The BAG

It has been quite some time since I looked to my blog, and thought of writing.  Not that we had a shortage of adventures to write about, but perhaps they were not all cupcakes and rainbows.  I deep down know I am still in such a negative place I should not type a word, but I think it is time to share my thoughts on the past few months that I will title "HELL" ...

I have written quite a few updates via Facebook, and I kindly see so many replies stating how positive I am, let me assure you I am not.  Lets go back a few months to catch up.

I made the decision to take leave from work when my health took centre stage and I could no longer function with the discomfort, exhaustion, medical appts and fear that crohns and liver disease were winning.  I thought the time off would eliminate all obligations with the exception of focusing on getting better with a goal - avoid surgery.  While the months were not without challenges, I took advantage of the "somewhat healthy" days to hit the beach with Greta to search for sea glass, visit with friends, get Greta ready and off to Grade 1, and prepare for the holidays.  Sadly, it took just 6 weeks in to my leave to realize that my fate was sealed and surgery was going to happen.  I will spare the details of the numerous Doctors I had to see, the many trips to Halifax to hear that I had no choice with the surgery, the surgeons that didn't make the cut because they felt bleeding to death was the most likely outcome, the buckets of tears that fell because I was truly terrified of death and leaving Greta without a Mother.  But all my pleas fell on deaf ears and I found myself in Halifax on January 10th, 2017 for the BAG. I prepared Greta the best I could for the possibility that it would just be she and Daddy; that I would live in the stars and she could look up and find me most nights; I bought gifts for her to remember me by, made a memory book of Mommy and Greta moments from the day she arrived until December 2016 and through many tears, she understood that the Drs were going to do there very best to keep me with her, but that she would always be with me through an invisible string.  I have notes stashed in the Christmas boxes that she and Darren would open next year to let them know I hoped they put all the trees up and how much I wished I could be with them to decorate.

While I was happy that my surgeon had confidence that he wouldn't let me die, in hindsight there are worse things, like: living each day since surgery in pain, dignity stripped, exhaustion that can't be described, zero desire to eat, post surgery complications and hospital visits, having your small intestine now poking out of what use to be a pretty damn good looking flat stomach with a friggin (and I only use this word as some may be offended by the language I would prefer to use) bag attached to me - just to name a few.

On January 12th, my large intestine, gallbladder and a piece of my liver bile duct hit the surgical room garbage can (well, some went to the lab for biopsy!)  Every day since has been complete hell.  I hate it, let me repeat, HATE, HATE, HATE, HATE, HATE!  I admire those that embrace the ostomy and see it as a life saver; however, I do not and cannot ever envision getting there.  Believe me, if the day does come I will be the first to shout it from the roof tops.  I truly don't know how much crap one person can endure, I am convinced I must have murdered small children in a past life to deserve this horrific life I have to face.  I never had severe pain with my crohns, don't get me wrong, it was no joy, but I would take that again in a heart beat, along with the cancer the Dr's assured me I would get.  And believe me, that is a tough statement to type, cancer has affected our family, as I know it has so many of those reading this, but at least I may have had a year, and then truly no choice for this surgery.  I feel the Dr's pushed me to have it, and I will forever hate them for it.  And sadly, it didn't fix my liver, so if I continue to live through this hell, I still need a new liver, there is truly no end in sight.  The thought of another surgery is of zero interest, I can't even fathom going through such trauma again.  The only good thing about this surgery, is when I need to go to the hospital (which has been twice in 5 weeks) the staff either know me, or look at the list of crap I have on my plate, tell me that I am tough and get me in pretty darn quick - how would you like for that to be your only positive!

Know what else sucks, not driving.  While I truly have no energy to get out of bed, let alone leave the house, I have tried, and that means relying on people to drive me around, pick me up, or go to the store for me....it is awful.  Not only did this surgery strip me of my dignity and body, it has taken away my independence which I dare say I valued more than anything.  I never rely on people, I hate people doing things for me or having to ask for assistance, and while everyone has been so wonderful when I have asked, it is devastating.

The one bright light of course has been Greta, she above everyone else has accepted her pathetic sick mother with a smile on her face, with genuine curiosity and while she has said quite a few times, "that is disgusting", she does so with a smile on her face, not complete shock and horror.  I can only imagine the stories she tells at school, considering she told Darren the other day that "she almost stepped in dog shit", I have no doubt "Mommy shits in a bag" has passed her lips!  It may be an interesting Parent-Teacher Interview this week.  I will give a shout out to Darren, who along with my Mother, did and continues to do everything, from cleaning, laundry, cooking, caring for Greta, being the taxi Dad and getting all my meds and supplies.

So, see, negative!  I am not positive at all, I do not have a good attitude, I am not pretending things are good because they are not.  This sucks!  And the "appliances" as "they" call it hurt, imagine duct tape stuck to your body and everything that goes in to your mouth comes out in a friggin bag attached to that duct tape.  I don't sleep at night because it is most active in the night, and I worry about it bursting open, leaking, the dog or cat hitting it, so that means I sleep all day.  I have developed a fear of eating (don't worry, the Dr's and Nutritionist know), I have lost enough weight to get me securely down to my size 4 wardrobe and even they are too big and falling off me, my hair is falling out (malnutrition), my liver is getting worse so I was a lovely hue of yellow (although this has improved), and I have had 35 viles of blood taken in the past month (so may soon need a transfusion - well, maybe not but it feels like it).

I hand it to all those who have success stories and love their bag, I know there are many out there who state this as fact.  But for now, I will continue to loathe it and see it as the worse thing that has ever happened.  I know I was vain, never denied it, but my body looks like a chainsaw slashed through it, and I want to throw up each time I look at the enormous scar, not to mention I no longer have a belly button, which is just weird, I know it was a useless body part, but seriously, it is gone and a hematoma bubble took its place.  It is gross.

For now, my next step is to return to Halifax to see the surgeon and my liver Dr. They will obviously be getting an earful on what I think of this new life, I will try to practice my speech to them so I don't spend the entire appointment crying, but considering crying is what I do 90% of my waking hours, I suspect that will be tough. Oh yes, for those who will read this and suggest medications - already on it...seems you get a ticket to a counsellor and happy meds when you lose an organ or have a life threatening disease - they are obviously not working that well.  Although I did stop crying 100% of the day, so a bit of an improvement.

I will try to add one good tidbit to end this blog - Greta is doing very well playing violin, loves swimming and gymnastics;  Annie (our puppy who is now 8 months old) has survived thus far, seems she did not eat toxic paint when she chewed the door trim or my antique wooden desk, she is good at night (after a day of being bad she is quite exhausted), and dear Scarlet is still with us, blind and deaf, but still puttering around.

Until we chat again, or the happy pills start working and I have something more exciting and nice to blog about...Toodles.