To Blog Again

I envy Bloggers.

My intention to record my sixth operation and the unique experiences associated with, what they tell me are unrelated autoimmune deficiency diseases, to reach out to the world; not to suffer in silence.

I suffer in silence.

I quietly refine my internet searches. I understand Boolean logic. I've searched medical journals. I have never found another me.

I have read countless comments, posts, articles, blogs, journals, and stories about people with Ulcertive Colitis, Crohn's Disease and Osteo-Sarcoma, but I have never found any evidence or advice for someone with all three. At times I feel alone.

So this is my call. I have a J-Pouch and a Kotz Prosthesis. Am I the only one?

Oh and just to clarify the blog. I've now had seven surgeries.

I make no promises to blog again, but I will try.

Am I sick?

I can see a helicopter on the roof of Sick Kids Hospital. I may not know why it's there but I do know that the person it is there for is sicker than me. I've never been helicoptered to a hospital before. I have been taken by ambulance, many times. I've also been transfurred between hospitals. I also reconize photos of doctors in medical journals. I'm sicker than all my friends, but I'm not sicker than my friend's parents. I'm sicker than some of the people in this hospital but there are many more who are much sicker. I've never quite known where I stand on the scale of healthy vs sick. This is a question I constantly wreastle with. Too often I just compare myself to the person standing next to me. Some days I've been through hell and back and somedays I've just had some bad luck. I want someone to give me a scale that measures illness and give me a number. And with the number comes certain rights. If you are a 6-10 you are intittled to a seat on the subway. Under 2 you are not allowed to make referance to your condition at dinner parties.
I just want someone to tell me how sick I am.

Cancer vs j-pouch

So the emails and well wishes are rolling in. Friends and family from past, present and future. What people often forget about major illnesses is that they effect more than just the person suffering from the illness. There are many people in my life affected by what I'm going through. Sometimes it reminds them of their own mortaility, sometimes it is a reminder of somone they have lost.
Yesterday I recieved a message from an old friend who had been with me when I went through cancer 15 years ago. She said she knew I was strong enough to pull through this as I had in the past.
I am very torn between the feeling that I can handle this because I've been ill before and the "why me" feeling. I know I can survive this but I'm angry that I have to do it AGAIN.
On the positive front I wouldn't have the insight that comes with six surgeries if I hadn't had cancer and ulcortive colitis.

The Day After

So it looks like operation #6 will stretch into operation #7. Things did not go as planned. I don't know the full details yet, still waiting for my surgeon to explain what happened. What I do know is I still have a stoma, albeit a new one. The bag lives on, and my jeans remain in my closet for another three months.

It's not all bad. Sometimes it feels bad, but in the grand scheme of things, it isn't. They created the j-pouch, it's there waiting to be hooked up, but unfortunately couldn't be completed yesterday as per the original plan. I will need another surgery in three months, to hook everything up, and to finally get rid of the bag.

I wish I could tell you how I feel. But a combination of the hospital, the drugs, the good company (Mike) and the fact that I'm extremely hungry have confused my senses and my feelings. I think I'm upset, but at the same time I'm not. I lived for six months with the bag, I know I can live another three. I'm sure there will be posts in the future where I cry, and I'm upset, and I wish it was all done with, but for now I'm content. Another stage has passed, and that makes me happy.

Out of surgery, in the dark

Heidi is back in her room, playing with ice cube lollipops. She's a little out of it. We're still waiting for the doctor to visit and debrief, so we don't know if the operation was a success, failure, or somewhere in between. Most importantly, she is awake and looks pretty damn good for someone who just went through four hours of surgery.

I was hoping she could dictate this post but the script would read something like Fear and Loathing. Maybe tomorrow. Tonight it's sweet dreams and push button pain control.

More tomorrow.

Here we go

Heidi is in surgery as I write this post. Bit of a late start but all systems are finally go. Will update once she is out of recovery.
Mike

Surgery day

So here it is. I'm gowned up, I've had my vidals tested and I'm ready to go. Don't ask me how I feel right now. There is no feeling as you sit waiting for surgery. I just feel kind of numb. In about an hour I will be put under. Time will stand still for me and I will wake up feeling much different from how I do now. For now I wait, when I wake up life will be different. Life will be better.