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….

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…

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…

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…

Surgery

Surgery date is set…. Monday September 26th… Removal of my bladder… I will be going in on the previous Friday… maybe even Thursday or sooner… It will all depend on my health at the time… and of course… This could change if they believe I am not fit enough to even go through the surgery….

I have lots of appointments to go to until then….

This whole thing is more real now than it was before…. I realize the surgery is going to be difficult on my body… Although the esophagectomy a year ago wasn’t an easy one… in fact I’m still recovering from it…. I was healthier in so many ways….

There is great a chance something may go wrong… and to be honest…. for me… now it doesn’t have to be something ‘big’… I also know that even if I won’t have the surgery… I’d still have cancer and other forms of treatments which my doctors tell me can be even worse for my body… will take a long time… less chance of being successful… and may even eventually lead to needing surgery anyway… which at that point I would probably not be strong enough for at that point …. so simply put…. my best option is doing it now or not….

My anxiety has been through the roof all day…. I won’t deny that…

I’ve never truly believed people who say I am strong… or say that I am their inspiration ….maybe because the first 27 years of my life i was broken down by the person who should have done the opposite…. or maybe….with all that I have been through to this day I have felt weak and afraid… It’s funny…. A couple of days ago I posted photos of my belly on my wall… I also posted them in a few groups I’m in…. stoma groups… bladder cancer…etc. I didn’t expect the reaction i had…far from it… I didn’t really expect any type of reaction tho… or think about it at the time… but reading the comments made me feel stronger… It made me realize that people… not just my family…. wife…kids… granddaughter…. but people I will probably never meet in person…. need me to be around ….I feel weird for even admitting it to myself…

Yes I am terrified of something going wrong…. and that i wont make it …. but I’m going to do everything that I can to keep my heartbeat going through all of this… that I can promise you… and I know that even though my body isn’t very strong I’m a lot stronger mentally now than I was a year ago…. but ….for the time i have until the surgery I want to spend as much time with my family as I can… and focus on what is to me… the most important in my life… my family… my writing and my music… I’m not going far though… I’ll still be around… and probably sharing a video or two… but i may not be around as much as I have though…

I know this is random… its me …uncut… and uncensored… which right now is the best i can do…
Just one more thing…. YOU are amazing… stay strong …it’s the only way to do it!

Day of surgery

I wanted to update you guys as requested by Gabriel, my husband.

The surgery took a while or 8 very long hours and about 35 minutes. I was updated regularly though but it was still a very long and very difficult wait. Tina Karen went with us to the hospital and stayed until noon when she had to leave for work but Annette (my sister) was with me the whole time. I’m so thankful for you guys! I couldn’t have done this without you two
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Anyway, the op went without any major complications. His blood pressure fell during the procedure but they were able to get it back up. There were some other minor things but according to the doctor they were able to take care of that too and it shouldn’t cause him any major problems later on in his recovery. The surgeon told me Gabriel did very well and said he was a fighter. I couldn’t resist and told him my husband is a super hero! 🙂 (Thank you Theresa for this one – a private joke between my husband and one of our friend) and that’s where I teared up and literally jumped on the guy and gave him a big hug. Not sure what went through the poor man’s mind there for those minutes, me hanging on to him like that but I probably did leave a pool of tears and snot on his doc uniform.

At the moment Gabriel is in ICU and they will be keeping him asleep at least until tomorrow morning. I haven’t seen him yet since before the op but I will tomorrow. At this point they can’t say for sure when he can get out of the ICU but they told me they usually keep people in for at least two days, sometimes three. I know Gabriel is in good hands and they are keeping a very close eye on him. Today has been a very long and emotional day and for now I am going to try to get some rest. I will be calling the ICU later tonight though for any updates. Thank you all for your thoughts, well wishes and support for me and for my husband. You are the best <3
Sunna

The Next Battle

I admit, I have either wanted to avoid knowing anything about this or been wanting to know everything I possibly can. Knowing myself… it has in fact surfed me better to not knowing too much about upcoming past procedures… at least not until they are over and done with… but this time I’m ready to roll and let fate what it’s way… uhm so to speak…

This kind of surgery is quite a big deal… and according to my doctor a big lifestyle changer for those who go through it… and quite high on the top 10 list of the most difficult surgeries to go through…

In my case the basic plan is to remove my esophagus… the whole lot… except for a tiny stump in my neck… just enough for them to connect with my jejunum …or what’s left of it… and a healthy part of it… In other words… They will be cutting out my stomach (or… again… what is left of it) along with my esophagus and tossing it to the trash… the same may go for parts of my jejunum… and all that means I will lose my lil’ cute button (my current feeding tube) and get those boring long dangly thing… The bright side is though… I may be able to get another one later on when the stoma is mature enough… if I will need it 😉 …and that’s really what I hope for…

For a while now I have been sleeping sitting up to help with or prevent aspiration… but after the surgery I can kiss the idea of ever being about to sleep laying down good bye… I admit I wasn’t too pleased with the idea in the beginning but I am used to it by now… and can totally live with that now… In fact it has helped my with some problematic sleeping habits… like turning and tossing uncontrollably… or as my wife puts it… running a marathon in my sleep… In the past I have ended up ripping off my ostomy bag and waking up in a pool of shit… literally… and pulling on my tube… so hard that it popped out at least once or twice…

I know eating won’t be easy peasy after the surgery… I will still have my troubles above the esophagus… but I also know it won’t be impossible… I just need to work extra hard on that one for a while… and quite frankly I don’t mind if I have to make everything go through a blender before eating it… as long as I can eat something…

But back to the deal… There are a two types of surgeries most frequently used… a transthoracic esophagectomy (TTE) and a transhiatal esophagectomy (THE). For the transthoracic one they open up the chest at one side… between the ribs… collapses a lung, and works through the side. For the trans-hiatal one the surgeon opens the belly and the neck and works up and down the chest…

Well I guess in my case that’s not enough… I always have to be the difficult one 😉 My surgery will be kind of a combination of both where they will be opening up my neck, my belly and my chest… and is considered the most radical of them… I am not going into much detail on why they need those three holes to work through… but I can tell you it’s mostly because of a previous “injury”… or two…

As you can see this is quite an invasive surgery… but using these three holes has it’s advantages… The esophagus is a bit difficult organ to get at as it is located along behind the heart and lungs and pretty close to the spine…

But enough about the surgery itself… Given my previous crazy moments while waking up from anesthesia this is always something that scares me… What will happen after and during this time… Usually my head plays enormous tricks on my most of them very out of this world… unreal… On a few occasions I have actually ripped of things like heart monitor and IV lines… I have ripped out an NG tube on at least two occasions… Those darn things are for me like a dash of oil on fire. … And I’m sorry to say it… I have hit a male nurse… not to mention screaming foul mouthed words at the medical staff… and my at wife several times… And this happens in spite of precautions… not all the time… but it has happened… It’s all in my files and since this is a much bigger hospital than where I usually go… they must have dealt with some other crazy dudes or dudettes in the past…

I don’t always know if it’s a hallucination or a nightmare… probably a little bit of both… but this is visual, auditory and I smell things that aren’t there… Sometimes these hallucinations are very real to me though… somewhat like a flashback… and sometimes I feel as I am being experimented on by aliens… yes I do know hot that sounds… and you probably giggled 😉 …I giggled too… but it sure isn’t something I want to giggle about while it is… or while I feel it is happening…

So… waking up post surgery is quite a task too… and all depending on my brain… I guess… I won’t be doing it all by myself though… I know that… but none the less… I know that one isn’t going to be easy… for me… or for my wife…

It’s not like I do this on purpose

But here it goes… This is sort of how it will be when I wake up… This is snatched from a patient’s info pamphlet I found online… but my info have this image as well… (I’m guessing that maybe they stole it from the internet too)…

Nice huh?

In a way… although in a different way… we have been through something like this before… I know this is going to be difficult for my wife… We have talked about it… and she has been to see her therapist… I know she’s a strong lady and I have her sister’s word she will be helping her out and being there for her the whole time…

I really do believe this is going to be OK…

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