True or False

I am now the proud owner of a customized version of the book "Everybody Poops" that has a page about "Dave" in it. It was one of the proudest moments of my life. And to think that only days ago I said to someone, "do you know that book 'Everybody Poops?' It's a lie!" How quickly I've had to eat my words. Mmmmmmm.... they taste so good....

Brief Update (okay.... not so brief...)

Here's a brief update to clarify some confusion.

The process of recovering from the ileus is as follows:

1. Shut everything down (for the reboot). That includes the tube down the nose and into the stomach to pump stuff out from the top.

2. Wait for things to start clearing out from the "bottom up". The small, loose bowel movements are the first signs of this. I continue to have them (and some pee), and this is great.

3. Stop the suction for a period of time to see if the upper bowels are able to process the gastric juices on their own. At the moment, we have stopped suction a number of times, only to have to restart it after a while b/c I get more and more nauseous. SO.... as far as the ilius is concerned, the next step is to pray that my upper intestines will begin working on the gastric juices.

4. Begin to eat ... very slowly at first. Jello, etc. Then more and more solid foods. We're probably days away from this. FYI... it's probably been 5 or 6 days since I've eaten anything. Apparently, people go weeks, so it's not an issue.

The whole process can take days and days. Pooping is only the beginning, so keep praying. It's almost certain that I will be in the hospital through the weekend.

In the mean time.........

Tomorrow, I'll get a scan and possible drain of the abdominal fluid. The rate of buildup has slowed SIGNIFICANTTLY (hooray!), but it is still accumulating, and we don't want to get behind on that since that's what set all this junk off in the first place.

And... Today I start some xtra chemo. This chemo is a very very long shot at actually knocking out the Cancer (the other treatments are designed to shrink and slow it, but not to get rid of it). I'm glad my Dr. wants to be aggressive and take a shot at it. He's hoping that my cancer is "wierd enough" that it might just respond, whereas pRCC generally does NOT respond to Chemo.

And... a note on terminology. Chemo generally applies to toxic agents designed to kill the cancer cells. The other treatments I have had (including the Avastin) are not, properly, chemo since they are not really toxic to the cancer cells, but are designed to interrupt the biologic process by which the tumors grow.

OK.... I hope that clears things up and gives a clearer picture as to why I'm still here. Sorry for the boring post.

On a personal note, I continue to sleep ok, and my pain level is reasonable (some abdominal pain, but it's manageable). The tube down the nose is uncomfortable (especially when I swallow), but it's tolerable. And I continue to feel surrounded by more love and support than anyone could deserve. Thank you all.

Wednesday, 4/29

Dave had a pretty good day today. The intestinal "reboot" shows signs of working. They removed the catheter and Dave produced a little bit of pee (the nurse said it wasn't enough to count, but Dave disagrees!). He also had a bit of diarrhea and some cramping of the lower bowel which, though uncomfortable, is a good sign.

Dave and Joanne met with his oncologist today and decided to start a supplemental IV chemotherapy tomorrow. The drug they plan to try is usually used for colon cancer (often in conjunction with Avastin) - it's a long shot, but it's worth a try. Pray that it works!

Meredith

A poem in my honor..... It's Awesome

We have ignition...

Hooray!!

While for most, this would be a complaint... for me, it's cause for great rejoicing!! I've been dancing around singing the theme to rocky... "feelin' strong...dum de dum..." And, of course, given my grand-teton-like piles, the looser the better!!

Now for the problem... the Drs are so encouraged that they want to remove my Foley Catheter! I'm a bit nervous about getting rid of that crutch... especially since this will be the THIRD time the catheter has been inserted and then removed!!

Oh, well..... once again, it's time to pray for pee. (chimp or race horse.... i don't care...)

Paralytic Ileus

This is the current diagnosis. Here's a pic:

Basically, it's when the intestines shut down and stop moving things through them. This can happen when they become distended, disturbed, or are subject to an electrolyte imbalance (my bowels have seen all three of these). The solution is basically a "reboot" of the whole system. First, clear everything out via stomach pump, then no food or drink, then a slow recovery process. It typically takes days to get them moving again. Laxitives, etc., don't help here b/c the nerves in the bowels aren't working at all, so there's nothing to "stimulate." So.... here's waiting... meanwhile, the pain is substantially lowered (thanks to the stomach pumping), and I'm able to sleep.

On the cancer front, it still looks like things are progressing reasonably well. The rate at which the ascites (abdominal fluid) is building up has slowed significantly. This is a very good sign that the new chemo is working. Meanwhile, I'm talking to my doc about some other supplementary chemo regimines; however, it's pretty important that my body be healthy when we start, so we need to get over this ilius hump (which should take a few days).

Thanks to all for the prayers, notes of encouragement, and visits. You guys are going above-and-beyond the call of duty when it comes to fellowshiping with me in my sufferings. Cancer doesn't really leave any room for pride or shame or anything else -- there's just the naked truth and the need for helping hands to serve me in my humility. I love you all for that, and pray that you will be blessed many times over.

Tuesday, 4/28

The good news is that Dave had a CT scan today and there doesn't seem to an intestinal blockage. The bad news is that his bowels are still not working and the hemorrhoids are extremely painful. Dave is hungry but he's not allowed to eat anything until things start moving. For now it's ice chips and sips of water...

He got some sleep last night and this morning (thanks to the Ativan IV) and hopes to do the same tonight. He's been moved to a private room (3101).

Thank you all for praying,
Meredith

Other facts

Dave now has an NG tube (down his nose into his stomach) in an attempt to drain the bile from his stomach and relieve some pressure. After a painful, sleepless night, Dave got an Ativan IV this morning and was able to sleep for many hours. This afternoon he went to radiology for an abdominal tap and they removed 4 liters of fluid. His last tap was on the 4/19, so the rate of fluid production seems to have diminished (Avastin appears to be working!). The most pressing issue (pun intended) is that his bowels aren't working and he has developed massive hemorrhoids. Please continue to pray for normal bowel and bladder function, relief from pain, and a good night's sleep.

Meredith

How Strange

A few scenes from an evening of ineffective enemas and botched catheterizations:

A quote from maintenance:

"How did he get it on all three walls AND the ceiling?"

A poem:

How strange that pain
has pitched it's tent
at the place of excrement

Here's me as of 5pm on Monday...



Special thanks to Roger Brooks who flew down all the way from NYC to sit watch with me through a sleepless night of screaming, moaning, and pain.... patiently praying and reading from the book of common prayer rite for the sick... what a good friend.

Update

Good news: adrenal gland appears normal.
Bad News: more abdominal discomfort than ever before. difficulty managing pain. Much is due to problems in GI tract (urnation/defication). Drs are trying what they can. I will NOT try and go home tomorrow.

Thanks to all who gave up afternoons / evenings to be with me. Tonight, especially, thanks Anne B. for letting Roger come down from NYC just to visit and hang and help (he really is a big help!).

Sunday Evening Post

I was able to get by the hospital to see Dave before church and again mid-afternoon today. This morning Dave discussed with the doctor the goals for his day - get his "digestive system" moving better, perform and analyze some tests on his adrenal gland to see if it is working properly, and do another tap to drain any excess fluid.

As of 4:30 this afternoon, Dave has ingested plenty of laxative and was still waiting for positive results. The tests on his adrenal gland had been performed, also with results still pending. The tap was not done, as they were unable to find a pocket of fluid large enough to do one, which Dave is embracing as a good thing.

I asked Dave about his nutrition, and whether he had eaten his breakfast this morning. He said that he had a couple bowls of cereal, twice in fact. The cereal ultimately stayed down.

Dave has discussed with the doctors his desire to become an outpatient and return home tomorrow, so that is a goal they are working on.

Thanks for your continued prayers.

Mark

Adrenelan

When I had the nephrectomy, they also removed one of my adrenal glands (the one near the infected kidney). Recent scans have shown some cancer activity near the one remaining adrenal gland. Today, this gland is being investigated as a possible source of a lot of my problems here. Please pray that either (a) the gland would check out OK, or (b) that they find the problem there, but that it’s something easily treatable/fixable.

Update and prayer requests for Dave:

Today was a tough day trying to adjust pain killers and manage medication. Dave is resting now. Current prayer requests: for Dave to get good sleep tonight; for the right adjustments to be made in his meds; for his bodily functions to return to normal.

Mark

UPDATE

Thanks to RBC who held the heave bucket all night long... you'll never know brother...

Blood chemistry is improving... that's good news and was one of the key worries, but the abdominal pain is back and with a vengence. Also, lots of coughing, gagging, etc. Can't really eat or drink (both desire and dr. orders).

Thanks HG

Some of the home group came by tonight. We went into the day room next to my bedroom and had a good visit. Thanks, guys.

Pee like a race horse is no longer the goal

Check out this link from SK

http://www.careerbuilder.com/monk-e-mail/Default.aspx?mid=29986735&cbRecursionCnt=1&cbsid=06cd40b9a8844fbdacb47a5a034fbe60-293915760-x4-6

dinner is served

Hospital meals aren't quite as bad as everyone says they are... it's just a matter of forcing your abdomen to find room for all that food...

... it's makin' me wait.... it's keepin' me wa-a-a-a-aiting

Felt better in the AM.

Increased pain -- tried to do a tap, but they didn't find enough fluid to drain.

Still need to fix my sodium / potassium balances before they'll even talk about releasing me.

pee time

Hooray... i just peed like 2 cups, and while it's not "race-horse" quantities, it feels GREAT and is a pretty good sign that we might be turning the corner.

Also, I wanted to thank again everyone who came to visit yesterday... there were so many unexpected visitors, and you brought such messages of hope, love, and support. You guys are the best.

Started Avastin

About to start my 2nd anti-cancer drug, Avastin (90 min IV every other week).

But, I'll probably be in the hospital for a while longer trying to fix the blood chemistry (very high potassium plus very low sodium... wierd combination).

thirsty

Thanks for the notes on the last blog.

Still no news. Blood chemistry is out of whack (high potassium, very low sodium). They've got me on tons of IV fluids, but I'm not allowed to drink.

I think there is a way to "follow" this blog if you create your own blogspot account ... that would mean you'd get an email saying when there's a new post.

-d

GENERAL UPDATE & CURRENT STATUS

Hi folks, I thought I'd try and use this blog to give folks an update on my situation. Between posts that I make and are made on my behalf, hopefully it will become an easier way to keep track of what's going on. Thank you all so much for your kind demonstration of support via letters, prayers, cards, notes and visits. I can't say how much that means to me.

CURRENT MEDICAL STATUS
The current challenge is managing the fluid buildup in my abdomen (ascites). This is caused by the cancer and, possibly, by a reaction to the initial anti-cancer drug I was on (Sutent).

At first, we thought this might be an opportunity to jump ship on the Sutent and get in on an NIH trial drug (XL880) that I've been following since the first diagnosis; however, it turns out that I'm not healthy enough to be a lab rat! Bummer. This isn't just temporary; the XL880 study allows you to have ONE prior therapy for kidney cancer. Once I put that drop of Avastin in my body, I'm no longer eligable for this, particular, trial.

The NIH/NCI oncologist spoke with my Drs here at UVA and together we decided to try an IV drug called Avastin, which works similar to Sutent, but they have actually seen it help clear up Ascites. It also has less side effects, but the downside, is that it's kind of an outdated drug and isn't used much b/c it hasn't been that effective OVERALL in treating pRCC (and even for RCC, there are much better drugs out there). But, again, the main reason for going w/ avastin is the hope that it will clear up the ascites by attacking the cancer (vs. being drained every 36 hours.... ugh!). Once I'm stable, I imagine we'll be looking at some other non-Avastin options.

The insurance company approved the use of this drug, but I'm waiting for the gears to start turning here so I can start taking it.

One minor complication is that a side effect of Avastin is that it can cause bleeding and/or make it hard for your blood to clot. The reason that's a complication is that it makes any procedures related to draining/managing the Ascites much more risky. So.... the goal is to have one really good abdominal tap just before starting the drug (and, once again, I'm waiting.... waiting..... waiting....
I slept well last night (better than in a long time). We've finally got the pain/nausea managed reasonably well (mmmmmm..... narcotics....).

Well, that's probably enough for now. We'll fill in some of the back story shortly and, please, feel free to post/ask questions in the comments section you might have (others might have as well), and I'll do my best to answer.

Once again, thanks to everyone for your love and support. I’ve gotten lots of comments by visitors, roommates, and staff about the quality of the folks who are hangin’ around. You guys are great.