Updates, since Florida...

So we returned to Albion on Saturday the 22nd.

From there, it went downhill.

On the 23rd, I didn't go to church, and stayed home.  My stomach was distended, and when Brian came over, he basically made me go to the ER.

Upon arriving, long story short, they drained 11 liters from my belly.  It felt great, I have to say!

The oncologist on call (Doctor Bushnow, who works closely with my main oncologist) said he had talked with Dr. Smith,  and the next step was to try a different regimen.  After looking at my most recent scan, they shared with us that the tumors have not shrunk.  So we are trying a new regimen, basically replacing one chemo drug (Oxaliplatin) with another (Irinotecan).  This started Wednesday.  That ran time-wise as usual, except the side effects are much different - instead of cold sensations, I get hot flashes!

So that ran through Friday.  When I was in the office Wednesday, they gave me a Fentanyl patch to try to moderate the pain better, instead of Dilautid all the time.  By the time Friday rolled around, Lisa was afraid I was dehydrated, and she said I was acting funny.  SO...back to ER, via her dad.

We got here,  they did bloodwork, and an ammonia test in the ER, and it was very high.  I got a room right away.  They wanted to do a slow drip IV, to keep me hydrated and also wanted me to take lactulose (a synthetic sugar used to treat constipation - it worked really well).  However, I became  altered, and was getting confused.   Eventually, they wanted an MRI. They wanted me to take Atavan, a sedative, to keep me still, as I was being a little weird.

How I felt on Atavan...

(story break here)
Dilautid, in small amounts, can cause hallucinations.  When they administer it via IV, it works quicker, but that means my body actually burns through it faster.  The Fentanyl, must have just been reaching peak strength at the time that they gave the Atavan.  While on the Atavan, they put me in the tube for the MRI.   Apparently it didn't do what they wanted - I remember thinking I was in some video game, crossed between Total Recall and Caddyshack.  But I was in the MRI tube. Lisa said I moved a lot in the tube, because I was trying to take my helmet off!  I was doing things way beyond my "normal." That's "the funny" part of story.
(end story break)

They brought me back to the room, where I had a few hours.  At this time I had a ton of guests, and it was nice to see them.

Eventaully, they ordered a CAT scan, just to make there was nothing going on in my brain (uneventful - it took five minutes).  I personally think was just a trifecta of medicines that made me act that way.  I had a few more visitors that evening, who brought comfort just by being here.

It is now Sunday morning, and I am sitting in a hospital bed, waiting to see what happens today.  We expect to hear from the doctor about the CAT scan,  and possibly more draining of my abdomen.  Would like to be discharged today, in the world of medicine, I have learned that can change easily!

Many have asked what they can do for us.  A big thing is to just visit with us.  Whether it's in the hospital or when we get back home.  Once spring hits, there will be outside work to do - cleaning up branches, mowing the lawn, etc.

At any rate, waiting is the name of the game right now.  I miss being at church, and home.  It would be nice to see either right now.

God, give me patience.  God, thank you for putting people in my life who can help me make informed decisions.  Thank you for the friends who come see me, and boost me up.  Thank you God, for everything.

I will keep you updated soon.

Florida (actually, not Florida) Day 8

Saturday, February 22.  The last leg of the trip.

It was pretty uneventful, despite some pain I had been having.  We traveled from Tennessee to Albion, leaving at 7:45am and pulling into our driveway at 8pm.

We decided to return the rental that night, because I didn't want to get charged for another day.  So we did a quick unload of the car, returned the car to the airport, and were back home by 10.

After uploading 1 picture, I went to bed, dreaming about our time in Florida.

Thank you God, for blessing us with a wonderful trip, and a wonderful family of friends.

Florida, Day 7 (or, "Family is more than blood...")

February 21, Day 6.  Today was the day for us to hang out at the house, and enjoy the company of friends.  Except our friends have become very much like family to us.

We started out the day sleeping in - Magic Kingdom was exhausting.  After getting up and doing some preliminary packing, we ate a delicious quiche for breakfast made on the spot by Brian.  After that, Lisa and I went for a walk around the neighborhood, and enjoyed some quiet time together while Adam hung with the Kriegers.

The rest of the day was pretty laid back.  Adam swam (and wrestled) with the Kriegers in the pool, then the Kriegers went and played tennis, while the Burlisons hung by the pool, relaxing outside, reading and playing games.  For lunch, we had leftovers, and continued to hang by the pool.

I took an afternoon nap, a rarity for me.  Eventually we ate a family dinner - grilled chicken, baked (on the grill) potatoes, sliced tomatoes with mayo, grilled onions with sour cream, watermelon, bread, cheesecake and assorted "leftover" treats.  It brought back lots of memories of eating dinner outside in the summer, having a meal that dad prepared all on the grill.  And we did it with our family of friends.

After dinner, Adam and Jon played Wii games, while Brian and I went and gassed up the vehicles and grabbed some drinks for the road trip back, and the ladies cleaned up the dinner stuff.  When we got back we all did some loading of the cars, as we plan to be out by 8am.

While it wasn't a planned day, it was quite possibly one of the best days here.  We will definitely miss our home away from home, but I will also enjoy tomorrow, as we will be stopping in Tennessee to visit my step-mother, where we will stay the night before heading back to the land of ice and snow!

So, off to bed, after another bath, and tomorrow will come all too quickly.

Florida Day 6 (or "A Day in the Magic Kingdom")

February 19, 2014 - Day 6.  After doing our morning routine, we set off for the busiest and most active day of our trip - our day at the Magic Kingdom Park of Walt Disney World.  And what a day it was.

Getting to the park was no problem, and we got to the parking lots at about 10:30.  From there we took the tram to the ticketing booth, paid our admission (about $300 for 1 park...ouch, but worth it), and then boarded the monorail to the actual park entrance.  As much as I hate waiting in lines, our line experience throughout the day was actually not bad.

Except when we first got into the park.  After "signing up" for a role playing game that happens throughout the park (more on that in a minute), and getting Mickey Mouse ice cream bars, we moved on into the park.  Disney has a "FastPass" program, which allows every guest to pick three rides or attractions that they can choose to bypass the regular line, and get into the attraction sooner.  The first kiosk we got to in order to select ours had about 200 people in it, all being helped by employees, and the line was m o v i n g. . . s o . . .s l o w. . .  Until another employee...sorry, cast member, told us there was another line close, near the Jungle Cruise, that usually had less people and moved faster.  So we quickly walked to it, and were done within 10 minutes!  Thank you, random cast member!

So we picked our 3 FastPass attractions (Jungle Cruise, It's A Small World, and Haunted Mansion), and began the role playing game (called Sorcerers of the Magic Kingdom).  The plot is that Hades (from Hercules) has enlisted other Disney villains to collect (steal) pieces of Merlin's (from The Sword in the Stone) magic crystal so he can control the Magic Kingdom.  At the start you recieve a Portal Key card, several spell cards, and a map.  Throughout the park are portals, where you scan your key card, watch a scene, and either cast spells with your cards to defeat a villain, or recieve information on where to go next to catch the villain.  In between our rides, we would travel from portal to portal, sometimes from kingdom to kingdom (i.e. Frontierland to Fantasyland), tracking down the villains and defeating them.  There were 9 villains, of which we defeated 5.  It was Adam's absolute favorite part of our day at Magic Kingdom.

We also went on some of the more classic Disney attractions: The Enchanted Tiki Room, The Carousel of Progress, and the Pirates of the Caribbean.  We also caught parts of a Pirates skit/show outside the ride (the Captain Jack Sparrow actor was spot on...), a Mickey Mouse Dreams show on the steps of the Cinderella Castle, and a "live" Monsters Inc. comedy show.  This was especially neat, because all of the characters were animated, but voiced by live people, because the show was interactive - the characters responded to the audience comments, and the animation moved along with their voices.  It was very neat!

Of course, we also ate in the park (ice cream, slushies, frozen orangeade, popcorn) and ate lunch in Liberty Square - I had fried chicken breast nuggets, fried fish, and clam chowder.  Needless to say, I was full, and unfortunately for the next few hours, that put pressure on my liver and back, which is highly uncomfortable, and increases my pain level a bit.  But it was bearable, especially when I got to watch my family have good time, and watch my son enjoy a magical time.  I survived, and it got a little better by the time dinner time rolled around.  Not that I ate dinner, as we were busy searching for portals.  We watched the electric light parade, and then moved to the shops to pick up some souvenirs (Mickey ears and a Sorcerers binder for Adam, and a picture frame for the family).  Then we attempted to move into the least crowded spot we could find to watch the fireworks, which were great (the theme was all about wishes).  After that we headed out of the park (monorail, tram, parking lot) and "home."

Once we got home, about 9:30, we had the house to ourselves (the Kriegers were enjoying Downtown Disney), and I did something I haven't done in years...I took a bath.  (Hah...that sounds like I never wash...). I took a nice and hot, relaxing, wash away the grime, muscle loosening, end of the day bath.  Every ache, every pain, every worry, every ounce of stress, melted away as I stepped into the tub and sank in up to my chin (it's a BIG bathtub...).  I stayed in for about half an hour, then got out and started to settle in for bed.  I stayed up a little, editing a few of the last 2 days of pictures, and was practically falling asleep at the kitchen "bar."

Needless to say, once I hopped into bed, sleep was almost instantaneous.  I didn't hear the Kriegers return, and actually slept until 7am - about 2 hours past when I normally wake up, even after busy days or long nights.  It was an awesome, joyful day with my family.  I would do it all again, pain, crowds, and all, just to give my family a memorable experience.

Thank you God for the gifts and provisions you have given me and my family.  Wonderful friends; protection during travel; patience in frustrating situations; funds to make this trip possible.  Thank you God for creating this wonderful Earth, and the beauty which can be seen everywhere, whether in snow and ice, or sunny days and cool breezes.  Lord, you have already given me more riches than I could ever desire.  I want you to use me to your will; but I ask, as your son did, that if it is your will, take this cup and this burden from me, Father; but it is not my will that matters Lord, it is yours.  My own trials are nothing compared to the sacrifice of your Son; I will bear this cup as you see fit, and use my own gifts and talents to bring people to you Lord.  Just guide me, and I will follow.  Amen.

Florida day 5 (or "Old Friends, New Places")

February 18th, Day 5 of our Florida vacation.  We started out by taking our morning very easy.  We took our time getting ready for the day, and it was nice.

We left the house at about 9:30 or 10, heading for Downtown Disney, a free area of the Disney World experience.  There are shops, restaurants, entertainment, and a nice waterfront.  I didn't plan on spending a lot of time there, but we ended up spending over two hours there, after arriving at about 10:30.  We walked the whole area, stopping in shops as we saw fit.  We bought a few items (I got a very cool tea infuser, inspired by Kevin Eccles tea mug), and had a snack, as we were planning on having lunch later, at a seafood joint in Cocoa Beach.  There was a High School band playing at 12:15 on the stage, and on our way back out of the Downtown area, we stopped and listened for a few minutes.  Slated to go on later in there day were two groups from Jamestown, NY!  As much as it would have been nice to wait around and listen, it was hours after, so we moved on and made our way to Cocoa Beach.

On the way to Cocoa Beach we had to take a toll road (it was either that or add about 50 minutes to the trip - and we were hungry....).  It cost about 5 dollars to go 40 miles.  If you are reading this and live in NY, be thankful - that same 5 dollars can get me from Syracuse to Fredonia.  It felt like (literally) highway robbery!  (And of course, we had the same tolls, but some how they were actually higher, going back west....?)

Once we got to Cocoa Beach, we went to a seafood place I had found online, choosing it mainly by its good reviews, and the fact that they definitely offered kid-friendly items, according their website menu.  It was called Jazzy's Mainely Lobster and Seafood.  I admit, I also picked it because of the name!  Lisa and I had pretty much the same meal - sautéed shrimp (she got shrimp and scallops), fried green tomatoes (wicked awesome), New England Clam Chowder (again, wicked awesome - there were pieces of clam the size of half dollars; not like any canned soup, or even restaurant soup I'd ever had), and coleslaw.  Adam had Kraft Mac and Cheese, and French fries.  But he did try a fried green tomato (he liked it!), and he also got an ice cream sandwich with his meal.  Lisa and I agreed that it was quite possibly the best seafood we've had in a while, and the best meal we've had down here yet!  We ate outside ( again, in February!) at a picnic table, and enjoyed the atmosphere and family time together.

After lunch we headed to the beach, after scoring the last free parking spot at Ron Jon Surf Shop (yesssss!).  At the beach, Adam made sand castles, collected shells and sand to show his friends and teachers, and waded in the water a bit.  The Atlantic was pretty chilly, but the beach was soooo nice - soft sand, and not too crowded for being a popular area.  I helped Adam with his sand castle, took lots of pictures, and enjoyed watching people taking surfing lessons.  Funny to watch some of them, but very cool to see them when they were able to get up and ride the waves!

After the beach, we headed back west about 25 minutes to Cocoa (not the beach), where we were to meet up with an old high school (girl)friend, who over the years we had become good friends, leaving behind all the high school drama.  I got to meet her husband and family, and catch up on everything that has happened over the last 15 years.  They cooked a wonderful meal (grilled chicken in moyo marinade, some kind of zucchini cheesy Parmesan bake, and quinoa salad), and homemade strawberry shortcake for dessert.  (I had seconds on the strawberry shortcake.). Adam enjoyed playing with their 6 year old daughter, and we had wonderful ADULT conversation.  It was so nice to catch up, and spend time with old friends made new again.

After saying goodbye and giving hugs, we made our way back to Davenport (ugh, tolls...), and shared our day with the Kriegers, who had spent the day at Disney Hollywood Studios.  Then we hit the hay, and had a great night's sleep.  It was another great day, the weather was beautiful, and I will definitely miss this place when we head back home!  I know I have probably said it each day, but God has blessed this trip with so much abundance - of friends, of good weather, of great times and memory-building with my family.  No amount of money could buy the joy I have felt the past 5 days.

Florida day 4 (or "Adventures in LegoLand")

February 18th, day 4 of our Florida vacation.

The day started out well.  I slept in a little, but then did my morning "computer routine" from my iPad in bed.  Then I got up and started the coffee for the house, and tea for me.  Before my cancer diagnosis I cut out coffee, thinking that would help whatever was going on with me.  Since then, I have become a tea drinker, and just can't get back on the coffee train.  My tea for this vacation is Bigelow "Lemon Lift".  Delicious, as I love pretty much anything lemon.  I would drink lemon pledge if it was safe!

After another long shower (see yesterday's post!), we started getting ready for our days adventures.  As an aside, I set off the smoke alarm in the house, cooking breakfast for Lisa.  It was 2 pieces of bacon, and it wasn't even smoking.

We headed off to Legoland, about 40 minutes away, at 9 am.  We made a quick stop at Publix, a local supermarket chain, to drop off a redbox movie, and pick up a card for Jon Krieger, who would be arriving this afternoon with his mom Karen.  Jon's birthday was today, and I thought it would be a nice thing!

We arrived at Legoland at about 9:50.  Parking was $14 (ouch), and we were guided to park in the absolute farthest spots from the park.  If we had paid for preferred parking ($20) we could have parked almost right next to the entrance.  Oh well - we're young (sort of), so no big deal.

We get in line to purchase our tickets (on Presidents' Day, remember) and there is one person manning the ticket window for about 300 people waiting in line to get tickets.  We were in line at 10, when the park opened, but didn't get our tickets and into the park until 10:40.  Another ouch.  I won't even tell you how much the tickets were, and Adam got in free with a coupon we got from Lego magazine!  You can look up prices online if you wish.

Now, despite the initial ouches getting into the park, it was a great day.  The weather was phenomenal, and the staff in the park was awesome.  One of the the first things Adam did was buy minifigures at one of the Lego shops.  The cashier said that you can trade any minifigures you have with any minifigure an employee in the park has (they have them on their park name tags).  Cool stuff, though Adam didn't end up trading - he liked the ones he had too much!

So we spent pretty much all day in the park, which is open from 10-5, and we maxed it out.  Adam drove a car, drove a boat, built figures, saw characters, and had a great time.  Lisa and I had a wonderful time as well, watching our little boy enjoy himself all day.  One of my highlights of the day was watching him watch a Lego water ski show.  Very cool.  The other highlight was walking with my family through Cypress Gardens, which is attached to Legoland.  I got some great pictures, and it was a nice calm way to end our visit to Legoland.

Upon returning home (after a roundabout trip to Target to pick up a couple of missed items), we ate leftovers from last nights grilling out, and then had cheesecake to celebrate Jon's birthday.  Bed came soon after, and we all slept VERY soundly!

Looking back on the day, I realize how blessed we are to be spending time with friends, in such a wonderful place.  It is well worth the drive down, and the money spent (even though I still try to find the best deal...).  The best thing I can say - spend time with your family, no matter how you do it.

Florida, Day 3 (or, "Living Off-Schedule")

Florida day 3.  Sunday.  I slept from about 1:30 am, when we finally settled in from the previous days journey, until about 7:30.  That's good for me.

At some point, Brian went out for coffee and breakfast, seeing as we had no food yet in the house!  He returned from Dunkin Donuts with tea for me, coffee for him and Lisa, and sandwiches for everybody.

We talked about hitting a beach on one of the coasts, but after all the driving we did the past two days, decided we would rather just hang in the house.  We ventured out to the pool in the morning, and I spent a little time by myself praying, thanking God for this trip.  For not having to put on gloves when I go outside.  For the sun, on my face and warming my body.  For time "off-schedule."

That's hard for us sometimes.  We are planners (not doomsday peppers, though).  We like to know what we are doing when.  This trip, while we do have stuff planned, will be a good break from that, I hope.

So Brian and Kate went off to play tennis at the development's court, and I took the best shower ever.  Seriously.  The shower was huge (I could have easily fit our small bathroom at home in it), and I was able to enjoy a long hot shower, without worrying about running out of hot water, or the water bill going up.

After the best shower ever, we went for a walk outside, around the streets of our development.  In February...awesome.  Took some pictures, talked about retirement (someday, wouldn't it be nice, etc), and enjoyed family time.

We came back from our walk, and Adam decided to swim with Brian and Kate.  I wasn't in the mood for swimming, so I just watched, and enjoyed the sun.  We saw a sky-writer, and it was a perfect message for a Sunday:

Then we all hopped in the car to go grocery shopping, stopping at a local farm stand (strawberries, tomatoes, onions, bananas, oranges) before filling our carts with what we needed for the week, and things we didn't think to bring from home.

Upon returning, Adam watched Turbo, a redbox movie, while we all relaxed in our own way.  I surfed the web on the couch, Lisa napped, and Brian and Kate hung by the pool.  Eventually, Adam joined Brian and Kate in the pool, and expelled lots of energy!

We all helped prepare dinner - burgers and dogs on the grill, with fresh toppings from the farm stand.  And we ate outside.  In February.  Awesome.

The rest of the night was relaxing, chatting, and then splitting up and hitting the sack.  I praise God for a wonderful day, off-schedule.