Beans, Beans the Musical Fruit . . .

I'm trying to go vegetarian, but that means that since I won't be eating meat, I have to eat beans. The only beans I like are Jelly Beans, so this is a big hurdle for me to jump. It's more of a texture issue than anything, but I'm really committed to this new lifestyle. So yesterday I ate Garbanzo Beans in a Wild Green Salad, and Black Beans in a Naked (no tortilla) Vegetarian Burrito. Yes mom, I ate my beans - and it was pretty good. I guess I'm growing up.

My Official Diagnosis: "Cute As A Button"

I know I said I'd update the blog tomorrow, but since nothing will change tomorrow morning, I decided to tonight.

We saw Dr. Traverso, the surgeon at his office and his resident. It was a strange beginning, actually. He introduced himself to us and as nice introduction, asked what we did for a living, and where we lived. When Adam said, "Graham," the doctor said, "Why?" I explained that we move to Puyallup because of housing prices, then to Graham after Herb died and my mom moved in, although I couldn't figure out why he actually wanted to know. Suddenly he looked at Adam, after being excited that he was a contractor and said, "Come with me," then took him out of the room - leaving me with the intern! The Intern looked at me and said, " . . . distracted with the first question . . ." It turns out the doctor took Adam to look at a map of Washington State to see where we lived. His reason: he likes to know where everyone lives. Strange.

So after about an hour long consult consisting of my recounting my surgical history, the more resent "hot-potato" referral game for the last 6-weeks, and some poking at my tummy, he and the intern started reading aloud my previous surgical reports. They each would read a portion look at each other and say in unison, "so they left the blah-blah-blah," or "she has a blah-blah-blah," obviously painting a mental picture no one else in the room could see. He kinda' translated by telling me something we had never heard: I am totally unique, they don't know what's going on, and they need to run more tests. Then he followed it up by saying, "But you're cute as a button!" Thank you? Then he started dictating into his phone saying, "Patient is a 32-year old woman referred by Dr. Kozarek . . . presented with abdominal pain . . . history of . . . biliary system and surrounding structure is a (long pause) conundrum," and shut of the recorder.

So I like him, although he is a bit bazaar. He seems comfortable and confident, a little bit like a "fun Bob" yet one that drives his interns crazy, but is unwilling to do surgery until he has a specific goal with an executable plan. I like that.

Tomorrow, I'll have a CT scan because yep, the one I ruined Friday - missed the very thing they needed to see. So they gave me some Valium and an appoint for a redo tomorrow afternoon. And he wants a new test . . . a little piece of my poo to evaluate (gross). I have to keep it in the fridge until I turn it in. Hopefully Josh will not mistake it for left overs!

I feel good about our progress today; his ideas are in line with our intuition. Please continue to pray for our direction, and continued discernment of the doctors, radiologists and surgical team we've been teamed up with, and that together we'll find a cure. God has been good to us, and I have faith that his goodness does not end!

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