LOADS TO THINK ABOUT

So, here I sits in the hospital again: day 3. It is Christmas eve and I want out of here.
I came in to ER Monday evening because I was experiencing a big increase in pain, and other nasty symptoms. I really had no idea that they would keep me.
For the entirety of this lovely visit I have only seen hospitalists, no gastro Drs..
This is not cool.
On my own, however, I have made an appointment with Dr. Pham, the local pancreatic specialist, for early next week. I pushed my way in by saying I was currently in the hospital again and needed to be seen: ASAP.
I have also continued my pursuit of the big guy, the head cheese, the mob boss–Dr.Burdick, in Dallas.
He called me yesterday and told me he is transferring my case to Dr. Kim, who is the head of the pancreatic transplant team. First, a side note: they don’t actually transplant a new pancreas into your body. A Pancreas is sort of a one shot wonder. What they do transplant is the Islet cells, the little guys that make insulin, into the liver. This is really good because it means that although someone ( me! ) will become diabetic after the pancreas is gone, the remaining Islet cells, swimming around in the liver, will give the body protection against the worst case scenario, which is, brittle, or uncontrollable, type 1 diabetes.
So, that is the transplant part.
As it turns out, the panky ( affectionate term for Pancreas) does more than just process insulin. It also controls the release of digestive enzymes. Without these enzymes on board, it is impossible to break food into the different nutrients we all need.

In order for that to work, the post pancreatic/ islet cell producing patient simply needs to take supplements with each meal, for the rest of their life.

I am down with that.

Apparently the cost of doing nothing about this could mean inviting pancreatic cancer in. I dont want that.

So, in a way, this is like getting a total mastectomy before you even get a cancer diagnosis.. Because you have the braca gene and there is probably no escape.

It helps me to think of it that way. Because right now I am having a hard time wrapping my head around this.

ONE WEEK LATER:

I never did finish that post.  I came home and made it through the holidays in a fog of pain pills and fatigue.  I have now wrapped my mind firmly around the idea of a pancreatic removal (probably spleen and stomach parts.. depends on my anatomy) and islet cell implantation.  In fact, I want it done.. yesterday.

I am in a situation that is rapidly veering out of control.  I cannot eat solid food and I get sick from liquid nutrition drinks at this point.

I have upped the pain pills to the maximum.

I am so bloated it looks like I am eleven months over due with my eighteenth child.

Something has got to give.

I saw the panky dr. here in Austin on Wednesday.  He confirmed that I need the transplant surgery and that I should have known sooner ( don’t know what to do about this) that I had a congenital defect.  Basically, the other drs never injected enough dye or looked far enough to see what was under their noses all along.

I also saw my rheumatologist and he was very compassionate and told me to go with my instincts  and seek the care I need when I need it.  (Maybe I should listen to that.)

I am thinking I cannot survive a month or more of waiting for this surgery to happen.  But, good things happen on Facebook.

I have learned in the course of the last few years that there are sub groups for every ailment, no matter how weird.  I have hooked myself up with some folks who have had the same procedure at the same hospital and they are walking me though when to call for help and who to call.

I actually called Dr, Burdick, yesterday and he said I could go in to ER here or in Dallas.

Stan (hubby) was somewhat reluctant, and rightly so, to drive me to Dallas and just have me admitted with no plan.  So, I am still here, all night.

I am going to make some more calls in the morning.

I feel like I have reached the end of the end of everything.  I don’t have anymore to give.  I just want to be put to sleep.

Perhaps this is good.  I am no longer scared of the surgery.  It is horrible and nasty and very scary but I have no other way out and it might just probably give me most of my life back.

I am trying to remember to pray and to breathe and to reach out and ask for help.

But, it’s hard,

Sometimes when I reach out, there is no one there.  And sometimes when I pray, I hear nothing but the echo of my own plaintive whining.

I am worried sick over my kids and family and what they will do if I am gone too long.  My son needs help and my husband can only do so much.

My aunt is not well and there is no real help for her.

I just cannot hold all the strings together.

I feel like my life is a ball of yarn and I have dropped it and it keeps rolling and unraveling away from me.  I am scared that I don’t know  how to get it back.

I realize this is raw.

Sorry.

It is 4:55 a.m. after another night of pain and nausea and watching bizarre videos.

I am fresh out of love.

I need help.

I need prayers.

I need action.

God bless the lonely and the pain ridden.  God bless the doctors who deal with us.

God bless the families of the ill.

God bless the soft puppy dog that sleeps next to me all night.

I want to trade bodies with him right now.

Right now.

Licking my butt and eating dog crunchies every meal looks really, really good to me right now.