Month: January 2016

So, I cannot believe it has only been a little over a week since I learned I was not a candidate for the pain relieving pancreatic surgery.

It has all been a roller coaster ride: emotionally and physically.

It has also been a very rough time for my family.  They did not know they were going to be going on roller coasters any more than I did. It is scary for them too.

I have been learning more about that and trying to make room for their fears and responses and general abilities to cope.

For my son, I have found a great place for him to get some very focused therapy that concentrates on having an ill parent.

For myself I have a new and very interesting ‘healer’ and counselor to try out next week.  She does all kinds of stuff that I am interested in learning about.

For my spouse there is whatever he wants to find.  I cannot find it for him and I am letting that go.

I am chugging along with my ‘to-do’ list from my last blog entry.

I have seen the two most trustworthy doctors I have and gotten some sound advice and I am slowly but surely starting to eat a bit of solid food again.  However, the goal here is massive weight loss so I am very, very careful what and how much I eat.  If I eat too much, my gut freaks out anyway so I have a built in stop mechanism!

I am up and dressed and getting out and having goals every day.

That may not seem like much to a non-sick person but for a chronically ill person coming out of a long bout of illness, it is huge.

Do I hurt? Yes.

Am I cutting back on pain meds? Yes.

But, I am trying to find that sweet spot where I listen to my body and not the negativity and self shaming in my head.  In the sweet spot, I hear things like, “Katie, you just did a really difficult task. Go rest a bit!”

I am clearing out a ton of paperwork and photos,etc. from my parents’ estate that have been stuffed into a bedroom closet in my house for five years.  It is a good thing to do. I am ready.  I wish like hell they were here but I am okay with the fact that they aren’t.

I have amazing memories.

Today, when the therapist that is going to see my son came to the house for the in take session, I told him I have autoimmune disease and primary immune disease.  He heard, “autoimmune disease.”

He proceeded to tell us he did a medical rotation in school and knows all about autoimmune disease and that it is %95 psychological.

I almost told him to leave.

On the outside I showed nothing.  I simply said, “I have diagnosed disorders that are treated by specialists  with pretty serious medications.”

He then proceeded to ask about the amount and type of pain medication I am taking.

I tried to explain and he became preachy again.

As he got ready to leave he asked if there were any constant treatments I am on.

I said, “Yes. As I was saying, I am on weekly infusions of immunoglobulins.”

He did not know what it was so I tried to enlighten him.

Clearly he was out of his knowledge range.

That is fine!  I don’t expect ANYONE to have heard of a disease that effects so few people.

But I also wish people would be more sensitive to NOT knowing it all.

He is very intelligent, very well educated and well meaning and ultimately I decided what he thinks about me probably doesn’t matter. As long as he doesn’t tell my son I have made up my diseases we are fine.

But, it just brings me back to the reality of life as a Zebra.

No one really “gets it.”

And, there is no reason for me to expect they will.  I just want a modicum of respect.

I could begin to surmise that it is a feminist issue.

I could go all academic on it and write about that.

But I won’t.

So, here I am.

I am one week out from having been told no.

I have learned that I can recover and move on just like I have before.  I have learned that no matter what I do I just have to do it one day and maybe one hour or one minute at a time.

I have learned that if I start the day with all the right ingredients: prayer, meditation, exercise, perfect nutrition, etc.

I run like an almost well person.

But, the days will come  when I don’t run so well and my oil needs changing.

I guess I need to store all the good things for those days.

Until then, I am going to not worry about the naysayers and the arrogantly ignorant.

They have nothing to do with me and I have nothing to prove.

I am self contained and self aware and competent.

I do not need approval.

I have all that I need from a higher power…

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…

 

 

 

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.