Living every moment

I have an appointment for a consult with a surgeon at Virgina Mason this afternoon to discuss our 'options' for continued care. I'm not really sure what we have to talk about at this point because there hasn't been any real progress in determining what exactly is wrong, or how my pancreas works. From what I can tell, we're just bringing this guy on the team, and up to speed with what we know or don't know. I'm supposed to call Dr. Kozarek's office tomorrow morning (after they talk following today's appointment) to see what the next step is. According to Jessica, Kozarek's assistant, and my valued gift from God, we are either looking at surgery, or a tag-team endoscopy / endoscopic ultrasound with Dr.'s Gan and Kozarek.

Eek!

This weekend was a good weekend for me. I must apologize that I've been a little pessimistic in my last few entries. I think it may have been because of all the meds I was wearing off coupled with the pain resulting from all the treatment/tests/surgeries last week.

On Sunday, I decided that I was going to start taking control of the things I could take control of instead of being kept captive by the situation. In other words: making lemon aid out of the lemons I've been given. I decided that I'm going to go back to work for at least two, four hour days and wear scrubs instead of professional office attire. (Restrictions of any kind of clothing like pants, belts, even wearing a bra, accentuates the pain to the point of unbearable, but scrubs and an undershirt will still look appropriate in a dental office and be comfortable for me.) I'm going to start walking for 10 minutes a day, no matter how far I get to, to try to build up some stamina. If I do have to have surgery, I need to be able to recover quickly. During my last 'illness' as a teen, my muscles atrophied so badly that I was unable to walk and had to relearn with physical therapy. Adam would help guide me down the hospital hallway then carry me back to my bed when I could not go any further - and I was only seventeen! Being thirty-two now means I won't be as quick to recover, so I need to get ready.

I'm also going to start asking for help when I need it. I know I'd help my friends, so I should allow them to help me. In fact, I asked my oldest and dearest friend to take me grocery shopping - and she said yes! Everyone is always willing to help, I'm just always too prideful to accept it and that's just down right stupid of me. "Pride goes before a fall . . ." and if I fall now, I'll definitely need help getting back up, so why wait for the inevitable??

So, yesterday I went to work for a few hours and did somethings I actually wanted to do, that didn't involve the TV or immense energy, but were utterly enjoyable. It was a very encouraging and healthy day for me, and a special "Thank you," to thoes who were a part of it!

I'll update this blog tomorrow morning with what we find out since we probably won't find out too much today. Please pray for us today as it could be a real turning point in my care. Thanks for everything, guys! This has been so much eaiser with your prayers and support. I don't think Adam or I would be sane without it!

The Produce Man

Yesterday I had the endoscopic ultrasound (E.U.S.) A couple of hours beforehand, I had an additional CT Scan that was to be during it, but I ruined one part of the three parts because my body chose to have a panic attack while in the machine.

I am so frustrated an myself I could hit myself. It's like my body has decided to sabotage my chances of getting better or something. I had a bad reaction to the contrast injection, my arm started to feel as if it was being amputated . . . I started to scream . . . I pulled myself out of the machine . . . I started to puke on the floor . . . two nurses tried to hold me from falling off the bed . . . I started to tremble . . . hyperventilate . . . then cry. I knew I ruined the test. They tried to call a physician to see it they could repeat the test, but no dice. You can only do it once every 24 hours. Nice timing Jenn.

So they wrapped me in a blanket and sent me to another waiting room where I fell asleep against a wall.

When I went into the EUS I swallowed my pride and told her I was having anxiety attacks and I have recently have not been able to control myself. I talked to the guy doing the scan, Dr. Gan, and he seemed perplexed by my case and frankly unsure what he was looking for.

But wait there is more . . .

They under-sedated me and I regained consciousness four times during the procedure. Why couldn't my body just accept the stupid drugs! Noooo, I have to burn them off like some freak of nature woman.

But wait there is more . . .

Dr. Gan said he wasn't sure that he got what he needed, so he recommending . . . wait for it . . . yep, you guessed it: another endoscope! Why? I donno, maybe they need to pay off the machine or something. Who knows? Not me.

So do I sound frustrated? I'm sure I do, because I am. All they are trying to do is figure out how my pancreas works. They cannot attempt to fix it until they figure that out. Why is this so difficult? And DON'T say it's because I'm special, pleeeeease!

In all of this, I'm trying to see God's purpose in this process. I'm still reading the book, "6 Dangerous Questions," and today I read about a man who spent his whole life as a produce manager, wondering what he could possibly do for the kingdom of God while sorting bananas and grapefruits. He eventually ended up in an African country in 1994 as an expert on shipping produce. One evening traveling on a boat with Mabutu he shared his testimony with him. Partly because of the influence of that conversation, Mabutu began changing the political temperature and led his people to the end of the partied.

I'm sure this man had crappy days, too. However, God was still able to use him in a powerful way. So, lets just say, I'm sorting fruit today and most of it is moldy. That doesn't mean that it will be that way tomorrow; I will remember that and have hope . . .

Too many doctors!!

I'm feeling quite dizzy today, so I'm going to make this update kinda' short:

I talked with the doctor's office today and they've got me scheduled with Dr. ? for the E.U.S. (endoscopic ultrasound) on Friday morning. They'll be doing a CT Scan right before it so Dr. ? will have it for use during the ultrasound. Dr. Kozarek will not be the one doing the test, instead he has asked Dr. ? to do it for him because he has more experience.

If they can do any 'repair' work then, they will, but after hearing that the last few times, I feel it is doubtful. I also doubt it because they have me meeting with a surgeon next week for a consultation (sorry, I can't remember his name either). Since they're still trying to figure out what this thing is it doesn't sound like they are too keen on poking at it until they have some answers.

I meet the surgeon on Tuesday to review the results of all the tests thus far, including any biopsy results that will be collected on Friday.

I've got no new news on the round-table discussion about my case they were going to do today. If I get any I'll let you all know.

There's no place like home (click, click, click)

Hey all, it's Jenn again. I'm back home now and just chillin' out doin' some more 'couch-time'. It's not really bed rest, but it's close.

I really have to say that I am happy with Virgina Mason and the staff. They asked me about a million questions over and over, but it's part of a new protocol so they don't miss anything. I didn't mind after I found that out! They are even running a few additional tests to make sure that nothing was over looked from previous blood work.

So as you can see from Adam's writing yesterday, we really don't know too much more than when we went in. I have to admit, it was funny watching the doctor stumped, hee-hee. (I know, it's not REALLY funny, but I'd rather laugh about it than let it get me down!) When we met him in the morning he reviewed all the previous scans and seemed very confident about his ability to figure me out. By the evening . . . well lets just say I presented him with a bit of a challenge. He stood there expression less looking hard into my eyes waiting for a ticker tape with all the answers on it to roll right out of my mouth. The only thing that came out of my mouth was something he didn't want to be around to see or get on him!

This morning he said he put took five or so of his colleagues to dinner just to discuss my endoscopy and they seemed as puzzled as he did. He even said, "I've written books about the pancreas, and have never seen anything like this . . ." I told him that I wanted to be in his next book (although I don't think he found that funny).

After all his 'thinking out loud' I said, "I've got a lot of people who will need me to explain this to them, so let me see if I've got this right: you found a blockage in my pancreas, you don't know what it is, and you're not sure what we're going to do about it." His response, "That pretty much sums it up." So there you are. It's not the stone I thought it was in my last email . . .

Adam seems to be doing well with all this 'excitement'. I cannot imagine how difficult this must be for him as he really has no control over this situation. He's not the doctor, or the patient. But he is a man who, as most of you know, can fix anything. He is not used to not knowing what to do. What I can say is that he has been a real gift to me over the years and continues to be the strength and love that makes this mess easier to deal with. If the Lord has blessed me with anything on this earth, it's been my Adam. Please pray for him too. My physical pain is easier to pay attention to, but his is just as real as we continue to go through this together.

Praise God for sending me to the best doctors, and for the ability he's given them to find the problem! Please continue to pray for their wisdom and ability to work together as they try to aid in this process. We'll keep you all informed when we know something interesting . . .

Tonight...

Well the doctor just left the room:
WOW everyone knows that Jenn is unique...
Now the people at Virginia Mason know so...
Over the years Jenn has received several different opinions by the greatest minds as to what is up with her pancreas. - a couple of the thoughts...
(a). 2 pancreases (humans should have one) sharing a common wall,
(b). pancreas divisum (spelling?) where the ducts just aim the wrong way (in laymans terms)
(c). don't have a clue... do you?
So the reason that Jenn was in the procedure so long was that the doc couldn't figure out what he was seeing... He spent two and a half hours playing with the pancreas. (it's not that big, so he was really trying to figure it out. She has a duct that doesn't seem to go anywhere...(an obstruction) He can't figure out if it is supposed to go though to the main duct (is it constricted or does it go anywhere). He put the camera up there and injected a hormone into the pancreas to jump start it's secretion process to see what happened... Secretions actually came out of it... And I don't know the meaning behind that, but it really confused him? So he couldn't really figure out where the main duct is draining, his guess is somewhere in the "roux en y" (the re-plumbing Jenn underwent when they removed the cyst at age 6). But couldn't figure where if it was...
I hope I am not totally butchering what he was trying to say.
So the big WOW I guess... The doc is going to have the entire radiology staff review all the scans and all of the reports from everything she has ever had done. Also, he is meeting with a pancreas surgeon, who may come to see us tomorrow morning.
I'm starting to forget all the mumbo-jumbo he was speaking... He did say that in all his years he hasn't seen this before... and did emphasize that he has a lot of gray hairs, and has been doing this a long time.
So the short story... He's calling for the best of the best around to look at the case... He is putting a board of surgeons, radiologists, specialists together to try to figure it out. Also, he is taking everything home tonight to go over everything again.
He did give a look at what MAY happen next... An E.U.S. an endoscopic ultra sound. They will put the contraption down into the stomach, fill the stomach with fluid, and take an ultrasound of the pancrease through the stomach to see what the main duct is doing. The will then inject a dye, and see where it goes... If it backs up, they will send a wire down through where the obstruction is, possibly balloon the passage, wherever the wire goes, they may add a shunt to keep it open.
OK that's what I recall, hope at least part of it is correct...
Maybe more in the morning after we meet with the doc again...
Jenn is doing pretty well right now...
She voided twice (I learned that term from the nurses... ie. puked). A little medication, and all is better.

Later all

Today

So this is Adam... Jenn never told me how to do this. I guess she figured that I would figure it out.
So here's the scoop as of 4 pm:
They brought Jenn back a little later than expected. It was a few minutes to 10am when they took her to the area that I wasn't allowed to go. She was brought to her room around 3pm, and was actually pretty aware. She even went from her traveling bed... to the bed in her room under her own power.
She was in quite a bit of pain, so they gave her something that she said made her feel a little out of her body. Now she's sleeping. :)
The staff of the hospital didn't tell me where to be, so I guess I missed the doctor. So I don't know much of anything about the condition...
Jenn was pretty aware when she came out, and listened to the doctors talking. They were able to get all the way to the top. And didn't find any thing of note going on there. Prior to her going in, we met with the doc, and went over the scans with him. He noticed something with the pancreas that may or may not have been an issue, but couldn't say for sure. So when they got all the way to the top, they decided to go back to the pancreas to give it a closer look. Now, this is from a girl just coming out of anesthesia, but she remembers them saying there was a noticable blockage in there, and it would take surgery to fix.
Like I said, that was from what she heard, and I don't know any different.
Later
Adam

The day before surgery . . .

Tonight we are spending the night at Adam's mom and dad's house. They live about 30 miles closer to the hospital so we figured that it would be easier to get there in the morning from here instead of from our house. I'm actually glad that tomorrow is Martin Luther King, JR day so the traffic will be lighter since we are going to Virgina Mason in Seattle.

My biggest concern is that the pain seems to have gone down quite a bit in the last couple of days. In fact, I haven't needed a pain med sense Thursday morning. I know that this seems like good news, and it is . . . however it may mean that there is nothing for them to "find" tomorrow during the surgery.

One of the hypothesis the last specialist had was that I had liver stones blocking the drainage of the bile (the liver juices that dump into the intestine). If I had one it would hurt like, well, like I've been hurting. If I passed it, there would be no proof that it even ever existed (cuz' it would be in my poo) so in all reality it would just be an educated guess, nothing that could be confirmed, other than diminishing pain.

My pain could be in a lull though, so I'll go through with the procedure tomorrow anyway. After all this mess, I'd hate to make the wrong decision now and have to wait another month just to get to this point again only to find out that my body took a little break for some unknown reason. I mean the pain is still there, but light compared to earlier. I actually went to church this morning! AND didn't have to wear elastic pants!

So, my specific prayer request is three-fold. First, I hope that they can reach the junction between the bile duct and the liver (since no one else seems to have been able to). Second, I hope they actually SEE something that they can point to as the source of my pain. Third, I hope they can repair it during the procedure tomorrow. I'm not too worried about how my body will respond, I'm a pretty tough cookie, but if you have an extra few seconds, that would be a good thing to as God for, too.

The schedule tomorrow is this: 6:45 am check-in, 7:00 meet with the new specialist, 8:00 meet with the anesthesiologist for pre-op, and 9:00am go in for surgery. I'm not sure how long the procedure will last, but the last procedure kind-of like this took almost two hours from start to finish and they only made it halfway up the bile duct. . .they think. I'm assuming this will take a little longer than that failed attempt, hee-hee.

So, I've asked Adam to post something here when he is updated; after he calls my mom and dad of course! I'll be at the hospital at least until Tuesday so it might be a few days before I can do this blog myself.

Thanks again for everything, guys and gals! I love you all!