A Year ago…

Today is a year since I had my esophagus (and my stomach) removed due to cancer… Although I had been through many surgeries before this one… this was the most difficult surgery I’d ever had… and even though I did have my fears and a few “mental moments” both before and while in hospital after the surgery… I got through it…

That surgery is considered to be one of the most difficult surgeries a person can go through…. There is a high risk of all sorts of complications and the recovery is both long and painful… A year later I am still recovering from it… I have had physical therapy and will probably be having more in the future… I have had pain from damaged nerves and my intestine are still (hopefully) learning or adapting to their new role as an esophagus and a stomach… along with doing their old job…

Yes… I got through that one… and fortunately… with a lot less complications than so many others… for that I am thankful…

Now as I’m waiting for another surgery to remove cancer from my body… I find myself struggling mentally with the whole thing… more than I have before… Yes, I know I won’t be around forever… no one will be… that’s just how it is…

I know I don’t need to explain myself… though at times I find myself doing that over and over again in all kind of situations…

But… for those who know me well enough… know that I go through these downhill moments only to pull myself back up from that hole… That’s just how I am… sometimes it takes a while… and sometimes it’s done overnight… That’s what I’ve always managed to do in the past… and probably will for the rest of my life…

My thoughts have been going downhill lately … negativity and fear… fear for my future sprung from experiences from my past…. but I know from what I’ve learned in the past that kind of thinking will only make me even more vulnerable… I am doing what I can to keep all of that from getting in my way… and with it hiding away in my music…

Just one of those days….

Today is just one of those days where I have a lot to say… but can’t say anything at all… tomorrow may be different… but no guarantee… this time of the year is always difficult… not just for me… but for my wife too…

My mind is being out of control and all over the place…. Has been for a few days now…. In a way it’s not unusual especially around the time of my shot… and also with all of what’s going on around here…. Like I said…. Just “one of those days”…. However I know it doesn’t give me the right to be a crazy ass hole ….which is kind of how I feel I’ve been lately… if I’m not grumpy… I’m overly emotional…. And probably way too self centered and or feeling sorry for myself…

I had a doc appt this morning… not really news as there’s always something…. Some may know that I have a surgery planned in the beginning of October as I may have mentioned it on my page…. This surgery was originally planned last year but getting a cancer diagnosis kind of put that plan on hold for a while….

Because of an “event” in 2006 I have had multiple problems with my mouth and throat…. especially with eating and swallowing and food going down the wrong pipe…. My esophagus and stomach were also affected but as you might know they are out of the picture since my esophagectomy….

Now with this upcoming surgery they are mostly going to be cutting away lots of scar tissue and/or doing reconstructional work… I can’t really explain how or what but it involves my epiglottis, my vocal cords among other things… as well as possibly using tissue from my left leg/thigh to build up where needed… Sounds all good and dandy… maybe…. but the surgeon says they cannot “promise anything” until they do this… and that to me is sort of what makes me want to skip the whole thing…. Not to mention having to go through a recovery… possible complications….

Not sure where I’m going with this though…. In a way I need some reassurance or mental support… and maybe… although It’s probably different when cancer is involved… which it isn’t really in my case…. to know if there is anyone out there who has gone through something like this… the surgery… the recovery ugh anything ….

For now I’ll just send good vibes out there to anyone that may need it…

I keep repeating to myself…. This is going to be OK…. This is just one of those days…. But I know I need to be there for my wife as well… August is a month where both of us struggle with… We could use some too but I ask since my mind is not in a good place… please leave religion out of it for now….

Day 45 (Week 8) EC Surgery

I know not everyone who reads this have a Facebook account and/or have me as their Facebook friend… and since I’m getting messages/emails from people asking me how I’m doing I feel I should put an update on here… but I’m sorry for the lack of posting on here…

I will be going back to the center next Monday…. and Sunna will get back to work as well… This is where I get my therapy… speech therapy…. chance to socialize with other people and various activities… They have arranged for me to be able to have my naps and meals as well…. so that’s all good…

Each day comes and goes… Some days are bad …either physically or mentally… or both… and days some good. My energy level is still very low… and I fear my depression is kicking in because of it… and maybe because of me just staying home… even though I try to go outside for a walk everyday… sometimes more… but I spend a lot of time either in my bed resting… or sleeping…. or playing my piano…. but that one is somewhat a struggle however as I’ve been having some pain issues in my right side from the surgery… As long as I don’t do anything that requires much movement I’m OK(-ish)….

Eating is also still a struggle for me…. both mentally and physically… I’ve already talked about that in a previous post… I still have my j-tube and not getting rid of it anytime soon… but I feel I need to do this… this eating part… in the hopes it will become easier someday….

As it is now my mealtimes are six… sometimes seven… throughout the day… Each meal consists of very small amount each time and everything I eat is run through a mixer…. I’m still working on bigger chunks though… even though bigger chunks for me… means very small pieces…

I’m not drinking thin liquids… like water…. for now… as it normally wants to go the wrong way down… I don’t know if anyone remembers… but before my very recent esophageal problems and then cancer diagnosis I was supposed to have a surgery that would help me with food/liquids going down the wrong pipe…. Originally that was the plan for this month…. but things turned out differently so I’m still waiting for that one…

In spite of all these meals…and eating… which again… isn’t very much each time… I have no appetite at all…. I haven’t felt hungry for years and in fact I’m not sure if I can remember how it really feels like… but this is why eating by the clock is important for me…

One of the things that have bothered me the most is the fact that I don’t have much sense of taste at all now… and if I do sense taste… it’s not pleasant at all…. I don’t know if this is permanent or temporary though… I can’t say my sense of taste was good while I was still eating before the surgery… but this is frustrating… to say the least….

…but I am still standing…. still fighting myself or the universe…. and I will as long as I have to…

A Shadow From the Past

This is somewhat difficult for me to talk about… normally when I try to talk about it I end up writing a book… as in using too many words… and usually end up deleting and not posting at all…. Not only that… but in case you haven’t noticed already I ramble a lot (not just about this) and usually end up going in many different directions at the same time… even repeating myself…. so if something is unclear…. feel free to ask questions if you have any….

I was diagnosed with PTSD in 1998… In my life I’ve had more negative experience with food and eating than positive… starting when I was a child… long term abuse or torture by a mentally ill mother… her favorite method of torturing me was using food…. and/or something… anything she could make me swallow… Not always food or something meant to be eaten…

Even long after her death I had problems with food and eating…. I was starving myself for quite a while and became dangerously underweight…. and at one point I was diagnosed with an eating disorder… though a little later I was also diagnosed with Gastroparesis, severe ulceration of the stomach and later ….or after my entire colon was removed in an emergency operation… Ulcerative Colitis….

I also have another mental illness… schizophrenia… that makes me lose touch with reality unless I’m on medication… because of my problems swallowing I get a shot every 28 days and that helps me staying in reality most of the time…. I do have an occasional bad day though every now and then but nothing close to what it’s like without the meds….

I have talked about this here a little before…I think… but 9 years ago I was very ill… I was very depressed, self-harming and having symptoms of psychosis… I guess you can say I really had hit my bottom with my mental health…. I was an expert on hiding this sort of things…. ever since my childhood I had hidden what was going on inside of me…. but…. I was troubled… everyone around me knew that… but I hid a lot of what was going on inside of me and made them believe I was doing the best I could… in a way I was… but after all I was eating (which was a big problem before this) and I was not harming myself (or at least not in the way I was before) but at that point I had already decided to take my own life… I’ve posted about this on my blog before… and on Sept 10th which was World Suicide Prevention Day I posted about it on my Facebook page but for those who want to read it that post can be found on my Facebook page (For now it’s open to the public)

The attempt was colored by the abuse I went through as a child…. I don’t want to go into all of that in detail though but this left me a lot of damage…. Among the effects this had on my body is tissue damage and scaring on the inside of my mouth and throat… Caustic ingestion… I swallowed poison/chemicals that burned the inside of my body…. and kept burning me on the inside long after the actual ingestion…. Although there are other factors from my past as well…. it’s possibly…and most likely…. what caused the cancer in my esophagus… For now… I seem to be cancer free…. but cancer may very well show up elsewhere in my body in the future…. mouth, throat…. even my liver or my kidneys…. but this is something that I try not to think about too much and will just tackle if it comes up…. but I have had…and will continue to have regular scans because of it…

Another thing I did that night… was something that I had fantasized about for a long time…. This is somewhat difficult for me to talk about… and I hope I won’t be judged for posting about this…. Some of you may know about it already (if you’ve read my blog or somewhere else) but I have a large part of my visible tongue missing… In my deranged and delusional mind I cut it out… just because I wanted to know if I could do it… after all I was going to kill myself anyway (or so I thought)…. Doctors tried to save my tongue… by attaching the “missing” part back in… but there was too much damage done on the inside of my mouth so it wasn’t successful so they had to remove it again….

OK…

I know there are people on here that can’t eat and get all their nutrition through a feeding tube…. I know there are people on here that have had tongue cancer… and/or people who struggle with swallowing… or speaking out loud…. But in the past I have wished I was physically unable to eat and speak…

Ever since I was a kid I’ve had a severe stutter…. My mother told me she was ashamed of me and told me not to speak to anyone who spoke to me… If I did it had consequences… Even at 13 I stopped speaking…. didn’t speak a word for almost 3 years….

Waking up alive after the suicide attempt changed me…. I don’t want to live in the past anymore… I want to live…. and enjoy life… I want to be able to speak better…. and I want to be able to swallow…. and eat…..

Sometimes I have “bad days” I wish I didn’t have to speak and/or like recently when I’m working on eating again after my surgery …but I also know that my ‘bad days’ are when my mental illness is shaking it’s ugly head…. and messing with my mind…. and lately it has been a struggle….

Since the suicide attempt I have been working very hard with a speech therapist that has helped me a lot… My stutter is nowhere close to where it used to be… I speak very very slowly though…. (I type a lot faster than I speak btw) and I *can* speak in spite of my tongue being a little too short… or clearly enough for most people to understand what I say….. I admit though…. I’m not the most talkative person at the party and mostly just speak to my family…. trust and self-esteem issues probably…

I was diagnosed with cancer of the esophagus in August…. and had an esophagectomy on Sept 16th…. not only did they remove my esophagus but I have no stomach left at all now…. and from previous surgeries… I have no colon and only 3 – 3,5 meters of small intestine…

Long before E-cancer diagnosis last August…. or since May last year I got a feeding tube because my inability to eat enough orally …problems with my mouth, tongue, throat, esophagus and stomach problems… but even though I couldn’t eat enough… I was eating a little bit every now and then or when I could for a year along with the tube… or until last spring (sometimes in April/May I think)…. I haven’t been eating anything through mouth since then (until recently…) but I kept getting food down my windpipe or chocking on it… and/or it getting stuck in my esophagus…

I’m slowly starting to eat again after surgery although no one is really pushing me except me maybe…. I still pretty much rely on the tube…. but my ‘eating’ consists of only a teaspoon (maybe) or so of something soft throughout the day…. It’s been quite a struggle…. both physically and mentally…. especially mentally…. but just having food inside my mouth (without really swallowing it) is a mental struggle for me and causes anxiety and unwanted and most of the time uncontrollable responses and reflexes on my part… My tongue… or lack thereof… is another problem… lack of properly working saliva glands and not to mention lack of feeling in large part of my mouth and impaired sense of taste…. excuse my language… but fuck that!

I am going to work through all that! I realize I may need the tube for the rest of my life…. and I may never be able to eat a large “all-you-can-eat” buffet meal… (not in one sitting anyway) but I want to be able to eat without having a negative mental reactions or memories…. without a panic attack… and without the ‘shadows’ from my past interfering… Damn it! I want to be able to enjoy a meal for once in my life!

Swallow

For most people swallowing food is probably one of those things you don’t think about doing… you just put something in your mouth and chew for a while depending on what it is…. For some this isn’t as easy….
About 8-9 years ago I had to relearn how to chew and swallow food… with a lot of practice, determination and help from a speech therapist …who also BTW taught me to speak though it’s still an ongoing process… and my psychotherapist I did make some progress… small victories here and there…

Since then I have also had a few setbacks… some due to my physical health …The last one being my esophagus being an ass and preventing food from going down…. and some due to my mental health… most if not all PTSD related… anxiety, panic attacks and for the last week or two flashbacks of events from my past…
I have been on tube feedings only since March this year…. no real swallowing food since then…. until today…. smile emoticon …so yay me!

A Brain Working Overtime

He sits down… opens up a blank document and starts to form the first sentence in his head… He starts writing… he writes… and he writes… It goes on for about an hour… maybe more…
but writing about it won’t make it go away… Sheer determination won’t make it go away either…. any more than ignoring it will… or trying to hide from it…

…so he deletes it… and starts again…

…a few times….

The Super Hero is feeling lost…

It’s day 16 from the surgery… and he’s not eating yet… Tube… not up to the same rate as before… weight is dropping accordingly… (not of any concern yet though)

He tries to put it into some kind of realistic perspective… This is what you want, right? … Yes I think so… You “think so”? No… I know so…. Are you sure? – Uhm…. no…

That’s why…. right? You’re still not sure….

Of course he’s not sure… this is ‘normal’ to him now… and his ‘normal’ is safe… He’s used to it now… well most of the time he is…

Again… like so many times before… she has a hold of him again… or is it the other way around? Was that guy at the hospital right maybe?

He know he has done some pretty messed up things in the past…. He doesn’t need anyone to remind him…. or to tell him that…. especially someone who is supposed to help him… a medical professional…. It’s enough that people… normal people…. make a mockery out of people like him… and he’s yet again reminded of ‘it’…. He tries hard to keep his cool…but can not be silent… he speaks from his heart… from his soul… but the anger boils within…

If only we could go back nine years and trade places with me… you would feel it too…

No! be thankful it’s not possible… be thankful for not ever having those feelings… but please do not judge… simply because you don’t know what it’s like…

I’ve made attempts to write about it in the past…. I have written about it but without explaining … leaving out the details…. leaving out the whys… the hows….

Only a few people know…. and only a few people need to know…

—-

I don’t even know if any of this makes any kind of sense to anyone who doesn’t have the full story… and right now I really shouldn’t care…

I am still working hard to keep my cool…. Most of the time I succeed…. at least that is what I try to let people see… the calm and cool me… but well I did kind of lose it for a minute or two a few days ago …which btw I’m told… thankfully…. I’m not the first person who does that after a surgery like this… and ok…. I’m over that now… shit happens and all that… right?

But I do have another problem or an issue I need to solve… and no matter how hard I concentrate on ‘doing it right’… my cool flies off and leaves me in an out-of-control mode and my head filled with memories… the kind I don’t want to remember…. Shortness of breath (which btw is not exactly a good thing when you just had your lung collapsed and reinflated) raising heartbeat and shivering ….

Overcoming memories of terrifying events from your past…. Some of you who read this may be thinking something like… He can go and have a major surgery like this and he’s letting childhood memories upset him! …well duh! If only it was that simple…. or…. Maybe it is that simple…

I believe I wrote a little bit about this
back in February after having one of my moments and refusing to go to the dentist… Yeah I didn’t say it in that post back then… but that was what inspired me to write it in the first place… fear of going to the dentist… In fact it’s not just dentists…. more like everybody and everything where I know strangers will be touching my body… doctors, nurses… etc… but this especially goes for anything that has to do with my mouth… and each time… it brings up memories… very unwanted memories…. and the faces of the strangers change… the surroundings change… the air… the voices…. and I become a child… a child who is scared to death…. a child being tortured by his mentally ill…. delusional mother…

These reactions are not intentional… and right now it’s preventing me to from being able to eat again…. My brain is working overtime to keep me out of danger… away from trauma… and I feel the more I try to make it stop… the stronger it gets… For now… even dealing with it doesn’t make it stop… or go away…

Day 10 – EC Surgery

I’m on day 10 post surgery and still in hospital…

I’ve had my good days and I’ve had my bad days…. but ‘hanging in there’ …I still have the chest tubes and I’m still not able/allowed to eat as I have some swallowing complications (unrelated to the surgery though)… and they fear aspiration… so for now I’m on j-tube feedings only just like I was prior to the surgery…. I admit though… I had high expectations on this one… and I know I will need to be patient with myself… but for now I can’t help but feeling a bit down about it….

The main reason I’m still in hospital is because I’m sort of “homeless” as I can’t go home until they say I can fly…. I’m told… I will most likely be out of here Tuesday morning/noon… but the hospital (or insurance back home) will have an apartment ready for us… close to the hospital… but there is another family staying there until Tuesday morning… It’s not “home”… but at least it’s not hospital…. and I know that will help with my moods/grumpiness… however…. I keep hearing people telling me that my struggle is just beginning…. and I can’t help but wonder…

Day 9 – EC Surgery

My mood is total shit… I really need my “mood stabilizer”… my piano…

I do have a computer now so I should be able to write more easily… but my brain isn’t working very well at the moment… and I think that is also affecting my mood… It just takes me way too long to do everything and I feel like something is holding me down and I’m fighting to get loose… or like everything has gained extra 200 pounds… heavy… slow… slow-motion… are words that come to mind…

Tina is coming over for a visit later though… That will help I’m sure…

Day 8 – EC Surgery

Don’t really have anything new to say today…. I have a computer now and a proper keyboard to type with… My brain isn’t exactly in full swing though as they still keep me semi sedated…. which is really for the best right now…

I’m still having problems with my right lung since the surgery… but they had to collapse it to get to the esophagus…. and it’s not fully back to normal again… and I still have lots of fluids coming out of my chest… In spite of everything I’m ok as I try not to let the setbacks get a hold of my thoughts and worries… and concentrating on getting enough rest for myself….

really…. for now… it’s one of those occasions where I leave it to my wife to communicate with the staff about my condition and prognosis… at least until I’m mentally strong enough for that….

Day 7 – EC Surgery

It’s been a slow day… drugged… and blurry vision… but been worse… and in a way this is for the best given my “acting out” yesterday morning… life goes on and all that…

Been poked some today…. and X-rayed …. they are still concerned about allowing me to have anything orally… They said the ‘connection’ in my throat is healing but very slowly and they still have some concerns about that … and then there is the fact that my epiglottis is not doing it’s job properly …. with that and for the fact that I haven’t really been actively swallowing anything for the last few months… it’s not worth the risk… and with my history of aspiration and pneumonia I know that’s for the best… for now… I will pick that up again though…. especially if I get to work on it with my beautiful and funny speech/swallowing therapist from back home… but we’ll see…

I don’t have much more to say today… my brain doesn’t really have enough activity for me to think of more things to say at the moment…

(I was supposed to have a surgery for that one before all of this)

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