Stage IV Cancer

2011-08-19T12:59:00.000-04:00

Got topped off with 2 units of blood Wednesday.

Crazy infection will not stop

2011-07-25T11:51:00.001-04:00

But we are gettiing more info with a CT scan and they will tweak the plan based on what they find and all the other tests. If they poke a hole where one shouldn't be, well, I'm just happy to have made it this far. Love you Sheila! And love to anyone out there reading this. No fear.

Perforated Bowel

2011-07-19T15:38:00.006-04:00

So, I have a LOT to catch up on (sorry folks), but I have to relate the latest that took place over the 4th of July weekend. So that Friday, I get a PET scan. We had been doing chemo and it was about time to take a look. So we did the normal procedure with little fanfare and I go home.

As is NOT her typical behavior, Sheila decided to NOT monitor the results. She just wants to have a normal 4th of July weekend like any other wife. If there was a problem, the docs would contact us. We expected nothing too dramatic and thought we'd review the scan Monday morning.

So, on Sunday morning, we are getting ready to go to brunch with the family. We're all dressed and about to hop into the car, but we have a couple minutes down time before actually hopping. So, I decide to check my voice mail on my cell. "Mr. Scarbrough, we have some serious results about your PET scan. Please call us immediately at this number". Shit! What's going on. I call the number and of course, because it's the weekend I get the answering service whom are next to useless. Sheila jumps into action and logs on. She checks the result. It appears that I have a potential bowel perforation. Damn. This is horrible news, but it is somewhat dulled by the fact that I feel just fine. Have been eating & drinking for the last 2 days without an issue. Hmmmm. So we have a number of problems here.

#1). How the hell did we end up with a "5 alarm" problem and a "1 alarm" response (message on voice mail.) Both Sheila and I were pretty livid about that. But the more important issue was:

#2). Do I have a bowel perforation or not?

I was afraid. We've talked in the past about how people eventually die with bowel cancer and the sentence usually goes like "Well he got a bowel perforation and then..." without the dead part being said. I was really scared.

Sheila jumps into action and makes some phone calls. Apparently some of the guys there had heard about my result and were open to the idea of my coming in to verify it. Hell yes, let's verify it. So we scuttle the brunch plans and head to the hospital. Again.

I'm telling folks now that I'm a professional patient, I've been in there so much. But back the the hospital. I arrive and everyone is amazed that a "bowel perf" patient looks so good. Thank you very much. They wheel me down to X-Ray and do a series of scans (both standing and prone) and then wheel me back up. Right now I'm NPO since IF there is a bowel perf, something will need to be done about it. Not to long after that, the doc comes back with the results. It appears that there is NOT an obvious bowel perf that needs immediate treatment. Yay, yay, yay. Now that we know it's not a full-blown bowel perf (pun intended), what the heck is it??? Theories get bounced back & forth (medicine is not an exact science) and we decide that perhaps this was a small bowel perf that spewed a very small amount of materiel before healing itself. Yeah, it sounds whack but it was the best we could think of. This might explain the recurrent infection I had been having and perhaps, based on the location, it might also explain the sciatic nerve pain I had been experiencing the last month. Well, well. Maybe it does make sense. Or not. Anyway, that's what we're going with now. Treat infection with antibiotics until gone, treat pain as needed and hope that the "bowel perf" never comes back.

Stent Internalized

2010-12-22T12:38:00.004-05:00

The Monday after we got back to Charleston, we had an appointment with our IR (Interventional Radiology) doc for another stent swap. We chatted about removing the nephrostomy tube and he agreed that it was a reasonable plan.

For those of you just now tuning in, I have what seems to be a somewhat "mushy" tumor in my ureter (where it connects with my ileal conduit). Doctors have placed a "double J" stent that goes between my kidney and ileal conduit so the tumor doesn't block any urine flow. The "J" is where the stent makes a little curlie-q (with holes) for the fluid to enter/exit. To "get" to the stent and to provide a "backup path" in case it should get clogged, there's an extra tube that goes from the kidney out my back to a connector (which is normally plugged shut unless we need it). This is the nephrostomy tube. If the ureter became completely blocked, we'd use this for drainage.

The stents have been working fine for several months, and the nephrostomy tube adds some additional chances for infection (and it's a hassle! Cleaning every other day and poking you in the ribs when you roll over sleeping) so our docs said it's time for it to go. We agree!

So Monday, our IR doc does the swap but this time without the nephrostomy tube (the stent is still in but all "internalized" now). For the next swap they will have to go in through "the front" (through my urostomy/stoma). This is one instance where my new plumbing is making things easier. Going through the weenie would NOT be fun. Everything went according to plan, my good friend nurse Joy provided a lovely level of sedation and I no longer have a tube hanging out of my back. Yay!

A few days later (Sat. Dec 18th) I woke up with a temp of 101.6. Looks like an infection. This has happend before and we had a pretty good idea that it was a UTI. With the ileal conduit, UTIs are pretty common and they had just been in there last week. We called the doc on call at the hospital and he prescribed some antibiotics (good ol' Cipro). They kicked in pretty quickly and the next day I was already feeling better. It will just have to be one of those things that we keep an eye on.

Feeling pretty good on the plan for keeping my plumbing in order. Things could change, but the internal stents are working pretty good for now.

For the cancer, we're still waiting to hear the exact plan from our Texas docs. We'll ping them in a few days to see what's up. Hopefully it won't be too yucky, but chances are it will be :) Until then, however, I'm planing on having a fun chemo-free holiday. You too!!

The Plan (version 42.b)

2010-12-08T21:47:00.003-05:00

Had a CT scan yesterday. Along with scanning the lungs they did a special version that took a close look at my urologcal system. Special barium drink, extra IV fluids & special timing on the scans. Had a fair amount of contrast but drank LOTS of fluids afterwards to flush everything out.

Today we met with our two main docs, my primary oncologist and main urologist (that was involved in my surgery last year). The CT scan basically confirmed what we already knew. Cancer has spread to a few small spots on my lungs and is trying to block my ureters. Our main oncologist basically suggested that the best way to move forward is with a "systematic" approach (which means that since the cancer is in multiple places, chemo is the best course of action). Sounds reasonable. He's going to take one of my existing cancer samples (from last year) and do some genetic testing on it to see if there is a particular chemo that might be more effective than the "standard" chemo used. Finally, we're starting to see "customized" care for cancer treatment. Not sure what he'll come up with, but this IS the future of cancer care.

Our urologist was very hesitantant to recommend surgery and agreed that the best thing for my ureter was to continue to keep it open with a stent and see if the chemo helped. The stent is sort of a "band aid" solution, but it will work and will be MUCH less invasive than a surgical (or "stainless steel" approach as our other doctor calls it) procedure. We can use a different kind of stent that will be all internal, so the hassle-factor will be reduced too. Sounds good to me.

So the bottom line is nothing super-radical, but we can "kick the can down the road" for another 6-12 months and then see what happens. Depending on the chemo that we go with, it might produce some significant results (stay tuned). Eventually we're hoping for some SMC (Super Magic Chemo) that will kill this stuff once and for all, but until then, this should keep us going.

All in all, we have our Texas docs back in the loop and have a pretty reasonable plan. It involves some chemo (which may not be all that much fun), but should give us some "mileage" on down the road.

Looking foward to heading home tomorrow...

Back in Texas

2010-12-06T11:13:00.010-05:00

We're baaaaaaaaack!
(Jack Bauer "24" voice): Previously on Mark's body

So we did our big surgery last year (Aug. 2009) and it was a big deal. Recovery was significant with new plumbing and a chopped up leg... Hopes were cautiously high that, perhaps, this could give us some pretty good mileage towards a recovery.

So we were pretty heartbroken that in March 2010 (14th to be exact) my CEA started its upwards climb once more. "You have cancer" again. It was still too low to really do anything about it, but we knew that we'd be doing "something" in the coming months.

So in June or so, we were doing a CT scan to see if we could find out where the cancer was "hiding" and the docs noticed that my right kidney wasn't draining properly. No cancer was obvious (yet) but the right ureter was getting clogged up. Lovely. Just what we need on top of all the cancer stuff...

So it's time for some new tests! First we did a "loopogram" where they try to see what the "flow" is from the outside in. So they get you on the table (no sedation needed for this one) and squirt some contrast into my urostomy stoma while I'm under a low-level x-ray. The liquid went up the left side, but the right side, not so much. This confirmed what we saw on the CT.

A couple days later, we did a nephrostogram where they inject you with radioactive stuff and follow the "flow" from the inside out. No sedation necessary for this one either. You get injected and basically lay on a table for an hour or two while sensors see what's going on. If it's not moving as quickly as they want, you get some Lasix to move things along. The results again confirmed that there was a pretty significant blockage (not 100% but getting close).

So the fix for a blockage in your ureter is to put a plastic stent in. This procedure does require "moderate sedation" and they poke a small hole in your back, and thread the tube through that into the kidney and then continue through the ureter. You feel a little sore for a couple days and there's a significant risk of infection. Also the stent needs to be replaced every 4-6 weeks, so for me, they left in the back-tube to provide easier access for the next time. So now, along with my existing "extras" from the surgery last year, I have a small tube taped to my back. It's a hassle, but at least it's saving the kidney!

Meanwhile, back on the cancer front, it was time to start another round of chemo! Yay! In July we started Irinotecan & Xeloda. Irinotecan makes my hair fall out. After the second go round (4 or so weeks after starting) my hair starting coming off in the shower pretty significantly. I didn't want to have that classic stringy/thin/patchy chemo-hair look, so I shaved it all off. Bald again (just like in early 2009). It was really just getting to the point where it was starting to get kind've long. Oh well. People tell me they think it looks good and whether it's the truth or just trying to make me feel better, it does (make me feel better).

So the Irinotecan/Xeloda treatment isn't that much fun. Hair loss isn't a big deal for me, but the nausea and the hit on your immune system is significant even with all the anti-nausea drugs (that DO help, but not 100%). After one of my stent swaps, I developed a UTI. Since I was now "immue-compromised" (with a pretty low white blood cell count) it was important that we "nip it in the bud" so it didn't get out of control. Infections while on chemo can be very serious (and even kill you!) We went to the emergency room and they hooked us up with some antibiotics that started working pretty quickly. I didn't have to spend the night in the hospital, but it was a close call. Since then, I've gotten another UTI and some quick response with antibiotics worked again.

So we we're in the groove with our monthly stent swaps, but we still didn't know exactly why the ureter was getting blocked in the first place. The top two candidates were cancer (of course) or possibly some scar tissue forming there from the surgery (which is a relatively common side effect). We were hoping for the later. We did a PET scan and that didn't show any significant cancer anywhere. That was sorta good news. Good because if there was cancer, it was too small to be detected. Not so good, because we knew there was cancer there (CEA had been rising) and we couldn't find it!

On the last stent swap in October, our Interventional Radiology doctor did a "brush biopsy" in the ureter to see if he could detect any cancer there which may have been causing the blockage. The test came back positive for cancer. Not the best news, but at least now we knew what we were dealing with. At about the same time we did another CT scan, and this one showed a spot in the liver that (after a biopsy) turned out to be cancer. The scan also showed some "spots" on my lungs that are also most likely cancer. So at this point, it looks like the cancer has spread to my kidney ureter, my liver and my lungs.

Around this time, my CEA was coming down from the chemo (yay) but it was also hurting me significantly (UTI and continuing weakness), so we decided to give my body a rest and stop the chemo for now. Even though we knew there was more cancer out there, the current chemo wasn't containing it all. Time for another plan.

The easiest to deal with was the liver. It was just one, small little spot. Rather than do surgery (and risk all the normal surgery complications) we decided to do RFA or "Radio Frequency Ablation". They stick in a needle in your side, poke it into the liver, run you through a quickie CT scan to check placement and when the probe is exactly where the tumor is, they activate a transmitter on the tip and literally fry your liver from the inside out. Ouch! Fortunately we did do full on anethesia for this one. They cook the tumor and "margins" and they remove the probe. Side effects are relatively minor. I was pretty sore for a day or two and you get "flu-ish" symptoms for a couple days as your body attempts to deal with the dead meatball in your liver. Compared to surgery, it seemed like 95% of the good effects with about 5% of the hassle. Pretty good "bang for the buck". We did the RFA procedure in November. At least we took care of 1/3 of my cancer!

Now we still have the clogged ureter (with cancer) and the spots on my lungs. This is why we are now in Texas. We're doing another loopogram and CT scan tomorrow and then talking with the doctors Wednesday. Hopefully they will come up with a plan!

Recovery

2009-12-11T08:44:00.000-05:00

It's been about 3 and a half months since the surgery. So far things
are going pretty good. I'm doing physical therapy for my leg 3 times a
week (highly recommended) and I even signed up for a 5 week "adventure
challange". This week we did rock climbing (I got to the top of the
tower twice! - even with my weak leg) and (today) swimming. I did about
20 minutes of laps and my knee felt pretty good afterwards.

2.5 weeks at home

2009-09-23T20:24:00.002-04:00

Getting better and stronger every day. I walked 2 (two!) blocks around the neighborhood. And these are BIG blocks. Later I was in the backyard and fell down. Oops. The grass was soft, but it reminded me to be careful!

Home Sweet Home

2009-09-06T10:25:00.002-04:00

The flight home was relatively uneventful and we're back home in Charleston!!!! Got in around 10:30 PM and my brother picked us up. Mom was in the car too. When we got home, everything appeared in order and the dogs were VERY happy to see us. Played with the dogs some, took a shower and went to bed. Both of us slept very soundly. No street/city noises going on all night - very peaceful. Since I slept all night, I missed my 3 AM pain pill dose. At 9:00 AM I sure could notice it! The right leg (where they harvested the muscle) is still pretty sore. We'll get hooked up with the pain management guys at MUSC to work out a plan. I'm sure it will get better over the next couple months. Still a little unsteady walking as well, but I'm sure that will get better too. Anyone know of any good exercises for someone missing a rectus femoris? We'll figure out a way to do some "easy" squats and work up from there. HAPPY TO BE HOME!!!!

THANK YOU to everyone that has posted and supported us through this ordeal. Reading the blog posts, getting emails and knowing you guys are out there thinking & praying for us has been an amazing source of strength for us. It has truly helped my recovery and means so much to Sheila and I.

FYI - We'll keep posting here occasionally, but don't expect any more daily updates!

Almost there

2009-09-05T19:58:00.000-04:00

In the plane now about to takeoff! Yay,yay,yay!

airport

2009-09-05T18:53:00.001-04:00

Made it to the airport. Sheila's dropping off the rental car and then
we do the stupid human tricks... I wonder what they will think of the
plastic container hooked up to a tube in my knee. I'm pretty sure it's
too much blood to carry on. We will see... That's not including any
fluid taped to my belly either. Both bags are pretty empty now, but I
have been drinking a lot of water.

On the way

2009-09-05T17:13:00.000-04:00

It's sort of early but we haeding to the airport. Yay!

Operation: escape Houston - part 2

2009-09-05T16:08:00.000-04:00

We got to the bookstore just fine. After about 30 minutes of browising
I noticed the the urostomy seal had broken. Dang! Those things are
supposed to last 5 days or so and it had only been 2. Fortunately we
had our "emergency backup" equipment handy and after 20 minutes of
cleanup, I had the new appliance on. A quick trip to TJ Maxx for new
shorts and we were back in business

Operation: Escape Houston

2009-09-05T12:57:00.001-04:00

OK. We are all checked out of the hotel. Check. We got our flights
arranged for 7-ish tonight. We need to kill some time before then.
There's a bookstore nearby that should be a good hangout...
Last night we had sushi at our favorite restaurant. Walking to the car,
the pavement was uneven and my leg "blew out" and I fell down. Ouch.
Fortunately it was a relatively "controlled" fall and I didn't bash
anything too hard. I did bend my leg and it's a bit more swollen today
but it appears I can still walk on it. Got to be careful while my leg
muscles are still learning to compensate for the lack of the one they
took out. Charleston, here we come!

dern airlines

2009-09-04T16:14:00.002-04:00

We will be coming home tomorrow. Although there are six seats available tonight, Continental could not change our reservations without a 400.00 fee. I bought my ticket 3 weeks before Mark bought his, as we initially planned for him to drive. His condition worsened to the point that we bought his ticket about a week before he left. His ticket was 415.00; mine was 385.00. This put me in the "W" class and him in the "H" class, whatever the hell that means. So, since I don't have the same class, I would have to pay an extra 400 bucks. As much money as we have been going through, we can't afford that.
So, one more night in Houston. I really can't bitch because Mark has done so well. It's disappointing, but not the end of the world. Trouble, Einstein-we'll see you tomorrow.

MD visit

2009-09-04T15:09:00.003-04:00

The doctor's visit this morning/afternoon went fine. Dr. Skibber gave us the okay to return to Charleston! Yay! We have to come back in one month for a follow-up and to remove the last of Mark's stitches that stay in 6 weeks, but everyone in the clinic was thrilled with Mark's progress. The plastics people removed one of the drains in his leg, so there is only one left. That will probably have to stay a while, because there is still significant output. But, overall, we are very pleased. Next step: getting on a plane. The flight tonight is "sold out" although there are some seats available. Sorta. The seats available are "premium" seats that we can't exchange our tickets for. The travel agent at Anderson encouraged us to call Continental this afternoon and see if they have released those seats. If so, we come home tonight. We do have reservations on tomorrow night's flight, so worst possible case we'll be in our beds tomorrow night. I really, really, really want to come home tonight. It will depend on airline logic, so anything goes. We'll post again this afternoon to let everyone knows how this goes. Family in Charleston----we may be looking for a ride tonight; we'll call you later.

No news is good news

2009-09-04T12:03:00.001-04:00

Sorry about the lack of info the last two days. We've been in the
hotel, using the treadmill for exercise and resting. Yesterday, we did
a trip to the mall and both got a haircut. Then dinner at PF Changs.
Right now we are in the dr.'s office waiting for Skibber to arrive.
He'll have the final say on when he thinks we're ready to come home...

Progress

2009-09-01T21:03:00.001-04:00

The hotel has a treadmill in the gym downstairs that I have been using
for leg rehab. I walked over a half mile today! Yay!

If it's Monday, it must be a new hotel

2009-08-31T17:06:00.002-04:00

We could only stay at the Rotary House one more day, so we're back at the Extended Stay Hotel nearby. For any folks that what to send any thing snail mail, the best bet is 1160 Tidal View Lane. Things are moving quickly here and we're not exactly sure where we'll be. We should be having a followup appointment Friday and probably a couple others before then as well. We'll see what the docs say on Friday and go from there. I still have two drainage tubes in, but those are easy to remove (once they stop draining). Right leg is still pretty weak, but I'm walking on my own with only the occasional "blow out" (wobble, but not fall down). Sheila, of course, walks with me each time - side by side. I really don't know what/how I could have done this with out her.

So this morning we did a shower (first time out of the hospital!), and had a nice breakfast at the hotel buffet. Then "pack it up" for the big move (3 blocks). Sheila picked up the car, came back, picked me up and away we went. Fortunately we were able to check in early to the new place. Took a nap. Had a late lunch... Did a 20 minute walk. And that brings you up to speed. We're pretty much done with all of our major "milestones". I didn't get an infection. Systems "woke up" as expected (more or less). I can still walk. Kidneys didn't take a hit. There wasn't an unexpected "leak" somewhere. We feel very fortunate to have made it through. There was a small rough patch (that didn't feel so small when you're in the middle of it) but we MADE IT!!!

Interesting story: On Friday, our doctor was in the room and he said that he thought we were doing we'll and had "turned the corner". It was raining outside. Moments later the Sun came out and Sheila snapped this picture out the hospital window. The rainbow goes right on top of the hotel we were staying at.

NEWSFLASH

2009-08-30T10:47:00.000-04:00

We are getting discharged today! Docs say my recovery has gone great
and I'm ready to get out of here. We have one more night at the Rotary
House, so it will be relatively easy to get there. The urology guys
will pull the stients today before we leave. They pulled the abdominal
drain today, and should pull one of the leg drains, so I should have
only one tube (the other leg drain) leaving the hospital. Yay. Getting
out of here. The other major thing is learning how to walk again, but
that's getting better each time we go out.

Mark's back

2009-08-29T15:00:00.001-04:00

Hey everyone! Starting to feel human again. Let me tell you, that was
a ride. Tuesday night was pretty dark. Systems not working, pain in
the leg, abdomen swelling, remembering the pain of NG tube insertion,
feeling about to explode from the pressure and not sure what to do... I
was depressed! But, we went with the tube, the nurse was very skilled
in putting it in and it relieved the pressure right away. We decided to
focus on "walk it out". That was about the only pro-active option, so
that's what we did. Each walk, I focused not on the pain or soreness,
but that by walking we were going to move forward and keep getting
stronger and take control. Screw you cancer, screw you. Look's like
it's working. Yay. Feeling soooooo much better than just 3-4 days ago.
OK lunch just got here, so I'm out of here for now.

possible discharge?

2009-08-29T11:05:00.003-04:00

Mark ate his first real meal this morning for breakfast. Of course, we are talking hospital food so "real" probably isn't the best description. But, he's past the juice and ice phase. In fact, the surgical fellow was in this morning and we're looking towards discharge from the hospital tomorrow. He's come a long way in the last 24 hours since the ostomy started working properly. He still needs a walker, but we hope that will only be needed for a few more days. All in all, things are going great.

steady progress

2009-08-28T11:05:00.002-04:00

Here is a picture of Mark from last evening, right after the nose tube was removed. He's a happy camper without that thing. The colostomy is starting to do its business, so we think we are past the problem of the ileus. Mark walks every two hours for at least 10 minutes and is getting stronger every day. We will be in the hospital at least through the weekend, but ---knock wood----things are looking up.

2009-08-28T11:00:00.000-04:00

slow progress

2009-08-27T11:38:00.003-04:00

We are moving towards removing the NG tube. First step: gravity drainage instead of suction. We did that for the last 24 hours and it did not cause Mark any extra pain. Next step: Clamp the tube. That is where we are now. We had an option of pulling the thing out altogether this morning, but we decided the conservative route (probably the first/last time Mark and I can be considered conservative). We want to wait until there is output first. Mark has had two emergent NG placements, and that is enough, thank you very much. He is starting back on sips of juice and water. Keep your fingers crossed.

Wednesday

2009-08-26T12:05:00.002-04:00

This morning, Mark took a shower. It was a bit of a produciton number: me and one of the nursing assistants, a walker, six drains and Mark all in the shower together. Although he got a bit pale towards the end, he was able to do the entire thing standing up. He didn't rest very well last night, but I think this physical exertion should help him take a nice nap.
I slept in the hotel for the first night last night. Since I was going to bed at 9:30, I figured I could get up at 5:45 and be in Mark's room when the docs rounded. I think I remember turning off the alarm, but when I woke up, it was 8 a.m. I guess I was tired.

texas two step

2009-08-25T12:56:00.003-04:00

As we knew going into this, complications are likely with this surgery. Most of our time post-op has been steps forward, last night we took a step back. Last January, Mark had surgery to reverse his illeostomy. We were stuck in the hospital an extra couple of weeks because Mark developed an ileus. This is medical speak for bowels that are asleep. The last couple of days, Mark has been sipping water. He had a Popsicle last night for dinner. The nausea, which had been there all along, got worse. By midnight, we had to replace the NG tube to pump out his stomach, as nothing was moving through. Mark had really not wanted this tube, as his January experience was so rugged. Last night was a bit better than that, and Mark was relieved after the tube was placed. The plan now is to leave this in a few days, or until his colostomy starts working. We're also going to give him 2 units of blood to strengthen him up a bit. He did walk for about 10 minutes this morning, the best he has done so far. Hopefully, we can continue this process. More he walks, more his pipes will wake up and start to do their business. When that happens, we will be back to moving two steps up again.

Finally, a note to the good folks at Sertoma. Mark and I were profoundly touched that you mentioned him in the opening prayer at the Classic. No wonder he did so well. Thanks again.

address

2009-08-24T17:27:00.002-04:00

forgot to add to last blog, our snail mail address for Cathi

Mark Scarbrough
Room P412
MD Anderson Cancer Center
PO Box 300206
Houston, TX 77230-0206

sharks and scares

2009-08-24T17:17:00.003-04:00

Here is Mark's leg after the plastic surgeons worked on it. Good thing they were plastic surgeons, or the scar could have been really bad. You can't see the missing muscle too much, and they tell us that, with time, the other 3 muscles in his leg will take over all the work. Mark still has a good story about his "shark bite" to tell anyone on the beach why he doesn't surf anymore.

On the way to lunch today, I had a bit of an episode myself. I fell as I was walking around Mark's bed. I don't know what happened except I am clumsy and there might have been some water on the floor. I hit my head on the bedside table and fell down on my back. As I was laying there, I looked up on the wall where there was a sign saying "Call, don't fall", so patients wouldn't try to get up themselves. I don't think it was directed at clumsy wives. Looking at that picture, I started to laugh at the absurdity of it all. Mark thought I was crying and it scared him a bit, but I was okay. My back hurt more from the 3 nights in the Barcolounger. The laugh was really a catharsis and made me feel better. Not the best technique for relieving stress, but it worked.

2009-08-24T17:15:00.000-04:00

now, the hard part

2009-08-24T10:49:00.002-04:00

Mark has started another phase of his recovery, the rehab phase. He stood up yesterday at the side of the bed for 5 minutes and we planned to take a few steps this morning. However, he was too weak and had to lay back down. His hemoglobin is 7.8, for you medical types, which is anemic for you non-medical types. Surgeons, in my experience, don't transfuse until there are vital sign changes, so this may not get better for a while. On top of that, the leg is starting to hurt more. He can't put weight on it for a few more days and can't sit in a chair for at least 2 weeks. To get up, he has to roll out of the bed with the help of 3 people.

This is going to be a hard slog. Although Mark is still in good spirits, it is difficult. We were talking this morning about the post from Iptay, about how we can continue to keep our spirits up. Well, the short story is that we take everything day by day and even minute by minute. If you look down the road and all you see is potential for pain and suffering, you will lose it. If you say, "okay, this isn't so bad", or even better: "hey, this is pretty cool" and live in the moment, you can do anything. Mark has a saying that getting cancer is better than winning the lottery. If you get cancer, you know who your friends are. If you win the lottery, you are never sure. If you get cancer, you appreciate every day as a gift. If you win the lottery, you blow your time and money. If you get cancer, you take the time to really focus on your life and what it means. If you win the lottery, you can lose yourself. So, if you look at it that way, we're both very lucky.

Speaking of luck, good luck to Lynda Rock and the cheering team from Charleston in Prague. Mark and I loved it there, the pivo was cheaper than the water. Have a wonderful time and post what happens on this blog, if you can.

good night

2009-08-23T09:55:00.002-04:00

Mark had a pretty good night last night. It started off a bit bumpy, however, as the epidural stopped working. After getting the pain service starting to work on it around 8 p.m., Mark was down from a pain score of 6 or higher (scale 1 to 10) to a 3. By this morning, he was back to a 2. IV dilaudid worked well, but gave him some wacky dreams. Don Bennett-if you are out there, please know how much you have helped Mark. He used your hypnosis techniques when the going was bad.

I actually slept on the recliner last night; I guess if you are tired enough, you will sleep anywhere. Both of us are ready for the day today. The plastic surgeon came in and took the dressing off Mark's leg. It looks a bit like a shark got it; he's got a dent on his thigh where the muscle was. It's really amazing that they took this muscle, cut the nerve and pulled it up into his abdomen to help support the area that is now empty. Mark, when still on quite a few drugs the night of surgery was told about this. He asked "if I try to kick, will I poo?" The plastics guys got a good laugh out of that. Mark is still keeping them in stitches, although he is the one with the stitches.

in a regular room

2009-08-22T17:28:00.002-04:00

Mark continues his amazing recovery, as we are moved in to our home for the next week or so. The picture below was taken right after we moved in. The room is pretty big, with a view of a couple of trees past the parking lot. The fellow just came by and ordered the central line in his neck removed. The NG and art line came out this morning. Last night, he had 13 tubes, now he is down to 6. Mark says: "thanks everyone for all the happy thoughts. You are keeping me going." Ditto from me on that one.

2009-08-22T17:23:00.000-04:00

good morning

2009-08-22T09:25:00.002-04:00

Mark spent the night in the step-down PACU, which had regular beds but the staffing and monitoring of an ICU. Theoretically, this will allow more rest. However, between the alarms and the checks and the everything else, we were awakened at least every hour. As I type this, we are trying to get the SCDs (devices on the legs that prevent clots) to work. Always something.

All in all, things are going well. Mark is in remarkably good shape for an entire day in the OR. I expected a lot of edema, but he's really pretty normal looking. Except for the extra tubes, which include one in his nose (NG), one in his neck (CVL), 4 in his arms (IVs and an art line), the two ostomies, 3 drains and an epidural. Moving around takes planning.

The plastic surgeons came in this morning to tell us they didn't want him putting weight on his right leg where the flap came out of for at least 3 days. Also, he can't set up greater than 45 degrees for a while. His right leg will be weaker, and Mark was bummed this ended his dream of professional football place kicker.

He will move to a regular room sometime today. The surgeons haven't rounded yet, so after they do, I will take a shower and eat breakfast. I should be feeling pretty stinky for having about 6 hours of sleep in 2 days, but I'm actually doing pretty good. More this afternoon. Thank you all for all the positive energy, love and prayers. They all worked.

Internet issues

2009-08-21T21:51:00.001-04:00

The internet just came back up here at MD Anderson, 10 minutes after Mark was wheeled into PACU. He was in surgery over 13 hours, but is okay. Everything went well, just as the surgeons planned. He also was extubated (for you non-medical types, that means he is breathing on his own, off the machine). Instead of ICU, he is doing well enough to stay in PACU overnight. I don't know if I'll be able to post again until tomorrow, but it looks like things are going well.

4 p.m. update

2009-08-21T17:14:00.002-04:00

The nurse came out and said he was still doing well. The plastic surgeon was still working on the flap and the colostomy still needed to be created. She said it would be a couple more hours.

For my mother worrying in Virginia, I am fine. I have taken a little nap and read most of a book. I'm going to put on a video next, and yes, I ate lunch and will eat dinner when I get hungry. All is well.

good news

2009-08-21T14:23:00.003-04:00

1 o'clock and I turn around and see Dr. Skibber. Last time he came out of the case in the middle of the day, he told me he could not get margins and Mark's cancer would most likely return. Today is a different story. He says he got all the tumor he could see. He can't rule out microscopic cells on the left side wall, but there was nothing visible there. Mark will unfortunately have leg pain again, as he scraped around the sciatic nerve. However, he thinks Mark's pain last time primarily came from intraoperative radiation. They decided not to do radiation this time.

So, we're a bit past half-way. The bladder, prostate and rectum are gone, so now they are working on putting Humpty-Dumpty back together again. The urologists are doing a thing called an illeal conduit, which will be the way Mark will pass urine. Plastic surgeons are taking a chunk off his thigh to use the muscle to rebuild his abdominal wall and help fill up the big hole that was created. Finally, Skibber will go back in and create the colostomy. He thinks Mark will be in the OR another 4 hours. It is uncertain if he will need overnight ventilation, but the blood loss was less than Skibber initially thought it would be (and better than his other 2 cases this week). fyi-the surgeon we thought of using in Charleston did one of these procedures in a year. We made the right choice coming here.

As for me, I'm pretty darn happy.

12 o'clock update

2009-08-21T13:12:00.001-04:00

Nurse came out and said Mark was fine, but they were still "working on the front" which meant Skibber is still going in. Short story of this is-long day.

Cosmic connections

2009-08-21T12:37:00.002-04:00

Long story here, but I have a few minutes on my hands to type-

This morning, we walked past an empty security guard station and joked that we could be terrorists for all MD Anderson knew. Mark brought up a reference to a funny story that happened when he used to work at Blackbaud. Years ago, Mark supervised a group of people that worked on internal systems there. One day, one of his employees named Aaron, who had been a Farsi translator in the Army, sent out a test email from a Ali Akbar at hamas.org. The email clearly said "test", but somehow clients of Blackbaud at a day school in Miami got word that Hamas was trying to contact them. Needless to say, hijinks ensued. A VP of Blackbaud later sent out an email trying to deflate the kerfluffle. One PC line in his email has stuck with Mark and I for a long time: "Of note, Hamas is an advocacy organization for the liberation of Palestine". Advocacy organization. It was the beginning of the end for Mark at Blackbaud, as he couldn't handle the corporate weaselness. We hadn't thought of that story in a very long time.

To my knowledge, Mark had not heard from Aaron since he left (we're talking almost a decade). Aaron left a post on the blog this morning, the very morning Mark and I got a laugh out of his joke. Aaron, if you are still out there, thank you for thinking of us. To me, this is a kind of sign that the universe is coming together for Mark. Whoo, I just got chills.

10 a.m. update

2009-08-21T11:11:00.003-04:00

They have a system here where someone from the OR comes out every 2 hours to give famlies updates. As anticipated, Mark is doing fine but hasn't progressed past the cystoscopy. AKA, they have been working on him 3 hours, but really are just getting started. Mark's history of multiple surgeries and radiation means he has a lot of scar tissue to go through. It's tedious, time consuming work and will just take a while. In this time, I have watched cats on YouTube and read half a magazine. Next update 12 Central.

2009-08-21T09:17:00.002-04:00

The picture below came off my cell phone...sorry, I don't know how to turn it. Mark was being silly with his cap.

2009-08-21T09:15:00.000-04:00

So it begins

2009-08-21T08:44:00.002-04:00

Good morning from the surgical waiting room at MD Anderson Cancer Center in Houston, Texas. Mark and I got up at 4:15 our time this morning to be over here at 5 a.m. He rolled back to the OR around 6:45. The staff have been very professional and I really like the anesthesia team. They will be out to give me updates every two hours. The case is posted for eight hours, but we have been told it well might take longer. Three surgeons, a urologist, a plastic surgeon and our GI surgeon, Dr. Skibber will all be on the case. One slightly unexpected piece is that he is scheduled to go to the ICU after the case. I wasn't completely alarmed about that, but it does confirm what I suspected: the team expects this surgery to be harder than the one two years ago. And, that one wasn't a cakewalk.
Many people have asked me why I chose to do this alone. My mother and sister wanted to come and I don't think my mother understands it and I hope I haven't hurt her feelings. It goes back to the weird way I process stressful situations. I have professionally dealt with crises since I joined the volunteer fire and rescue department when I was 16. I think I do well with intense situations. Today, I can just concentrate on Mark and whatever I can do for him. I can detach myself from all the "what ifs" and just handle what comes. Later, after the intense phase passes, I think I might be more emotional. But, the key right now is to stay strong for Mark. I know he is in the best hands possible.
Of course, it could be that I don't have my shit together as much as I think I do. Two weeks ago, when Mark's urinary situation was almost unbearable, I wore a shirt inside out all day long. (Luckily, I had a jacket on most of the day). For this trip, I packed the most comfortable clothes and shoes I wear besides pajamas. I have these webbed black ballerina shoes that I like so much that I have two pairs. Those will be comfy, I think. So, this morning at 4:45 I pop those on to walk to the pre-op area. It wasn't until about 5:30 I realize why my shoes feel funny....I grabbed two left shoes. I looked like Eugene Levy in Best of Show, the guy with two left feet. That got a good giggle out of Mark.

Surgery tomorrow

2009-08-20T22:02:00.003-04:00

"Prep" went just fine and we are ready! Time to get some rest. We're first appointment of the day (typical of a long surgery like mine). We have to be at the hospital at 5:15 AM. Fortunately, the hotel is connected to the hospital, so it's just about a 10 minute walk (all inside). Sheila got here this evening. Yay. We are ready to do this thing. She'll be posting for the next couple days or so...

Mid-week update

2009-08-19T23:57:00.003-04:00

THANK YOU Everyone for the good vibes, hopes & prayers. They mean a lot to me. As a wise woman once said, the opposite of fear is LOVE. Reading your encouragement goes a long way to dispelling the uncertainty & fear that sometimes tries to swallow you whole.

Monday I met with my surgeon and went over the procedure. It will be about 8 hours or so. Removal of the bladder & prostate, creating a urinary diversion, re-plumbing the colon... I even have a plastic/reconstructive surgeon who will be in charge of "filling in" the space left when they take all this stuff out. If needed, they may even do a little "spot" radiation during the surgery.

They did another pelvic MRI Tuesday - I guess to have one last look to help plan everything out.

Although we have a good plan, there's still some uncertainty on exactly how the operation will go. How advanced is the cancer? Is it just by the prostate/bladder or has it spread to multiple locations? Even with the catheter in 24/7, it still sometimes backs up. Will my kidneys stay healthy enough? They've already taken a small "hit" with the "backups" over the last month or so. If my kidneys go, I am screwed. Save the kidneys! Although there are lots of questions, it would have to be something really radical to change the plan too much. Even if it has spread, I gotta pee, so that part's pretty much 100%. It will be such a relief to have that taken care of.

When I was at home, a few times a day, we let the dogs out to do their "business". Oh, how wonderful it would be, to be able to pee at will without the aid of external devices. I wish I could pee like a dog!

Anyway, that will all be fixed up in a couple days. Now I can say that I'm also an "expert" in catherization! I'm an expert in cancer surgery, chemo, radiation and now I have one more thing to add to the list! Yay.

Aside from the obvious discomfort (it's actually not too bad, once you understand how everything goes) the main thing is to get the pee out. Unfortunately, my tumor happens to be in/on my prostate/bladder and it tends to bleed. Cathing plain urine is a piece of cake. When it gets clogged up with blood, it can get tricky. We were doing "intermittent catherization" for, I guess, 3 weeks or so, and, although you have to put your mind in a different "place" during the process, I got pretty good at it. Unfortunately, the blood made it so that once you were "in" that didn't mean stuff came out. Not good. Stuff MUST come out. I'd sometimes try different designs (they have rubber, plastic, curved, big holes, little holes) with various results. I also got pretty good a "flushing" the catheter. That's when you get a syringe and flush the catheter with sterile saline. Squirt in, pull, squirt out. Squirt in, pull, squirt out. Eventually you'd get things to flow, although there were a few times I was scared I'd have to give up and go to the ER. We got it working every time though. About 2 weeks ago, it was just getting too difficult (the same tumor blocking the liquid from coming out, made it difficult to poke a tube up there 5 times a day). So, we went with the Foley catheter option. Stick it in, leave it in. Sounds awful, but it was really a relief after the "will it work" efforts 5 times a day. After each episode, the bathroom looked like the set from Dexter (Showtime - Sunday's at 8:00 pm). So the Foley is a good thing. It was even clear yellow for about a week or so. Yay, yay. On Monday, something must have popped inside, because it went red again. Still have to watch for clots and when they happen, flush them out with saline. Last night it wasn't flowing like it should have and nothing I did was working. I did get it tweaked just right at about midnight and things started (slowing) flowing. I was just about to drive myself to the ER. Fortunately, today, I met with my urologist and one of their folks gave me a "deluxe" flushing, so now I have some advanced techniques up my sleeve if it happens again in the next day or two.

Enough about that...

Tomorrow is the big "prep" day. If you've had a colonoscopy, you know what I mean! Liquid all day, dulcolax at noon, start drinking "HalfLytely" at 4:00 (drink the whole thing!) and "stay close" to a restroom. Then being admitted to the hospital early Friday. Sheila's coming out tomorrow. Yay, yay, yay. Can't wait to see her. I conferenced her in on the major appointments this week, so she's 100% up to speed. We have a house/pet sitter and Calvin is handling the Web business, so we're ready to rock & roll.

Recovery is going to be a bitch, but we're looking forward to having this "milestone" and turning the page. The journey continues...

Go team purple!!!!!!!

Made it

2009-08-16T10:31:00.001-04:00

Arrived in Houston safe and sound! The hotel can't take me until 3 this
afternoon, so I need to find some place to hang. Looks like the mall is
my best bet...

No Whining

2009-08-11T10:31:00.002-04:00

Just to set the record straight, I don't want you guys to think I'm all about complaining about hospital care or cancer in general. Hey, we all have our problems. I do have a few goals:

In day to day conversation, it's often difficult to bring up subjects like this. The blog is a way for me to let loose and get it all out there. I guess it's therapeutic in a sense.
Maybe someone in a similar situation will read this and understand that "there is a light at the end of the tunnel". Someone has gone before and lived to tell the tale. If this is you, understand that you are not alone, others have done this and gotten through it. Hang in there.

Although I might sound like a bit of an attitude, it's really all about keeping you, the reader, entertained! Blood, pee, death-defying stunts & pain! Better then Desperate Housewives! Yay.

Not your normal drive-by surgery

2009-08-11T10:23:00.001-04:00

Letter to my friends:

Just to let you know, I'll be going to Texas Sunday for surgery scheduled on Aug. 21st. We suspect it will be a 6-8 hour surgery where they will try to remove the cancer and most of the organs in my pelvis. I get new "plumbing" as part of the job. Specifics will be determined that day, depending on where the cancer is and how much stuff they have to work with after the previous surgeries and radiation. Statistically, there's about a 50% chance of complication and about a 5% operative mortality rate. Skydiving on acid is safer. That being said, I have about the best guy in the world doing the procedure. He's the recognized expert in this type of surgery, so I'm sure everything will be fine. Wish me luck!

Thanks,
Mark

Test 4 - Prostate Biopsy

2009-08-10T20:52:00.002-04:00

Saving the best for last. The last test of the week was my prostate biopsy. Here's the deal. You know those ultrasound thingies they show, like on TV. The scanner thing they put lube on and rub over the pregnant woman's stomach to show the cute, growing, baby. OK, imagine stuffing one up your ass. But this one is special. It has needles attached to poke into your prostate gland and remove small bits of tissue. So that's what they did. Yeah, you get a squirt of numbing cream, but it doesn't do that much good. When they activate the snipping (after the insertion, poking with the needle), it sounds just like a mouse trap going off. CLIP. "Sorry about that". "No problem - just doing your job..." (OUCH).
So the results come back a couple days later. Yes, the cancer is, in fact, located right there. Pretty much as we suspected. It was almost a relief, actually. Now we know where the sucker is.
With all the information, I had my appointment with my urologist. He's not wishy-washy (which is good) and we talk frankly about the cancer and possible treatments. Given the situation, it's unlikely there is any option for "cure" (which we already knew. Stage IV colon cancer, traditionally is uncureable). About the only option is to cut out most everything, hope you get all the cancer, hook up alternative plumbing that current technology will allow and hope for the best.
So that's the plan. The guys here in Charleston could do it, but the surgery guys in Texas already know my current plumbing and do this sort of thing about 20 times more frequently. We'll go with Texas. Surgery is scheduled for Aug. 21st, 2009. Wish me the best.

Test 3 - Cystoscopy

2009-08-09T21:41:00.003-04:00

Having an Olympus camera stuffed up your weenie might seem like a big deal, but relatively speaking, this one was a piece of cake. Of course we started with a catheter to empty me out. I actually started doing "intermittent catherizations" the week before, because nothing was coming out now without assistance. A very nice, professional nurse showed me the process, gave me a bunch of sample catheters (normal, pre-lubed, some with "hooks" (hooks?!?), rubber, plastic, one hole, two holes...) and we could now, finally, empty my bladder. So, anyway, he does that, then we pop in the camera. Unfortunately, there is so much blood (I'd been peeing blood pretty much since doing the catheters - they say it's very common) that it was difficult to see much of anything. It did appear that there may be some growth at the bladder neck and/or prostate, possiblely getting into the bladder itself, but he's not 100% sure.

Test 2 - Urinary flow dynamics

2009-08-09T21:30:00.003-04:00

For this test, you take off your pants and they put you on a "throne" with access points, both front and back. First thing is to put in a catheter to empty your bladder. (The test must start with an empty bladder). Fortunately the tech had better luck than the nurse for the other test. Bladder empty - check! Then they put a tube with pressure sensors into the bladder. Ouch. Then they put another sensor tube up your rectum to measure the pressure there. Ouch. Ouch. Then they start pumping your bladder full of liquid. Tell us when you feel a little full. Tell us when you feel "gotta go to a tree now" full. OK, let's empty your bladder and do it again. The liquid is radioactive and they are watching all this on the TV. Since the big surgery a couple years ago, my bladder is somewhat deformed (with the parts they cut out and had to sew back together). Most folks have a relatively round bladder. Mine's like a birthday balloon. You know, like a dog or funny hat. Anyway, they find this very interesting and invite the visiting residents to check it out. About 8 of them try squeezing into the room around the TV monitor. Meanwhile, I'm still 5 feet up in the air with probes up my weenie & ass and they're saying, "push now, push now". Whatever. For this test we did find that my bladder muscle is strong (like it should be) and the issue is, in fact a blockage (and not lack of push). I come home and pass out in bed.

Test 1 - Kidney flow test

2009-08-09T21:20:00.002-04:00

So for this one, you prep by drinking more water than usual in the morning. No problem. Then they shoot you up with radioactive stuff. They put you in a machine and "watch" the chemical be elimitated in your kidneys, then bladder, then out. Check to see if all the plumbing is working like it should. Halfway through, you go to pee and they should see an empty bladder. Hmmm. My bladder still looks pretty full. That explains it. The "output" is partially blocked. For the test to complete, they really want to get the bladder empty. I can't do it, soooooo, they bring in a nurse to put in a catheter. Been there, done that, not fun. She gives it a try and can't get past the prostate. OUCH. She tries one more time. OUCH, OUCH. She can't get it. I'm freaked out. I hurt down there like crazy, I have a really full feeling in my bladder and apparently I can't pee. Oh, almost forgot. They gave me lasix, so I HAVE to pee about every 10 minutes. Actually, I can pee a tiny bit, so we finish the test and I go pee. I start walking back to my car and need to find a bathroom before leaving the hospital. On the way home, I have to stop by my Mom's house to pee (I'm lucky if I can make it 10 minutes without the cramps kicking in). I finally make it home. The lasix wears off in a few hours and I'm starting to feel a little better. When I relax, I can get some relief. The test does show that I have something blocking the output of my bladder. The progressing of the symptoms have me thinking cancer. After talking with the oncologists, they start to think the same thing.

The past year

2009-08-09T21:05:00.002-04:00

After the ileostomy reversal, the cancer started coming back pretty strong. We did a few rounds of irreneocetan. It seemed to work at first but petered out pretty quickly after just a couple rounds. I lost all my hair. It's pretty "classic" chemo. No hair, nausea. weak. After that, our Doc in Texas suggested we might be able to do some additional radiation. The scans did not show any big, obvious tumor masses, but we suspected that the remaining cancer was in my hip, where they were not able to get the best margins during the surgery. Also on the PET scan, that area looked a little "warm" (not a definite "hot" though). So we decided to do 2-3 rounds of Oxiplaintan (which it's been years since I did it, and maybe it will work again) and then try radiation on the hip. So, we get to Texas (after a very nice vacation in Norway), and the new scans show that the cancer might be in my prostate. WTF. So our "plan" goes out the window and we try to come up with a new one. We do a couple biopsies to see if we can find it. One comes back negative (no cancer) but they are not sure from the description if it's the hip ne, or the prostate one. WTF. We don't know shit, so I fly home after days of frustration. I get home and they think the prostate one IS positive, but after reading the detailed description, it looks like there is a chance, they the tissue they grabbed may be intestine tissue and not cancer tissue. More questions.
Meanwhile, I'm starting to get symptoms that look more and more like cancer. It's getting more difficult to pee. It had been very gradually getting worse and we didn't know if it was scar tissue, radiation effects, or what. Taking longer to pee. Not feeling like I was getting everything out. My Charleston doc & I thought we needed to get urorology involved. They wanted to run a bunch of tests before seeing me (fair enough - let's get this figured out).

Previously on Mark's body

2009-08-09T20:56:00.002-04:00

(said with a Jack Bauer accent)...
Pretty funny reading about it now. For the "Surgery Again" post, it was supposed to be a "quick & easy" surgery. Ha. The "overnight" surgery turned into about two extra weeks in the hospital. Turned out, I developed a partial blockage and my pipes did not have any place to flow. Swollen stomach, vomiting, cramps. Trip back to hospital after a crazy weekend in the hotel. They put in a nose tube to relieve the pressure. Man, did that hurt. Snorting a hard plastic tube while puking at the same time. Once everything settled, it did feel better. Ended up staying in about 4 days and then we tried taking it out to see if I could handle food any better. Liquids were OK, but not much else. Slowly, very slowly, after about another 10 days I started getting better. I was on IV food for a few days. It was kind've scary at the time. Not knowing if your body would get better and be able to eat. Eating is important. I'd take walks around the hospital ward. Do figure eights from my ward to the one next door. About the only control I felt I had was moving (which was supposed to help - and eventually did...). Each visit to Texas, we get a new surpise.

Another surgery

2009-08-07T14:07:00.001-04:00

Hello everyone! Sorry I have not been keeping you up to date. Here's
what's been going on. After the big surgery a couple years back, I had
a lengthy recovery. Not so much for the cutting in/on my abdomen, but
from the scraping they had to do on my sciatic nerve. Man, I had severe
leg pain for months. Fortunately the pain service here at the hospital
in Charleston monitored me closely and kept me supplied with appropriate
pain meds. It took a few weeks to get "dialed in" and a few months to
slowly wean me off the meds, but after about a year, the pain was mostly
gone.

test

2008-06-04T06:57:00.000-04:00

I have not used t n a while. Just want to make sure it all still works!

Surgery Again

2008-02-18T14:46:00.005-05:00

In less than a week we go back to Texas for follow-up surgery. This time around, they are going to re-attach my guts to their proper location and I'll be back to "normal". Yay. We're going in for surgery on Wednesday. The actual surgery is about one hour. If all goes well, my bowels should start to "wake up" fairly quickly. Since I'm relatively young and healthy, we will be doing the surgery on an outpatient basis. "What?" I hear you say! We go in on Wednesday, have the operation done, stay overnight and if all looks good, I might be able to be discharged the next day. Apparently doing it this way, they avoid "hospital' charges. If there are any issues, we simply get admitted to the "hospital" when/if we need to. My doctor is cool with it, & I'm cool with it, & it may even save BCBS a couple bucks (they have been very, very good to me) than I'm all for it. We will be staying in a "hotel" that is physically connected to the hospital, so if we need additional assistance after discharge, we'll be right there. They said to plan for two weeks, but we might be out of there in just over one. That would be great for both Sheila & I work-wise.

I haven't written for a few months for a couple reasons. There wasn't that much going on, but the main one was that I hate to complain. It's pretty much settled now, but my pain issues in the winter were challenging. We went from "narco" to Lortab, to Oxycontin to more Oxycontin. Along the way we added Lyrica and then after some undesirable side effects, switched to Neurontin. It took weeks to get everything dialed in right. I've been feeling pretty reasonable the last few weeks, but if I miss my dose, I don't feel good. After this surgery, we'll slowly start weaning me off them, but it may be a long, involved process.

Pain

2007-11-19T22:07:00.000-05:00

Pain is a funny thing. When you feel it, at a particular level, it takes over your life. Work, play, sitting, moving - whatever. The pain is #1 in your brain. Sometimes, if you are strong, you can "tune it out" but then, zing, it comes back. Since getting back home, we've struggled a bit with getting my pain medicaton just right. During the surgery, the doctors had to work on a patch of flesh inside my hip, next to my sciatic "notch". Between that and the in-operation radiation, it kind've got pretty roughed up. We thought we had it licked after consulting the pain service at MD Anderson, but the drugs stopped working as well as they did in the beginning.

People say "You're so strong to go through this" and I appreciate their complements, but I'm not always stromg. When the pain is at it's peak, and the drugs that used to work, don't anymore, and you're not sure if there is a solution out there (because you're not thinking straight - because all you can think about it the pain). --- you don't feel all that strong.

Thankfully, I have the best patient advocate in the world. Sheila helped me through it and (with some help from our friends) we got an appointment with the local pain service. It's too soon to say we've licked it 100%, but with the new presciption, I'm feeling much better tonight. If you feel pain, keep working on the solution. With physical pain, there are many medications and it may take a while to get the "mix" just right. Keep trying. Tell the docs how you feel. Chances are they can make it better.

It is such a relief. With the pain no longer acting as a "filter" on my experience, I appreciate even more, my situation. I have lived with cancer for 5 years and now, I have a decent chance of beating it. My last lab results showed a CEA level below 1. (this is VERY good news. No detectable cancer in my body). I have been given a new life. Cool.

home

2007-11-06T19:01:00.000-05:00

We made it home. Yay. Tired.

sc

2007-11-06T16:33:00.000-05:00

Just crossed the border into SC. Looking forward to getting home
tonight!

2007-11-06T15:02:00.000-05:00

Just crossed into GA

2007-11-06T14:51:00.000-05:00

Heading north on 95 just outside of Jacksonville!

2007-11-06T09:19:00.000-05:00

Leaving Penscalola this morning...

On the road

2007-11-05T14:24:00.000-05:00

We have crossed the Mississippi River in LA!

Getting ready to head home!

2007-11-04T20:57:00.000-05:00

Saturday my sister & niece drove down from Dallas to visit for a bit. It was really great to see them. We got Chinese for dinner & played spades & talked & laughed. Good stuff. Since our new apartment has two bedrooms, it actually worked out pretty well with them staying overnight. After breakfast this morning they headed back to Dallas. My leg/nerve pain was still not really under control so we decided to swing by the emergency room at the hospital to get it taken care of before heading across the country. The doc there consulted with the pain team and they came up with a better plan to manage my pain situation. I'm feeling pretty good now and we are pretty confident that our new medication will control things well.

Which means Sheila & I are DONE with Houston (for now)! We're packing up tonight and plan to hit the road tomorrow. YAY!!!!!!! We are SO excited about coming home. We miss all you guys, our house, our pets. It seems like we have been out here forever - so much has happened. We'll play it by ear & take our time getting home, but it looks good for us to be there by Thursday or even sooner. We don't want to push my body too far (but we do want to get home). Can't wait to see everyone!!!

Crazy Friday

2007-11-03T12:55:00.000-04:00

We were all set for a mellow Friday night... We did a walk around the apartment complex and hung out by the pool for a few minutes. When we got back to the apartment, there was a note from UPS! Fortunately, they had not left the complex and Sheila picked up our package. Marjorie (The classiest lady in Charleston - & a real sweetheart) sent a book from Barnes & Noble. It's a thriller that will be sure to keep me enthralled on the way home. THANK YOU.

Then, the real excitement started. The power went out. Dang. We called the apartment manager & they said the power company was "just here" and probably cut off the power because it was not properly moved over to a new account for our specific realtor. We called her. She was clueless but finally said that we should move into a hotel for the evening. Great. I'm in moderate pain, it's getting dark & we need to move on a Friday night. We called Rotary House & fortunately they had plenty of room. So, we packed up an overnight bag & got going. It was a good think I had some Illumicom flashlights in my computer bag! We got settled in & ordered Pizza & that was that.

This morning, our real estate lady arranged for us to get keys to another unit in the same complex. This one has power! And it's a bit bigger/nicer too. So we're back in a good apartment for the weekend. The incision pain is pretty minimal, but the nerve pain in my leg/butt flares up at times. We'll need to get a good pain control program in place as the pain/healing evolves. I won't be able to start paddling the first day back in Charleston!

One less tube!

2007-11-02T17:02:00.000-04:00

Did a special x-ray today where they fill my bladder up with radioactive kool-aid and take pictures. (No, I don't have any for the blog). It was pretty cool. I got to watch everything. Hey, that's my kidney isn't it! So the docs say I have no leaks, so my foley came out today. Wooo hooo. Also got my staples out about 10 minutes later. Big day. Met with my surgeon & oncologist & we're formulating a plan forward. Not sure yet whether we'll do any post-op chemo or not. The book on my situation hasn't been written yet. My doc will pitch it to their tumor board & see what the collective wisdom says. This will be another "recovery" weekend.

M

Breakout!!!!

2007-11-01T17:52:00.000-04:00

Today I actually left the apartment complex!! I'm feeling stronger each day & today we decided to go out for lunch. We did a quick trip over to Rice Villiage (where there are LOTS of nice places to eat) and had a light lunch at an Italian restaurant there. My foley is pretty annoying, but if the tests go OK tomorrow, they should be able to yank it out (owwww). We'll also meet with all our docs to work out the game plan from here.

M

Getting better each day

2007-10-31T17:03:00.000-04:00

Another mellow day at the apartment. My appitite is getting close to normal. Pain is slowly decrreasing. Exercise is getting easier. Looks like we're moving forward according to plan! Here's a quick video of the walk we did this afternoon around the apartment complex. I sped it up in the middle. We did not walk that fast.

M

Recovery Day 2 (one week out from surgery)

2007-10-30T12:10:00.000-04:00

I feel my pain pill kicking in
I feel like a man without sin
It's just like a 3 martini gin
Yay, yay for Vicodin - cha, cha, cha.

Last week at this time I was completely unconscious with my gut spayed open, surgeons cutting here & there and Sheila was very nervous. Amazing what can happen in a week. If we had not have done the surgery, I was months (maybe weeks) away from major complications (i.e. demise) caused by the cancer, and today it's possible I may be cancer free. It will be months (or years) before we know if the surgery was "successful", but I'm quite sure we've bought a lot more time and, possibly, a cure.

Recovery at home

2007-10-29T17:21:00.000-04:00

Today has been a mellow recovery day at home. We're transitioning our pain medication, so it was a little rough this AM, but we're back in the groove. Yay Vicoden! In the hospital, I was doing 3 "laps" around the nurses station using an IV pole for support. Today I did a "lap" around our apartment complex and even did a set of stairs. Sheila said I looked like I needed some more vitamin D so we hung out by the pool for a few minutes taking it easy. The more I move, the less it will hurt tomorrow. We'll see our docs on Friday (urologist, surgeon, oncologist) and go from there.

Mark

Graduation Day

2007-10-28T15:56:00.000-04:00

We have left the hospital!!!!! Two days early after major abdominal surgery. For most any of the 5 procedures they did, you'd normally expect to stay about a week. Wow! Sheila & I are pretty down to earth-types, but we can't help but feel all the positive energy generated by all our friends & family has helped get me to this point. The docs/nurses were very happy with my progress & we're back at our apartment now. If everything goes well, our next follow up with the docs will be Friday to remove my foley catheter & then some more rest/recovery. Before the removal they will shoot up some radioactive fluid & check for leaks. If it's good, they they take it out.

It also doesn't hurt to have great care at a great hospital. As it turns out, it looks like their big JACHO inspection is coming up soon, so everyone was extra careful to do everything right. Another (most significant) factor was/is Sheila taking care of me all along the way. Love yuo honey!!!! xoxoxxx

Mark

Happy Saturday everyone!

2007-10-27T18:06:00.000-04:00

That last blog was actually from yesterday, but if didn't go through due to a minor technical glitch.

Yes, as Sheila say's we're eating normal food now. The hospital food here is actually quite good. You order off a printed menu & they deliver within 45 minutes.

Feeling better/stronger everyday. The plan is to actually leave the hospital tomorrow! We need to stay local to recover some more & do some outpatient procedures, but it really is going well. I even have my computer wired up in the room now to do the blog. You guys hang in there with practice!! Listen to Cindy, or I'm gonna have to send a note to your mom.

Take care,
Mark

Hi everyone!

2007-10-27T17:52:00.000-04:00

This is Mark on my phone thingy (like that ipodphonethingy / I'm pretty
sure that's the technical term)
Well. That was an e-ticket ride. I've been on more drugs the last 3
days than Cheech & Chong! We're really starting to cut back now. I'm
on mosty preventative stuff for infection, BP, and inflammation, and
pain It looks like I'll be off my epidural in a couple hours so then I
will have just one IV (and the foley cath). I do have some temp
plumbing but we'll be able to hook that back up after a while. ~~All
the docs say I am doing great. I am walking more & more each day. Last
night I got lots of good sleep too.
Thank you ALL for the wonderful thoughts and prayers. You have been a
huge source of strength for us both.

Mark

getting ready to get out of here

2007-10-27T17:45:00.001-04:00

Mark is progressing remarkably well. He is eating a regular diet and walking at least 6 times a day. A big thank you to all our supporters, especially to my mother and sister. They spent a lot of money and time to come out here for Mark and I. I can't imagine what I would have done without them holding me together. I don't know if I could have gone through this without their selfless support Mom, Sharon.... I love you both so much.

- Posted using Pocket Watch Software Mobile GBlogger.

good Friday

2007-10-26T11:43:00.001-04:00

Mark is dictating this. I'm baaaaack. Got most of my tubes out and feeling pretty human now. They switched me to a regular diet, but we are taking it pretty easy. Applesauce....livin la vida loca. Sheila has been great and taking good care of me. Something is beeping. gotta go. More later

from sheila....good thing yall skipped the moon, don't know how that would have worked with Mark's stitches.

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better day

2007-10-25T12:50:00.001-04:00

Mark is doing better today. The epidural issues that plauged us yesterday are resolved and his pain is better controlled. He did a lap around the nurse's station and after I gave him a bath, he is now resting. He told me to tell you all 'thanks and love you'.

- Posted using Pocket Watch Software Mobile GBlogger.

long day

2007-10-24T20:39:00.001-04:00

sorry we weren't able to post earlier, it's been a long day. Mark was doing well in the morning, but his pain really got bad during the middle of the day. Anderson has a good pain service, but it took until late this afternoon to see a smile from Mark. It's not unexpected to have severe pain after 8 hours of surgery, but it is hard to watch in someone you love. good days, bad days...we having both at the same time.

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post op day 1

2007-10-24T10:30:00.001-04:00

Mark had a relatively good night last night, considering all the tubes and wires stuck into him. I stayed next to him on a cot. This morning he will attempt to get out of bed and be moved from this transitional PACU sometime later today. This morning, I read all the comments to him. All the love and support from you all just blows us away....you are truly pulling him...and me...through this.
We will be in the hospital at least ten days, we found out this morning. Mark will blog, or dictate to me later today when we go to a regular room. Keep up those good thoughts..we can feel them strongly.

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In the PACU

2007-10-23T18:03:00.001-04:00

Mark is now in the recovery unit. The surgery was more extensive than we had planned. Although the scans were unchanged, his cancer had advanced far more than we realized. It had invaded the bladder. It invaded his pelvic wall, basically near his sciatic nerve. I'm glad we were here, because they were able to save part of his bladder, most of his colon and all the visible tumor. Both kidneys were saved. The big challenges will be dealing with the remaining microscopic cancer and possible nerve damage in his leg. If he has damage, the doc says physical therapy usually works well. I'm sure all the Surgers out there will be willing to coach him during his recovery.
Mark will be in the PACU or ICU tonight, so this will be my last entry until tomorrow. Thank you all for your prayers and support.

- Posted using Pocket Watch Software Mobile GBlogger.

setback

2007-10-23T14:35:00.001-04:00

After the 12 pm update, the nurse said I should go to lunch. So, imagine my stress level when I was called on my cell phone and told the doctor wanted to talk to me. They put me and my sister in a consult room. Five years ago, I was sent to another consult room to be told my husband had incurable cancer. Today. after waiting ??? felt like 30 minutes, the doctor came to tell me there was tumor that did not show up on the scans and couldn't be completely removed. It is actually growing into his lower back. They scraped out all they could and came to ask my permission to do radiation intraop. This won't cure him, but he will keep some of his bladder and have a reversible ostomy and live to fight another day.

- Posted using Pocket Watch Software Mobile GBlogger.

4 hours

2007-10-23T13:02:00.001-04:00

New report, Mark is still in surgery. but all is going as expected. Next report at 2 central.

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first report

2007-10-23T11:16:00.001-04:00

Every two hours. a nurse comes out and gives a report. My greatest fear has been that the doctor would open him up and see so much cancer that he would just close him back up. My sister went with me to the little room where they give the report. I think my heartrate was about 149. Happily. the main surgeon has been in there two hours and everything is fine. I think I can breathe again.

- Posted using Pocket Watch Software Mobile GBlogger.

showtime

2007-10-23T08:02:00.001-04:00

They just wheeled Mark into the OR. He's in great spirits this morning; we were both thinking about our friends and family out there supporting us. Although we only slept a couple of hours last night, I feel pretty wired. The surgery will be at least 6 hours after they get started, and the CRNA said it could be up to 12. I'll keep you all posted.

- Posted using Pocket Watch Software Mobile GBlogger.

Long day...

2007-10-22T18:05:00.000-04:00

Remember that previous blog about them running like clockwork? Not today! The first appointment went very quickly: a blood test. They called me in moments after I signed in and the woman taking my blood was very nice and even commented on how "pretty" my blood was. It did have a nice luminous dark-red quality. She said she would like to get nail polish the same color (and she didn't look like the goth-type). So far so good.

Next appointment was with my main cancer surgeon. We saw his nurse first & she informed us that our doctor would like to take one last look. This involved taking 2 Fleet enemas. Good morning Markie! We got that handled and our doc came in the room for the final exam. I tapped my foot. He tapped his foot. I assumed a "wide stance". He pulled out his Olympus Prot-o-scope 2000. You know the drill...

I cleaned up & after a quick cigarette, one of the nurses explained the "prep" for the surgery. This one is a little different than the colonoscopy prep, but the results are the same. Our doctor came back to talk about the test results and surgery. Good news: all the tests came back as expected and there was no evidence of any "extra" cancer. This means we can move forward with the surgery!

The Surgery: We pretty much knew what this entailed, but we, of course needed to talk about all the possibilities. Depending on exactly what they find when they go in there tomorrow, the surgery could turn out about 10 different ways. We know the cancer is up against my bladder. They may take a little, a lot, or all of that. Depending on that, they will need to reconnect the pipes coming from my kidneys. It's possible that the pipes can't be connected on one of my kidneys and if that's the case, it will need to go too. Prostate may need to go. Part of my colon near my rectum will need to go. Could be a little. Could be a lot. The way the blood vessels are connected to my small & large intestine pose special problems as well. Because of my first surgery (5 years ago) I don't have all of the normal blood vessels. So it will be a special problem getting it all sewn back up. Our doctor has actually published a paper on this specific issue, so I feel we're in pretty good hands. Actually all the folks we talk to have extremely high regard for our guy, so we're feeling pretty good about that. Anyway - it's a complicated surgery. It's a big surgery. Should take about 6-8 hours total. He made a point to tell us that although the risk of death was low, it was not zero. Infection is a possibility. Bleeding is a possibility. Something could pop/bleed/etc. But, we're in good hands at a great facility.

After that appointment, we went to meet with the anesthesiology department. They were running late. WAY late. Cliff notes version is that it took 5 hours to get to be seen. The first nurse made me quite nervous (and this was after me calmly getting the surgery story earlier). Anyway, there was nothing special about me & putting me to sleep for the surgery shouldn't be too complicated.

While waiting, I checked email and saw that a bunch of dragonboaters will be meeting at the dock tomorrow to send us good vibes at sunrise. WOW. You guys really touch my heart. I told Sheila & a tear came to her eye (as did mine when I read it). It is great to know that you guys and so many others are thinking about us, praying, hoping & wishing good things. THANK YOU, THANK YOU, THANK YOU!

We check in for the surgery at 5:15 AM tomorrow.

Nice weekend

2007-10-21T23:40:00.000-04:00

Had a nice mellow weekend. Saturday we went to the Texas Dragonboat Association festival at Clear Lake (close to NASA). It was a pretty small affair. Really just a few corporate teams. I didn't see any of my Houston Heat friends but it was fun to see the races.

Today my niece from Arlington came down to visit for a few hours. We had a nice brunch together and hung out this afternoon. We filled her in on everything and she filled us in on the latest with my sister's family.

This evening, Sheila's mom & sister flew in from Virginia. They will be here for the next week or so to keep Sheila company. It's great to have family help out!

I'll do a quick blood test in the morning & we meet with our surgeon right after. If the scans didn't show any extra cancer we didn't know about, we'll do surgery tomorrow. If they do, we'll head home. Hopefully there won't be any surprises. So that's our next hurdle. The big one after that will be during the start of the surgery. If they see more cancer than is expected, they may decide not to go forward with it and just close me back up. That would be a bummer, to get this far & not be able to do it. If it all goes well, they'll cut out all the cancer and have enough stuff to stitch me back together. Here we go...

Day 3 of tests DONE!

2007-10-19T16:29:00.001-04:00

Didn't sleep too well last night due to the "prep" for today's test. Let's just say I was "clean as a whistle" this morning. Colonoscopy was at about 9:00AM. The folks here at MD Anderson have the the process down cold. Before we even signed in, they were ready to lead us into the back area. Here's your spot, get dressed in your "easy access" robe & we'll be with you in a moment. As soon as I had changed, the nurse was ready to put my IV in. (Good stick today. The PET nurse had to take two tries & I have good veins!) Test went fine, no surprises to speak of (Yay!). We had a mellow afternoon in the apartment, recovering & I'm feeling pretty good now. Look out Houston!!!

BTW, I revised the entry about the pillowcase if that didn't make any sense before. See below on the Love & Fear entry.

PET Done

2007-10-18T12:37:00.000-04:00

Day two of testing: Did my PET scan today. You can't have any carbs/sugar before the test, so no breakfast for Markie. They start an IV and inject you with radioactive sugar. Then you rest for about 90 minutes. No crossing your legs or any movement, because they don't want your muscles to "suck up" the sugar. As we all know, cancer cells grow abnormally fast, so that's where the sugar goes. They put you in another doughnut shaped device & scan for the radiation (which "lights up" where cancer is). The scan is pretty quiet (especially relative to an MRI). After my 5K nap, they remove you from the coil & that's it.

Tomorrow is my colonoscopy, which means today is "prep day". No solid food (but sweet drinks are now OK, as long as they are not red or purple). For an early lunch I had a big bowl of green Jello. Yum! For dinner I think I'll have some chicken broth.

So far, so good!

sheila figured out how to do this blog thing

2007-10-17T18:58:00.000-04:00

Hello!
This is my first, brief entry. I will be posting as Mark is probed, sliced, diced, scattered smothered and covered. Can you tell we have been at Waffle House lately? No one will be scattering or any of those things to Mark, as long as I am around. I am off to cook our pre-PET dinner and will be back to post tomorrow.

sheila

Fear & Love

2007-10-17T17:48:00.000-04:00

After getting here last night, we had achieved our initial "goal" of getting to Houston & moving in to our temporary apartment. Although there was certainly some relief to be here after 1200 miles on the road, it was actually a bit scary, because we were now faced with the reality ahead. What will the tests show? What happens if I miss a step of the prep for one of the tests? What happens if there are complications? Not only that, what if something happens at home & we can't do anything about it? It's enough to make your brain explode. The rational part of your brain says, "chill - you'll get through it." but the fear sneaks in & gets it foot in the door.

What's the opposite of Love? Hate? I don't think so. Too close. Nothingness? No, that's just absence of emotion. I think the opposite of Love is Fear. When you Love, there is no doubt. By definition, Love fills the gaps in what we do and how we feel. Love creates meaning out of nothing. Fear creates a feeling of nothingness, a void, blinding you from seeing what is there.

So to combat the fear, I read the pillowcase. (This is the pillowcase that my Dragonboat friends wrote messages on after our last paddle in Charleston. It's hanging on the headboard of our bed now). I hadn't really read hardly any of it. Last night I puled it out and read every word. The expressions of warmth, generosity, hope and Love shined a clear light on exactly what was happening. Yeah, it'll be tough. But I have the love of Sheila, here by my side, and the love of lots of folks back home.

Likewise, the comments on the blog here, have been a tremendous inspiration to us. I cannot tell you how much it means to Sheila & I.

THANK YOU!

Love,
Mark

Tests - MRI

2007-10-17T17:14:00.000-04:00

Last night was our first night in the new apartment in Houston. It's a pretty good place, close to the hospital & also across from Hermann Park.

Today was Day 1 (of 3) of tests. MRI day. The prep isn't anything special for an MRI. The machine looks similar to a PET or CT but operates on a different principle. I had a Pelvis and Abdomen scan, so it took about an hour & a half. They prep with some IV contrast, but it's not the iodine stuff you get with a CT. MRI scanners are very noisy. Clank, clank, buzz, buzz, buzz, buzz, zap, zap. 90 minutes worth. They even give you earplugs. The folks giving the test were all very nice and explained everything along the way.

We also met with the urologist that will be assisting in the surgery. They pretty much take their lead from the primary surgeon removing the tumor. They actually go into the bladder and insert temp stints so they can easily identify all the "plumbing" during the surgery. If there's anything left after cutting out the cancer, they stitch it all back together (more or less). Easy! The length of the surgery depends largely on exactly what they find when they go in there. We did have a bit of good news today in talking to the doctor. They had already looked at my MRI this morning and they THINK that they may be able to keep some parts that we thought might have to go. The bad news is that if it's worse than they think, we might lose a kidney. That's why you have 2 right?

Tomorrow is my PET scan. Then inject you with radioactive sugar and scan to see where it goes. If part of your body sucks up more sugar than it should, that's an indication that there might be cancer there. The prep tonight is to have a low carb dinner (salmon, broccoli, salad) and only water the day of the procedure. The good news is the procedure is in the AM so I won't have to be on low carb all day. The bad news is I immediately start the prep for my colonoscopy the next day. I can have sugar, but no solids. Gatoraid, Jello, broth. Yummy. And there's the Phospho soda stuff. More later on that, I'm sure. So, I'll be ready for a nice meal Friday night.

We made it!

2007-10-16T18:17:00.000-04:00

We made it to our apartment in Houston. 1200 miles!!
More later... We need to get all moved in.

M

Dream

2007-10-15T19:44:00.000-04:00

I had a dream last night that I was a CIA agent protecting the President (not Bush, just a generic "President"). Our intelligence said that there was a mysterious tiger that was impervious to bullets and that the cat planned on attacking the President. We were guarding the president on his way to meet another government official and the tiger attacked. One agent went to shoot it and the tiger swallowed the gun and the agent whole. Two other agents attacked with their guns drawn and were swallowed. The cat turned to me, the remaining agent between it and the President. I kept my pistol in its holster and braced for the pounce. The cat started to bite me, but I grabbed it by the scruff and started calming it, telling it everything was OK. The tiger halted its attack and I was able to lead it away.

What does it mean?

Mark

Day 2 - Taking it easy on the beach

2007-10-14T22:03:00.000-04:00

Today was a mellow, mellow day. October 23 is looming as a "change your life" kinda day, but today was all about relaxation. We did a few quickie videos & photos. Hope you like them.

M

Day One

2007-10-13T22:17:00.000-04:00

Day one of our trip. We packed everything last night. I remembered that our cat needed to have his stiches out at the last minute, so Sheila volunteered to take him to the vet this morning while I packed the car. Since we were, more or less, in the "frequent flyer club" at the emergency vet (that's a whole 'nother story), they take the stiches out for free. Yay!

Timing worked out fine & we were on the road by 9:00. Weather was nice & we made it to Destin, FL by 5:00 local time. The hotels in Destin were full, so we went a couple miles down the road and got a room at the Holiday Inn (on the beach!!!!) in Ft. Walton Beach. Nice sunset view from the room. The front desk clerk recommended this restaurant, Bay Steamer, and it was awesome. Steamed clams, mussels, oysters, crab & local shrimp. Yum. Excellent food (and service).

Looks like there were a few comments. I'll check them out. Thanks everyone for sending good vibes!!
M

5 Years & still going

2007-10-11T14:30:00.000-04:00

Five years ago, I was diagnosed with stage IV colon cancer. At the time, the statistics for 5-year survival were not 50%, 20% or even 2%. They were "N/A". Not applicable. Well, we've proven that you can sometimes go against the odds & win. I've had 5 happy years that the stats said were impossible. I've gone through surgery, chemo, chemo again, radiation, new chemo, chemo, radiation again, and more chemo.

In a few days, we'll embark on what may the the last major step in my recovery. Because my remaning tumor (in my abdomen) has been (we believe) pretty stable, and since it appears (we believe) to only be in that one remaining spot, our doctors think surgery to cut it out is an available option for (possibly) a cure. I know - lots of qualifying statement in that sentence! Nevertheless, it looks like our best bet moving forward. It's hard to imagine, but we may, finally, get cured. The chances aren't 100%, of course. Lots of things could go wrong. But I have the best doctors, the best hospital & the best damn patient advocate one could ever have (my wife, Sheila).

Many of our friends & family have asked "what's up", so this blog is dedicated to you: The folks that have given us support, prayers & well wishes during this process and in the future.

Love,
Mark