Monday, September 28, 2009

Start Your Engines . . .

Once again I'll play a bit of catch up for ya all. I know most of you know that I spent last week in the hospital so I figured it was about time for an update!

The meds I'm on keep my pancreas relaxed once I feel the pain coming on. It melts under my tongue and acts immediately. Under normal circumstances it works within 1-2 minutes. I mean POOF! the pain is gone. If for some reason it doesn't work, I take another one and the second try has always worked. In a case where that didn't work, I was to wait 20-minutes and take a third tablet and go to the ER in Seattle. We thought it was working fine since the pain had not progressed that far, well, until last weekend.

I did the two-tab regiment, followed by the third and added a pain pill not once but twice before I decided to take a trip to the ER. They ran tests, all came back normal, gave me a shot that made the pain disappear and sent me home. A few hours after I returned home, the pain came back with a vengeance. Adam was very worried and loaded me up in the car and we headed back in for a second visit to the ER. That's when I was admitted.

The hospital stay was fairly uneventful all and all. Lots of tests, and a whole lot of drugs to manage the pain and it looks like surgery is in my near future. According to my doctor, we need to wait at least 4-6 weeks for my pancreas to settle down in preparation for surgery. He's given me medication to supplement my pancreatic enzymes until then and more pain meds to get me through. I'm not sure what the actual surgical plan looks like, but will find out more this next week.

The hardest part of coming out of the hospital has been the withdraws from the drugs they gave me while I was there. I've since found out that the awesome pain medication they were injecting me with 5+ times a day was a synthetic Heroin used for extreme pain in clinical / hospital use. They tried to transition me to morphine, but after the worst "Nightmare on Elm St" hallucinations I've ever had, decided that wouldn't be the best for me. I've tried to go off the meds cold-turkey, but feel miserable so I'm trying to manage the best I can.

I am a walking "Just Say No" add from the 80's. I totally feel like my body is revolting against me. Why would anyone choose this for themselves? I can say I understand why people keep on them thought - cuz right now I don't feel normal, but taking more pills definitely would help and it has when I'm desperate enough to succumb to them. Don't worry, I'm not an addict, but I could see how someone could be if not careful.

I'm super thankful to have Adam and Josh here to help me through this odd time in my life; what would I do without them?

I'll be meeting with the doctors sometime this week, so we'll review all this with them then and formulate a plan. In the mean time I'll be on the couch . . .

Friday, July 3, 2009

The Anti-spazmatics Are Working

I know it's been a while since I've updated my blog. Call it the sun, call it my job, call it a cow on the road, but I just haven't done it for no particular reason at all and I'm sorry . . .

I can say that the pains have all but been controlled by a little sub-lingual pill (a pill that dissolves under my tongue). My doctor took my case before several 'congresses' across the country and Europe. They all recommended that he attempt one more endoscopy to try and open up my pancreatic duct. However, he asked me if I would be willing to try this 'one thing' first. He wanted to rule out smooth muscle spasms. I'll be honest, I don't like the pain, but I know that it's not going to kill me to be uncomfortable for a few more weeks. At this point it's been almost eight months. What's a few more weeks? Plus, I wouldn't have to miss more work, so what the heck -- I'm game!

My only concern was the term "smooth muscle relaxer." So I asked him, (and I quote) "Is it going to make me poop myself?"
Now, I've never seen this man crack a smile, I've always confused him too much, but you would have thought I was tickling his ribs.
He responded, "Umm, do you poop yourself now?"
My HONEST answer, "No."
He responded, "Then this shouldn't do that either. It's a smooth muscle relaxer not a sphincter relaxer!"

Well, I have to admit, it's my little miracle pill. When I take it now, within 2-minutes, the pain is gone! There is a more "permanent" solution: botox injections into my pancreas once a year. Although this seems like a viable solution, I'm going to discuss staying with the less invasive sub-lingual pill. I feel it may be a more prudent option since we don't really know why my pancreas is doing this.
If it ain't broke, don't fix it, right?

Saturday, February 14, 2009

Valentines Day

I decided today to do some things I have not been able to do for a while. For those of you close to me, you know I tend to over-do-it, but don't worry, I didn't; just ask Adam if you don't believe me. He kept a good watch over me! We went out to breakfast (at 11:30 am), played fetch with my dogs, then gave them a bath, and pruned back a few wild blackberry vines next to our pond. Adam just headed out to pick up a pizza (classic vegetarian, of course) and then we are going to watch a movie on TV.

I simply love doing the 'every day' stuff. It was especially nice to get off the couch! Slowly, I'm trying to move more and bend and twist in ways that I feared before. Although it's not nearly what I could do before I got sick, it was wonderful being outside being productive.

What a wonderful Valentines Day!!!

Thursday, February 12, 2009

My "Last" Visit (well, at least for a while)

I know it may seem like I have not been keeping everybody informed, but that's only because nothing has happened - and I mean nothing. I still have the pain, and only silence from the doctors and radiologists.

On Tuesday I finally got the call that they wanted to do another MRCP (a special type of MRI that traces the biliary system) with some type of contrast that the doctor's assistant said would make me 'violently ill'. Yea for me! Right after that scan I was to go to the surgeon's office and meet with him, the resident, and the GI specialist.

I am happy to say I didn't get 'violently ill,' instead I felt like I drank a lot of warm Root beer. You know the feeling: like it's shaken up in your tummy and you're afraid you're gonna puke it up, but somehow you keep it down? - well, that was the feeling. The bad part was that after they gave me the injection, they didn't turn the volume up on the headphones I was wearing to hear the tech so I didn't hold my breath at all during the scan like you are supposed to. Erhg. Good news, the scans came out clean, despite my lack of participation.

Once inside the doctors office, he said that they confirmed that my pancreas was draining, but not fully. The short reason: suspected pancreatitis (an inflammation of the pancrease). They have used all the best equipment, brought in all the brightest professionals and have boiled it down to this. If it is pancreatitis, it should calm down eventually, especially with out more tests that poke at and aggravate it, but it could take several more months. The other option is a pancreaticoduodenecotmy (surgery to remove part of the pancrease, duodenum, and do hook up more intestine to 're-plumb' the area.) This is also known as a "Whipple's operation." It's a 10-12 hour surgery, and in my case would be very complicated.

These were two extreme options on opposite sides of what would seem to be a very broad spectrum. One is to do nothing, the other to carve out more of my organs. I said to the surgeon, "Is there any grey area here? - any 'middle of the road' treatment?" Nope. It's one or the other.

I guess my expression said it all - let's go conservative. If I still feel this way in 6-12 months, we'll consider surgery. He agreed. In fact, he was concerned as this would be my sixth abdominal surgery in that area and that is not a good thing for anybody. Not me, and it wouldn't be all that easy for him either.

So the boil down is this: I just gotta deal with it and hope it goes away. After thousands and thousands of dollars we're not doing anything. At least not for now. (Is this good?? - yes, I think.)
In the meantime, I'll be trying to do normal activities up to my comfort level. Adam is bringing in the treadmill from the garage. Regardless of the plan, the doc said I have to loose 20-30 pounds to do anything predictable. Since movement is painful, I figure a slow easy walk indoors is probably the best way to get started. I'm already settling into my new vegetarian diet, so it's a good time to add something else.

Thank you for all your prayers. There is so much I'd like to type tonight, but let's be honest . . . you probably have other things to do. I will say that until recently, I had forgotten that the most important tool God gave my is my body, and well, I guess you could say I haven't been a good steward with that gift. Please pray that I will have the courage to get my strength back, and the dedication to keep my instrument well tuned.

Sunday, February 1, 2009

"Meatless Meatballs"

My mom always said, "If you can read, you can cook." Basically, following a recipe to it's every word should yield a fruitful return. My response to this: [I guess] I cannot read. I've tried two recipes in the last two days and have ruined both. However, I have also have been able to salvage both.

Today's challenge was the Meatless Meatballs. I thought it would be good as a Super Bowl snack and what the heck, a little barbecue sauce covers a lot of sins. Amie, Ralph and the kids came over early this afternoon and together, Amie and I used the botched concoction with the creativity of our combined cooking experiences, actually came up with something very good! Now, I'm not sure how the recipe was supposed to taste, but ours tasted pretty darn good! - and we didn't have to smother it in barbecue sauce. Even the kids liked it, so you know it's not a freakish food abomination.

I'm so proud I took a picture . . . yep that's them . . . at least that's what they looked like before I ate them! The moral of this story: Just because you can read does not mean you can cook, but two friends working together can overcome any obstacle!

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!