pre-Christmas update

It's been a very good week thus far and I owe you guys an update... plus a little Christmas gift link to the funniest thing I've seen/heard all year. Read on.

To open, I heard from my friend Greg early this week. We had a great conversation and I'm very happy to report he's in as good a shape as I am and not back in the hospital or anything. He had some trouble with his sutures opening and infection starting but got a quick handle on the problem and did not have to be readmitted. His back has been trouble for him too and I shared the stretches Dr. Shaw had suggested to me.

Those have been paying off along with heat and some focused time on my feet getting out and about. My back still isn't 100% but it is getting there. I've been well enough to have tried to go shopping, drop in on my team at their offices for a Christmas luncheon, and driven myself back to GBMC for a checkup on my stoma.

Shopping has been tough and I pretty much stuck to getting the things I needed right away and getting back home. It was great fun to visit with a bunch of my coworkers and catch up with the news at work. They even got Jody and I a gift card for FYE that i think we may use for some music and games for Christmas. :) The trip to GBMC was the biggie though...

It was good and bad news up there. The nurse was impressed with my and Jody's handle on caring for the stoma and in the choices of products to use. She is concerned that the skin around the site is a little chewed up from exposure so she showed me how to use the Adapt paste instead of the Eakin seals to get a little better fit. So far though, the paste alone is not lasting quite as long as the seals and we may try to double up so that the skin is better protected and the pouch flanges last their full use. I had to exchange one yesterday by myself and it is already showing signs that it will not last through today. :(

I wish it weren't Christmastime because I feel I've been robbed a little. So much has gone on recently that I have had no time or even the thoughts of trying to choose gifts for anyone. So, in a rather cheap way I offer up a link to a seriously funny Sir Mix-a-Lot cover.

Merry Christmas, everyone!

first day on my own

It's mid-day, Monday the 17th. I'm home alone for the first time in... I cannot remember.

I'm doing okay. I did not sleep very well again last night as my back is still bothering me. I got up around 6am and got some breakfast in me; Cheerios. I vegged in and out of sleep with Saved By The Bell on television. It's my secret guilty pleasure. Jody got ready for work and headed off a little later and I hobbled around a little before laying down again for 2010 which was funny to watch. As if the Soviets would still be a problem in that year. The moral of the story was to tell HAL the truth and trust that he/it would cooperate in saving the astronauts and cosmonauts lives.

I'm psyching myself up to go for a walk outside. I know I need to do more walking and that it will fix my back right up. But it looks cold. I may try to go to a shopping mall and walk indoors instead but I'm still spooked about losing integrity of my ostomy bag. It's happened a few times now and all I've been doing is laying around. :(

I need to make some phone calls and do some paperwork too. I'll do those when I get back from my walk... because dangit, I need to be able to sleep without my back hurting me!

prayers, answered

You know, it really is good to have a faithful God in heaven who hears and answers prayers.

My back is still the big problem but my worries about infection at some of the incisions are over. The staples came out on Tuesday last just in time for a bag change. I was in tears praying beforehand that the new two-piece ostomy bags would work well but afraid that they might fail too.

I believe God already had that answered last week when I ordered (blindly). I am happy to say the new ostomy supplies are working the way we need them to. God definitely put us in the right hands with the pharmacy as we got excellent recommendations for products to use and clear advice on how to apply them. The first bag swap from the new supplies has lasted three days now! And the two-piece bag is sooooo much easier to empty and clean. I do wish they had the little gas filter and a more solid bottom opening, but the two part design is much more livable than the one part stuck to me like I had in the hospital.

I've also been able to temporarily get some relief for my back using a little leftover oxycodone (Dr. Grasso said it was okay) and a rolled up beach towel right about where I wear my belt. It just occurred to me like :bing: I should try this. While laying down I can get my lumbar lifted back where it's supposed to be and give my muscles a big break. It's not the answer, but it's working in the meantime.

I'm worried about my friend Greg as I've not heard from him in a while. Imho, he got shafted with his ileosotmy. He was not told it could happen to him until right before his surgery and he did not get any advance education. If he's had the same troubles I've had, I know he's feeling pretty blue. Please, pray for Greg too. :(

prayers, please

Hello from home, still. It's been a rough few days with several challenges and I need help.

For openers, my ileostomy has been a very big hurdle. Jody has done an outstanding job of helping thus far with what is easily the grossest thing. The trouble is one of my incisions is very close to the stoma site and the bags that attach there are too easily foiled by the refuse escaping into the bag. It wets and works its way along the incision causing a predictable leak and inevitable infection in the suture itself. I have supplies coming to help dam this area and make the bags more reliable, but they do not arrive until tomorrow nor am I an expert in applying them just yet.

Second has been the trauma to the nerves below. Both my large bowel and bladder are nearly numb and I have to work to sense when they need to be emptied... or stopped. Two accidents during the nights so far have humbled me and I know nothing I can do but pray and wait for the feeling and control to come back. I am trying some clenching exercises in hopes of jumpstarting the automatic controls, but I know I need real healing.

Finally, my lower back has been an absolute spaghetti knot of spasm. Mom guesses it is from an extended period in stirrups in surgery, but I do not know. All I do know is I hurt. Massage and Tylenol have only dented the problem and I'm dying to visit my chiropractor. Unfortunately, he has shied away from seeing me so shortly after surgery but he sympathizes and told me he'll be there as soon as I can take an adjustment session. For now, I just need some relief more than traction at home has given me.

Otherwise I'm doing really really well. My appetite is back despite having to think about chewing everything real well. I am sleeping a little longer at night between interruptions. Both of my Moms are here with me today and I'm feeling alright. It's just these moments that hit me a little harder than normal that I need the most help and I pray for faith and strength to get through.

spinning

Last night was tough. It is a relief to be home, but it took so much energy to get here that I think I've lost something. Sleep came in small chunks and various contortions but my dreams were horrifying. I kept floating through some sort of clandestine backwoods surgery where doctors were strung up on bungee cords being threatened to perform procedures or be shot. I didn't know if I was one of the patients or one of these terrorist dudes just that I was scared to death and I could do nothing to force my mind to more pleasant things. I emptied my ostomy bag several times through the night and Jody snuck away to sleep elsewhere at some point. I wavered from freezing to stiffling. At one point I put my head down by my feet and curled up with Hurley and it was the most calm sleep I got all night. I'm not sure what I'll do, but I just pray for some normal pattern.

In the world of the awake, I have an appointment today with a home care nurse in just another two hours. I have a followup with Dr. Grasso next week to have the staples removed. I see Dr. Lee on the 18th for a visit and will visit Nurse Simpson back at GBMC on the 19th to report how I'm getting along with the bag.

Speaking of the bag, it will be with me a bit longer than first expected. I see where Jody learned why, but I learned why differently. It was a blow for sure and pushes my dreams of track driving my Bimmer back to the end of next season instead of the beginning. I'm just thankful for the success Dr. Grasso had with the j-pouch and I got the feeling he was thinking of me and the car when he put in those extra hours to avoid a permanent ileostomy... that would have sentenced me to the grandstands.

I need to call CIGNA to start the long-term disability process that will certainly kick in now that the surgery has dictated a longer calendar. Jody and I will need to prepare for the impact to our budget and adjust accordingly.

Realize some of this is just me being methodical and staying focused through some really weird sensations and unusual pain. Tylenol does a little good, but these weird muscle pulls and constant indigestion are persistent. I feel like I could use a good belch almost all the time. It's probably a sign of hunger so I'm going to get some breakfast and get ready for the home care nurse.

Please, say a prayer of thanks with me today. I am so happy to be home, even in this shape. I am just thankful to be on the other side and heading -out- of the woods instead of deeper in.

I am home...

Yes, I am home. I've not kept up with Jody's entries (blogger.com wouldn't resolve on GBMC's very low strength wireless network) but I will regain some strength and act accordingly. I've done more work just getting home today, through our first snow no less, and -finally- getting a shower that I've just not got the strength to write much tonight.

I can go no further without stopping to thank God for being faithful to me and answering every prayer I lifted up this week. From giving me the strength to endure the tube to getting my bladder under my own control last night, all of the steps I was able to accomplish were answers to my prayers. Being released home and a safe drive through the weather were only just today.

I will write more, soon.

The tube is gone!!!

Woooohooooo!!!! We're celebrating today! They finally removed the tube today from John's stomach!

Thanks for the prayers and positive thoughts - it was definitely needed.

John drank his first few sips of water today, followed by tea and soup for dinner. He was finally able to get the nourishment he's been needing.

His stomach is working again!!

And that's the first step in his recovery.

Still going strong

Hi all - Jody here again.

Sorry I haven't updated you lately! I've been spending every moment I can at the hospital. I'll try to catch you up:

Friday - I arrived to find John sitting up and looking great! He had a great deal of pain in his abdomen, but less than the day of the surgery. He felt well enough to get up and walk the halls 4 times!! He was able to eat jello, soup, and Italian ice for breakfast, lunch and dinner! I helped change his ileostomy bag (not as gross as I was expecting) and it was generally a good day :)

Saturday - I arrived to find a "Nothing by mouth" sign on his door. I immediately knew this was not a good sign. I walked into his room and found he had a brand new tube... this time coming from his nose. He had started throwing up bile during the night and Dr Grasso prescribed a tube to drain his stomach. There was too much bile in his stomach and it wasn't passing through to his intestines, it was instead going the other direction. The green bile was coming out of him in such large quantities I was a bit scared. He was so good on Friday and now he looked terrible. The nurse said it may have been a reaction to the meds or to the anesthesia during surgery. He felt a little better by the end of the day and we were hopeful the tube could be removed the next day.

Sunday - I was hoping to walk in and find his "Nothing by mouth" sign removed, but no such luck. He still has his tube today. They tried removing the pump (while still leaving the tube in) but after an hour when they pulled back on a large syringe to see how much was still in his stomach - there was still A LOT of green bile coming out. He ended up throwing up again and getting the tube re-connected for another day. This is the second day of no food and no water except an ice cube every 15 minutes. He's very weak and uncomfortable because of the tube. Pain wise - he is feeling much better and they were able to remove his pain med pump. He's now getting a pain/anti inflammatory med every 6 hours. I hope the removal of the pain pump may help the stomach issues - he mentioned he was very itchy too - so he may be having a reaction to the medicine.

Keep you fingers crossed that when I go to see him tomorrow - the sign and the tube will be gone!

Thanks for all the prayers and notes...

Oh! I almost forgot - Yeah Greg! I'm so very happy to hear your surgery went well :) John will be very pleased to hear to good news!

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.

THANK GOD!!!!!!

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.

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.

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! :)

: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... ;)

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?

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: http://www.rhapsody.com/petra/nodoubt

I need some tissues now. :')

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.

why it's important to remain humble

You all know how pleased I was with the good news about the dramatic drop in my CEA count. I was also very happy to be in that final "boost" week where the radiation treatment field was finally reduced to just either side of me instead of from my back as well. I was thankful for these things and looking forward to the time in between the therapy and surgery.

Monday afternoon Jody and I met with Dr. Grasso as planned for when the chemo/rad was finished. I'd been doing some research and had some specific questions about his approach and what to expect afterwards. I wanted to know instead of wonder so I asked.

I will not lie; some of the probabilities are unpleasant if not absolutely shocking. I have been pretty upset since then but I am holding onto my faith. It has not failed me yet.

I'm going to lose the better portion of my rectum and an astonishingly large section of my lower colon. Dr. Grasso's plan is to resect back far enough to take out the blood vessels and lymph nodes surrounding/supplying the area including the tumor. It is aggressive, but I believe there will be little to no chance of ever having a problem again. Again, I will not lie. This scares me a lot. I'm looking at what seems to be a quarter of my lower bowel using the illustration Dr. Grasso used to describe this too me.

The resection is going to be limited by the size and shape of my pelvis. Beyond just attaching the healthy sections together in a straight line, he has two techniques that will make up for the lost capacity of the rectum. The one he wants to try is called a J pouch where the rectum is turned back on itself to form a J-shaped area to hold more waste. The bottom of the J becomes the new opening to the rectum and this is a proven method used by lots of surgeons with success. Another is to cut the lowest portion of the new section and stitch it back together sideways making another larger space. The downside to both of these methods will be more urgency and more frequency in trips to the bathroom. There is no getting around that it seems.

Recovery is going to be kinda ugly as I will be wearing an ileostomy bag for most of December. I am hoping the resection will heal in time to lose the bag before Christmas. To my perfect shock, my diet -still- will not matter and I can eat anything I choose. Go figure.

The worst is the risk to my reproductive system. I do not want to be gross nor do I know the biomechanics of the nervous system, but there is a probability that I will not be able to have kids the "normal" way. I may have to go through minor surgery to collect and/or bank my semen because this colon resection may leave my plumbing turned backwards. He is confident I will not lose any ability to have sex with Jody but my ejaculate may wind up in my bladder instead of outside where the little swimmers can try to make a little John or Jody.

Above all else this was the most heartbreaking for me. Jody endured a miscarriage two years ago. For the few days before it happened we were both profoundly moved that we would be parents. This was one thing we both wanted but had given up to God to decide when we were ready. Suddenly, we were ready. Even though we didn't feel prepared, that decision had been made and God thought we were ready. But we weren't and that time was really only to enlighten us both that having a baby was something we both really want. And that we need to be patient for the time to come instead of try to force it upon ourselves at the expense of our relationship or our friends and family. We knew then we would probably need help getting pregnant. Though it has crushed my spirit for a few days now, the reality is we will probably still need help. Just now it will be both of us needing help. Adopting an unwanted child is also still out there and may turn out to be what we are supposed to do nonetheless.

So yeah, my radiation is done and the last of the chemo pills are gone. I'm still hurting but I can now look forward to healing up and getting some strength back. One thing is most clear as well; I've no room to be proud for "surviving" this or any other ability except to lay it all out there and pray for help. This is my test and I know I will pass.

Three point seven, baby!!!

I had to post again...

I was on the phone with my mom checking on me when I got another call. Mom excused herself and wished me a good day.

On the other line was Dr. Lee, my oncologist. I wished her a good morning and mentioned that I was intending to call her later today to see if the results from my most recent bloodwork had come back. They had and the results were very, very good.

I am not anemic and my kidney and liver functions are normal. Those weren't the factors I was interested in though so I asked about the CEA (CarcinoEmbryonic Antigen) counts. On my mind was the last number I'd heard which was 19; a borderline indication that metastatic disease was on the move... cancer spreading, in layman's terms. Seriously sick people have CEA counts above 100 while normal, healthy people count only 1 or 2.

Well, as of this past Tuesday my CEA count is down to 3.7.

THREE POINT SEVEN!

Hallelujah!!!

cast your vote

Yeah, it's 4am and I'm posting, but I've been kept awake this night and I just need something to get my mind out of the bathroom. Yonder computer will entertain me with more BMW tidbits and I will surf to some electric vehicle sites starting with this one and dream about an electric car that actually performs like a car. It would be awesome to carve corners at Summit Point making no noises but tires squealing...

On to the subject...

Now that all this hubbub has died down to a dull roar there is some time to relax. I will have some regular blood checks to do between the end of whacking the tumor but before the surgery to remove it. Otherwise, I'll be home just getting my strength back until then. Since surgery will most definitely lay me up even longer, we've toyed with taking a vacation. Jody and I are fortunate enough to be able to afford to take a week off and get away and we are thankful for it.

Surgery will be the week after Thanksgiving and we anticipate having family and friends the week of Thanksgiving so we're looking to get away before then.

Two destinations keep popping up largely because they were two of the most relaxing places we'd ever been; Isla Mujeres in Mexico, and taking another cruise.

In reverse, a cruise would be great again because this time we'd go just for the ship. No attempts to adventure anywhere off the ship, just us and the lounge chairs and no effort to eat or drink. One possibility is cruising with a line not so popular with kids. One minor irritation was the level of noise on the cruise we took back in April so fewer kids would be nice. That's also a minus because we did just take a cruise for our anniversary back in April. But a big plus would be the comfort level on a ship which just about guarantees a relaxing trip.

Isla Mujeres was the island Jody and I visited on our last vacation as boyfriend and girlfriend; we came home engaged to be married. :D A return trip could be relatively stress free but not as effortlessly as a cruise. Jody would be put upon to do all of the speaking (No hablo mucho Español) and the trek to the island would definitely require all of my energy if we were to go today. I'd be wiped out by the time we got there unless I get a lot more strength back soon. We'll go back there in the future nonetheless so trying to go just for this time before surgery isn't a dealbreaker. It would be great though just sitting under a palapa all day. Just imagining it now is soothing away a little of the last few months. :sigh:

Feel free to post alternatives. I want to be warm and relaxed and preferably close to a pool or ocean without a care in the world but hopefully able to order a girly-drink without Jody's assistance as an interpreter.

:thmp thmp thmp: Is this thing on?

Good afternoon, all. I am still alive though I wish I could sleep off the rest of this. Birthday Friday was a doozie that I should have begged off of but I didn't want to disappoint my family.

We went to one of my favorite Mexican places; El Azteca. It took some time to get inside which is always a sign of good cooking, but I had to bail to get a donut and a coffee because I was getting shaky. Back home I was so tired but there were gifts to open and I figured I could rest late on Saturday.

Bill got me a cool pocket 8/16-bit game with little cartridges filled with old arcade games. Biggest surprise there was a DigDug II that I never knew existed. Most fun so far has been Donkey Kong Jr. Joanie and Josh got me Oblivion for the Xbox, but I'm going to demo it first because I think it is an RPG. Mom and Dad got me shop manuals for my BMW from Haynes and Chilton which I hope will get put to good use soon (please let the chemo and radiation wear off fast!). Jody overloaded me with movies, a quiz book, an XBox cheat book (tsk tsk), and an extra Xbox controller. (I had to download Bomberman from Live so we can play each other now.) The last gift was a quilt Jody had made with friends after sending patches all over the place to have friends and family personalize to help me get better. I was really touched and I will definitely take it with me to the hospital but I was so tired when I opened it that I couldn't really express my thanks. I was really really out of it.

Truth be told I was exhausted before we went out Saturday evening and I haven't really recovered since. I pushed it going out with Joanie on Saturday to pick apples and though I was feeling good out in the sun, I paid for both days the rest of the weekend and through today. I'm burned up and short-tempered and I know I've lost it over the smallest and stupidest things. For that I am sorry and blaming the drugs or the radiation is only an excuse. I just feel like crap all over and, even when asked, there isn't anything I can think of that will make me feel better for very long at all. I just want to be finished already. That or unconscious for the rest of the year until the surgery is done. Someone's old joke about being sick and tired of being sick and tired comes to mind but I can't remember whose it was or if I'm even remembering it right.

happyish birthday

Yes, today is my birthday. I looked back over the blog and saw that I was hoping today would be the last of the chemo and radiation therapy. Well, it will be a week from today and all in all I am not a complete wreck as I thought I might be.

This had been a rough week until once again I took charge (with a great deal of help from Mom) and went out of my way to get the liquid Oxycodone Dr. Cheston had prescribed/suggested/hoped/gambled would help me with the intense pain trips to the throne had become. She instructed me to take the stuff about half an hour before getting out of bed for my morning edicts to the kindgom or half an hour before I felt I'd be so royally seated. Though it had taken some rational yet insistent argument with the local Kaiser pharmacist, a hundred miles round trip later through the worst DC's traffic system could muster, I had my little bottle of the next thing to try and was praying it would work.

Lo and behold it did. It's no business as usual by any stretch, but the edge is very dull now and I am not leaving in tears or shaking so hard that I need sleep. Because the stuff takes effect so quickly and is essentially a substitute for one of the Oxycodone pills, I have backed the pills down by one and will ween myself off of them with purpose when therapy does come to an end. They are addictive and though I do not feel myself wanting for them, I do want to make sure I don't.

This all happened just in time for Joanie's visit from Idaho. She arrived Wednesday night very late and has been filling in for Mom since yesterday afternoon once she got over a little jet lag. The morning liquid Oxy does me so well I do not need to immediately rush home after radiation to get some breakfast... though that is still a better start to my day than not getting any! ;)

Today Joanie took me in for the final full-strength radiation exposure. I learned earlier this week that the final week would be tapered off nice and easy. I felt bad having broken down in the doctors office when I just couldn't get them to adjust the field, but the news about the last week going to be lessened did help steel me for these last four days. They're done now.

Joanie and I celebrated with a little shopping and a realization that brick and mortar stores can sometimes just plain suck. I've wanted some new hiking shoes and I prefer to try them on to see that they look nice on my feet and fit well. Price is a not a major factor, but I don't even try on shoes that cost too much. There is no practical reason my mind accepts for such wildly different prices for shoes. When I thought I'd found a pair today for a reasonable price (what I now consider "reasonable" is also rather nutty) I got an immediate runaround from some English as a second language clerk who ran off with the shoes to get another box that said they shoes were nearly twice what the first box said. Funk that.

Joanie had been homesick for Chik-fil-A but another ESL below average student couldn't be bothered long enough to finish taking our order before hooting and hollering behind us for numba seex and numba toooo. Maybe it's the chemo or maybe it's hanging around all the baby boomers but man have I developed a sincerely bad case of please speak English-itis. Service settings really do demand clear communications, ya know?

My birthday wishes? A tuchus that doesn't keep me warm at night, adjustable camber plates, swaybars, and R888's for the BMW, and a normal life again. Or maybe that 1:8 scale Lego Ferrari F1 car... to go with the 1:10 scale one I built last year. :D

just a little bit more to go

I feel bad that I haven't made a post in a week but I have really hit the skids. That last bit of fight I had was all that was left and, in the end, I didn't get what I wanted. Instead, I've got more drugs to handle the side effects and they are doing more and more to make me less of me than I want, despite trying to be conservative and scientific in how I watch myself taking them.

It seems the only thing I have left with enough oomph to squeeze out any more adrenaline is anger. When I get mad, I can do anything. I crash hard for it, but I get it done. This week it will be getting a prescription filled that poor Jody got chased from one pharmacy to another and could not get filled. I'm going back to the Kaiser pharmacist and if I get one breath of how they don't want to order it because it's liquid and they'll get stuck with it, I will go mental on them. Mental as in are you using your brains back there? What do I care if you have to order it? Order it. What do I care if you get stuck with the bottle after giving me what I've been prescribed? Are my premiums NOT already covering these costs? Your paycheck? The lovely building we're in? The overhead expenses of drugs going bad on your shelves? Isn't there a board of directors and shareholders making a profit off my premiums?

Order the damned stuff.

I wouldn't be so angry except for the fact that I'm in pretty much constant pain and have not yet been able to get out of it. I have seven more days of radiation left and then I can start feeling hopeful. I've been in tears every day for a week now for one thing or another though mostly it's just that one thing. Last week I couldn't understand why people would do illegal drugs; the kind of stuff that scrambles your brain into seeing things but this week I'll take it... or at least something to knock me out until the radiation effects calm down.

I am trying hard to hold on. I am so fried I just want it to stop.

:boom:

Today was the day I'd had enough. I've been biting my tongue and laughing off a lot lately so today I fought back.

Yesterday was Doctor Day for the week and I repeated my request to see if the radiation field cannot be reduced. Dr. Linder said it was possible but not recommended for the same reasons Dr. Cheston had said it wasn't possible and not recommended. At this point in my treatment, the side effects are having a greatly increasing negative impact on my quality of life. Dr. Linder said it could be a week before I'd notice any change but also said the effects would last a few weeks after treatment was finished. I was told at the beginning that I'd be monitored and my treatment would be adjusted so today I'm cashing that chip in. I've requested that both doctors consult with one another and consider altering my exposure field so that I can start feeling better in a week instead of in four weeks. The tumor is most definitely shrinking and I feel it is not out of bounds to ask them to refocus the energy to keep hitting it and as little else as they can.

Today I was supposed to get a biopsy taken of whatever the little shadow was in my right lung on the PET scan. Emphasis on was.

Weeks ago the liver biopsy had come back negative and Dr. Lee wanted me to get my lung checked. I was told this one would be more conclusive because the surgeon would use a scope to actually look at what he/she was going to sample. The liver biopsy had been guided by an active CT scan but the surgeon then had admitted in his report that he had seen no lesions on my liver during the scan and had effectively been sampling me blind. When it came to light today that he (same surgeon) would be doing -another- CT-guided scan to sample my lung, I panicked.

I protested immediately and said I thought I was going to be anesthetized and that the biopsy would actually be taken only from a lesion that could be seen with the surgeon's eyes. "No, that;s not us. We don't do that here." Well then, I'm not doing this here either.

For starters, I was already against having this second biopsy done. It was based upon a very faint little blue blob in my right lung nowhere near as brightly shown as what my liver had been. Regardless of the results of the biopsy, my therapy would not change. I am already taking chemo as if I have stage 4 cancer so that any mets disease would be poisoned and killed before it can get going. A negative result would not reduce my chemo nor shorten my radiation and chemo regimen. A positive result won't increase them either. I will have to be PET scanned after surgery in any event. This is not to mention the hassle of fasting for another day while already weak and having to suck down chemo to make me even weaker without any food for fuel to just stay awake or walk into the hospital. This biposy was a waste of my time, a waste of my insurance benefits, a waste of the surgeon's time, and too late in my regimen to make a difference.

I apologized to the surgeon, but I told him I had no confidence he would find anything. If the cought that started this whole mess had been caused by mets in my right lung, guess what? It's gone now. I was not interested in laying awake through another blindfolded pin the tail on the Sco procedure.

Meanwhile, I now know I will be checking in to GBMC for surgery on Thursday, November 29th. That most likely keeps me in the hospital though the weekend and probably the better half of the first week of December. I also believe the surgery with be laproscopic and not terribly invasive. I will make absolutely sure of this with Dr. Grasso beforehand so that I am not surprised again like I was today.

silly rabbit...

So the FiOS guy came today and all is right with the world. The weather and traffic widgets are totally awesome though I already have some suggestions for improving them. I watched too many sci-fi shows as a child.

I was also able to very easily defeat the built-in wireless that the technician said would be impossible. Tambien, extending the "router" to my existing home network was a snap; another impossible task I couldn't do. Honestly, I think I will ask Verizon if they will replace their over-featured device with a simple modem. That's all I need it to do and all I have it doing right now... even though they said it wouldn't do it. :ahem:

I am feeling pretty good though I will drop to my knees tomorrow and beg for the radiation field to be adjusted slightly. I understand they want to shoot all of the tumor and then some, but the then some is still leaving me shaking and in tears. I have upped my oxycodone with no ill effects, but I will probably need a refill before this is over with. The round the clock pain has been diminished this way and through all of the prayers you guys have been sending up with me. I really think a small adjustment from the radiologist is not out of the question.

Meanwhile, the FiOS life is good. I need to test drive the DVR to make sure it records and then make sure it will play back on both itself and the other tuner box up in the bedroom. I know some do not like the TV guide, bu I think it looks great (esp. compared to Comcast' 8-bit low res graphics with half-cooked program descriptions). I also need to program the Harmony remote to drive the Verizon box the way it drove the Comcast box. That's the last thing on the list now that the network is hunky dory. The speed is great too... I ordered the lowest bandwidth package and it is every bit as fast as Comcast. I sooooo cannot wait to hand in those boxes and close out account tomorrow. :sigh:

update and a specific request

I owe you guys an update though nothing major has really happened. I've hit a bit of a routine now though I can tell things are changing slowly, surely, for the better, and a little for the worse.

The weekend was great. I got to get out in the garage and tinker with the BMW for a while. My pal Steven dropped by to borrow my brake tools and swap pads on his GTI. We ran into a bit of a snag as the car was being finished up that was ultimately fixed today with only some anxiety and $60 worth of taps and dies from Harbor Freight.

Sunday was equally great. Dad and I enjoyed some time out together in Little Italy to soak in some rolling Italian art from the famed scuderias of Ferrari, Lamborghini, Alfa Romeo, Fiat, Maserati, and a striking prototipo from Bizzarini. Most of Stiles Street was closed down for beautiful cars on display to help raise money for a children's school/charity. The weather was great and both of us took it easy admiring the cars. I'd like to see more of those machines on track in the future... shrinking away in my rearview mirrors. :P

Monday sucked. Not as badly as last Wednesday, but it was not a good day without much effort. It was Doctor Day again and I got to meet with Dr. Cheston. I gave her an update on the progress I can feel is happening. I also got to deliver the plea I'd been rehearsing in my head since late last week as one particular side effect has grown steadily worse. I've had some very specific pain that I was hoping... begging... could be mitigated by possibly adjusting the exposure field.

This leads to a specific prayer request I'd like to put out there. You see, the radiation field has to necessarily be broad enough to fry the tumor but also cook anything spreading. They're cutting it as close as they can but, and I hate to be graphic, they're also hitting my anus. The skin is very sensitive and the therapy is very much like getting a bad sunburn. I've had to try keeping the skin down there in good shape with moisturizer and topical cream the radiologist has recommended. The cocoa butter regimen did nothing to help and I'm afraid may have acted like tanning lotion instead so I am -not- using that again until I'm done with the exposures. Meanwhile, I've been feeling like someone put a hot bbq coal in my shorts and has been feeding me buffalo wings and vindaloo morning, noon, and night. Razors. Fire. Hot lava. And yeah, I'm not trying to be graphic.

So yes, I really want to pray for some relief.

I've been given Oxycodone and am giving it a try this evening. So far so good and the constant pain down below has improved. It's still there but it's not thumping with every heartbeat. My bathroom visits are still bringing me near tears and leaving me a little shaky. I've also got a 'script for good old fashioned hydrocortisone suppositories that are gross but hopefully helpful. Three more weeks downhill from here are really making me worried. :(

two down, four to go

I'm sorry I left that last post hanging there at the top for too long. I have been really really tired and my fuse has been shorter than Hurley or Bailey's tails. It is clear to me I need to spread out the things I have to pay attention to so that they don't pile up on me like that.

Thursday was better as was yesterday. Without getting too graphic, the therapies are working and I'm a lot more 'regular' though I've got some side effects to contend with. Women whom have delivered babies recommend cocoa butter for the dryness and cracked skin and I am giving it a try.

Meanwhile, a small collection of tools not belonging to James came out of his toolchest yesterday and will be returned to Induktion asap. Hopefully they have not been missed this week. I need to get my toolchest out of the car too and make sure all of mine came home with no extras thrown in. I may try to get the heater core out today too since it looks like an easy pull.

venting

It's 3:20am and I'm up because I woke up remembering that I hadn't taken my Xeloda last night. I turned on the laptop to check to see if I should take them anyway but Roche says no, just get back on schedule and tell my doctor.

Yesterday sucked so bad. I couldn't wake up and folded early letting Jody drive me to radiation. I had enough sense to take my pills with me for the wait in between while we had a bagel, but then left my phone sitting at the Bagel Bin. The 1" Power Port needles were all gone so my first genuine use of the port didn't happen. I wound up giving blood samples out of my left arm any way and wondering why they hell I even got the damned port. I'm not taking drip chemo (which I should be thankful for instead of bitching) nor do I have to carry a pump like other people.

We managed to get Jody's truck dropped off and within the hour got the obligatory are-you-an-idiot call from Mr. Tire claiming they "noticed" the truck needs over $600 worth of front brakes. Even in my sleepy stupor I'm not that stupid. I told the con artist for that kind of money I can put five sets of brakes on that truck and he was NOT authorized to work on the brakes. I swear, I want to scream at someone for this. It's Mr. TIRE, dumbass, not Mr. BRAKES.

This is of course while I'm trying to sleep but can't fall asleep and Verizon might be showing up. I checked again because I was sure they were a day late and should have come on Tuesday. I WAS RIGHT so I called Verizon to find out why they had missed their 8am-5am window for the original re-schedule. Jody had been fielding calls from some tech who said he would need to get inside the house to install boxes... but no fiber had been installed. I explained this to the schmuck on the phone that until a FIBER was actually buried in the yard, no tech would be able to install anything... a day late or not. Was a MONTH not long enough since the order had been placed to get this done? Get it done today or consider this order cancelled.

Within two hours the yard was filled with Verizon subcontractors, none of whom spoke English. To their credit they had the fiber under the street and buried in the yard with a very clean box at the edge of our yard. Comcast could learn a few things from these guys.

This is followed by a 4:30pm wakeup call from Verizon techs at the door who want "four to six hours" inside the house. I'm nearly broken down at this point and I explain I do not have the energy to let them in and corral the dogs. Can they just leave the boxes for me to plug in? No. They have to install stuff in the basement and blah and blah and blah and I just ask if they can reschedule. I explain I'm on chemo and I'm dead right now and I just don't have four to six hours of anything to give them... and that four to six hours should be scheduled to END within their ridiculous 8am to 5pm window. They say they'll come back tomorrow (today) but we've got another email scheduling us for install on the 30th.

A month and a half? That's how long it's going to take from order to actual service?

I've had it at this point and I collapse back in bed and just cry for half an hour. The dogs don't know what's wrong with me and I feel like crap. Meanwhile, I've left a burner on down in the kitchen, thankfully without a pot on top of it. Jody gets home, finds this, and I just cry even more. Now I'm afraid I won't be able to cook for myself if I'm home alone. I'm losing my mind. :'(

a very good day

I spoke too soon about the FiOS line, but that'll get worked out.

Meanwhile, the BMW was treated to a dozen guys poring over the suspension and brakes for a whirlwind makeover. She must have known what was coming though, like an excited puppy, she wet herself springing a coolant leak in the heater core -and- a fuel leak from above the fuel tank. The guys took on the jobs for the day and transformed my dust-collecting hulk into a near track-ready Q ship. There are still things to do, but those are for me once I get well again. :oh yes:

Here are some action photos...

C'mon, Sco! Make some engine sounds!

Normally I wouldn't notice, but just watch what happens to that wheel gap...

And they're off... the car is hoisted high and major suspension surgery begins









Ready to roll! (mostly)

Do you think I look happy?


My most sincere thanks to James and Jeremy for rallying the troops within hours of me emailing my bad news and asking if anyone would take the car off my hands. Ed Fuhrman is a gentleman and a scholar for opening the doors of his shop, Induktion Motorsports, and letting my pals use the space and the lift. Said pals were David, Mike, Steven, Matthew, Ian, Steve, Jason, Yun, and Anand. I know there were others who couldn't make it for various reasons but your encouragement was felt just the same.

You guys have no idea what keeping this little car means to me. I am forever in your debt above and beyond the free point-by coupons you'll be getting for events next year. I really love you guys and you are each a testimony to selflessness I hope I can measure up to. I hope you had fun or maybe learned a little about something you may have worked on. I look forward to seeing you guys in the paddock from behind the wheel once again and for a long time to come. :sniff:

BANG!

Well more like :whump: but here I am on my last day of work. I got rear-ended... in my car, thank you... on my way home from Day Five's morning radiation treatment.

First things first, I am okay. I was shook up to say the least but the dude who hit me was so sans clue. He just wanted to apologize and drive away.

I was having none of that and immediately asked for his insurance card. He didn't have one. Can I see your license? It's from Georgia. The tags are from Maryland. Great. I try my hardest to scratch down his name and identifying info while calling the police. They're sending a car so I quickly light up my phone to take some pictures. I hate camera phone pictures but something is better than nothing; especially since this guys has nothing to show me that he's insured. He wants to move his car and keeps asking me what he should do. I tell him he's free to do anything he likes but I am not moving until the police arrive. He follows my lead.

Ultimately one of Howard County's finest arrives and it is clear who hit whom. The cars are scratched up and my plate cover is smashed but we've seen worse on city cars barraged by parallel parking mishaps. He is insured and the MVA registration reveals the company and policy number. I call when I get home and they're taking full responsibility. :whew:

I did change all my outgoing messages to long term yesterday before I left figuring I would spend today downloading a lot of experience with one piece of code to the fellow whom is picking up after me. I called him and we had a quick chat about what's what and agreed I'm just going to stay home today until the shakiness wears off. Meanwhile, my next post won't be brought to you by Comcast... we're anticipating a visit from the Verizon FiOS guys sometime before 5pm today. :D

riding the waves

I've never learned to surf but I cannot imagine the very first surfer just grabbed a big plank of wood and was immediately shooting the curl on the first try.

Tuesday I tried to be a good soldier. I got out of bed early enough to get a good breakfast and space out those pills again and be on time for my second official day as the hotdog in the microwave. We got off a little late for the unknown amount of traffic into town but no harm done. Zap and another round of giggles from the regular morning technicians for the same Mr. Scofield, no call me John jokes. I told my sister I need to get some new material to keep top billing.

Afterwards, Jody had not had any breakfast for herself and we had a bit more than an hour wait to see the oncology nurses to have my little port flushed. Dr. Grasso had strongly suggested it the day before on pain of having to remove a clogged port and do the whole thing over again. Quick, get me to the oncologist! In that hour wait we visited Dunkin Donuts to get a coffee for her and a Gatorade for me; just in case the heparin flush left me with a bad taste. We endured the smells of burning something and rather lacklustre coffee and got the heck out of there. I was getting more and more drowsy by the minute and wondering if this was a good schedule to try to keep if I hoped to continue working.

Turns out that yesterday's altered schedule worked better. Instead of breakfast beforehand, I got nuked first then came home to eat and poison myself figuring I'd rather get sleepy at home than on the road. Jody had to go downtown very early and we'd not arranged for anyone to drive me instead so I drove myself. I was fine all the way through. Breakfast late (~8:30am) actually charged me up and I was feeling very good by 9; even with the pills on my stomach. No nausea but a little reflux from Monday before but otherwise raring to go.

Tuesday had been an emotional day to start with. My thoughts often wandered to my friend Mark and his friend Linda whom we had met for dinner in Manhattan the night of Sept 9th, 2001. She was lost in the towers on Sept 11th and she is my most personal reminder every year.

Tuesday was also when my pal James had vowed to pound out the work to get my BMW back on the ground. I was riding these waves of physical and emotional pain all day only to hit that perfect wave of happiness right before bed. Jody said I looked the best I had in days as the car methodically came back together. It lasted through Wednesday and is boosting me still this morning as I write this post. Thank you, James. :)

Yesterday I dusted off old friendships and found them just as warm as always having lunch with several of my oldest friends from work. I'd needed to share the news with these guys too but there was a very surreal kind of hiccup to carefully plan my way past. I don't want to go into detail here because the hiccup is fantastic and strange and wonderful and very very private for a family I care very much for and this just isn't the venue for it. Suffice it to say I really did not want to share my news with them while they are in the midst of what's happening around them but I firmly believe, still even, that this is all happening for a very good reason and as part of a very perfect plan for all of us.

Dinner went down smooth and the reflux is better this morning. In an hour I'll be on my own long board of sorts ready for today's waves. Microwaves that is.

Ba dum CHEE!

Perspective

Today rather sucked as my days have gone by lately. I may be able to chalk a lot of it up to anxiety because Lord knows I woke up more than nervous.

I made a few slices of that peach crumble bread as toast, grabbed a bottle on Ensure, and a tall glass of water... to go with the four Xeloda pills. I spaced the out as I ate but only after staring them down and praying hard that I could do this.

I looked at them in the little Pyrex dish I used to keep my hands off of them. I'm afraid of handling them too much and passing their poison on to Jody or the dogs or someone else. I told them, "Okay, you're going to make me sick. But only so much." Jody woke up and I went to the top of the stairs to just hug her and cry for a bit because, well, I'm scared. I'm more afraid of the pills because I know I could just flush them instead of taking them. But if I do that, I will not get better. I have to get worse before I can get better.

A few hours later Jody and I arrived at the radiologist for my first radiation treatment today. That went okay with just a slight hiccup on when I would actually get my first treatment. The Xeloda was sitting just fine and my sense of humor was back. The technicians kept addressing me as Mr. Scofield, Mr. Scofield, and I finally said, laying prone on the table, "Listen, my pants are down. You guys can call me John. Okay?" That got a few laughs and I endured an itch on my ankle for... ev... er...

Jody took me to lunch at La Madelaine and I ordered too much. A little more than half a French Dip sandwich and a cup of soup went down easy but got me pretty tired by the time we got back home. The plan had been to split up and go to work.

But we called Dr. Grasso's office for some more advice on caring for the incision and the port. We could drop by any time and Jody did not want to get caught i rush hour traffic. As I went for the door, a wave of nausea struck me and I figured, this time, I'll take one of the pills I've been prescribed for this. Maybe the Xeloda isn't all that great after all?

Big mistake. The Compazine knocked me silly. I tried to ride it out in the truck but I was mroe falling asleep than not feeling ill. By the time we reached Dr. Grasso's, I was falling asleep in between steps. They got me back into the exam room and Dr. Grasso checked me out. The incision is not infected (a big worry) and the liquid skin stuff will come off on its own. My blood pressure was a little elevated and my heartrate was 100... he reckoned between the medicines and the anxiety that I'd worked myself up pretty good. Message received. Chill.

I prayed and dozed on the way home and crashed. I got a call from my pal Steven whom schemed his pal Nate into coming over this afternoon and sparing off the wheels on my car. Now I can drive in the rain safely. The summer tires coming off the front of the car are nearly done though the rear tires are in very fine shape. I should have rotated them between track days earlier this year but I seem to remember being really tired at those times...

The second round of chemo is down the hatch so Day One is complete. I think I may need to grab a small bag of black licorice instead of the Compazine to fight off any nausea. At least until I go to full time off and can afford to be wiped out for a day if I have to resort to the Compazine again.

I'd whined earlier what Day Fifty-Nine or Sixty would be like if Day One was this bad. However, I have two good legs and a faithful spouse on my path; two things I've learned two others whom I used to be close to no longer have in their lives. So I need to remind myself that this -is- my path and that it has been fortunate to not have been dragged on far longer than need be.

goooood karma

I'm a hair overdue with my thankyous for some really cool gifts that friends and neighbors have brought by to help cheer me up. They're working, I promise, so um... keep them coming! ;)

First up is Kim and company's tres cool bonsai California wine grape vine. I was totally not expecting this and I've endeavoured to keep it watered every day just as its instruction sheet directs. Is this awesome or what? I reeeally hope it offers up some bonsai grapes next year... that would be so cute!














Next is a little bushel delivered by Mina and her daughter Sophie today. It is filled with a tub of peanut-butter cup brownies, two bags of spicy snacks, a bag of peach gummis (Mmmmm!), a bag of candy corns, a jar of sugar-free Cherry jam (loaded with cancer-killing pectin!), and a loaf of peach crumble bread I intend to toast to help the chemo go down.

Last but not least is Clarence's gift to soothe my inner rock star; a copy of Guitar Hero II for XBox360. He came over unexpectedly the night before the port surgery last Wednesday and had this big giant box. Inside was a guitar controller and the videogame that plays a lot like Dance Dance Revolution; hit the notes as they appear on screen and 'strum' the guitar to play. I thought he'd bought himself the game and was giving me a go but then I remembered he hasn't got a '360. I asked him why he bought it and he said he thought I would enjoy it. :P I've air-guitar'd for decades so I should be a natural.

Ow still.

I just looked back at that previous posting and noticed what time it was. Shortly thereafter the painkiller rejection started. The bottle had one of those little stickers on it that said, 'take with food if nausea occurs.' Well, it occurred, and occurred again, and again. It was like someone had a big button connected to my stomach. No amount of feeling it coming or breathing my way through it helped.

So the painkillers were no longer helping. Looking up the ingredients, the bulk of the pill was good old fashioned acetaminophen; Tylenol. So I switched. By Friday evening, the swelling had tacitly lessened though the pressure and ache were still present.

Friday was punctuated by another nasty phone call from the radiologist' resident paperwork nazi who claimed she didn't have my referrals for treatment. I explained this was taken care of a week ago and that -all- of the visits had been approved. I hate arguing with idiots and I wished I'd just reminded here -again- to call my case manager; a resource I'd given them from my very first visit. I'm still ticked off enough to plan to raise the roof on Monday if there is any question when I make my first treatment visit. I do not intend to leave this lady's rude broken-English hassle lay. Communicating clearly and politely ought to be a requirement in her position.

This made for a lengthy Saturday with a few downer moments. It's only been a few days since Lockheed told me to cut my hours and while I disagreed, I hate that it looks like I will need the time off sooner than later. Getting in and out of my own car was a small test on my sloped driveway. Knowing the tires need to be swapped but knowing I can't do it felt crummy too. It's leaving me feeling like the cancer is allowed to take and take and take away from me and I can't do anything about it. :(

Btw, the above pic is what I look like when I'm trying to appear my most weak and downtrodden. The smirk gives away that I am trying to look like I feel bad but am really just feeling bummed out. ;)

For the record, the incision and my smirk are about the same size. What you cannot see is the contour of my chest below my collar bone that has changed. Aside from the swelling where the sickly yellow bruise is there is a nice bump where the port now lives more toward my sternum. It's about the size of a Dove Chocolate Miniature with three little bumps on its face to help locate the squishy part for needles. As the swelling and the pain have gone down, I've poked around it while reading the collection of literature it came with. Imagine that; me reading the owners manual. One nice thing I noticed almost by accident is that my seat belt does not squash the little guy. If we still happen to be attached to one another by the time I can hit the track again, I don't think I'll have to worry about high braking g's. :D