Home for the Holidays

Heather and I got to go to Alma for almost a week for the holidays.  It was a bit of a whirlwind.  People to see, food to eat, and plenty of fun to be had.  It was fantastic to spend time with loved ones.  As cliche as it sounds, being presented with this diagnosis has really changed my perspective on everything.

It's crazy the things that held value to me before, and are now pretty meaningless.  The seemingly meaningless things, that I took for granted, that mean a lot to me.  Here's a simple list of small things that make me feel alive in a way that I've never before felt:

Good conversation
Laughter
The way onions burn your eyes when you cut them
Clothes fresh out of the drier
The way winter fog makes the trees sparkle in the morning
The sun peaking out of the clouds on a winter day
The way Pizza Sam's tastes in the restaurant
The calm in the morning when you're the first one up (this happens a lot these days, need to ask if this is a side effect of the cancer drugs)
Talking to my my mom one on one
Snuggling with HB (I've always appreciated this one)
Seeing little kids open Christmas presents
Good home cooked food
Hugs (this is also something I've always appreciated)
An ice cold glass of whole milk

This is by far, not a complete list, as every day seems to bring a whole new list.

While I was in Alma, my brother, Doug, said that he had something for me from one of his co-workers.  I opened it up and found an amazing note, and this:

I almost broke down in tears in front of everyone at my Grandparent's house.  This was so thoughtful, and just what I needed.  It's now hanging next to my bed, so it's one of the last things I see at night, and one of the first in the morning.  If you're reading this, Judy, thank you so much for the inspiring words and sharing a little bit of your hope with me.

When HB and I got home, there was a package in the mail from someone, I'm not sure who.  It contained this T-Shirt:

Holy cow, this is AWESOME.  I will definitely be wearing to my oncology appointment in a few weeks.  Thank you secret Santa, whoever you are.

All in all, it was a great week, and thanks to everyone that I got to see, and also, and apology for those that I missed.  I'll let you know when I'm in town again.

Paracentesis

"A medical procedure involving needle drainage of fluid from a body cavity, most commonly the peritoneal cavity in the abdomen."


Here's the pictures I've been promising for a while.  I'll post them as links, so that if you want to see them, you can, and if you don't, please don't click the links.


The before picture: 
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0147.jpg


Numbing things up:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0152.jpg

Trying to force the tube in:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0155.jpg

Wouldn't work, so out comes the scalpel:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0156.jpg

It goes in a bit easier now:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0157.jpg

Pulling some fluid off for testing:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0158.jpg

The 1 Liter bottle has suction, and things start streaming out:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0159.jpg

Well, it's in:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0160.jpg

Just lay back and relax:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0161.jpg

Another attempt at a different pocket:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0163.jpg

Losing suction:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0164.jpg

About 700 mL when all is said and done:
http://i114.photobucket.com/albums/n253/splityourpants/Harry%20Seeword/IMAG0165.jpg

Alone with my thoughts

I'm going to be honest.  Monday was pretty rough.  It was the first day that I was alone, and it was really hard to not be up in my head all day.  Luckily, I had a lot of phone calls to make and forms to fill out.  This kind of helped to break up the time allowed in my head.  My head can be a scary place.  It seems to be filled with pitfalls and traps that slowly peck away at my optimism.  I could feel all of this down-time slowly eroding away at my confidence.

I called Fran Mott, who heads up the Michigan von Hippel-Lindau Family Alliance.  She's been a fantastic help with many things in the past few months.  I hadn't had time to call her with my diagnosis.  I filled her in, and she gave me a lot of hope, and restored much of my optimism.  There are some trials going on at U of M and the National Institute of Health for my cancer.  It's good to hear that, as my type of cancer is pretty damn rare.  Fran has been an amazing help through all of this, and I'm so thankful to have her willingness to help me.

Tuesday was also a little rough.  I had a bit if diarrhea, which is really frustrating.  Things were good all through the hospital and continued to be good through the weekend.  Luckily, it wasn't nearly as bad as it was before the hospital.  I finished up my Christmas shopping and it sapped me.  With things being normal, shopping normally kills me.  I hate the crowds, I hate the traffic, I hate walking around the store not knowing where to find something.  I was only gone a few hours, but I had to take a nap when I got home.  Luckily that is over, and I shouldn't need to do any more shopping until after the holidays.

This post has been pretty dark, but I do have bright shining spot to report.  My appetite was ravenous last night.  I made some pasta with turkey sausage and red sauce for dinner, and I ate like it was my last meal.  It was awesome.  Heather and I watched the new documentary on Joan Rivers.  If you haven't seen it, watch it, she's a fantastic comedienne.  It's called "Joan Rivers: A Piece of Work".

Today is going to be getting ready to head to Alma for Christmas.  I've got a busy day ahead of me, which is good for keeping optimistic.  Hopefully, we'll be driving to Alma tonight.  Sorry for the slightly dark post, hopefully this will be infrequent.

Home

I was discharged Friday night.  It's a fantastic feeling to know that you can go home.  Being couped up in a hospital for a week, especially when you feel OK for the most part, is pretty rough.  Heather had planned on staying at home another night, so when I got the news, I asked Dan McDonald if he wouldn't mind driving me home and hanging out with us.  He said yes, which was really awesome.

Dan and I met up with Amber in Ann Arbor, but moved to Ypsilanti for dinner, as the Ann Arbor dinner crowd is pretty rough on a Friday night at 7:30.  Ypsilanti was like a ghost town.  We went to a place called "Smokehouse Blues".  The rolls at this place are perhaps the best I've ever eaten.  I ate a steak, some mac and cheese, and some garlic mashed potatoes to celebrate my discharge.  Real food is hard to come by at UMHS.

We dropped Amber off at her boyfriend's gig and make the hour and a half trek back to Kalamazoo.  It was a drive with great conversation and a lot of laughs.  We made it home around 11:30, which is way past my bedtime.  I ate some cookies, took a shower, brushed my teeth, and then slept in bed like a baby.

We woke up this morning and watched some Anthony Bourdain before we drove to Dustin and Carrie's house to rendezvous for a dog walk and some breakfast.  Carrie had to work, so unfortunately, she couldn't come to breakfast with us.  We made our way to a little greasy spoon place called "The Cooper Cafe".  If you've never been, and are in the Kalamazoo area on a Saturday, you should go.  On Saturday mornings, a local bluegrass group, "The Lonesome Moonlight Trio" plays.  This, coupled with the hearty home cooking and friendly service makes for great food for your soul.  It made me so happy to be there with loved ones that I nearly broke into tears.

We did some looking around at a Goodwill afterwards.  The Goodwill was really busy, and the shoppers there were pretty rude.  We left, with Dustin purchasing a terrible looking VHS tape that we're going to watch  on New Year's Eve.

We went back to Dustin's and played some Tiger Woods on the Wii, which was a blast.  We all then headed for home.  Heather got a call from her realtor.  She wanted to show the house on Sunday.  The house was still fairly showing-ready, since we had cleaned up for one last Sunday when we went to the hospital, but due to snowy weather, they cancelled.  We said yes, and Heather and I relaxed the rest of the evening.

We got up Sunday morning, made some egg, bagel, and cheese sandwiches, and watched some Reno 911.  Heather and I started cleaning up the little bit, and had enough time to watch some Sarah Silverman Project before we had to leave for the showing.  We walked the dogs in downtown Battle Creek, and made our way to Meijer to pick up some groceries.

When we got back home, we got a phone call from the realtor.  The people loved the house.  They are going to get pre-approval from the bank, and after the holidays they are going to put an offer in on the house!  This is the best news we've had in a long time.  We are definitely excited, especially Heather, who has had the house on the market for a few years now.  We spent the rest of the night cuddling and watching stuff on Netflix, trying to recuperate from the previous week.

Today is my Dad's 60th birthday!  Happy Birthday, Dad!  I'm going to give him a call later.  After that, today I need to finish some Christmas shopping.  Going to the store always wears me out, though, even before the cancer.

I'm still feeling pretty good.  My appetite is pretty ravenous now that the fluid is gone.  My BM's are improving every day, and I still don't have any pain.  The catfish are doing their job.  They have big mouths, that stretch out into a permanent smile, and their whiskers are long and thick.  They seem to be happy with their job, which is good for me, I guess.

I've got some pictures of the fluid draining, that I could post, but some may find them disturbing.  Is that something you would like to see?  Maybe if most say no, I could just send them to the ones that want to see them.  Let me know.

My last day at the hospital

Friday morning was pretty fantastic.  I woke up with no Seymour Butts complaining, my nurse didn't forget to bring me some coffee that I'd asked for, and I didn't have to wake up to give blood for more testing.  I watched some news, and poopsocked (played World of Warcraft) for a little bit before my shower.  The nurses had told me that I would be going down to get some more fluid drained from my abdomen, but there wasn't a specific time for the procedure in the computer.  I hung out some more, and Rocky dropped by with some cookies and to pick up his laptop.  I went out to the parking garage (with the nurse's permission) to meet Rocky and walk him back to my room.  While I was out, the transporters stopped by to pick me up for the paracentesis (fluid draining).  Damn.  Also, Uncle Tony showed up in my room.

I missed the transport, but they came back about a half hour later.  I rode the gurney to the interventional radiology section and waited for the procedure to begin.  While waiting, like I had done the at the previous day's testing, I visualized the catfish on my liver and kidneys, gently sucking away the bad cells.  I was called in to the room where the procedure was taking place and met the physician's assistants that were doing my procedure.  Like the rest of the people who did tests during the week, they asked about my tattoos, and then we got into discussions about various topics about food.

The procedure was over fast!  They had pulled another 1.5 Liters of fluid from my abdomen in the amount of time that it had taken the doctor in my room to the equipment set up.  I feel so much better.  All-in-all, they pulled around 2.25 Liters, which they think would be about 10 pounds of fluid.

I got back to my room and hung out with Uncle Tony for a bit longer.  He said that it was a marked difference  in the appearance of my abdomen.  I ate and ate and ate.  I could finally eat more, I could finally breath better, I finally didn't feel like a balloon in the Macy's Thanksgiving Day Parade.  It was awesome.

Uncle Tony left, and I watched some documentaries on netflix.  Lizze stopped by my room for a little bit and we talked about a lot of stuff.  We made plans to hang out with Nell on Saturday, if I were still there.  Lizzie had to get back to work, so I saw her off, and continued with the documentaries.

Dr. Dawit and his attending doctor came to visit and let me know that I would be getting my first injection that night.  I was really excited about that.  I want to get this under way, and start fighting this abomination in my belly.  They left, and the urology team came in to talk to me.  They said that they want to biopsy my kidney, but they would do it outpatient and in a few weeks.  They said that my right kidney appeared to have renal cell carcinoma, but they want to make sure.  I guess some complex cysts can look like the cancer.  If it ends up being the carcinoma, they'll want to look at removing my right kidney at some point down the line.  Slightly distressing news, but one thing at a time.

I went and walked around for a bit, and somehow wound up in the chapel.  I just sat there trying to take the whole week in.  It's been surreal for sure.  I knew that something was up, I just didn't begin to imagine how serious it all was.  Luckily, they have a treatment plan in place, and I have the support of all of you and then some.

I got a call from the doctor on my floor, letting me know that I could be discharged that night if I wanted.  I jumped on the opportunity to go home.  I went back up to my room, where the Octreotide was waiting.  I don't really flinch at needles, and very rarely do I find them to be really painful.  This was different.  This needle was huge, and went into my hip.  It made me say "fuck" a little more loudly than I would have liked.  My hip is a bit sore today, and I guess it will be like that for a few more days.  A small price if it makes me better.

That's yesterday, I'll work on another post about today and post it tonight.  Thanks again everyone.  I love you all, and your support means the world to me.

A little update

Yesterday was crazy.  I wasn't in my room for more than a half hour at any given point yesterday until after 9 pm.  It was pretty exhausting.  An ultrasound to find more fluid, a bone scan, an echo cardiogram, and an MRI.  The worst was the MRI.  I thought I was finally done for the night and was taking a little snooze after dinner.  I was awakened by a strange man standing over my bed asking me if I was ready to go.  I got whisked away to get the MRI, and was in the machine about 10 minutes later.  If you've never had an MRI done before, it sounds like the worst techno music ever.  They give you earplugs and place large foam pads over your ears to dampen sound, but it's still loud as hell.  Not a good way to wake up.  It's done now, and that's good.

I started another urinalysis last night, this time sans acid.  They are just checking to make sure that my kidneys are functioning properly, which they seem to be.  No pain, no blood where it shouldn't be, no frequent urination. I love having a forum where I can talk about gross stuff, but it's ok to talk about gross stuff.

I should be getting my first injection today.  I'm really excited to get things under way and start beating this thing.  I'm also getting more fluid removed from my abdomen.  They expect to get another couple of liters of fluid out.  I'll keep you all updated, but barring anything crazy happening, I should be out tonight or tomorrow.  Hooray for a real bed and real food.

The whirlwind morning

So, it's only 9 am, and I've already had an ultrasound and been injected with a radioactive dye for the bone scan.  The scan comes at 1 pm today.  I spent about 20 minutes in a room by myself in the basement, waiting for the pharmacy to get the dye to me.  I spent that time meditating, visualizing catfish swimming over my organs, eating the bad cells, and pooping out healing cells.  This was recommended by Heather, who has a book I'm going to read about visualizing the bad cells getting destroyed.  Heather told me about a guy who didn't like the visualization of sharks eating the cells, because he was afraid of sharks and thought it was too violent.  He liked to visualize catfish, because the feed off the bad stuff in the bottom of lakes and rivers.  That seems like a great analogy, so that's what I'm going to use.  It's also really peaceful and calming to visualize the fish, sort of like staring at a fish tank.

Just had my picc line changed.  Apparently they can't stay in for more than 4 days.  Unfortunately, I have wiggly veins, so after being poked about 8 times, she decided to move to another spot.  Human pin-cushion.  Breakfast awaits.  More later.

Harry Seeward

Neuro-endocrine tumor.  That's what it's called, and that's what I will soon defeat.  It originated in the tail of my pancreas, where it then metastasized into my liver.  These tumors thrive by secreting hormones, which feed the tumor on the local level.  Luckily, the hormones don't really get past the blood-brain barrier.  My tumors secrete some sort of peptide (I'll get the exact name tomorrow) and serotonin. 

Dr. Dawit broke the news to us.  He's an older Indian guy, with a perpetual smile, and a positive, yet cautious attitude.  He's a straight shooter, and I really appreciate that.  I don't want anything glossed over or candy-coated.  I need to know what I'm up against, and how to fight.  Speaking of which, this is how it works.  I will be getting a monthly injection that blocks those hormones from being taken in by the tumors.  If this works as planned, the tumor will simply starve away.  Without those specific hormones, it won't be able to eat, or grow, or spread.  Also, the secretion of these hormones are what caused my symptoms in the first place.  So, that should also clear up the diarrhea.  (woo!) 

Urology met with me earlier in the day.  They are looking at my kidneys.  Renal cysts are some of the most common symptoms for VHL, so they are hoping that the spots they found on my kidneys are nothing more than that, and that they are not a by-product of the pancreatic stuff.  They are going to do another CT scan tomorrow, this time scanning first without a contrast, and then with the contrast.  I will also be getting an MRI tomorrow, I think just of my brain (just to be sure), and a bone scan to cover our bases and make sure that nothing has spread there either.  Nothing is pointing that way in any of my labs, they just want to make sure.

Today they removed 700mL of fluid from my abdomen.  They were expecting to get between 2 and 3 liters, but the pocket must have shifted.  This was maybe the coolest thing I've ever seen done to me.  Pretty much, they numbed the area, and then made a tiny slit with the scalpel, and then shoved a straw into my abdomen.  This straw was attached to a long tube and needle, that was poked into a 1 liter glass vacuum bottle.  Just like tapping a keg, the liquid just sort of sprayed out into the bottle.  It was fantastic.  The color was a bit like this: http://www.youtube.com/watch?v=AeyqS9BDPds  

Also, my neighbor, cut off some sort of drainage tube into his abdomen today.  By cut off, I mean, he went into the bathroom and cut the tube coming out of his body.  The doctor came in and told him that he was lucky he didn't cut any more since it would then require surgery to remove.  It's been a blast.  This was happening while my doctor was pushing the straw into my abdomen, which caused me to laugh.  Laughing is not the optimal thing to be doing while a straw is being inserted into your abdomen. 

Tomorrow I get more fluid drained, while they use an ultrasound machine to locate it.  This will hopefully ensure full removal.  Tomorrow is going to be busy, so Heather went back to K-zoo, which I am glad for.  This has been pretty tough for both of us, so I'm glad she'll be back with the dogs and her brother and sister-in-law.  They are tremendous people and will take great care of her.  With any luck I might be out this weekend, but the safe bet is more like Monday or Tuesday I'm guessing.  I'll keep you all updated with more tomorrow.

Seymour Butts and Yesterday's Frustration

We were relatively lucky to have this two person room to ourselves.  Mr. Seymour arrived Monday night.  He's an older guy who's been through some pretty rough stuff.  A heart transplant, kidney cancer, and now a kidney transplant.  He seems to be doing fantastic, which gives me a lot of hope.

Mr. Seymour is a jovial guy who doesn't complain a lot, and for the most part is the ideal roommate.  He has some guests, but for the most part he just watches Animal Planet because it reminds him of his German Shepherd at home.  He has been unable to eat or drink for the last few days, which has made Mr. Seymour a little naughtier as time goes on.

Mr. Seymour started out by refusing things.  Simple things, at first, like a blood thinner (which they try to give to everyone, and I refused it), and putting on his edema socks.  Then he started trying to bribe nurses, staff, and me to get him some candy bars.  Last night, things started getting worse.  In the middle of the night Mr. Seymour pulled out his IV and all of the tubes and plugs (luckily for him, everything but his catheter), stripped his clothes off, and sat in a chair naked waiting to get "gussied up."

This event made sleep all but impossible last night.  The RN came in a scolded him.  Mr Seymour was out of it.  He was really disoriented, and couldn't remember where he was, or what he was doing.  It was pretty sad to see.  The poor guy just really wants to go home now.  I hope he can soon.

Yesterday was pretty annoying.  The oncology team was supposed to be in to see me around 2 p.m.  We weren't supposed to leave the room, but we were allowed to leave the hospital on a 4 hour pass after we did see them.  Eventually, it was 9 p.m., it was too late to use the pass, but we finally just had to get out of here.  The nurse (that's a whole other can of worms) paged the Doctor for the floor, who tried to page Oncology, but they never got back with us.  We got out of the room, and walked down to the cafeteria for a bit.  We ate a delicious warm chocolate chip cookie, and I got a cup of real coffee.  Then we went across the street so I could have a cigarette.  It was just nice to get the hell out of the room for a bit.

PS: Heather ate both chocolate, and a cute animal yesterday.  ("Out of desperation!")  The latter of which, she actually liked.  :)  Maybe someday we'll work up to bacon.

The Juice will soon be loose

I went in for an ultrasound today, to see if they could remove some of the fluid build-up from my liver not being in tip-top shape.  Another cool procedure, with amazing staff.  The guy who transported me, named Ahzim, was telling me a story about playing Connect Four with someone who tried to cheat him by saying he only needed to connect three.  So Ahzim and I have decided that dumb people will now be referred to simply as "Connect Three". 

The ultrasound revealed what appears to be a 6 or so centimeter pocket of fluid towards the bottom of my abdomen.  Finally I have an excuse for the bottom of my belly to hang out of a shirt.  I will fight you if you say otherwise, and either way you lose.  You lose because you got beat by a guy with cancer, or you lose because you beat a guy with cancer.  I have the card now, I might as well play it.

The best part about this procedure was seeing what my layers of skin, fat, and muscle look like on my belly.  It looks exactly like bacon.  It looked delicious.  I'm excited to not be so distended down there, when they insert another 6 inch needle in my stomach to extract the fluid tomorrow.  I should do before and after pictures.  The other hopeful thing, is that with the fluid gone, I will have more of an appetite.  We'll see.

This afternoon, the oncology team is coming to see me, and then I've been granted a 4 hour pass to leave the hospital!  I get to go out into the 10 degree temperatures that are afflicting Ann Arbor today.  More as I learn it!

A few things from yesterday

I realized after I posted last night that I forgot to tell you all about some other events in the day.  The first thing that happened was that I got a visit from Dr. Ginsburg, who is my geneticist.  He hasn't officially been consulted on the case yet, but will be, and has been in contact with Heather and I for the last few months.  He came in just to see how I was doing and let me know that he was following up with me.  He used the phrase "this wouldn't have happened in any other civilized country" about 15 times.  He is super pissed that I couldn't get preventative care and is unhappy that I'm in the boat that I'm in now.  He said that once they figured out what type of cells they are dealing with, they would bring in an oncology team that specializes in that type of cell, in that particular organ.  He said that he would be back around and would be working with whatever oncology team would be heading up my case. Dr. Ginsburg is a super nice guy and I'm glad that he's taken care of my family for so long.

A little later, I was visited by the nutritionist who got to tell me some pretty exciting news.  I have been placed on a high-calorie, high-fat diet!  She literally said, "Basically, eat anything that a normal person shouldn't eat, and eat a lot of it."  HELL YES.  Free license to eat as much butter, bacon, and other assorted animal parts as I want.  I took full license with that this morning when I ordered bacon and sausage for breakfast.  I would have ordered ham too, but they limit your entree selection to two items. 

I was visited by the tobacco consultation services people next.  They hooked me up with some nicotine gum, which doesn't really do anything.  The only cessation device I've ever used before was a patch, which was far too much nicotine.  The patch caused me to start sweating profusely and feel dizzy.  I immediately took it off.  The gum just tastes weird.  I think regular gum would work just as well.  I'm down to only a few cigarettes a day anyway, so it hasn't been that big of a deal.  I didn't actually have one at all yesterday.  I did get the approval of my nurses to go have one if I wanted to.  ("Just don't get hit by a car when you cross the street.")  Thanks to Rocky for picking me up some cigarettes.

I was visited by a fellow from the oncology department, who didn't really have much to say, just asked a bunch of questions and poked around my belly.  I apparently just missed him and the supervising oncology doctor when I was taken for my biopsy, but I hear that they'll be back today.



Today is probably going to be a quiet day.  No more procedures scheduled, at least until the biopsy results come back.  Apparently my belly is full of fluid from the liver not working as well as it is supposed to.  They may drain it tomorrow, which would be kind of awesome.  I may get a pass to leave the hospital for a little while today, which would definitely help with the cabin fever I've developed.  The doctor is going to find out when oncology is coming and consult the social worker about a pass and we'll go from there. 

Rocky lent me his laptop so that I could play some WoW, but the hospital has blocked access.  I'm going to try a work around with a proxy a little later.  I don't understand why they would block that, when their player base is mainly nerds who would be able to figure out a work around. 

I'll keep you all posted if I learn anything new today, but I think it's going to be pretty quiet.

Biopsy Day

Well, today was the day for the biopsy.  It was maybe the coolest procedure that I've ever had done.  If you're not familiar with a biopsy it's used to sample suspect tissue and determine what type of cells are present.  The procedure that I had was really cool.  In order to biopsy the liver, the sample needs to taken using guided imagery.  The liver is full of blood vessels, so there's a risk of internal bleeding with any biopsy there.

The doctor uses an ultrasound machine to find an appropriate spot to sample.  That process took about 20 or 30 minutes, and what seemed to be nearly a bucket of lubricating jelly.  Once they found the location, they marked the spots using a permanent marker and started prepping me.  They swabbed my belly with an antibacterial swab, and placed some clothes around the area.  The Doctor noted that I probably didn't need all of the phentinol since I was so relaxed, so they only gave me a quarter of the normal dose. I missed out on the full effects of "Hillbilly Heroin", but that's alright by me.  I've not really been one for losing my head.

The phentinol made my head feel a little heavier, and my body feel a little warmer.  I also didn't mind when they shoved a 6 inch needle into my belly to deliver the local anesthetic.  They then numbed the skin surface with another much shorter needle.  At this point, I feel pretty good.  I can't feel a large patch of my stomach, and I feel warm.  The Doctors then started scrubbing and prepping the instruments.

They placed a little guide on the side of the ultrasound probe.  When they found the spot that they had marked, they then inserted a 6-8 inch metal sleeve through the guide, and into my liver.  They then inserted a device into this straw in my belly.  When they got to the appropriate spot, they pushed a button, which deploys a tiny set of jaws to bite off a piece of my liver.  They pulled this out, set the sample aside, and moved on to a new spot.  This process was repeated a few more times, and then perhaps the coolest part of this experience happened.

When they pulled the straw out, I watched the skin tee-pee around it as they pulled it out.  It was pretty cool to be able to see something, that I recognize as something that should hurt, but I didn't feel a thing.  Or maybe it was the quarter dose of phentinol.

I'm on forced bed rest the rest of the night.  They don't want me to move the wrong way, and start bleeding from my liver.  And now that I reflect on it, I don't really want that either.

Oh, the worst part of this, is that I was unable to eat or drink anything, they call it NPO.  So no food or drink from 10 last night until after the procedure, around 7 pm.  Luckily, Ulla, Kara and Dan brought some fantastic goodies from Zingerman's that I devoured.  The appetite was back tonight.  I then ate the hospital tray they brought me.  Last check, my blood sugar was 220, which is pretty high, but they said that it was alright since I had just pigged out.


Tomorrow is going to be a lot of waiting around.  I'm super anxious to find out these biopsy results and get a plan of attack under way.  Thanks for your visits, phone calls, and kind words.  It's been hard to not get overwhelmed by the amount of support that Heather and I have received, and we sure appreciate it.  Every time we get a new message or phone call we ending up crying because we are so thankful to have all of you in our lives.  From both of us, thank you so much for being so great.  I'll update more tomorrow, and we've been taking some pictures that I'll post.  For now, it's time to sleep.

The Jug

The luckiest dude ever

I may have a mass, but I am seriously one of the luckiest dudes ever.  You all have been fantastic in your support. Thanks so much.  Dan McDonald, Rocky and Keagan, and Jake Hyde, Brian Badge, and Ryan Wheeler all came and visited me tonight.  It was fantastic to see everyone, and have a group of people here to keep my mind off from everything.  Jake, Ryan, and Brian drove all the way from Alma in this blizzard to get here.  I have also been blessed with some of the greatest nursing staff I have ever experienced.  My newest nurse is a guy name Jaime (pronounced "Hi-Me").  He gave it to me straight, which is all I can ask.  I am a bit more hopeful, in a cautious way.  He gave me my record from my stay, and answered all of our questions in a very direct way.  I love this guy, and I am going to make him a card to express my thanks.  More on the cautious optimism and details in the morning, as I've only had a few hours sleep since we  got here.  I love you all.

It may get a little messy

The best place to start is at the beginning.  In April 2010 I came down with a vicious case of diarrhea.  (I told you it may get messy.)  I chalked this up to some bad crazy bread from Little Caesar's pizza the night before.  I took a day off from work, slept and kept hydrated.  Things were not better the next day, but I knew from my food sanitation courses in school that these things can last several weeks, if they really get a good hold on you.  I went back to work, and thought nothing more of it

Let's skip ahead to Thanksgiving.  I've lost 65 pounds.  I'm fatigued by general chores around the house, and the diarrhea is still around.  Despite losing so much weight I still have a rather rotund and "pregnant" looking belly.  My Uncle Tony is studying to be a Physician's Assistant, and is currently a nurse, so I asked him if he'd take a look at things.  He was very concerned about these firm spots in my abdomen.  He tells me that I need to get to an ER, and soon.

On top of all of this news and concern, I have the added bonus of being one of the millions of uninsured people in this fine country.  (I promise I won't get too preachy.)  I start applying for an M-Support grant at the University of Michigan hospital.  I have a genetic disease called von Hippel Lindau Syndrome that has been treated there in the past.  I figure this may be the disease rearing its ugly head, so U of M would be the best place to start.  I get the paperwork in, and as I write this, it is under review by the board that decides if I can get some sort of coverage.

Last night, December 11th, Heather and I drive to Ann Arbor to be seen in U of M's emergency room.  Even though I love hockey, I totally forget that today is the day of the big game between U of M and MSU, outdoors in the Big House.  The game apparently shattered the previous attendance records spectators at a hockey game.  There were various drunk people in the ER, unable to open their eyes, and reeking of vomit and alcohol.  It was pretty spectacular.

I get in a room, and they leave me there for a while.  The doctor orders a CT Scan.  I drink a barium shake that tastes a bit like berry flavored antacids.  Not pleasant by any means, but not terrible either.  They then walk me over (note: this is the last time I've been allowed to walk anywhere) to radiology.  The technician repeatedly warns me that the contrast they will be putting through my IV may make me feel like I've peed my pants.  She said this at least 5 times in a two minute span.  Sadly, this never happened.

We wait for another few hours for a diagnosis.  The doctor comes in and shows us the CT scan.  This thing is impressive.  Impressive in a scary huge way.  It seems that my entire abdomen is filled with this beast that wraps around anything and everything.  No wonder I've not been able to eat- this thing leaves no room for food.

The doctor orders a catecholamine test.  If you're not familiar with this, it's a 24 hour urine scan.  They hand you a red jug and order to pee in it for the next 24 hours.  The jug is labeled with all sorts of warnings about the contents containing hydrochloric acid.  I thought I was literally supposed to pee into a jug full of acid.  Fortunately, they bring me a little plastic hospital urinal to pee into and then dump into the acid jug.  The other super awesome thing about this test is that the acid somehow makes the urine smell really terrible.  Imagine rotting meat, asparagus pee, and some hobo farts mixed together, and that's what it is like to open that jug.  Every time I have to pee.

Today (12-12-10) has been fairly crazy.  I've had to call my Parents and Grandparents.  Those are probably some of the hardest calls I've ever had to make.  I called my brother (who has the same disease) and told him.  I think that was by far the toughest phone call I've made.  (Doug, if you're reading this, get your VHL checked NOW!)  I've been poked 6-7 times for various blood tests.  I've have my IV site moved to the other arm (thankfully), but this afternoon has been a lot of hurry up and wait.

Tomorrow I get to have a biopsy on my liver and kidney.  They told me I get some really awesome drugs that will make me not remember anything, which I'm kind of looking forward to.

I'll update this again tomorrow.  For now, I'm going to try and escape from this with some help of Netflix, and some crazy friends who have decided to drive in this blizzard.  Thanks guys.

PS: The title refers to a joke between a few friends.  One of them really like the game "Mass Effect".  As a jerk, we used to say "More like Ass Effect".  I figured that since this whole ordeal started with my ass, it might be a good title.