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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.


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.

Random Thoughts

I’ve been all over the place today, unable to hold on to any kind of thought for longer than a few moments.  Short little bursts of random ideas, concepts, jokes, and thoughts pop into my brain and then pass on by, unimportant and mostly forgotten moments later.  Oh God.  I’m Twitter.

Here are some highlights:

I feel as though I should be more upset about this.  I mean, I’m not happy, but after taking the day off work and mostly puttering around my house, what I am, mostly, is bored.

There is no good cancer humor on the Internet.  I have checked.  Is it because it’s really not funny?  I am choosing not to believe that.

Xanax: color me intrigued.

Since I’m already bald, will the chemo make the hair in my ears fall out?  Because I seriously can’t keep up.

Sally Field would be more upset about this.  She’d know how to do a cancer diagnosis.


What will my legacy be?  Does everyone get a legacy or is that just for presidents and serial killers?

What the hell is “Red Widow” about?  I know I could just go look it up, but shouldn’t the commercials tell me?

If I went through that fucking surgery and gave up my ability to process a greasy cheeseburger and a piece of pizza for nothing, I’m going to be pissed!

I tried to buy strangers ice cream cones yesterday to make myself feel better – random act of kindness type of stuff.  No one took me up on it.  This is why I, generally speaking, don’t like people.

Zoanette.  If you don’t know what that means, just go YouTube her.

Hold music.  Waiting rooms.  Paperwork.  Needles.  Machines.  Can’t say as I have missed all of this.

Wasn’t 2013 supposed to be a better year?

Cornering Ability

Yes, it has been awhile since I have posted on here.  I apologize if that caused consternation or concern anywhere but the long and the short of it is that I just didn’t feel like it.

The good news is, today I do and it’s because there may be something like actual improvement to discuss.  I’m trying not to get too cocky about things but I am cautiously optimistic, which is about a billion times more positive than I have been in the last couple of weeks.

A big chunk of my improved outlook is because the fucking tube is gone!  Yes, the blasted feeding tube that nearly got me killed in the hospital (ripped my bowel, emergency surgery, etc.) and has been the bane of my existence since with leaking and pain and just a general sense of “wrong” was removed yesterday by Dr. Frenchy.

Now, before I get to the positive part, I want to discuss the removal of tubes and the lies that health care professionals seem to be required to tell about same.  When I was in the hospital I had two drain pouches that were collecting excess fluids from my abdomen.  Those pouches were connected to tubes that went into my body on the right side, a few centimeters below the rib cage.  The day before I got out of the hospital it was time, finally, to remove the pouches and the tubes, for which I was extremely grateful.

The nurse told me that I would feel a pinching and pulling sensation but that it shouldn’t actually hurt.

Whether or not she was lying intentionally is unknown but she was lying.  It hurt.  A lot.  Like to the level where I screamed and told her to stop.  An injection of dilaudid (40 times more powerful than morphine!) later I didn’t give a rat’s ass and she pulled the tubes out.

So when I got to Dr. Frenchy’s office and he told me it was finally time to remove the feeding tube and then said, “You’re going to feel some pulling” I was suspicious but willing to give him the benefit of the doubt.  After all, he was removing the fucking tube – I was the lion having a thorn removed from my paw by the helpful mouse and that was good enough.

Now that I have had this done twice, I want to state for the record… if you are told by a health care professional that a tube removal is not painful, they are lying to you.  A lot.

Liar! LIAR!!!

As he pulled on the tube, the pain was stunning – consciousness threatening.  I actually said, “I think I’m passing out” because the walls of the examining room seemed to fold in on themselves like origami.  However, I managed to hold on and then restrained myself from punching Dr. Frenchy, but the latter was mainly because of the amount of blood and other stuff that was coming out of the wound.

Then came the kicker… Dr. Frenchy told me that the oozing and draining could go on for weeks.  WEEKS!  And that if it didn’t stop, it probably meant that there was a small leak somewhere inside and that he’d have to go back in surgically to fix it.  The thought of having to deal with the bandages and the pain and the discomfort for weeks only to have to have another surgery to correct it nearly crushed whatever little bit of my spirit was left.

I got home and pretty much went to bed – it was that exhausting (both physically and mentally).  When I got up later in the day the bandages were soaked and I had to change them several times.  Although I was thrilled that the fucking tube was gone, I was practically inconsolable over the idea that this is what I was going to have to face constantly for the foreseeable future.

But then a strange thing happened… I got up this morning and the bandage wasn’t soaked through.  In fact, it was the least amount of “stuff” that had been coming out of me in weeks.  Beyond that, the odd hard spots that had formed around the leaking incisions – hard spots that when pushed on would cause more drainage – were smaller and less painful.

And most importantly, I felt better.  I don’t know if it was strictly a mental thing or if there was some overall physical impact, but I got up this morning and didn’t feel like shit.  Let me be clear – I’m not ready to go run a marathon, but there was a difference.

That’s really all I’ve been looking for: some sort of evidence that things are getting better.  The last couple of weeks have been very status quo in terms of my recovery and that has frustrated me to no end.  Seeing an improvement, no matter how small, is encouraging.

I went to see another of my doctor’s today and she was very pleased.  Her theory – and I think it’s a good one – is that there was a leak around where the tube went into my bowel.  But when the tube was removed, it not only is healing the hole where the tube was but the leaking area as well.

I am cautiously optimistic that this is going to be the thing that allows me to turn the corner.  I haven’t turned the corner yet but I can see the corner now and it appears to be clear of hookers and junkies so when I get to it, I should be able to turn it without too many problems.

Now, I just need to find the corners for the eating issues (still having food drama), the breathing issues (one of my lungs feels constricted), and sleeping issues (severe dry mouth wakes me up about every 45 minutes all night long) then I’ll be in good shape.

What I Want Vs. What I Get

The surgery was three weeks ago today and the question that keeps running through my mind is this: why aren’t I all better yet?  I mean, I understand that it was a huge surgery with complications that could’ve killed me and that I spent 6 days in the Intensive Care Unit and a total of 13 days in the hospital and that I’ve only been out of the hospital for a week, but really, shouldn’t all of this be done with by now?

Recovery takes time, everyone keeps saying.  Be patient; it will get better.  Bite me.  This has been the hardest thing I’ve ever had to deal with (at least on a physical level and pretty darned close on an emotional one) and after three weeks I’m ready to feel better, move on, and be shed of the pain, discomfort, exhaustion, and everything else that is keeping me from returning to whatever I called a normal life.

But it is not working out that way, my will and desire be damned.

The biggest problem I am having is with the fucking feeding tube – you know, the one that I partially ripped out while struggling against the ventilator that they had to go in for an emergency surgery to repair?  It’s still there, hanging out of my abdomen like a pus and blood filled USB cable (how’s that for imagery?).  Dr. Frenchy, who I saw on Wednesday, says that it needs to stay in place until it scars over and then they can remove it.  Do it too early and place where it goes into my intestine can crater, collapse, and kill me.  This means that I will have the gory USB cable in my side until at least the 17th of September, which is when my next appointment with Dr. Frenchy is.  To say that I’m unhappy about this is the understatement of the new millennium.

Oh, and the way in which they remove it?  They just pull it out.  Seriously – grab it, yank it, done.  This is, of course, if it doesn’t just fall out by itself, which apparently is a distinct possibility.

In the meantime the place where the tube goes in and the small incision next to it continue to leak and ooze unpleasantness and, now that they have removed the stitches around the tube, there is a decent amount of pain added into the mix.  I have to change the dressing on the two wounds three times a day and each time is a challenge to move the tube as little as possible because any little variation in position causes a stab of major ouch.

(tubes – get it?)

Food continues to be a challenge.  I have found some things that I can eat and digest without too much drama – applesauce and peaches are at the top of the list – but everything else is a crapshoot.  This is why I have lost close to 40 pounds in three weeks.  Last night I managed to have some turkey meatloaf and some instant mashed potatoes and that went pretty well.  Today for lunch I had a little bit of oven-roasted turkey on a piece of bread and some leftover noodles and it sent me to bed with lower-intestinal pain for almost an hour.  It’s impossible to know what’s going to work and what isn’t, but the doctors swear this is going to get better, it’s just going to take time.

There’s that time thing, again.  Annoying, isn’t it?

The good news is that I was cleared to do the basics like driving, showering, light lifting, and otherwise tending to myself.  I’ve done a little of each and although it ends in me being exhausted, it’s nice to be kind of self-sufficient.  I sent my parents home day before yesterday and they are relieved to be back in their own place and I am relieved to have mine back under my control.  I deeply, endlessly appreciate them giving up three weeks of their lives to basically sit around and worry about me but I think all of us agreed that it was high-time to return to our regularly scheduled programming.

I have also returned to work in a fashion.  I’m certainly not fully back up to speed and certainly not going into the office, but working remotely for bigger and bigger chunks of each day is helping my brain from turning completely to mush.

So yes, I guess there is progress, but I’m just having a very hard time recognizing it and embracing it.  It’s much easier to focus on the pain/exhaustion/digestion issues because those are so much more obvious than the little victories like being able to lather areas of my body in the shower that have been in need of a good lather for several weeks.  The latter feels good but it only lasts for a few minutes while the pain from eating a piece of bread lasts for hours.

It bums me out but I’m trying not to let it weight me down to the point that the recovery will take even more time than it would’ve otherwise.  I understand that three weeks is not enough time to heal from something like this.  But if we make it to four weeks and things are not substantially improved, the whining level is going to go up a lot. You have been warned.

I want one of these. Being in the same room as one would make me sick, but I really, really, really want one.

Hey, Where Did That Giant Cheeseburger Come From?

Except for some flashes here and there, pretty much everything during my six day stay in the ICU is lost to the haze of pain and self-administered morphine in which I was enveloped.  Apparently people came to visit me and brought me presents but I remember mostly nothing about it.

Case in point: my friend Steve stopped by on Sunday, two days after the surgery, before the second surgery.  He brought me a CD case shaped like a giant cheeseburger and some Mardi Gras beads, all of which were tied in some meaningful way to his late wife and my late best friend Mary.  Apparently we had a full conversation (well, as full as I could manage), I was relatively lucid, and a good time was had by all.

I remember none of this.

What’s even weirder is that I didn’t question where the giant cheeseburger came from.  It was just there – a part of my recovery just like the self-administered morphine.

A gift from the Hamburg, PA Hamburg-er Festival

So therein lays your opportunity.  If you feel the need to claim some sort of sick friend credit you don’t deserve, just tell me you came to visit while I was in the ICU.  I’ll have very little choice other than to just believe you.

In other news, today is my birthday.  46 to be exact.  Not exactly the way I would’ve liked to be spending it but I suppose the alternative is not much better.

Things are kind of in the blah zone right now in terms of the recovery.

Friday and Saturday there was a fear that both the tube site and an incision next to it were infected.  The home care nurse came in on Saturday to look and change dressings and decided to call the doctor.  His determination was to have the nurse go ahead and remove nearly all of my surgical staples.  That would 16 in all, minus those holding the thoracotomy scar together and the 4 that were missed because they were under a bandage.

To say that this hurt is an understatement of epic proportions but it was more of the dying of a million little cuts type of pain than the type of pain I’ve been in previously during all of this.  I made noise, cursed a bit, and said “ow” a lot but it got done.

There was a lot of… well, let’s just say “stuff”… that came out of the wound near the tube and from around the tube itself and that continues to today.  Less, but still there.  Happy birthday!

I’m also having some weird numbness and aching type pain in my chest near the breastbone.  This seems to be mostly related to where they had some drainage tubes and as long as I keep in a relatively stretched out position and keep breathing fairly deeply (still a bit of challenge) it’s not debilitating.

What is more than a bit of a bummer, as it has been from the very beginning, is my new relationship (so far) with food.  I’m still on a soft diet, which basically means I eat normal-ish food but the soft varieties of it.  Yogurt for breakfast; apple sauce for a mid-morning snack; some oven roasted deli style turkey (maybe in half-a-sandwich fashion) and some soup for lunch; an Ensure like shake in the afternoon; and something like a light pasta or some ground turkey and mashed potatoes for dinner.  The problem is that my body does not like food – at all.  I eat and within a few minutes I start to feel bloated and distended.  Everything bypasses my stomach and my upper intestine and just sits down in my lower where it tries to get processed.

Basically I eat and then I feel like shit for the next 30-45 minutes and then it’s okay-ish again.  This will hopefully get less severe as my innards heal but it is probably going to be a factor moving forward to some degree or another.  Again, I say, Happy Birthday!

The outward result of the surgery and food issues is a pretty radical change in my appearance.  I have lost more than 30 pounds in just over 2 weeks and, at least in my eyes, appear downright gaunt especially in the face.  I don’t recommend this is a weight-loss strategy but it is a very effective one.

Other than that, I just continue to be very, very tired all the time.  Yesterday I managed to take a walk down the block and back and then went with my Dad to the grocery store.  Afterward I needed a nap.  Unfortunately sleep is not coming easy or lasting long so there is an exhaustion factor that I just can’t shake.

But I think that every day is at least microscopically better in some way or another so hopefully this will continue.  Those who know me well know that patience is not a strong suit so I am having a hard time accepting that everything is not back to “normal” after a little more than 2 weeks post major surgery.  I’m not saying I was thinking I’d be ready to go out drinking and carousing on my 46th birthday but I did, at least, hope that I’d be able to digest apple sauce.  Oh well… maybe next year.