some influence over that last thing.

    Bruno has Type 1 diabetes, insulin dependent. He was 38 years old when it arrived in his life, just to mess with an otherwise very nice existence. I should know, I've met his first wife. Seen some photos. It didn't suck.

      His doctor told him that there were eight variables that had to line up just so in order for the result to be Type 1 diabetes at age 38. A little shift to the right, a rearrangement of a molecule to the left, and he wouldn't have to know how to spell insulin. Same with me. It just is.

    Although I will say that any insurance company would  look at my family history and think "Wheeeee!" as they brought out the big red rubber "Denied" stamp. I'm just sayin'. Not the first case of cancer in my family.

      One of the things that has worn me down, chile', is that I haven't been allowed to talk since the surgery. Do you realize what that means? Exactly! It means Bruno can say whatever he wants to me with no fear of one of my razor sharp comebacks shredding his pathetically ill constructed logic to ribbons, as is usually the case around here.

          Oh, take the talking out of a relationship,my dears, and what you have left is very interesting indeed. What you have is "tone", which has nearly deafened me on more than one occasion this past month. I will say this however. Wordless it may be, but I'm pretty sure that there have been times when Bruno and I have managed to have fights. Yes! He has argued with pitiful,blue-eyed, hollow-cheeked, lace hankie-and-smelling salts wielding me! As if I could somehow, in my present condition, be annoying. It beggars the imagination.

( This seems like a good moment to share that I overheard one of the nurses say, in Spanish she didn't think I could understand, "Boy, it's a good thing she was so fat to start with!" I mean, in my imagination I have ringlets and wear beribboned bedjackets, but that's not what Bruno is looking at )

   Well. It turns out you can fight without talking. It also turns out that having cancer, before, during, or after, doesn't make you absolutely right absolutely all of the time. Although it should. It seems like that ought to be the very least I get out of this, the right to be always right. However, it seems that the longer this goes on, the less likely my husband is to instantly do my silent bidding, which I write on a white board. But when I have to explain why? When it's not immediate, unquestioning, but requires an explanation? The whiteboard is not that satisfactory.

 It is impossible to argue using a whiteboard! He says whatever he wants to say, and then by the time I have written my scathing reply, or my ironclad arguments as to why he should do whatever it is I'm after,  as often as not he has drifted out of the room, wondering what to have for dinner.

   Today, we go to see the surgeons in Guadalajara, and I am hoping that the embargo on my talking will be lifted. Oh the river of words I have stored up for him!

Mostly, they are "Thank you."
 

No photos, please!

I cannot imagine a greater indignity, on top of every other little indignity that is being visited upon me,than to have my teeth turn black! Now how am I going to explain that going around town? "Oh don't mind my black teeth, I haven't actually been eating charcoal, it's just ANOTHER side effect of radiation!" Oh, how I loathe side effects, minions of evil.

     Do you get that in addition to the surgery and the cancer itself, I have fungus in my butt and black teeth? I'm a Real Housewife of Ajijic, dammit, not some serf lolling around in the streets of Olde London Towne, about to have a bucket of sewage dropped on my head while I beg for alms. Give me a break.

   Oh well, never mind that. I just wanted to vent a little bit. My friend Linda has been leaning on me to let her buy me a wig, and I totally gave in when I realized that the one I liked has little holes where the arms of your eyeglasses go...how cool is that! Jesus, anyone who isn't marketing to the 50 and up is crazy.. that little selling point totally won me over. The reason she wants me to have a wig? Right. Chemo.
   
     Chemo came at me out of literally nowhere. I knew that while I was in surgery having skin taken from my groin to replace the skin that was being taken from arm to replace the skin that our evil foe cancer had chewed up pac-man style from the inside of my mouth, it had been mentioned that if there were cells remaining after Dr. Senor Rockstar cut what he could locate out, well, then there would be chemo. They told us that. But I thought they meant, like, down the road a ways. In a bunch of years. Maybe never.
  That's not what they meant. They meant now.

     My stepdaughter once apologized to me for not responding to the original news of my cancer diagnosis with suitable gravitas. But she was right! The only person who did respond properly was my sister, who responds to any and all news with gravitas suitable for a car wreck, regardless.
   
      At the time however, when someone finally said "cancer" in relationship to the painful sores that felt like fever blisters on my tongue, I was pleased. I'd been to four different doctors, and they'd all said it would fix itself, but it definitely was not fixing itself. It hurt.
 
      So when Dr. Edgard said cancer, I was relieved. What's the big deal, right? Gee Whiz, who hasn't had cancer? If it's on your tongue, you laser it off, or something, and there you go, good as new. I'm a modern woman, and I did not react as though I had just received serious bad news.

     Turns out, I'm a modern woman and kind of an idiot. Because, I had just gotten some really, really bad news.
   
  There was a great deal of emotional terrain to be covered, it turned out. When they start talking about surgery and your tongue, how your life is going to change--I just wrote about that, right? the certain knowledge that you are never going to be "you" again, --on and on,when they're tosssng out words like "malignancy" and "tumor"  and money, money, money, money, you start to realize, you've become one of those people that you've always thanked God you're not. I felt blindsided, suckerpunched.
 
 I had surgery on my tongue in November of 13, and it was deemed to be a big success, wide margins, everybody happy. ( see, you know what I'm talking about when I say margins, don't you. We've ALL had experience with this bitch, whether our own, or someone close to us.) My follow up appointments became less grave, more social, less frequent. Annual trip to Virginia? Why not!?
 
 Well,that trip almost killed me, what with it's hillbilly cousins and lyme disease ticks and an abcessing tooth. I was there for two months, and there was some hideous redneck complaint plaguing me every minute of every day, but it wasn't cancer. So I came home.
 
      And found out that I needed radiation. because the abcessing tooth and a variety of other unpredictable factors kept returning unclear results. Bruno and I spent two months in the most abject misery, endlessly driving, getting tests done, waiting forresults, (Does she? Doesn't she?) waiting for an appointment with the Doctor to go over the results, and then finding that we knew nothing. Except that something wasn't good. Another test, more waiting. and then finally, the diagnosis.

        I need radiation. No more surgery, the tongue has a finite amount from which to cut, so the choices were radiation and radiation. To find this out when I had been living in the bliss of having put it all behind me?  Suckerpunch.
   
       This blog has always been intended to be a tribute,to my friends in Ajijic and how they stepped up to make the impossible possible.. I will tell that story, but to do Pam and the rest of the crew justice, it will  have be in an entry of it's own.

The "Real Housewives" that got me back and forth to Guadalajara for
Radiation, and has kept me fed all this time.
Crew Boss  Pamela is second from your right.
 There are so many more (for instance, all the husbands) who
shown here, but I hope time and more pix  will give them the credit they deserve.

So you know, however, during the radiation they got me through 36 trips to Guadalajara and back, and through the same amount of sessions of radiation.

     After that, tests, and waiting and consulting. And then more tests to compare to the first batch and then...Yes! "The mass" was shrinking, it was softer it was smaller it was going, going, it was going....

      And then there was the morning when the coffee leaked out of my neck. That was because suddenly, a tunnel had been created where one didn't belong. Terrifying and mysterious. But, Bruno and I were positive, not cancer. This time we knew I had been cured...I had just been through radiation, which everyone knows makes your skin weak and weird and likely to do weird things.

      So it was determined, mostly by the internet and my husband, that we were dealing with a side effect from the radiation, although we never quite got the doctors to sign off on that theory. They didn't reject it exactly, but they wanted  a PET scan as soon as they got back from Holy Week. A PET Scan is the top of the line of the tests, and costs about twice as the regular varieties. And we'd kind of had enough of the scan-wait-results loop.

     But here's the thing. I could not wait a week to get fixed. And I definitly couldn't wait a week to be in the hands of someone with authority who could give me some information and reassurance on why stuff was leaking out of my head.

       So by the time my team of doctors got back from vacation, I was ("Surprise!"), recuperating from an 8 hour surgery performed by a team of surgeons I'd never met before vacation week started, and where they found some cancer causing that nasty tunnel. Suckerpunch.
   
  Before this, I had been starting to feel good. Healthy. In the morning, it had been taking me a minute to remember "Now wait,there's something the matter with me, what is it, what is it.....oh yeah!"
    The food that my friends have been blending, first to go through the feeding tube, and now for me to drink as soup and smoothies has been really giving my body what it needs, and my body has been responding.  I have been getting better, feeling better, functioning better. I'm cured!

    Except I need chemo. Suckerpunch, you motherfucker, suckerpunch.

But honest to God...the black teeth? Give me a break.