Wednesday, January 28, 2009

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.

Tuesday, January 27, 2009

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.


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!

Saturday, January 24, 2009

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 . . .

Wednesday, January 21, 2009

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.

Tuesday, January 20, 2009

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 . . .

Monday, January 19, 2009


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


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.

Sunday, January 18, 2009

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!

Saturday, January 17, 2009

The lilac

I was listening to Cisco, you know, the master gardener on the radio. It's funny that I even listen because everybody knows that I don't have a thimble full of dirt anywhere that could sustain life other than weeds and pasture grass. Anyway, a woman called in because her lilac tree was not blooming and she had planted it over two years ago. According to Cisco, lilac's can take up to 15-years to feel ready to bloom but he said you can shock them into blooming by uprooting them and immediately putting them back during a hot summer day. He said that this feeling of being threatened will make the plant desire to propagate to save it's species, stimulating it to bloom and spread it's seeds for new life.

Normally, this would not be anything other than interesting, but for some reason, it had different meaning to me at that very moment . . . I think I'm a lilac plant!

With all this crud going on, I've really been forced to face my own mortality. Adam and I cannot have kids, but for some reason I'm rethinking it. I'm not ready for kids, don't really want my 'own', but lately I've been thinking, "Should I want them?" Do I want to want to have them? I've been plucked out of the dirt and shocked into thinking about propagation of my species.

Maybe I just need a little sun . . .

Friday, January 9, 2009

Well I'm happy to announce that Lake Arntson is back to Pond Arntson like it should be.

The night before last Adam stayed up all night making sure that the water pump was running. It ran out of fuel every couple of hours so he ended up with little sleep. At the time, the water was a fraction of an inch from breaking the foundation walls on the west side of the house, and was about a foot from the back door. We had moved most of our furniture up stairs and put the rest up on blocks to prepare for water to come inside the house.

We really thought we'd be flooded yesterday morning, but thanks to Adam that's as close as we got. Our water pump moves about 140 gallons of water per minute and we ran it for about 36 hours with the only interruption being to refuel it.

We have septic systems here, so they flooded and burned out one of the pumps. We have rarely flushed the toilets the last few days. We've been living the moto, "If it's yellow let it mellow, if it's brown flush it down." Hee-hee. Today I WILL take a shower. I swear, I smell like a camel.

Drainage is pretty poor around our house anyway, but this was what we called the Perfect Storm: poor drainage, a foot of snow that melted and stayed on the ground as water, and the areas flooding with a full night of rain.

This spring we're going to do everything we can to put in real draining systems. The people who built this place blocked the drain gully next to the road to put in a semi circular drive way. Thanks dude. We feel that this is a huge reason for the lack of drain-ability of the standing water. (Boy, I'd really like to give that guy a piece of my mind. They really didn't do anything right here.)

All in all, it's been pretty exciting but in all honesty, I'm glad the excitement is over . . . well at least for a while, right?

Thursday, January 8, 2009

Great news – Dr. Kozerek has accepted my case! I didn’t expect to hear anything until Monday so this information allows me to breath a bit easer.

This morning I called his office even though I was told to wait for their contact. I just couldn’t sit here and wait . . .Thanks to Jessica, his administrative assistant, and her sympathy for my condition, she was able to catch him early this afternoon between meetings. He had already received my records and based on the information he received from all my recent adventures (and Jessica’s help) he’d like to do a procedure called a double balloon endoscopy (DBE) the same day he sees me for the initial consult. According to her, this is not standard protocol, but they’ve made an exception for me. She told me he said it’s urgent that I have this done (so I’m happy I didn’t wait for a call). Unfortunately, he’ll be out of town the greater part of next week, so my appointment could not be scheduled any sooner than January 19. This is the plan as I know it: I’ll be admitted at 6:45, have my consult with Kozerek at 7:00, see the anesthesiologist at 8:00 and begin surgery at 9:00am.


The surgery requires general anesthesia, so I’ll be admitted to the hospital for a minimum of two days. It could be more based on the actions taken during the procedure. . .in the meantime, I’ll have to manage the pain with Viocoden. All in all, I’m happy to have my name on a schedule somewhere, even if it means I’ll be doing a little more couch-time next week!
Welcome to the roller coaster . . .

So I've become a Blog-r

Ok, I know that email is great, but this may be just a bit easier for me and Adam to keep up with everybody and our adventures (good and not so good). Welcome to technology!