I am moving right along, at the pace of a snail. This week I had a meeting with the transplant doctor in Dallas. It was a rough day all ’round. I was in pain and nauseated as all get out.
My poor husband had to do all the driving.
And, what I thought was a yes/no /go meeting on the surgery was really just a first consult with the chief of the transplant program. Basically, he had not seen any of my paperwork and was just meeting with me based on the fact that I had been recommended by Dr. Burdick.
I have an idea or two who dropped the ball on the information getting part of the equation, but it didn’t really matter. We were there so he checked me over and asked me to go through my own history.
I did not come off too well. I had been crying from pain most of the way up there and was sleepy from nausea meds so I was a mess. Dr. Kim, the transplant surgeon, said he is not comfortable with proceeding with my surgery until he speaks with all of my specialists and has a better picture of how my body will potentially handle this surgery. He actually said, ” I don’t want to kill you.”
That sort of gave me pause.
It also scared the hell out of me.
Without the surgery, I will have to continue living the way I am now, and that is simply not acceptable.
Right now I am bloated like a dead fish. My belly looks like I am going to give birth to an eighteen pound child at any time and my feet and ankles are more like an elephants’ that mine. My hands are too swollen for any of my rings and my tummy is tight and hurts like hell.
I can only eat liquid nutrition and maybe the occasional egg and toast. Popsickles are my favorite food as of late.
This just is not living.
I have to take so much pain and nausea medicine that I am a dope and sleepy most of the time and my short term memory is shot.
I don’t like having no control over what happens to my body. You would think I would be used to it by now, but this seems like a newer and bigger challenge than some of the others I have faced.
Trust me, I am so grateful to have a diagnosis. I just really wish it were sooner and I could have saved more of my pancreas…
But, that is a long gone wish.
So, I have to stop, reset, reload and move forward. I cannot let all of this take me down. I have a family that needs me.
Yesterday, my son crawled in bed with me and said he needed me to hold him because he was afraid I might die.
That was too much. He doesn’t need to be thinking about all of that.
I am working on getting him the therapy he needs and on being specific with what he does and doesn’t need to know.
I cannot let the depression or the fear or the pain or the nausea over come me.
I have read of people being hospitalized for up to one month before this surgery . I have also heard of people who go on a gastric feeding tube only because they cannot digest food at all.
I don’t want to be any of these people. I am scared of it.
I know I can survive just about anything but that all sounds pretty overwhelming.
I can do this. I know I can. This will not kill me. It will make me stronger. Apparently that is the agenda G-d has going with me anyway, “You, Katie, get stronger… ugh.”
( I realize I just made G-d sound like a Neanderthal).
I have always identified with the story of Jonah when it comes to my relationship to the Divine. I have to be puked up by a giant fish for G-d to get my attention.
But, why?
Why am I being puked up by the giant whale again?
That really doesn’t square with my modern take on theology or divinity or of any of it. I mean, G-d is an insensitive jerk if She uses this kind of stuff to put people on notice that they somehow need to reach deeper and farther into themselves than they ever knew was possible.
What up with that, G-d?
Go pick on someone else!
Well, maybe G-d is not in this picture at all, or maybe She is on my side and has helped me find all of the help I have been given: i.e. good insurance, a lovely family, access to good medical care, a mind that is able to keep up with what is being said and is able to read and ask critical questions.
That may be as good as it gets.
Right now, I am paralyzed with fright. I am completely over wrought at the thought that I may NOT be approved for this procedure. Without it, I don’t know what will happen to me.
Well, I guess I do know: It will kill me, eventually.
All of it, in the end, will kill all of us.
I remember a silly line of my dad’s. Whenever Daddy heard someone had died he would say, “was it serious?”
Yeah well, serious enough.
So, how to go forward? I haven’t the slightest fucking clue.
1/19/16
This is a very appropriate day to pick this up again and finish my post. I heard back from the transplant doctor this morning.
I am not a good candidate for the surgery.
That’s right.
No surgery.
He said that with my liver issues he and the liver specialist feel that the islet cell transfer might send me into liver failure and kill me. He does not want to do that.
He pointed out that I am too young for that kind of last ditch effort and that he thinks I can do other things to manage it. Well, I have to do other things to manage it.
But the weirdest thing happened after I hung up the phone and cried a bit:
I felt like my prayers were being answered.
I have had a morbid fear of this surgery. That fear has been getting larger and larger since last week. I really have had a bad feeling about it.
I was going to go through with it if it was recommended but I kept having this feeling that I would not be coming back home.
What next?
Tomorrow I am having another (attempt) to block some of the pain by injecting steroid into the back where the pain is located, sort of. The doctor who did it the second time is doing this one and feels like he has a better idea of where to go and how much to use to bring me some relief. So, although I loathe steroids, I will give this a go.
I have a call in to Dr. Burdick, in Dallas, because he can do a much more targeted pain block by going through my mouth and placing it right over the trouble area. I am going to pursue that too.
There is still the option of the spinal cord stimulation device and the possibility that it could help.
And, then, most important of all; there is me and how I choose to handle this.
I am not defeated.
I can lose weight; (I have been but not in a healthy way) and I can learn what foods cause inflammatory responses for me.
I can exercise.
I can meditate and pray and be a lot more in touch with the center of my being than I have been.
I can also do acupuncture and acupressure and all sorts of things that are not traditional medicine.
I am ready! Bring on the woo woo weird stuff!
No, actually, I have a good, dear friend who has one foot in the alternative healing community and I have already asked her to be my guide. She is going to make sure I get hooked up to the right people.
I am going to get better.
I may still have pancreatitis. I probably, as the doctor suggested this morning, have bouts of autoimmune hepatitis.
These are bad, and damaging diseases. The only way to fight back, it seems to me, is to not fight so hard but to become a ninja.
By that I mean, I can learn to slide in, out and around the workings of my own body. I have to baby it. I have to treat it well and I have to make it behave!
So…
That’s it.
Today, I will look forward and not back.
I will remember that this body of mine, though flawed, has made it for 50 years. I can definitely push more out of that.
I am going to get strong and at the same time try to stay soft.
I want to listen to what Katie’s body has to say without freaking out and without googling anything!!!!!
So, Carpe Diem!
Or Carpe’ Pancreatum…