Thursday, November 29, 2007

8 hours later...

Hi all - John's wife Jody here taking over the narrative for a while as John heals from his surgery.

Let me first say that John is resting in his room right now and the surgery was a success! The tumor has been removed.

Now - this is not to say it was a perfect day. Let me walk you through the day from my perspective:
3:00 am - wake up - can't fall back to sleep - too nervous
4:00 am - actually get up and shower
5:00 am - leave for hospital
5:30 am - check in at at GBMC hospital
8:00 am - after several attempts to access John's port and a couple thousand papers to sign later (did I mention John forgot his wallet at home!!) he was finally ready for surgery and they wheeled him away.

At this point I retire to the waiting room. My in laws are there with me too. (Their day started out badly after being rear ended on the way to the hospital but they are both fine!).

Soon my friend Jolene and my mom arrive to join the vigil. We hear nothing until about 12:30pm when I get a phone call saying that the tumor has been removed and John is almost done. Yeah!

So I wait...

and wait...

and wait...

...until about 2:30pm when the phone is for me again and it's from the OR - they are still operating on John - but they assure me they are almost done and I should see the doctor in about half an hour. Yeah!

so I wait again...

and wait some more...

...and then another two hours go by - and I get another phone call. They had some complications at the last minute and were just now closing him up. They say Dr. Grasso will be up to see me in 2 seconds. I don't believe them anymore by this point, so I prepare myself to wait some more.

But - in about 5 minutes Dr Grasso does indeed come out to see me! he explained to me what happened:

Basically, all was running smoothly until they went to put the staple sutures in his new "J pouch". when he noticed that they had all ripped! Apparently his colon and bowels were still very fragile and damaged from the radiation. So Dr Grasso says he only has two options in this situation:

1. Try to stitch it closed again
2. Put in a PERMANENT ileostomy bag (not a good option)

My breath caught in my throat at this point.... He then explains that he was able to repair the J pouch and save his lower bowels.


Dr Grasso was able to put in three miracle stitches to save his lower bowels and the day.

By the time Dr Grasso is done talking to us - I am so relieved, that I finally allow myself to fall apart a bit and get in my first cry. More of a release than anything else. He was OK!!!

Next came more waiting.... I wasn't able to see him until 7pm when they finally rolled him into his room. I saw him get settled after a very painful move from the gurney to his bed and then I left for the evening to try to get some sleep before heading back over tomorrow.

I'm sooooo tired and sleepy and slightly delirious at the moment, so I apologize if this didn't make complete sense. But at the end of a very long day - I'm happy to say John is ok and hopefully on his road to recovery.

Thanks for all the well wishes and prayers - it means alot.

Monday, November 26, 2007

surgery on Thursday... visitors guide

Zero Hour is approaching. Ever since Dr. Shih gave me the news I've been anticipating surgery to get the tumor removed. All we've been going through has been leading up to this week. I feel a little naive having thought back then that I'd check into the hospital really fast and get things taken care of. The reality has been scary at times but I thank God for answering my and your prayers to carry me up to these days, several months later.

I have a gate to go through over the next month. Technically, my large intestine is going to be offline while the resection heals. It is amazing how far medicine has come. Yes, I'm going to experience some pain as well as some weird sensations, but I know this time to heal is temporary and necessary. To that end, I'm refreshing my call for visitors!

Visiting hours are 9:30am until 8:30pm every day. I've been advised to tell everyone to wait until Saturday or Sunday before coming because I will be pretty loopy on Thursday and Friday. That should be fun. I will also most likely be in the hospital until Wednesday next week so some weekday visitors would be great! Beyond that, I would ask you to give Jody a call to see where I'm at and if I'm in shape to have visitors. If you need her number, email me this week before I check in. :)

Greater Baltimore Medical Center (GBMC) is located on its own campus inside the beltway, just off of N. Charles Street in Towson. From the beltway (I-695), take exit 24 and then go south toward Baltimore city. You'll climb a large hill then wind your way down the other side to the light at Malvern Avenue.

Turn left at Malvern into the GBMC campus and nab a parking slip (max is $5/day). After the parking pavilion, head up the hill and to the right passing a road on the left and a daycare on the right. As you reach the Daffodil parking garage on the right, look for the main hospital parking lot on the left. The main entrance is tucked into the buildings close to the road. The reception desk inside can tell you the room I'm checked into and clear you for a visit.

Here is a link to Google Maps highlighting GBMC.

And here is a link to GBMC's own map and directions page.

I'm doubtful I will have Internet access while admitted and I'm also doubtful I will want it very much. In the meantime, I've invited Jody to post updates here for those of you whom cannot make the trip. I'd love to see all of you, but I understand the trek may be tough to make in those limited visiting hours. No worries though... I'll just not visit you in the hospital when you get laid up. :P

My specific prayers this week are for continued defenses against my old friend Fear. He's had me chewing my fingernails off though I know I really get the bargain end of the whole deal; all I have to do is show up and fall asleep. LOL!

Additionally, both my parents have been very very sick with what may be this virulent cold that's cropped up and is resisting antibiotics. Dad has been especially down because he cannot take the full dose of his drug for the negative consequences to his kidneys. I had to miss Thanksgiving with them because they were afraid to pass it along to me before surgery. :'(
Please pray that they are healed.

Also on my heart is Greg out in Wisconsin. As you may have read, he's going in for the exact same procedure the same day I am and I know he's had to have been feeling something similar these days just beforehand.

Finally, I just want to give thanks for all of the doctors and nurses, specialists and support staff whom have expertly done their jobs in helping me get to this step. We're not done yet, but I am very glad for the talents and skills these men and women have been given and shared with me to make sure I can do goofy things like blog about my treatment. They've made this as easy as it could be no matter how much I may have already complained.

See you all soon!

[edit] Jeez... I can see the bump from my port... and yes, those are new eyeglasses.

[semi-important warning] No citrus for Christmas this year, please. Well, maybe some, but it will be for Jody and not for me. I have to avoid heavy fiber foods while me and Th' Bag are partnered up so oranges and fruitgrapes and those awesome honeybells are off my plate this year. No one is more disappointed than me. :(
Shelled nuts are out too. I'll be getting a full list after surgery.

Wednesday, November 21, 2007

And the answer is, "aaaaaaahh..."

The question of course is, "What sound does John make when relaxing in Cancun?"

[edit] This just in... Jody has a collection of photos from our trip online, here.

I regret to report that we are home from our brief escape. USAir did their best to attempt to ruin the trip by screening the worst movie I have seen since "Knocked Up." They showed Michael Bay's "Transformers" and it was awful. Like the other movie mentioned, it had the weakest possible storyline. Who on Earth (short of the flimsy Optimus Prime and all of his equally fragile cohorts) believes a mouthy teenager has artifacts for sale during show and tell time in his history class? And his father ponies up two grand for half of a complete POS Camaro? I know we're living with $3/gallon gasoline, but four G's for that pile of junk is so Unbelievable Hollywood... even if it did turn into a robot... the looked like -I- could take it down with hand tools.

Sorry. I grew up in Japan in the 70's on a diet of seriously tough giant robots. I am a robot snob.

Bienvenidos a Mexico! Are you sure you have a ride to your hotel?

Cancun's airport had changed, but the gauntlet to get to the pre-paid taxi/limo area is still the same. We boarded a Volkswagen Eurovan (you knew I'd mention it, Jody!) and were soon whisked away to the Westin Regina... er... the regular hotel side. Yep, another attempt to ruin our weekend as the spa and our condo-like room were in the building that was closed for renovations. We got booked into a (very nice) regular hotel room. We got a $40 credit for the restaurants and complimentary buffet breakfast.

This is where things began to work back into our favor. Breakfast was awesome. As I may have mentioned before (or elsewhere) I am a breakfast guy. I like breakfast foods and the Westin Cancun took care of me. Fresh fruit and Mexican dishes and seriously good coffee and this awesome hot chocolate drink started every day. And what busy busy days we had...

Here is how a typical day went this past weekend...

breakfast, find a secluded palapa on the beach, position a beach chair under the palapa for good shade, lay back, knit socks or do sudoku puzzles, periodically move the beach chair to stay in the shade, enjoy the sounds of the waves and the breeze in 80°F weather... repeat daily

Like this...

We left the hotel one afternoon to have lunch and shop but that was not necessary. If you're thinking of taking a trip yourself but are afraid of foreign places, go to Cancun. You will have all the Hard Rock Cafe, Outback Steakhouse, Harley Davidson you can stand. It's like we were in the US except everyone spoke Spanish. ;)

We stayed at the hotel otherwise and had no problem with doing so. The bar and grill by the pool served yummy lunches of quesadillas and guacamole and a BLT sans the B one day. In the evenings we tried both of the sit down restaurants and went back again to the beachside place, Sea and Stones. They're right on the beach and serve very reasonably priced dishes that you cook for yourself on super hot stones. They were like smooth pavers heated so hot they'd cook our bite-sized marinated meats right before our eyes a la fondue or hibachi style. The meals were so good and relatively inexpensive we indulged and had dessert both nights too. :d

On the beach I managed to get swept away long enough to forget to sunscreen my left arm one day. I'm paying for it now but the sting just reminds me of the relaxing weekend.

Back home, reality was waiting. Yesterday I had to get a pre-surgery checkup and an EKG. I got the BMW dropped off for the inspection and alignment. Today I will get a chest x-ray and give another coupla vials of blood so that I'll get the green light for surgery. I will also followup with the radiology clinic and get an orientation brief for the ostomy I'll be attached to. Then I'll come home again this afternoon and get to work on Thanksgiving; I'm making the turkey and I'm glad I can do it. With luck, the BMW will be ready for me to bring back home this afternoon along with new stickers for the tags! :)

Wednesday, November 14, 2007

:chik: :chik: :chik: :chik: :chik: :chik:

That's supposed to be the sound of a rollercoaster climbing that first big hill. Again. ;)

I had another followup with Dr. Lee, my oncologist, yesterday. I joked with her when she commented that I looked like I was feeling much better. I said it was amazing what -not- poisoning yourself and napping inside a microwave every day can do for you. :P

I had a short list of questions I knew most of the answers to. Yes, I will be on chemo again to attack and kill the metastatic disease. It will begin two or three weeks after the ostomy has been reversed which will likely be about a month after surgery. I'm gathering that means chemo starts mid to late January. It will be a sequence of visits for bloodwork on day one, drip for a few hours on day two, then home with a little pump on my belt until day four. That four day cycle will repeat every other week for twelve rounds... twenty-four weeks... almost six months... and it's going to 100% instead of the 50% regimen of Xeloda that already sucked pretty bad.

But there won't be any radiation exposures to endure!

Lots of people go back to work during this period of their treatment and I've read a lot of good advice. It's a lot like riding a ride I've already been on. I know when the drops and loops are now and I know when to scream. Screaming always helps keep your stomach from getting upset. This time through I may be able to relax a little and wave my arms around knowing more of what to expect. It's not so scary.

Let me balance that with a little news from the garage...

The Pickle lives! I've probed and pushed my limits a little over the last two weeks as my strength has returned and made some progress on the BMW. I got the heater core out and began cutting out the carpets and accessory wiring. I was able to successfully bypass the heater core, fill and bleed the cooling system, and take her out for a brief drive last night! reading the Bentley book, I needed to get the engine up to temperature to check for leaks and expel any air in the system. So, I grabbed my celphone so I wouldn't get stranded anywhere and took to the streets. After a few minutes drive I stopped and checked things over... no leaks. :D

With that success, I will have the car in for an alignment and the state inspection next Tuesday morning. I am really looking forward to finally being able to legally drive the car more often to shake out the bugs and fine tune everything.

Of course, that will have to wait for a few days while Jody and I retreat to Cancun for a long weekend. We'll be in the air eeeaaarrrlllyyy tomorrow morning and in Mexico before lunch. I am so glad I've got the energy to make the trip.

In closing, I want to add my new friend Greg to your prayers. His tumor is higher than mine and he was a few weeks ahead of me on the chemo and radiation journey. We will both be going in for surgery on the same day. I asked him if he wanted to race... ;)

Sunday, November 11, 2007

What a week(end) I'm having!

Do you guys remember Eugene Levy's character in that early 80's movie, Splash? You know, he was the geeky scientist trying to prove Daryll Hannah was a Mermaid while Tom Hanks defended her honor (waaaay before double fisted Oscars). "What a WEEK I'm having!"

Sorry. Very obscure movie quote moment passed. Please continue.

Yesterday, Jody and I got to go on a little weird adventure. It started out innocently enough. We were going to meet her parents half way from our homes and do the doggie exchange. Bailey and Hurley are at the grandparents house now while mommy and daddy go to Cancun later this week. (woohoo!) We'll all be reunited for Thanksgiving but that is only where the day began.

We'd been invited to a housewarming party for some old friends of mine whom recently bought a new house. The party would be later in the afternoon so we poked in a more leisurely route to the address on our GPS and drove through the PA countryside. En route, I saw we would pass through Hanover and my thoughts went to a cowrker whom lives up there and routinely brings in barrels of pretzels from the factory. I love a good crunchy sourdough pretzel so I punched in Snyders to see if the factory wasn't along the way.

"Drive 2.1 miles then turn left onto Pine Road." (in the robo-female-British-accent voice)

Bada bing we got some pretzels... and some cookies...

Back en route (or so I thought) we stumbled across the Utz factory and zipped in for a tin of chips and a couple of bags of Crab Chips (Old Bay) and some sweet and salty crunchies for making our own snack mix without the little white-bread crackers.

We were on a snack trek.

Now back en route I saw our arrival time was only 10 minutes away and I thought we were doing well. But noooOOoooOOooooo... Jody had commented that we were close to a yarn mecca and had looked it up. She insists she clicked "No" on the add waypoint question, but the GPS was taking us there instead of the housewarming address.

Fine. We only had a half an hour to spend there before they would close and the housewarming would be ongoing. Jody got some yarn (natch) and a book and I spotted a cool, quirky winter hat that I liked so she got the pattern for that too.

Back to the car and back on course for the housewarming. 30 minutes away... cool. :)

Upon arrival at the house, it became evident this would be no usual come on in take a look around have a cookie kind of affair. You see, the house was the new digs for newly minted Mega Millions winner Bunky Bartlett. :D His wife, Denise, and I have been friends for a decade plus having met at work and shared a expansive sense of humor that early and long-time Internet users "get" while younger, newer people abbreviate there humor into txt msgs. OMG LOLZ 8 U.

As we approached the house, we ran into Brian (Cheebie) and Christina Merchant; part of the same group of old friends who "get it." They were headed home before dark (sorry!) but we had a quick visit and then headed toward the house. Behind and beside the tudor styled main house were two staggeringly large tent buildings erected for the Bunk Bash; the first held a small concert theater for several hundred people while the second would be our retreat for a buffet dinner and karaoke into the evening.

I found Denise right away and expressed my stunned amazement at the scale of the party. Bunky bubbled past shortly thereafter and I got to introduce them both to Jody. We found more old friends Kathy Roznowski, Jeff Lesniak, and his wife Vicki Amb-Lesniak whom shall henceforth be referred to bu her royal title of Da Queen. DQ for short. It is arguably Vicki's fault that we're all friends to begin with.

We found some warm drinks and chatted knitting and cancer and photography and holy cow can you guys believe Bunk hit the lottery. Soon, Bunky took the stage and announced Dilana to the crowd; he'd flown her and her band in for a private concert. You may recognize her name from the most recent reality/talent contest on CBS, Rock Star Supernova. As Jody put it, they were my kind of rock band. :rock on:

It was mighty chilly and I'd embarked on our adventure without a coat. It was too loud for Jeff so we retreated to the other tent that was enclosed and heated. We talked more and enjoyed the music at a distance and were perfectly positioned when dinner was served. All the food groups were represented... steak, chicken, fish... the catering was excellent.

Bunky had given me a card that the State Troopers would accept as an okay to tour the new house. Jody and went inside and checked out the new house... and were awed. We really liked the idea of the pendant lighting in the living room and I gushed over the bidet in the first floor bedroom's private bath. Hey, I have rectal cancer and keeping clean 'down there' has become a real priority. :P

The day was catching up with both Jody and I and we returned to the tents to find and thank Bunky and Denise for inviting us to their new home. We left just a little before the party was slated to end just beginning to pick our jaws up from the floor. :)

I wonder what today will bring?

Friday, November 9, 2007

the calm before the storm?

It's really hard to fathom that just two weeks ago I was having some of the worst days of my life. The chemo and radiation had just finished and I was looking forward to feeling better instead of feeling fried.

But here we are just sixteen days later and I feel really good. I did make it to the Punkin Chunkin last weekend though I was pretty wiped out on Sunday afterwards. Through the week I've done a little work around the house and given in to my temptation to tinker with the BMW. And oh boy have I tinkered...

So far I have managed to cut out the majority of the carpeting and replace the drivers seat. The rear seat and trim panels are gone now and I will go after the decaying fuel lines through the service port back there. I got the heater core and supply tubes out under the dash and will be working on a bypass while I figure out which piece has failed (my money is on the heater control valve). I carefully extracted the trunk toolkit and factory alarm system from the car that some geek may be lusting over. Sometimes car guys get obsessive about original parts and options. Do you know the way to use eBay? (cue corny eBay music) I was not so careful chopping out what appears to be an antique carphone wiring harness. I believe (knock on wood) one of those two electrical items had shorted and was killing the battery. I will find out this weekend if the recharged battery dies again now they they're out of the car.

With all this newfound strength, there have been some rather melancholy moments. I know I have surgery approaching and I'm getting my ducks in a row to be comfortable and occupied while checked into the hospital.

One of those ducks is my iPod (ptui). I bought it after Jody and I went to Scotland and ran into a fellow using his to cache his digital camera pictures. I found a used one loaded with tons of tunes (over 14,000) but little in the way of music I know best. So, I've gradually loaded my own music onto it to keep me company when I'm in. I keep running across music that really moves me so I wanted to share one that especially speaks to me every time I hear it.

It's called "No Doubt" and it was recorded by Petra. Formerly the gold standard of Christian rock bands, the guys retired the band in 2005. This song was the title track to their album from waaay back in 1995 and it's about enduring, or rather passing those tests of faith that Life pops on us when we're not expecting it. Like rectal cancer. Facing surgery and more chemo and the liklihood of icy biting neuropathy through a Maryland winter, it's as if this song was written for me. (cue tears and Kleenex)

There are times when you feel like you can't go on
There are times when you feel like giving in
And there are times when you feel like you can't try anymore
There are times of trouble in believing
This test of your faith will last
As long as it takes to pass
Till you have no more doubt you'll endure
And your faith will emerge true and pure

No doubt it'll be alright
With God it'll work together for good
No doubt in the end it will be understood
No doubt it'll all work out
With faith He can move any mountain for us
No doubt in the power of Jesus
And after all is done we find out
All we really need to have is no doubt

There's a time to take a reckless leap of faith
There's a time to be cautious and to wait
And there's a way of learning from the past
That this time of trouble won't last
And sometimes we want to think we know
The ways He will choose to make us grow
But it's never the way of our choosing
And we can't always see what He's using

No doubt it'll be alright
With God it'll work together for good
No doubt in the end it will be understood
No doubt it'll all work out
With faith He can move any mountain for us
No doubt in the power of Jesus
And after all is done we find out
All we really need to have is no doubt

There will be winters in the seasons of our soul
With a cold and bitter wind that chills our lives
But our faith can be building a fire
That will warm us till springtime arrives

If you want to hear it and don't mind installing the Rhapsody player, it's track 5 here:

I need some tissues now. :')

Friday, November 2, 2007

big fat juicy update

I owe you guys another post and this time I will publish some pictures. :)

The first few days off the therapies were honestly some of the worst I've had thus far. Without the side effects to, um, soften things up, the oxycodone had free reign to knot me up big time. I return with a pary of Senokot pills and plenty of water but that just gave me ammo for more tears. I got really conscientious of my water and fiber intake after that and marched on through. The rain through the weekend both helped and hurt; it was depressing outside, but the patter of rain on the roof always helps me sleep well. Things are improving, but it's no time to let me guard down. The boys have been especially sensitive to daddy being hurt and Jody caught a sneak snapshot of Hurley giving me love the only way he knows how. :)

Yes, that is some hair on my face. It is not much and probably never will be, but it is more than I've ever had before. You may have to zoom in on the picture but I won't be offended. I've always been a babyface. I forgot to shave the morning after my birthday and again the morning after that. So I let it go. I'm not working so I don't have to look professional (as if I ever do!) so I figured why not. Jody noticed and has decided she won't let me shave it off. She likes it and wants to see how it might grow in.

Jody also booked us a long weekend trip too... to Cancun! She's cutting it very close with her leave balances and may have to take a day or two of unpaid leave courtesy of the FMLA, but we can thankfully afford it and she believes I deserve it. Four nights of all-inclusive pampering at the Westin in Cancun will be a very very welcome escape. In turn, I made appointments with the wound care center at GBMC (to learn about caring for my ileostomy), a pre-surgery check up, and a port flush. I've also got followups with both the radiologist and oncologist in there. The trip will be a nice way to relax before two weeks of business and family visits before I check in for surgery. Remember to come and visit!

Wednesday this week was Halloween and I was feeling pretty strong; strong enough to try for a trip to Skyline Drive. The timing is always bad. If I wait for news stories that the leaves are changing and it looks pretty, that's always too late. Trying for a weekend drive always results in bumper to bumper traffic up there with all the other hopefuls. And then there's the weather. Well, I'd been eying the weather reports and seeing the leaves change here had me figuring the higher altitude and more southern latitude might work in my favor. I'm not working so a weekday trip would be very doable. I called Mom to see if she wanted to go too... hehehehe

As you can see, we hit it pretty perfectly. Traffic was a non-issue, the sky was perfectly clear, and the trees were turning but not quite ready to let go. I also got to take the GTI instead of the Escape so the drive itself was more fun too. :D I packed my small cooler with some water and Gatorades and a big sub sandwich. Mom brought some chips and snacks and we picnic'd just south of the tunnel near the VA 211 crossing. I do admit I pushed it pretty hard that day and Mom took the wheel for the last hour on the way home. However, it was not a trip I could have done two weeks ago nor did I get as wiped out as some daytrips before. I'm feeling better just not 100% yet. Getting out helps though... this weekend I'm hoping to finally see the Punkin Chunkin!

Some have asked if I still want to be on prayer chains and lists and I appreciate all of you. I'm specifically concerned with my skin "down there" still as it's still quite tender. I am also still very anxious about the surgery and recovery coming up. I know I get to be knocked out and just wake up fixed but it is still pretty scary, not to mention all of the possible/probable complications and the recovery time. I can't ask all of you to do this, but I did want to share one thing; one of Jody's coworkers is flying to Israel on what sounds like a pilgrimage. She is going to visit the wailing wall, part of the ancient wall of Jerusalem, and she is going to pray for me there. I am honored and humbled that she would do this for me just as I am honored and humbled by all of you writing and encouraging me. So yes, I would like continued prayers and I promise to pray in thanks for all of you too.