Letters From The Moon

Ramblings of a mad man

Time Out

I am avoiding social media….

I need some time off… and if anyone hasn’t noticed some of my posts/statuses/comments lately… although I usually end up deleting those… they have not been very upbeat or put there with the preferred set of mind… or from the “man I want to be”….

Therefore I am just going to concentrate on other things… such various writing projects I have been working on for years…. some website projects…. both new and old…. and my music… That is…. when my… (mostly mental) health allows….

….so YES, I am on a “time out”…

I’m still around though in case you need to shoot me a message or anything like that…. and I may post here on this website…. or on my music website Behind the Moon…. or even share my new projects (with an announcement on this website)

The Reasons of Life

I have been in a dark place lately… still am… but doing what I can to keep on fighting…

I am still grateful for being alive and having a chance to wake up in the morning…still breathing

I am grateful for having my wife in my life…. and for her having the patience to take care of the things I can not do for myself…. and never giving up on me when I did myself….

I am grateful for my children…. all ten of them… for being a part of my life… for their smiles… for their love… for their cuddles and sloppy kisses… the memories we’ve made together… the heartache and worries… everything about them…

I am grateful for my grand daughter…. and having a second chance on life and to be able to see and hold her in my arms….

I am grateful for my grand son… even though so far I have only watched him grow from a distance through my phone or computer… believing that there will come a day when I can hold him in my arms….

I am grateful for a tiny new grandchild that I will be holding later this year….

I am grateful for my medical team… as they are truly keeping me alive… and working hard on making my life a little bit easier….

I am grateful for the every-little-thing that makes life more beautiful…. and for the every-little-moments I can smile or laugh…

I am grateful for what I have experienced through out my life…. not because I would want to go through most of it again… but because it has made me into the person I am today

—-

You may not see much of me for a while as I feel I need a time away from social media at least… but we’ll see….

Health Anxiety

Last Friday I mentioned on Facebook about going in for a scope…

Going in… I already knew that the results would at least show that I’d be needing some stretching around the area where they connected my old and new esophagus… or behind my collarbone… but lately my swallowing has slowly become more and more of a struggle…

Those who know me and my backstory know that my ability to swallow has been quite a rollercoaster for years… and although I’ve had it worse …a lot worse… than right now… it’s been going pretty good for the past couple of years compared to what it was before the esophagectomy…

Anyway… last Friday… I was told I would be hearing from them in 2 to 3 days… and today was the 3rd working day… UHM… the call came… and since I don’t speak on the phone… Sunna talked to them…

Yes, there is a narrowing…. but it needs “further testing”… during the scope they took a sample/biopsy… They actually didn’t mention that to me at the time… or not as I can remember anyway… Sunna knew about it though… but that explains the soreness for sure… but that will take 8 more days!

Although they told Sunna not to “jump to conclusions” this isn’t what I needed on top on my already sky high anxiety lately… but for a while now… even before that scope… I’ve been having dreams/nightmares about cancer being back… I know that… especially for those of us who have fought the beast… the fear never goes away…

I know that wondering if the results will not be positive wont help… but I can not afford any more of this… I don’t want any more of it! My time is already running out as it is and I refuse to have that time spent with extra hospital time and doctor’s appointments

Life is supposed to be a well-illustrated book, bound neatly between two covers…. with the ink of its poetry spilling off every page… A life is supposed to be a story… and a story is supposed to have a beginning, a middle, and an end… For some of us there are chapters where life is hard…. For most… those chapters lead to other brighter chapters …chapters of some sort of triumph… some sort of revelation… a better life… I can not say every chapter in my book is filled with darkness ….even if it sure has felt like it sometimes… I know there are some pretty bright and uplifting moments in many of them… I also know that I often feel that even though I have felt genuine happiness… it’s like my state of mind… or state of entire being…. is unable to keep that feeling long enough…. There is always that fear….. Lingering in the back of my head…. A voice telling me to be careful whenever life feels ‘safe’….

I honestly don’t know though…. I wish I had an extra super charge power that could help me fight my own brain…. To stop the fear…. To silence the voices… to keep it clear of nonsense…. And above all… keep it clear and focused enough for me to do all the things *I have* to do before it’s too late…

If you’ve read this far…. I apologize for these incoherent “free-flow” ramblings… but they are all I have to give right now…. Thank you for being you <3 And… even though I know you mean well… please respect my wishes: Keep all religious comments of any kind to yourself…. My mind can not deal with those at all right now….

My Mind & And Body

You wake up from a nightmare in the middle of the night… and it takes you awhile to catch your breath and to realize it was only a bad dream…

You try to go back to sleep thinking: – “It could be worse” –  It’s not really happening…. none of it!

….but the scenes and voices from the nightmare won’t leave you alone….

You debate in your head weather or not to wake up your best friend who is sleeping beside you…

Finally you do “what’s right” and you wake her up… and tell her the code word… There is no need to explain it any further as she knows what it means…

She gets up and gets you something that will help you relax. You can’t get it yourself because you are hooked up to two machines that pump life into your body…

With in a few minutes you are fast asleep again…

It’s morning when you wake up again… A new day…

…Until We Meet Again

To Chris Dec 20 1968 – April 12th 2001

16 years since you left… way too soon…

I don’t think I ever thanked you properly for believing in me… for not listening when I didn’t go outside with you… You always wanted to go somewhere… wanted to study in the sun… go to a party… or meet people at a coffee house… When I wanted to lock myself in my room you persuaded me to come out from there… you saved me from myself so many time by telling me to come and talk…

We talked about anything and everything… I wanted to tell you things but it was almost like you knew already… I know you knew what I did when I was alone…. that I didn’t have to tell you unless I wanted to… and all that you asked as for me to be safe…. I wanted to and you helped me stay safe… Thank you for that…

You taught me so many things… and many of the things you taught me neither of us knew at the time… Even long after you left… I’m still learning from you… or rather… it’s more like I am just now taking in what you said… what we talked about both in our “serious” talks and while laughing together … and from the letters you left me… I realize now that I am a better person than I would have been if I hadn’t met you… because you taught me to love other people… you taught me to care about other people… you told me to laugh… and allow myself to believe that I deserved to be loved and cared about when I believed I shouldn’t be….

I want to tell you how much I wish you’d be here…. and how much …I want to hear your jokes that always made us go rolling on the floor laughing no matter how silly they were… You would have had a ball of fun with the poop jokes… and stoma farts and tummy sounds would probably have caused me a competition of some sort… I wish I could feel your hugs and have back the moments of the “serious talks” we used to have …I wish I could tell you over and over how I feel about you as my friend… my buddy …I wish I could have told you more often about how much I love you…. and how much I appreciate you coming into my life years ago and helping me to gain at least… some sense of my life… and inviting your sister to the November concert… Thank you for that…

I have so many thoughts running around in my head right now… some that make my heart filled with love …some make me want to cry my eyes out… and everything in between… I am scared for the future… but I know I can talk to you and get my strength from your words… from the memories… You are my friend… my best friend… Thank you for everything….

Love you always and forever…

The Situation of the Situation

I’m not sure where I’ll be going with this… but this is my attempt to explain the situation I’m in… that is… if there is a “situation” in the first place…

It was decided today that I won’t be having that last cycle of chemo… I have already gone through three cycles since January… and to be honest it was nowhere near what I anticipated… I can’t say it was an “easy” ride… but… let’s just say… it was not as bad as I thought it would be… I know I’m not exactly the average patient out there… with many other medical issues so all I can say is that I’m lucky to have been able to finish those three cycles… I also know that my team of doctors and nurses did everything …and more… for me …and for my wife… to make this ride as comfortable as they could…

What happened last Sunday… the seizures and my blood pressure going up… and more …which I really can’t explain for a lack of proper English to do so… is the main reason for discontinuation of the treatment…

I know some may remember this… but in two years (exactly two years) I’ve had two cancer diagnosis… First time in August 2015… in my esophagus… very early stage though… but surgery was already on “a future plan” for me so that tiny cancer just made them move me higher up the priority list… I had the surgery and didn’t need any other treatment…

A year later… August 2016 I had cancer again… This time in my bladder… I can admit that this one was quite a shocker… and something I did not expect at all… and this time it was quite aggressive and it was growing fast… That fucker turned out to be stage 3… or something like T3G3 (for those who understand that)… I was advised to have surgery right away followed by chemo… rather than a combination of chemotherapy and radiation and then surgery because of my other medical problems which I agreed to 100%… The outcome after the surgery was good and although the cancer was found in the surrounding fat layer of my bladder it hadn’t spread any further than that… or at least nothing was found in the samples or lymph nodes they removed during surgery… However the chemotherapy was done as a precaution… just in case if there were any bad tiny runaway cells still in my body … and/or to lower the risk of cancer returning…

Now with the chemo coming to an end before schedule… there probably isn’t much harm done… at least that is what I hope for… and there is really nothing else that I can do about it anyway… other than be optimistic and hope for the best…

I know I’m not really a superhuman …close maybe lol but I know I have my bad/down days… however… I also know perfectly well that worrying about something that I have no control over …something that might or might not happen… It would only make me anxious and miserable and making me miss out on all the good things I have in my life… and that… I want to try to avoid as much as I can… One day at the time… that’s how it works best for me… So in order to remind myself… I’m quoting my own writing that I posted on my Facebook page a while back…

Struggling with problems is a natural part of growing… and it is really OK to fall apart for a little while… I know I don’t always have to pretend to be strong… I know there is no need to constantly prove that everything is going well… as long as someone besides me knows how I feel. For me… I’ve learned that my silence can be life threatening… Wouldn’t you rather risk looking like an idiot than trying to be brave and ending up hurt or worse?

Life is fragile… It is sudden… and it is shorter than it often seems… I have seen it way too many times… I accept the fact that I can not physically hug all my children… but as long as I have them in my heart… and in my memory… they are with me… Life shouldn’t be taken for granted… There may not be a tomorrow… not for everyone. Right now, someone on Earth is planning something for tomorrow without realizing they’re going to die today. This is sad but true… and therefore I try to spend my time wisely and pause long enough to appreciate each day… each moment I have…

Embrace your loved ones… tell them you love them every chance you get… Learn to love yourself… because if you don’t… it holds you back from truly loving another person… and always remember… every moment you get is a gift…

Of belief and disbelief…

Way back in September last year… I posted a video on my Facebook account where I played a song on my piano which I dedicated to my mother’s memory… Sometimes I share my videos in a few groups that I’m a member of and that is what I did this time… I know this particular song is of very high sentimental… as well as emotional value to a lot of people… and yes… I agree that it is indeed a beautiful piece of music…

Yet… I wasn’t sure if I should share it or not… or even whether I should post it at all… It wasn’t about if I thought people wouldn’t like it or not… or anything of that sort… It was way more personal than that… and more for my own mental safety and the effect it might have on my own emotional well being which was…and still is… at a quite vulnerable state these days.

But of course I didn’t listen to my own feelings so I ended up sharing it… knowing very well that it would stir up some unfavorable thoughts in my mind… Of course I would rather have that than missing a chance to prevent even a one soul out there from feeling at peace through my music…

The song was Amazing Grace

A couple of days after posting that song… maybe even the day after… I sat down and attempted to write about why …or at least… how this …and almost anything connected to god or Christianity affects me… but …maybe due to my own spontaneous …or even… involuntary reactions I hit a wrong button on my computer and all was lost…

I want to give it another try…

I want to give it another try because lately I keep finding myself having to explain as for some reason people won’t stop to a simple no… or to the extreme… send me messages attempting to explain how wrong I am for “denying their god” …or the classic… “You are going to hell” remark… I hope most of you get the picture…

I do have my reasons for having to avoid this subject… reasons that I cannot yet fully write or share without jeopardizing my mental stability… or without pushing myself off the edge of an already weak mental state…

When I tell someone… especially if that someone has strong religious believes him/herself that you don’t believe in God or that you have different opinions about the Bible …they often automatically assume you are somehow a bad person… or they will try to ‘save’ you …even attempt to scare you into believing in their version of god…

…so here I am again… attempting to write about the very one thing that will usually bring up unwanted emotions… a strong collection of emotions where my brain runs off into the darkest corners of my childhood memories… Where I can hear the voice of my mother talking to her god… and where I can physically feel the pain on my 51 year old body… the same pain I felt as a child …while being tortured…

People who truly know me… family mostly… know that I try to avoid the subject of religion and anything that has to do with believing in god… or a higher power… They are also the people that respect my opinions on the subject and if… on that rare occasion… it comes up in a conversation or in life …like a christening or even a church wedding… or something of that sort… I am able to ask to be excused if I feel so… and they also know that a funeral isn’t in the picture either…

Holidays like Christmas or Easter is a mental struggle as well but my wife and close family has helped me by making new traditions and turning these holidays into non religious family time…

They know that everything I have ever accomplished or survived through was done with my sheer determination of getting through it… I won’t say this determination has always led to the best results in every situation… but …it is what it is… and it is indeed what has kept me alive… multiple times in my lifetime… and so far it is what works for me…

With that said… I do have my own personal spiritual beliefs… but without a god or a higher power… or a power that is higher or more powerful than exists in me… In many cases I don’t feel a need to find a solution to everything… I don’t really feel the need to wonder about where I will be going after this life… I don’t need to know why I have had to go through all of what I have been through… and I don’t need to know why my mother and my children had to die in that fire 24 years ago…

I try to use the phrase “I want to believe…” rather than “I believe…”

Yes I do want to believe my children are together… I want to believe that “souls” are connected… not just through this life but in other unknown dimensions as well… I want to believe I have known my wife for a very long time… much longer than those almost 32 years we’ve known each other in this lifetime… And I know we will continue to know each other when we leave here… That is one thing that makes me feel at peace… It helps me to accept the fact that neither of us will live forever… I don’t fear my own death… never have… but I do fear the death of my wife… any of my children… or anyone close to me… or … maybe in a selfish way… I fear my potential reactions… if any one of them should go before I do…

…and yes I want to believe that my loved ones are somewhere where I can join them one day… and sometimes I do truly believe that… but it’s not “heaven” or anything in that sense… However those kind of thoughts are not something that I want to spend hours wondering about as I know there is no real physical evidence of that anyway… There is no solid proof… and maybe the only way for me to find out is to kick the bucket and check it out… and that’s not on my list of plans …for now at least…

When I think about it this is what has helped me with the hallucinations… the need to be able to have a solid proof for everything… I know very well there are things in life you cannot find an explanation for… and that’s where most people turn to religion… Where knowledge ends religion takes over… but for me… I don’t know… It feels like a waste of time to try to figure out an explanation of everything… I don’t know why I had to go through my childhood the way I did… I don’t know why my children had to die…

Yes sure… in the past I have spent time trying to find a “reason”… and used the most obvious one to me at the time… it being what I was taught as a child… that it was because I was evil and I wasn’t in enough physical pain to control it…

Many people jump to the conclusion that my disbelief was brought on by the death of my children… In a way that’s understandable as it’s not uncommon for those who believe in god question their faith when a child dies…

But in my case it’s not really about my children dying… but it goes much further than that… most…if not all of it to my childhood… While I know now that my mother was wrong in what she believed about me… Some things are just not that easy to shake…

There is a lot that I have accomplished through therapy over the years… I have learned ways to deal with my mind… How to keep my “inner demons” from destroying me… Some I’ve managed to get rid of for good… but some I have locked in a cage inside of me… Sometimes they can break the lock so to speak and poison my thoughts…

I know I can’t fully explain how this… religion or god… affects me… I don’t think I can fully understand it myself… but if I did… I’m sure I probably wouldn’t be struggling with it the way I do sometimes…

Although I know people mean well when they tell me they are praying for me… I sometimes struggle with the very thought of it… Sometimes I struggle with a simple word someone puts down as a comment on my writing… or a comment on a status on my Facebook page… I can just ignore it on a good day…or at least my trigger threshold is higher…

Some days I have to stay away from those while I get myself to calm down from my out of control short circuiting brain… but I know I cannot hide inside a bubble to avoid this to ‘get to me’… and I don’t expect people to give up what they believe in… for me however… I find myself scroll away from that kind of posts… even with the smallest reference…

Yes… It’s a childhood/abuse thing … has to do with my mother… things she said… and did… to me… It triggers …not just memories… but more like feeling or emotions… something that I can not control… It triggers fear to a point of an anxiety attack… even visions of being a child again… being tortured by her… and when the vision is gone… a very strong need for me to hurt myself…

I grew up with both parents believing in god and reading from the bible… and making me reading from the bible… I had an ugly childhood… and yes… their religion… or their fear of their god… especially my mother’s was a large part of that ugliness… and while she physically tortured me …in the name of her god… quoting the bible…

The very simple explanation is… evil versus good… and her words… evil must suffer so it can be controlled…

…but of course there is a LOT more to it than that… yeah PTSD… and probably a bit of brainwashing too… and maybe a fear of a higher power ruling me… controlling me… I don’t want a higher power or something more powerful than the power I have in me…

She believed I was evil…she made me believe I was evil… Son of Satan… She prayed…she said God told her to torture me… to control my “evil mind”… Yes I know this was her mental illness… maybe even a part of my own mental illness…

Almost every day of my life until 10 years ago I wanted to die… and that feeling grew worse and worse… Although I did believe my mother about the ‘curse’ and that it would only go to someone else if I’d died… I didn’t care about that anymore… I wanted it to end for me… I struggled with the thought of it for almost two years though… of course I’d had thoughts like that before… even made a few “spur of the moment” attempts… This was different… and needed a careful planning… But when it was “too late”… I changed my mind… I only needed one second… or a part of a second to change my mind… Of wanting to live… and to be able to see my children grow up and have children of their own… and that split second… Just before passing out… the will to live took over…

I don‘t know if any of you are familiar with the word „trigger“ or „flashback“… but I sure am… And religion, especially when it is directed at me directly it is a trigger for me… as I mentioned earlier… I can actually physically feel and hear my mother torturing me…

I have my reasons for not wanting or needing a god… I hate the fact that people cannot seem to accept that… I can accept that other people believe… but please… when I specifically ask for no „prayers“ it’s NOT because I hate your religion or anything of that sort… and if you for any reason feel offended by the fact that I dare to say that out loud to protect my own well being… then I’d rather you’d just keep it to yourself and stay out of my way…

I know this is long… I know I’m going in circles… If you have read through the whole thing… If you read through this and I have in some way offended you… then by all mean feel free to silently walk away… Either way… I appreciate you taking the time…

Chemo – The start…

First chemo infusion done… and something else …before and after… anti sickness and something like that… all good for me… I’m sure…  Although I had anxiety going on …still do… this wasn’t too bad… I know it can get more rough though…    I know this may seem strange to many… but I’m not going to give much thought into what they are getting me…  I have my wife handling that side of the ‘business’…  and I can’t afford to have that taking my anxiety to a new level…. unless it’s to make it less…  At this point… it wouldn’t… but of course if I …or my wife and my medical team (especially my therapist) think it would help… I can always just ask…  but like I said….for me…. it’s better not to know all details….     and for now my ‘job’ is to tell if I feel anything out of the ordinary…

It’s now 12:30 pm …. and they want me here for a little while longer… a couple of more hours at least… just in case …..then back again tomorrow for the other one… I’m told that one will take longer though…  For now… just taking it day to day…  an hour to hour when needed…  and when everything else fails… just going with the flow… and keep swimming through the rough patches…

The Inner Emotional Overflow

On my last entry…. I talked things over with my wife… but she is more alert at my appointments than I am… I know I can quit the chemo anytime… and I know they won’t make me go through anything that would cause more harm than good…

People tell me I am “in touch with my inner emotions”… at times I feel like I’m a big cry baby though lol   but I know that with everything that I have been through in my life I could have ended up as an angry bitter man (maybe I will be one day)  but I kept ‘things in’ for the first 30/35 years or more  of my life….

I learned very early to keep quiet …and smile… no matter what… to lie about how I was feeling or thinking if I had to… but then eventually I started having nightmares… I was unable to sleep… it kind of took its toll on me mentally and physically… and I couldn’t hide it any longer…

My dad didn’t exactly approve of that… especially when he found out I was blogging about my mental illness and the abuse I went through on the internet and tried to shut me up… I almost did what he wanted… I didn’t though… I know by being open about it I have not only helped myself but many others who have been through similar experiences and that is why I don’t hide anymore…  Yes sure… I don’t talk about “everything”… but details aren’t always the best way to get the message across to others or to help calm my own piece of mind…

I know people see my as strong… yes I haven’t had an easy life… in fact I’ve been through more than most… yet I don’t feel strong… all I did was doing what I had to do in order to go on alive…

I grew up with a mentally ill mother…. psychotic and delusional… she tortured me… physically and emotionally to fulfill her delusions… she did it until the day she died… 1992… I was 26… I was too scared to run…. or tell anyone… even my wife… but I already had a family back then…

My father was away a lot… and if he was at home he was in his office …working… and closing his eyes of what was going on…. I know he knew… He should have been the one to save me… but he didn’t…. I did get a chance to talk to him about it before he died… but he still felt he had done the right thing and I was just ‘over reacting’… Having a mental illness in his eyes was something to be ashamed about… it needed to be kept quiet…

I know I have a problem with anxiety…. overthinking and anticipating the worst… I know my brain is wired to run from scary situations… PTSD does that to you…. and I know I blow things up in my head …way more than needed…

One thing that works for me is to ‘dump’ my thoughts like that… kind of makes them more clear in my mind and easier for me to sort them out… if that makes sense… I know from past experiences… the best way for me to get through this is to take it one day at the time… to not let the ‘bad’ thoughts in and be positive…. in fact it’s the only way…

As a compliment…people tell me I am “in touch with my inner emotions”… at times I feel like I’m a big cry baby though lol   …this time included…. but I know that with everything that I have been through in my life I could have ended up as an angry bitter man (maybe I will be one day)  but….  I kept ‘things in’ for the first 30/35 years or more of my life….

Of Fears and Future

I hardly post here anymore… I do still write though… but I just don’t seem to be able to ‘finish’ and post…  and somehow… the old feeling of ‘it’ not being good enough has been getting in the way…. and maybe…  feelings of  what I end up writing  just isn’t quite what I had in mind when I started… but I’m going to give it a try…

I hope you forgive me for incoherent and “all over the place” random words… but that’s kind of how my brain is functioning these days…  and well… If I end up posting this I probably won’t be reading this over as it would only get me to delete and or rewrite the whole thing…

Anyway… it’s been a while…

This year… like most previous years… have had their ups and downs moments…

Without going into details… bit of a back history …especially for those that are not following me on Facebook… I am however open to questions of any kind

In 2003/4 I lost parts of my stomach and my entire colon (two separate surgeries) so I poop in a bag on my belly…

In 2006 I had an “incident” where I lost a large part of my visible tongue… and also had multiple damages to the inside of my mouth, throat, esophagus and what was left of my stomach… which as you may have guessed… effected my ability to swallow… and among other things has made me have problems with aspiration…

In August 2015 I went in for an esophageal stretching but while at it they discovered “abnormalities” in there which turned out to be cancer… but early stage… To make a long story short…  I had surgery where they removed my esophagus and my remaining stomach and used parts of my small intestine for replacement…   but no chemotherapy or radiation or any other treatment was needed….

Although this is quite a difficult operation… and a long recovery process… I can say it has in fact make my life easier… in so many ways…    and although I was able to eat more orally two or three years ago… and more easily…. I am now down to being tube fed… along with some oral intake as long as it’s pureed but not too thin…  With the inability to swallow liquids and with my colon out and high output (fast digestion) I am unable to stay hydrated enough I had a port put in almost a year ago as I have had to have IV fluids regularly….

In August this year… 2016…  I was diagnosed with cancer again…  This time in my bladder… fast growing… large tumors all over the inner wall of my bladder and already in the different layers of it… but not all the way through.  Normally the treatment would be chemotherapy… straight into the bladder… or a combination of radiation and chemo…  I was advised not to have radiation as it might affect my intestine in that area… and I kind of don’t have a lot of it anyway so even though they had to use parts of my intestine I had surgery in September where they removed my bladder, urethra and lymph nodes and made a second stoma on my belly…. So since then I have two bags…

Now, after examining the bladder and all of what they removed in the surgery they didn’t find any cancer outside of my bladder/urethra… but with my “history”… previous cancer and growth rate of the bladder cancer they feel my best option is to have chemotherapy…. Which I will be starting on Jan 2nd ….not the ideal start of a new year… if you ask me…

Although I have had ‘meetings’ with the professionals… docs and what not… I have high anxiety about the whole thing…  In a way that’s nothing new for me as every medical procedure… from the smallest to the bigger one… always have that effect on me…  Having a brain that is constantly on “danger alert” and has been since I was a small child… does that to you… but I also realize that for someone with my mental issues and physical issues …and alternated anatomy there are lots of things that are different from “the norm” and therefore… lots of things that can go wrong… and/or are impossible to predict…   and although I know my doc and other hospital staff has been patiently answering all my questions… no matter how silly or weird they sound… there are still a few that they or I can’t answer until we are there…

The thing is that I hate the fact that with my multiple “abnormal” anatomy and physical abilities/complications I find it hard to relate to others on most things… and reading through the usual patient info pamphlets on things such as side effects or how to decrease/limit or prevent them… or what not…

Now… starting Jan 2nd 2017 I will be having a combination of two chemo meds… Gemcitabine and Cisplatin…  The Gem administered on day 1, 8 and 15 and the Cis on day 2… repeated every 4 weeks …four times…

I’m wondering if there is anyone one out there in similar situation as me… with the swallowing issues… and/or problems with aspiration…   The information I got from the doc talks about nausea and vomiting…. I don’t have gag reflex… since 2006 I haven’t had much problems with vomiting  but when I do I’ve had to be hospitalized  and even put on a ventilator after vomiting in my sleep and gooey stuff going down to my lungs… I know sleeping in an upright position helps but that’s what I’ve been doing anyway…

…another thing that bothers me is the frequent mention of “drinking lots of fluids” which I am unable to do…  I know I will be getting extra fluids through IV though… and with the fact that everything that goes in and comes out of me can me carefully measured my rational thought says I don’t have to worry about that… but the irrational part of my brain can’t seems to let that one go for some reason and is doing a great job at splattering these thoughts all over my dreams at night…

I know I probably won’t find anyone that has the exact same things going on… maybe in parts… hopefully….  I admit though… I’m not really sure what it is that I am looking for… all I know is that I am terrified… and overwhelmed and I don’t know if I am physically and mentally able to get through the next four months in once piece …    I did leave out …until now… I have quite a few mental issues as well… doing “remarkable well” through the past two years though… and on medications which help with most of it… but not everything… all the time.  But the thing I fear the most is the thought of “losing it” …of not being mentally strong enough to keep myself together… which again… will not help with the physical side of the whole deal…

This is getting too long…. I’m amazed you’re still reading this long rambling of mine…  for that I thank you…   Like I said before… I don’t really know what it is that I’m looking for with this post… but any advice, tips, comments, stories, encouragement …knowing that I’m not alone… anything really …is greatly appreciated…

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