Lemonade

It turns out there were 32 staples, not 28 or 30 as I had originally counted.  I found this out as Dr. Frenchy’s physician assistant was removing them last week and I was counting down… 30, 29, 28… I got down to 11 and she stopped and said, “I think you miscounted – there are 13 more.”

Fuuuuuuuuuuuuuuuuuuuuuuuuck.

I didn’t say that because the PA, Mary Ellen, was 18 years old and had just arrived in Los Angeles from a farm somewhere in Kansas where she had spent her youth whistling happily while she did her chores and leading the family in the joyful odes to Jesus they would sing every night after dinner.  I may have made some (or all) of that up based on her appearance but I think any inaccuracies are merely matters of degrees.  There was a farm in her past, I’m sure of it.

Having staples removed is not as painful as the part where they cut you open but it certainly isn’t pleasant.  My reactions ranged from “ow” to “OW!” and every time Mary Beth apologized.  So standing outside the room one would have heard a brief moment of silence then “ow” and then “sorry.”  32 times.

Different kind of staples. Mine weren’t easy.

The staples were replaced on the main incision with steri-strips, which are thin, narrow bandages used to keep wounds closed.  The big incision on my right side from my thoracotomy – the one where they removed a rib and didn’t bother to tell me – was held together with steri-strips.  No staples or sutures, just glue and steri-strips.  I find that disturbing.

You are supposed to just wait until they fall off but the ones on this incision up the middle of my abdomen were bothering me.  They pulled at the skin and hung up on my clothes, causing more pain, so I decided after a little more than a week that they needed to come off.  In my defense some of them were really close to falling off, I just helped the process along a bit.  That may have been a strategic error.  Ow, is all I’m saying.

Beyond that its all about the digestive system and its apparent unhappiness at being poked and prodded and moved around.  To be clear, there was no cutting of anything internal this time, but Dr. Frenchy definitely went for a little stroll through my guts and they have not been pleased ever since.

Before this most recent surgery I was down to 175 pounds.  After the surgery and several days of a liquid/soft diet, I was down to 167 pounds.  For those of you keeping score at home that would be a total weight loss of 69 pounds since before the first surgery.  That’s about 30% of my body weight.  I’ve managed to put a few back on – 172 this morning, but I’m basically bones and a bunch of loose, saggy, 46 year old skin.

I know that I look a lot different than I used to but since I’m living with it every day it’s not as shocking as it is to the casual observer.  I ran into someone last week that I hadn’t seen since before the surgery and the look on their face was something like “Holy fuck, what the hell happened to you?”

Cancer.  That’s what happened.

Before this most recent surgery my food issues were still there but not as severe as they had been.  I was able to eat without wanting to die afterward and my weight had at least stabilized.  Now I’ve taken a giant step backward and I’m dealing with pain, nausea, things tasting like sawdust, and other unpleasantness best left unexplored in this forum.

Interestingly I have started having weird cravings.  The other day I was watching something on TV and the characters were having lemonade.  I haven’t had lemonade since I was a kid – never really liked it – but for some reason lemonade sounding AMAZING so I went to the grocery store, got a big bottle of it, and loved every drop of it.  I am now obsessed with lemonade.

In other whining my energy level is basically zero and I have a hard time sleeping through the night without drugging myself into a stupor.

But it’s getting better and I’m trying to embrace the unknown aspect of the whole thing. The hardest part is trying not to ascribe every random pain, pang, twitch, and twinge to the absolute surety that its root cause is cancer.  Even if it’s there, it couldn’t have grown and spread to the point where it is doing things that would be causing pains, pangs, twitches, and twinges in three short weeks.

Having said that, some of the pains, pangs, twitches, and twinges are in those areas that were of concern before the surgery and are not near incisions so yeah, tick tock, is it June yet?

Hopelessly Devoted

Nothing was jumping out at me as a word of the day until I saw Phillip Phillips perform on the American Idol results show.

Before we go any further, yes, I still watch American Idol and no, I am not at all ashamed.  And especially this season because Nicki Minaj is 17 different kinds of crazy and I love every single one of them.  She did this whole thing about pancakes last night and I’m like, “Yes, I totally get you, sister!”

But back to my word… I’m not usually a fan of PP’s style of music; this Mumford and Sons new folk stuff kind of makes me want to take a shower and put on something that has the complete opposite atomic structure as flannel, but this song just hit me in a way that I wasn’t expecting at all.  I got a little weepy while watching American Idol – speaking of 17 different kinds of crazy, y’all.  Anyway, the song is “Gone, Gone, Gone” and the word it inspires in me is “devotion.”

I’ve had so many good people in my corner – from the people actually hauling my sick ass around to the people thinking of me, praying for me, worried about me, and beyond.  There are more of you than I would have ever believed and certainly more than I think I deserve, and so to you I say “back atcha” with this song:

Violet Newstead, Please Hold

Those who know me know that among my greatest strengths are my endless patience and deep reserves of an almost blissful serenity that gets me through… oh, hell, even I can’t stay that with a straight face and I went to acting school.

So I had my follow up visit with the oncologist, Dr. Wile E. Coyote Super Genius, and got a story that has both good news and no news and insanely frustrating news and worrisome news.  It’s also a story that is both the same and fundamentally different than the one I got in the hospital.  I’m going to chalk the latter up to me hearing what I wanted to hear and a LOT of painkillers.  To be frank I’m surprised I didn’t hear that they had installed super powers when they went in to do the surgery and that now I have the ability to move heavy objects with my mind and talk to certain woodland creatures, but only about politics.

The story is thusly: all of the biopsies of the areas Dr. Frenchy was able to get to while he was crawling around inside my abdomen came back negative.  That is great news, absolutely, and cannot and will not be discounted here.

The no news and insanely frustrating news and different news is that Dr. Frenchy was not able to get to some of the most highly suspicious areas, or at least cannot guarantee that he did.  So that big glowing lymph node near my liver?  Yeah, he thinks he might have gotten a hunk of it but isn’t 100% sure because it’s location made it virtually impossible to access.  And it’s not like the thing was actually glowing – that would be helpful but apparently one’s gastric system doesn’t light up like a poster of a psychedelically painted VW van.

Groovy

The only way to access that and other areas that are of concern would have been to open me up even further than he already did and that would’ve sucked on a level that I can’t even begin to contemplate.  The 28 staples I have in my abdomen right now are plenty, thank you very much.

So Dr. Wile E. Coyote Super Genius basically gave me three options:

  1. Go back in for a deeper, more invasive, more thorough exploratory surgery to access the areas of concern for biopsy
  2. Start chemotherapy and radiation in case there is something there they can’t see
  3. Wait

Another surgery is not an option as far as I’m concerned.  I have had a horrific one and now a really painful one and I can’t do it again.  People need to stop cutting into me – I don’t think that’s too much to ask, do you?

I also turned down his generous offer of chemo and radiation.  First, we don’t know that there’s really cancer there so the idea of having chemo “just in case” seems kind of ridiculous to me.  Second, even if the cancer is there we need to be realistic about things – that would be stage 3 or 4 esophageal cancer, and you don’t usually come back from that.  If there was a good shot the chemo could cure the cancer that might be lurking there I might have a different answer but in this case it would be, at best, life extending.

So we wait.  Oh goodie.  I love waiting.  I’m fucking THRILLED to wait.  I hope there’s a line somewhere I can wait in!  One that is in a place with no air conditioning.

We will wait for three months and then repeat all of the tests and procedures that don’t involve cutting me open (blood work, x-rays, PET scan, etc.) and see if the areas of concern have developed more or if they are still just sitting there, glowing.

The worrisome news is that when I pressed Dr. Wile E. Coyote Super Genius on what else could make the lymph node be all angry and glowy like that, he was at a loss.  This is why, two weeks ago, when the PET scan came back, everyone involved – the oncologist, the surgeon, my regular doctor, the nurses, the PET scan technician – EVERYONE was giving me sympathetic head tilts, hugs, and “hang in there”’s.  After all of the various test results and that scan, it was a foregone conclusion that the cancer was back and I think it took everyone by surprise that they couldn’t find anything when they cut me open.  Everything is pointing to cancer except for actual cancer.

By the way, I just saw a TV promo for “Braxton Family Value” in which several of the Braxtons are in Italy and get very upset when they are NOT the Braxton whose butt gets pinched by a hot Italian guy.  It really puts my stuff in perspective, doesn’t it?  Thank you… and stay classy, Braxtons!

So the next three months for me will be interesting.  I’ll be in a holding pattern on a lot of things – I certainly can’t make any major commitments about work, my home, or anything else big that will have implications beyond June.  I mean, I know I could but I’m just not the kind of person who commits to something without knowing I can follow through on it.  I’m not built that way.

On the other hand if there was ever a “live like you’re dying” moment, it would be this one.  I have written extensively about a “perspective” that most people, including myself, are missing.  It’s a perspective that says there are things to get upset about and things to get angry about and things to be worried about but most of the things that we get upset, angry, and worried about are not those things and so we shouldn’t let the insignificant stuff get in our way.  The problem is that the moment something annoying or angering or frustrating crosses our path, perspective goes out the window.

So that will be my challenge for the next three months: to live life with perspective.  I will wake up every morning and say something like “In June I will find out whether or not I have terminal esophageal cancer.  What are you going to do today to not waste it?”

I wrote this on my blog the night before my big surgery in August:

So if I may offer some advice, either to you or to myself if/when I live through all of this it is as follows: don’t be so fucking afraid.  Take a chance or do something new, every day, even if it’s something small.  Eat at a restaurant you’ve never visited.  Take a different way to work and pay attention to what you are driving past.  Introduce yourself to that guy at the bar or that girl on the bus or the person at the bookstore looking at the latest from your favorite author who might just wind up being your new best friend.  Get a tattoo, learn how to dance, sing karaoke, go bungee jumping… whatever that thing is that you have wanted to do but haven’t… why not?

It’s pretty good advice. I’m not saying I’m going to be able to follow it every day – I mean, all this should be life-altering but in the end I’m lazy and there is a lot of stuff to watch on TV – but I’m going to give it a shot.  In that same post I talked about the 21 words I have tattooed on my body, so I’m going to make sure that every day I live by and live up to at least one of them.

Courage.  Integrity.  Joy. Life.  Devotion.  Indulgence.  Desire.  Commitment.  Chance.  Creativity.  Family.  Passion.  Peace.  Tolerance.  Acceptance.  Beauty.  Art.  Perseverance.  Inspiration.  Aspiration. Perspective.

I think the word for today was acceptance –  acceptance of the fact that I can’t always get all of the answers I want, I can’t always control everything, and that life is messy and complicated and frustrating and incomplete.

I wonder what tomorrow’s word will be?

Home Sweet

I can’t say enough good things about the staff and facilities at Providence St. Joseph’s hospital in Burbank but I can quite honestly say I hope I never see them again. At least this particular visit is over – I’m writing this from my comfy chair in front of my big TV, so I’m automatically happier, although must say that I’m more than a little tired and in a not inconsiderable amount of pain.

Nothing terribly interesting happened at the hospital since I last wrote. I got lots of pain killers, lots of anti-nausea medication, and not enough sleep. Who decided it would be a good thing to clean the hallway floors at 2:30 in the morning is beyond me but I wasn’t really sleeping anyway.

I did manage to get a better picture of the photograph that was in my room when I was there last August. I realize I never wrote about this although I know I told a lot of people about it.

The short version is that morphine does some crazy shit to you. The photo below was hanging on the wall directly opposite my bed and it became a focal point for me reasons beyond it was the thing that I saw every time I opened my eyes. It was the source of a bunch of my more innocuous hallucinations. At various times there were people standing on the balcony, the lights were on in the house, one time there was a dog and a guy with a mask, another time there was a couple climbing up the vines. It was always a photograph – it was animated or moving – but almost every time I looked at it there was something different about it. I should’ve been more freaked out by it but some of my other hallucinations were seriously disturbing so I this seemed like a party trick by comparison.

Anyway, so now I’m home and will be staying here for the next week or so – thank goodness for a flexible work environment that allows me to work from here. My follow ups with Dr. Frenchy and Dr. Wile E Coyote Super Genius are being moved because of my extended hospital stay so I probably won’t get the final results of all the biopsies until next week. That’ll be fun to wait for.

I’m basically okay – it hurts a lot and I’m not looking forward to getting the 20-some-odd staples removed – but this recovery is like a walk in the park compared to the last one. I get to shower, I get to eat, I get to take painkillers, I get to watch “The Walking Dead” on my big TV while sitting in my comfy chair. Things could be worse.

Frequent Hospital Flyer Miles

Do they have something like that?  Because I think I would probably qualify at this point.  One more visit and my next colonoscopy is free.

I posted a couple of minor updates on Facebook because all I had was my phone until the lovely and talented Mark R. brought me my computer.  I know he doesn’t like being unemployed but it certainly comes in handy for me.

So here’s the fuller story, which has good news and indeterminate news and nausea.

After a fitful few hours of something like sleep but not actually sleep, I hauled my formerly fat ass out of bed at insane o’clock (4am) and had a moment of fondly remembering the things I used to do at 4am back in my much younger and more interesting days.  Oh, I have stories, y’all, but you’ll have to wait for the memoirs for that.

As usual, I called cab to take me to hospital, partly because it’s my little tradition and partly because I wasn’t going to make anyone else get up at insane o’clock to take me.  For the record, the cab drivers you get at that time of the morning are not, shall we say, the crème de la crème of society.  I’m pretty sure this one was drunk.  He not only didn’t know where St. Joseph’s Hospital in Burbank was, he didn’t know where Burbank was.  Seriously, he started driving the completely opposite direction.  After I got him back on track it was a terrifying 85 mile per hour drive on the rain-slickened freeway in a cab that looked as though it was held together with duct tape and bailing wire.  But I made it to the hospital and therein lays the reason behind the tradition – if I can survive a ride in an LA taxi I can survive anything.

As I sat in the waiting room, I turned on some tunes and powered up one of my favorite distractions, a little time-waster called Jumbline.  It’s a silly word game that is a rip off of Text Twist, wherein you are given 6 letters and have to spell as many different 3-, 4-, 5-, and 6-letter words from them as possible.  The first combo I had was LIDDED for the 6-letter score but as I went through the 3- and 4-letter words I of course got to DIE and DIED.  I shrugged that off and went to the next word – ADDLED – which of course includes DEAD.  The third word – and I swear that I am not making this up – was DOOMED.

I decided to stop playing the game at that point.

Everything else was pretty uneventful until the actual surgery part.  I was supposed to have a laparoscopy, a minimally invasive procedure where Dr. French cuts a few small holes in my abdomen and then goes in with scopes and lights and cameras and a sound guy (he’s very small, but still union).  The point was to look around to see if there were any other signs of obvious cancer than the one that was showing up on the PET scan.

As it was explained to me later, Dr. Frenchy couldn’t see anything and didn’t even think that the lymph node in question looked like anything other than vaguely pissed off.  So he called Dr. Wile E Coyote Super Genius and the two of them agreed that a more in-depth look was probably in order.  Several tests led up to this and many of them indicated that something was wrong so they decided to do a laparotomy, which involves a full 4-inch incision up my abdomen.  I, of course, didn’t have any say in the matter being under anesthesia and tied to a table.

This concerns me on many levels, not the least of which is the other little disturbing bit of news that I found out in my PET scan report.  Apparently during my surgery last August, they took out a rib and never told me.  I had suspected something was different over there by the big incision on my side where they did the thoracotomy but figured it was just the scar and weirdness, but no… they took out a fucking rib.  What am I, Cher?

Anyway, so the laparotomy happens and Dr. Frenchy goes for a deeper stroll through my guts and couldn’t find anything obviously wrong.  He took the one offending lymph node and then biopsies of a bunch more where I have been having pain and then closed me up.

The initial biopsy report of the suspect lymph node came back negative – as in no cancer.  It’s angry about something but it isn’t cancerously angry, so to speak.  Why it is angry is unknown but in the end it turns out that the thing I said about the result of this surgery coming back with either bad news or really, really bad news had a third option: good news.

Now, we are not out of the woods yet.  Both Dr. Frenchy and Dr. Wile E Coyote Super Genius and everyone else involved in this little spectacle believes that there is something going on in there and unfortunately PET scans and biopsies and even a Frenchman and his sound guy poking around in ones belly are no guarantee.  There are areas that the PET scans cannot see effectively and there are places the tiny union sound guy can’t access so there could be something lurking in there causing the pain and the weight loss and the weird test results.

The next step is to wait for the other biopsies to come back and then we’ll see what happens.  Obviously if there is something hinky there then its big trouble in big intestine but if no hinky is showing up, what happens next is up in the air.  Preventative chemotherapy is a possibility but not a favored one by Dr. Wile E. Coyote Super Genius (or me for that matter).  I’ll most like go under a significantly enhanced version of “watchful waiting,” which will involve very frequent blood tests, scans, and procedures designed to try to catch whatever is going on before it gets completely out of hand.  I should know more about all of that next week.

In the meantime I am still in the hospital and will be so for the next several days.  With the laparoscopy I would’ve been home propped upon the couch by yesterday afternoon.  With the laparotomy I am here through Monday most likely, but there are heavy duty painkillers and anti-nausea medications involved so it’s not as terrible as it could be and absolutely a walk in the park compared to the last time I was in here.

So that’s the story for now.  I need to sign off before the little union sound guy goes on strike.  But thank you for all the well-wishes, happy thoughts, prayers to God, good vibrations, good juju, and mystical energy from the alien overlord Xyrglyph.  It may have actually worked.

Once More With Feeling

I’m heading to the hospital tomorrow for another surgery, although compared to the last one this is like a particularly aggressive, deep tissue massage.  Too bad Dr. Frenchy doesn’t offer happy endings.

Of course the comparative differential between the esophagectomy (which one of my doctors called “medieval”) and this exploratory laparoscopy are cold comfort when the stakes are considered.  To be clear there will be no “good” news coming out of the findings – it will either be bad or really, really bad.  Bad is that there is no other obvious cancer than what is in the one lymph node that showed up on the PET scan and I have to go have months of chemotherapy and radiation.  Really, really bad is there are more obvious cancer spots and then that’s the ball game.

I keep using sports metaphors.  Cancer has made me butch.

It’s all still very abstract at this point.  While I don’t necessarily feel good I certainly don’t feel as though I could be dead in 3-6 months as Dr. Wile E. Coyote Super Genius has indicated.  I remember what Mary was like for the last 6-9 months of her life and I’m not even in the same ballpark as that.

Again with the sports metaphor.  What the hell?  Okay, let me rewrite that…. I remember what Mary was like for the last 6-9 months of her life and I’m not even in the same charmingly gentrified neighborhood full of restored Craftsman houses occupied by upwardly mobile gay couples and their yorkies.  Doesn’t have the same ring to it, I guess.

Now to be fair, a lot of what Mary was experiencing was a result of years of nearly constant treatment and she was able to live with a much more advanced stage of her cancer than I have so the comparison is not really an apt one, but the bottom line is I don’t feel like one would expect one to feel when one has terminal esophageal cancer.  Whether or not that means I don’t really have terminal esophageal cancer but potentially treatable esophageal cancer is why I’m going in for that “massage” tomorrow.

As abstract and undetermined as it all is, it hasn’t stopped me from “going there.”  It’s impossible not to, really, so I’m not beating myself up about it too much.  I haven’t made any hard and fast decisions about anything, though.  How long will I keep working?  Will I travel or go skydiving or do other bucket list type things?  What’s on my bucket list in the first place?  It certainly doesn’t include skydiving, I can tell you that.

I could be wrong but I don’t think the really, really bad news will change things all that much for me right away, and perhaps not at all.  Well, except for the whole dying part – that’ll be different.  But as I said in a previous post, I don’t think stuff like this changes a person, it amplifies them.  I anticipate that instead of turning into some sort of hysterical drama queen, a Zen “nothing can bother me now” type, or a raging “why me?” asshole, I will become more matter-of-fact and control freak-y than I already am.

Why do I think that?  I’ve already pulled out the Cancer Binder and am in the process of updating it.  Cancer is abstract and makes no sense.  Cancer Binder is concrete, tangible, and makes sense.  I will take my comfort in any way I can.

So I’ll post an update when I am able to string a coherent thought together post-surgery.  I’ll see you downfield.

I mean, I’ll see you at the bar for cocktails!

I’ll Drink To That

The Last Place I’ll Ever Live

This month marks the 18th year that I have lived in the same apartment building. I moved in on March 15, 1995 and just never left. I thought about it many times; even looked for new apartments closer to whatever job it was that I happened to have at that time (there have been roughly a dozen of those in the last 18 years) but cost and/or inconvenience kept me stationary. I’m sure there’s a metaphor in there somewhere but I’m going to choose not to examine it too closely right now if that’s okay with you.

The furthest I ever made it was next door. In 2010 I moved from one apartment in the building to a different one. Yes, I hired movers but in my defense, despite the fact that the two apartments literally share a wall, moving from on to the other meant carrying things down one or two flights of stairs, down a hallway, and back up one or two flights of stairs (both apartments have lofts). If you could’ve done that by yourself, then you’re a better person than I am.

Anyway, my old apartment had become quite worn. The carpeting was threadbare and stained, the curtains were torn and hanging loosely on their rods, and I didn’t do the best job in the world of keeping the place clean. More often than not it looked like a place that the survivors on “The Walking Dead” would hole up in, but only for a few days until they couldn’t stand it anymore and then decide to take their chances with the zombies.

When I moved into the new apartment it was just that: new. New carpeting, new paint, new blinds, new everything. I like new stuff. It’s so shiny. So for the first several months of living here I kept the place spotless. I put stuff away as opposed to dumping it on the dining room table, I dusted and vacuumed regularly, hell, I even made my bed every day.

It was in that bed that I had the thought. I was lying there one lazy Saturday morning, only about a quarter awake, resisting the idea of becoming any more fully awake and I was thinking about the apartment and how clean and sparkly it was and how I needed to vacuum or clean the bathroom or do something that day to keep it that way. I sort of asked myself in my mostly asleep state, “why are you going to so much effort to try to keep this place so nice?” And my mostly asleep self answered thusly: “Because it’s the last place I’m ever going to live.”

My eyes snapped open and I thought, “Well, that’s a pretty fucked up thing to think.”

To this day I don’t know where it came from. I was unemployed at the time and things were kind of bleak so I chalked it up to a bad attitude and left it there, unconsidered. But it has lingered with me ever since and now… well, now I wonder if I didn’t maybe know something had started.

In 2010 I had one of my regular endoscopies to monitor the progress of the Barrett’s Esophagus condition I had. Everything was fine. In 2011 I didn’t get the endoscopy because I was unemployed and I couldn’t afford the out-of-pocket costs that came along with COBRA based insurance. It would’ve been sometime right around there that those cells in my esophagus started their little mutation dance.

You probably can’t tell it by looking at me, but I’ve always been fairly in tune with my body. I have always known when something was wrong, even if I didn’t know specifically what it was. Over the last few months as I tried to recover from the surgery and the doctors kept telling me that the weight loss and the pain and the discomfort was just part of the process and it would get better eventually, I knew something was wrong.

I honestly didn’t think it was cancer again/still. That one took me by surprise.

In the years since I had that random thought while mostly asleep, my housekeeping skills have waned considerably. I don’t make the bed every day (or almost any day), my dining room table and kitchen counters are usually dumping grounds for whatever happens to be in my hand that I don’t want in my hand anymore, and there have been times when the layer of dust on the furnishings makes them visibly bigger than they actually are.

A few weeks ago, right around the time that I got the first blood test that showed some anomalies, I started cleaning again. Like crazy cleaning –moving furniture to vacuum and scrubbing the tile floors. The living room, the dining room, and the kitchen all look great. The bathroom and bedroom are next.

Now, I want to be clear about something…. I’m not ready to accept the concept that this really will be the last place I’ll ever live.  The upcoming surgery will provide a lot more insight and things, while decidedly bleak, are not completely without hope.

But.  However.  Although.

Just in case… It really should look nice again.