Seems I'm always struggling with how often to post....then I think does it really matter...lol....certainly I have more things to concern myself with...ugh

I have struggle with my diet and my digestive of such for almost 3 years now....last fall my "new" doctor sent me to pelvic floor rehabilitation because I wasn't processing much of anything in a "polite" fashion and was totally depleted after having any kind of bowel movement...what I mean by "depleted" is...it seemed endless of bowel elimination once I started....could last for a few days then I felt so crappy like I have the flu and was totally uncomfortable "down below"...and couldn't stay awake...and my blood pressure took a crap....it was a continuing cycle over and over again....and I was told by the professionals at the time therapy started to eat normal.....well....soon after my first few sessions  things changed and did I learn alot.....the skinny....my intestines had collapsed here and there from scare tissue and I wasn't processing much of any food normally at all...thus the therapy....if you have ever had this type of therapy or heard of it...you know this is challenging and can require an evasive hands on touch.....not fun....there are many processes your body goes through once you eat and I had NOOOO idea...this includes kidney function, which I was having a horrible time with as well....I have had people recently say "I had no idea"...I didn't say much to most....it seemed I was losing my mind and I just stopped socializing for the most part because I never knew when shit was going to hit the fan and what the after math would entail...safe to say...it never was much fun for anyone....and all's I wanted to do was sleep...totally depleted every time...and freezing..low blood pressure...my breaking point was coming fast and on December 21st that day had come....

December 20th was my office Christmas party and it happen to be 45 minutes from my house, way East of me...on freeways I hardly travel...rush hour....seriously....my first thought...I hope I do not have a reaction to whatever I eat.....well....I would say 30 minutes after eating what I thought was safe....I had to excuse myself....which landed me in the restroom for over 30 minutes...texting Dave and telling him I'm stuck until the shit show ends and hope I can make it home with all the traffic in time for the next round....mind you it took 1.5 hours to get home because of were I was and the time I  had left....my worst nightmare.....needless to say...I finally arrived home...safe...and went to bed....

The next day I woke up fine (of coarse I'm totally empty) and went to get my hair cut...my hair dresser styled it for me as I was going to the "one" Christmas party Dave and I had committed to that season.....about 3:00 I started to feel like shit....and couldn't get out of bed without running to the bathroom ....again....I thought for sure this would of been a safe day and was excited to attend with Dave.....NOPE....he went and when he came home a few hours later....I was in the same situation....and I was pissed....stewing....I said I'm DONE.....if this is life....I will take the " shit bag" (ostomy bag) and be done with this because I literally cannot do anything anymore..and I feel like shit all the time...totally exhausted....no energy and I just hurt from all the blow outs and forced pressure that was occurring...from my body forcing a bowel movement....it wasn't normal and I didn't know what to do or say about it anymore....I literally was forcing my body to eliminate bowel multiple times a day because I never felt I was never done for the lack of a better term....it seemed unbelievable and a complete nightmare.....so I thought I'm just done....and until I could figure it out any further...I'm not eating any meat what so ever...because at that time I had a funny feeling it was meat....I had turkey two nights in a row and I thought for sure that's what it was....so my journey starts then  with totally dedicating myself to figuring this out one way or another....keep in mind at this point I had been in therapy for a few months..I think it started late Sept early October and I was now going every other week, so not that often...more on that later.

Well seems this girl has totally dropped the ball after I stopped preventative chemo treatment....my excuse.....I just wanted some sort of normalcy in my life....and seemed determined to get it...

This last blog was November 2015 and my reversal surgery was in April 19th of 2016 ...it seemed that day would never come as in the earlier part of 2016 I had to have ANOTHER procedure for diverticulitis and my healing was super slow....but in April....it was soon to be over...and little did I know....that was just the beginning for the "new me" the "you will manage" well....they didn't say....pull up your boot straps...this is going to be one hell of a ride......UGH!

So a new journey begins with a whole brand spanking new digestive system in full order....mind you I didn't say "functioning order"....and so it begins....another challenge....okay....the skinny of it....you have no rectum and your digestive system is now back to ground 0 as a babies is....slow the roll on the food intake until your body gets slowly used to everything again....seriously....NO gasey foods....you have no "bowel reserve" (rectum).....those foods will come through your system like a canon.....oh boy.....do you have ANY idea how many foods cause gas...including sugars....remember....your like a baby digesting from the beginning....Ahhh okay....well....lets just say this has been a complete education...and it was FREE!  Bahahaha.....

I came from eating 4000 calories a day...yes you read that correct while I had the colostomy bag on because what went in came out within 30 minutes and I couldn't gain weight...the blood pressure issue was also a factor. (this is recapping from surgery) so now I have to watch my intake and certainly cannot consume 4000 calories from here forward...hummm well lets see....how are we going to handle this....lets just say....it was a "shit show" for sure...and continued to be until very recent. 

It's been sometime since my last blog....starting the chemo therapy treatment that was recommended for "Preventive" treatment was a bit of a challenge for me....to say the least....

Week one.....slight side effects...the norm....nausea...headache...tired.....rash/sores in the mouth.....some numbness....okay...I can do this.....as that week went on...I started vomiting.....things weren't settling down much.....but after one full week.....I was "okay"......whew....a 10 day break....I can do this   

round two.....as we drive to therapy.....I could see the difference in my skin....looking at my veins......I thought....what is this doing to my body.......I'm thinking....I guess "they" know what they are doing.....or they wouldn't be putting such "chemicals" in me.....before I knew it.....I was "hooked" up again......here we go......I can do this....day one a slight more reaction with the numbness......day two.....my hands and mouth were freezing up......day three.....I was so sick to my stomach ....and my left leg was totally numb......that week I dealt with the side effects.... everyday....they didn't go away as fast.......I couldn't wait to get the pump off and let my body flush this "crap" out......ugghhhh....okay.....another 10 days break.....sick all week-end throwing up......damn it....

Before "round three"....I had to see the doctor......we discussed my systems.....he lowered my dosage of "chemicals" and gave me a different anti nausea med......okay....round three should be better.......ahhhh NOOOO.......the side effects increased so bad I couldn't function and they were happening more frequently......I also had to get a "boost" shot for my immune system...this is where it got ugly.......it effected my breathing....every time I sat down or stood up it took my breath away for about 10 breathes and the pain in my lungs and kidneys was something I had never felt before.....this went on for over 7 days......as far as I was concerned this "preventive therapy" was killing my organs....and  could cause permanent damage...they even tried removing the pump a day early.....that did not help......when I went in for the "shot" my hands were distorted and frozen in place.....this isn't right......it just isn't.....okay another 10 day break......however.....the days that followed were tough....these systems didn't go away for many days.....and I still have the breathing issue in the AM when I get up.....just doesn't seem right to me....

Time to see the "Physicians assistant" for my followup....this isn't going to be good.....with all the systems.....and alot of going back and forth.....they came up with a new plan.....but this still includes the "shot"......ahhhh no.....I'm not doing that.....this went on for three days back and forth trying to come up with a plan to get me to finish treatment......bottom line.....I'm done with treatment.......that's what I said.....the side effects are to great and far to many...most people might have one...or two.....I had way more than that and seems the more they changed things the worse it got....enough is enough.....

I have heard some "negativity" regarding me stopping treatment......I didn't "give up".....I choose to stop putting those horrible chemicals in my body for "preventive" therapy.....I know my body and my body was rejecting everything rapidly....it was telling me....I don't need this.....I am 99.9% sure I did the right thing for myself.....and I'm totally content with my decision.....don't judge what you do not know....please....as my doctor said....I respect your decision......thank you....that's all I ask.......

If you would like a full education on what chemicals they were using and all the side effects.....please read the links below......you might feel differently.......

http://medical-dictionary.thefreedictionary.com/oxaliplatin

http://medical-dictionary.thefreedictionary.com/fusilev 

http://medical-dictionary.thefreedictionary.com/5-fluorouracil

http://www.drugs.com/pro/neulasta.html

The plan now...I'm still in the "waiting" period from the last procedure...the healing was between 12-16 weeks....it has been 8 yet (next week with be 8) I have made a follow up with the surgeon so she knows where we are at the treatment....my immune system needs to get back to normal (blood count needs to rise) before they can do anything anyway....I was totally depleted before they administrated the "shot".....so once again...we are just hanging out...waiting to heal......to have the "reversal" surgery done......time frame....we have no idea......I feel so much better now without any treatment....I'm just chillin' and enjoying my life.......feeling thankful for everything I do have...and the people that surround me far and near.....thank you again for your continue support......I'm so ready to move on and get back to "me" and helping others as many of you have done for me this past year!!!

Just when I thought I finally had ALL my energy back and was feeling myself again.....bam...another set back.....are you serious right now.....I can't stand it....please...what the H is going on.....we are coming to the end of the year.....you said this would be way over by years end.......shit fire.....dig deep....AGAIN.....

As Dave is driving me back to "chemo" for my second round this year I look down at my veins......after just one dose I can already see the effect in my veins.....it saddens me to see what destruction my body is going through....even though on the "flip side" it's making me healthy and whole again.....being so self-conscious all my life about my health...this has taken a complete toll on me and has totally mentally drained me....I'm exhausted more than I care to admit most days.....brings tears to my eyes.....but I plug on.....dig deep....pray.....hold my head up.....take another step.....and think it could be a whole lot worse.....pull yourself together....stop feeling sorry for yourself.....deep breath.....and move forward.....you got this....

I often wonder what people "really know" about what goes on day to day with me, do they really care???  Do they just listen and set it aside not wanting to deal with it...or maybe set it aside to ignore there own issues and not open there eyes to there health?  My world......when I said "often" in the first sentence.....I meant.....EVERY TIME I empty that damn shit bag which is 8-10 times a day and at least once in the night.....so often is ALOT.....what would other people do if they had to do this....how would they handle this....it's been since June.....it will be almost a full year by the time this ends.....this has not been easy....seriously what the hell do people think.....well...that brings me to the next "segment" of my blog....the graphics of it all.....put on your seat belt and be prepared to step into my "real world" for a moment or two, or for how ever long  you can stomach it....because this IS NOT pretty!

https://youtu.be/l9PYMfqNGm0

 

Frustrated beyond belief....I have chosen to keep myself out of the "limelight" so to speak as my venomous demeanor has NOT be something anyone would desire.....seems it will never come to an end these days...and I'm just plain pissed off at the situation all the way around....

Last news on FB was the outpatient surgery for the "fistula" which turned out not to be that at all, nor was it connected to my stomach which is a GREAT thing....it was what they call a "sinus" cavity and need to be repaired with a minimum of an 8 week heal...could be 16 weeks......are you kidding me right now.......needless to say when I woke up from surgery and heard this news I came unglued.....this was not a pretty site still being drugged up from the anesthesia....and now they want to talk about the "results" of the "resection" and more chemo......back to the oncologist on Monday......awesome....NOT.....yup....more chemo....more side effects...probably hair loss....sensitivity ( have to drink only room temperture)  to all cold AND......I have to get my blood back at good readings before they do the "reversal"......seriously......what the FUCK!  This is not the story I was told when we started all this "therapy" or as they say "treatment"......2 days on the pump....third day pump comes off....10-14 days break and back on....this goes on for 6 to 8 times....then "healing" then "release" from the oncologist.....then testing for the reversal......then the reversal.....we are looking at early to late spring as far as we can figure....but.....you just never know what might change between now and then.....I won't even get into the deductible and out of pocket that starts over in January...and I was told this would be complete by the end of the year....guess that didn't work out so well.....not to mention my "job"......I am not happy.....FYI this chemo is tougher and I DO NOT want any set backs....so I'm staying pretty much at home so I do not catch anything that lands me in the hospital....slight fever...in the hospital you go......it push's your chemo back  ....I'm hanging on by a thread literally at this point with my patience......I realize on the "flip side" that my outcoming is awesome and I'm cancer free.....my oncologist stated.....we found your cure and he is excited to say when this is all done it will be totally behind me......most people don't walk away like I did and with no issues during the whole treatment......including the Ilostomy bag....it's a miracle.......now if I could just trot on down to walmart and pick up some patience everything would just fall into place a bit easier......I'm super tired of feeling like life is passing me by and I'm not participating at all.....those who know me...know I do not sit well......and this sitting business and being at home has taken it's toll......so that's the skinny......

Okay.....so I have been waiting for a "return" call from my surgeon on the date of the BIG reversal.....yesterday I finally got the "call"......my expectations were "4 weeks" and I would have the "reversal".......this IS NOT the case.....and I was  totally taken by surprise and emotionally it drained me yesterday.....once again....I needed to wrap my head around this for varies reason's......the deal is this......in "mid" September they do the CT scan with some sort of dye that will "glow" if there is a leakage with the resection......if this happens we wait again (I do not know for how long) and test again....if nothing "glows" we can schedule the reversal.....this could be as late as mid October....I am NOT happy.....and don't care to talk about it....I will be focusing on other things at the house for now (remember my challenges with the "shit bag" and my blood pressure which will keep me mostly house bound).....I have some personal goals ......and will continue to workout and and build my muscles.....so when the reversal is complete in mid fall......I WILL come back with a "BANG"!!!!!