Monday, August 31, 2009

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

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.

Sunday, August 30, 2009

NEWSFLASH

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.

Saturday, August 29, 2009

Mark's back

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?

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.

Friday, August 28, 2009

steady progress

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.

Thursday, August 27, 2009

slow progress

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, August 26, 2009

Wednesday

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.

Tuesday, August 25, 2009

texas two step

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.

Monday, August 24, 2009

address

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

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.

now, the hard part

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.

Sunday, August 23, 2009

good night

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.

Saturday, August 22, 2009

in a regular room

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.

good morning

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.

Friday, August 21, 2009

Internet issues

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

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

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

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

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

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

So it begins

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.

Thursday, August 20, 2009

Surgery tomorrow

"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...

Wednesday, August 19, 2009

Mid-week update

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!!!!!!!

Sunday, August 16, 2009

Made it

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...

Tuesday, August 11, 2009

No Whining

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

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

Monday, August 10, 2009

Test 4 - Prostate Biopsy

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.

Sunday, August 9, 2009

Test 3 - Cystoscopy

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

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

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

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

(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.

Friday, August 7, 2009

Another surgery

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.