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…
