Day 25-That all Depends…..

I have a few friends that have issues with incontinence and well so do I. It is not a pretty subject and one that some may feel is not “appropriate” to talk about. Yet someone who deals with this type of problem thinks about it all of the time; it becomes normal. Life is quite limited for us. The type of cancer I have is rare and the tumours I have secrete a hormone that causes my body to be ready to purge itself ….pretty much whenever it damn well pleases. Carcinoid Syndrome…

Clinical Explanation:

“The carcinoid syndrome occurs in approximately 5% of carcinoid tumors[3] and becomes manifest when vasoactive substances from the tumors enter the systemic circulation escaping hepatic degradation. Interestingly, if the primary tumor is from the GI tract (hence releasing serotonin into the hepatic portal circulation), carcinoid syndrome generally does not occur until the tumor has metastasised to the liver, because before metastasis, the released serotonin would be metabolised in the liver. If the primary is in the lung, no metastases needs to occur for a carcinoid syndrome to occur as the secretion occurs directly in the systemic circulation.

    Flushing:' The most important clinical finding is flushing of the skin, usually of the head and the upper part of thorax.[4] Secretory diarrhea and abdominal cramps are also characteristic features of the syndrome.

    Diarrhea: When the diarrhea is intensive it may lead to electrolyte disturbance and dehydration. Other associated symptoms are nausea, and vomiting. Bronchoconstriction, which may be histamine-induced, affects a smaller number of patients and often accompanies flushing.

Christine Explanation:

Depending on the day and depending what I eat (never mind it doesn’t matter what I eat) ….I am in the bathroom at least 10-15 times a day. Each time I go, I lose 1-2 litres of fluid. You can imagine how tiring this can be. It starts off with a flare up of heat that rushes across my face much a hot flash (ladies you know what I am talking about), and my stomach feels like I am about to give birth. Most times I feel dizzy and disoriented when I am finished. My electrolytes are always off. I am always thirsty no matter how much I try to drink to replenish what I have lost. I can lose up to 5 pounds in 2 days. It is extremely frustrating.

It is pretty sad that no matter where I go I have to worry about knowing where the location of the bathroom is right away. When I drive Sam to school in the morning and while returning home I have my bathroom stop already planned. Thank God for Timmie’s…

To suppress the hormone secretion I have an injection every 28 days.It is called Sandostatin Lar 30. This drug may also aid in the suppression of tumour growth; however, it has yet to be PROVEN. This injection is given to me by a specialized nurse that comes to my home. It is radioactive and requires special training to mix the ingredients together. The solution then must be continually stirring until it is injected. It gets injected into my butt muscle. Let me tell you this…I usually have to bite down on a piece of leather to handle it. The needle is very large as it is to accommodate the thick mixture. It then is slowly released through my muscles over the next 28 days. The side effects for me are horrible. I can barely walk for 2 days after as my legs feel like cement.  The benefit of taking this drug; I go to the bathroom less. Which gives me a better quality of life for a couple of weeks until the drug wears off. Then I am right back to hell on the throne. This drug has a cost of just under 3000.00 per injection. …

So let’s talk about shit. 

Did you know that it is noted in the  Guiness Book of World Records; the longest shit is 26 feet……

Did you know that despite it is a gross subject; even beautiful people shit…

I am a Whipple Warrior!(Whipple is the kind of massive surgery I had in 2004) Perhaps I have found my talent! I am a champion shitter. If they had shitting as an Olympic Sport, Canada would be on the podium for GOLD, SILVER & BRONZE Medals. Should I really be embarrassed by this? NOPE. I finally have the courage to talk about one of the side effects of my cancer. I think by me talking about it openly and honestly others that suffer with incontinence issues will have a voice! It is humiliating and debilitating to have to not only wear diapers but to have to admit it. So for the larger spectrum of shitters around the world, I Christine shall take one for the team and discuss it.

For me, flushings are usually fluid and lots of it, like I said sometimes a litre or 2 at a time. Some days I experience more and some days nothing at all. Sometimes there is not much of a warning of a flushing so I need to be prepared always. You just never know.  Around my house, it is all about humour when it comes to my “problem”…otherwise I don’t think I could handle the embarrassment of it. I am 43 and an extraordinary attractive, incredibly sexy woman….hahahaha, ok ok, but I wear diapers and some times, well most times do not feel so sexy or attractive. It kind of robs you of feeling woman like. It has been hard for me in that department…but none the less it is something that I live with and deal with head on. I am a shitter…and a damn good one. 

One day we ventured out with the kids and I felt a flushing coming on and well let’s just say I didn’t make it into the house. While I was in the bathroom preparing to go into the shower, Ashley burst into the bathroom with her video camera. I was mortified! She turned the camera on herself and said ” this is Ashley Boulos reporting live from the Capital Theatre speaking today with our newest star Christine” So “Christine how does it feel to now be a famous actress” “ Christine is an award winning broad way performer and is starring in Shitty Shitty Bang Bang” “How do you feel?”

How could I not find humour in that? I felt amazing after she did that. There is humour in everything I do believe this very much. (I really wish I knew where my kids get their sense of humour...)

I have learned to use my “issues” to my advantage. Girls are in the car bitching at me or at each other; child lock goes on the window…..wait for it ….wait for it. “MOM……you are so disgusting GROW UP”. “Will you stop bitching” “YESSSSSS”  ……..’OK then I will open the window”

I am in the kitchen making breakfast; Pat walks by the counter and sees that I am preparing food. He glances at the frying pan and notices 2 beautiful sunny side up eggs. He turns to me and says  “Are you mad at me?” “Did I do something to upset you?”…..now because he has such grace and kindness he would never say anything to me to make me feel bad like “oh God you stink” or anything of that nature….so he is afraid to address me about it. I know he thinks I do it purposefully to punish him; and I do. 

One of my families’ favourite treats to eat is cheddar broccoli soup; when I make it and eat it they know they have done something to piss me off. I sit and enjoy several bowls and smile while inhaling every bite. They often now pass on dinner if I make it or offer to. I don’t know why everyone leaves the room? I am still puzzled by that…….hmmm. Anyways….

Sidebar- A couple weeks ago my parents traveled with Pat and I to London for my surgery discussion appointment. After we enjoyed dinner with my parents, on the way home my Dad graciously allowed Pat and I to lay in the back seat and sleep on the way home. He drove my car. Half way home apparently I let one “rip” as my father said… he was not used to driving my car and inadvertently locked the windows and could not figure out how to roll them down. So my poor parents were tortured; but didn’t have the heart to wake us up to ask how they could unlock the windows. I joked after and told them that we had an optional oxygen mask drop above all seats in the car much like they do on airplanes….sorry mom and dad…hope the nose hairs grow back!

I have had to swallow what little pride I have left when buying my Depends. I often feel like everyone in the drug store is staring at me and judging me. Quite often, actually every time I buy them I engage a staff member to help me pick them out; I pretend my mother needs them; she just happens to weigh the same as me. Once I approach the cashier I tell her that the other staff member was so very helpful. Now if I am with one of the girls in Shoppers I make sure that everyone in the aisle knows that they are for me. Sometimes I grunt and sometimes I tell the staff member that I enjoy wearing them. “You know for the days you just want to lay in bed and watch movies and you just don’t feel like getting up to go”. 

That makes me laugh. 

1) because the poor staff member feels uncomfortable with my squatting and grunting…

2) it mortifies my children……….At the end of the day their embarrassment of my behaviour equals my embarrassment of having to buy them. I always feel like I have been understood or acknowledged. It is hard to be in this position at such a young age.

My “incontinence” will never be controlled. It will remain the way it is for the rest of my life. Even though my upcoming surgery will remove a huge tumour that is secreting this hormone; I still have several other tumours that will continue to secrete. I am not complaining; just explaining. Cancer is not pretty. There are so many little things that we as patients face that rob of us of our humility. I am thankful that I have the ability to find humour in this stinky situation. Sometimes I do cry about it, but of course I pretend to be laughing so hard that I cry. It makes everyone else feel better.

I guess it is out of the bag, (diaper bag)and I feel much better, thanks for letting me tell you about me poo poo issues. And I guess it is true 
“I AM full of shit”
~Christine~