A Quick Update

I started the anti-clotting drug; don't know how long it will take for it to work. There's still quite a bit of pain in my right calf; hopefully most of this is due to the clot and will go away shortly. Finished this week's chemo yesterday and it wasn't as bad as the last time. Still some nausea and fatigue, but overall it was okay ... I took lots of naps this weekend :). Thanks again to all for your prayers and encouragement.

Ode to my Blockages

While getting my chemo at Uni-V of VA,
The Drs. together were all wont to say,
“In general your health looks better each day”
but these blockages of yours, they must go away.”

What blockages? Ahh, yes, well that is the question
The first one relates to GI and digestion:
My bowels, ah my bowels, my long-lasting obsession
They seem to be stuck in a bit of regression.

“We declare war on this new constipation”
My Dr. she said with stern consternation
“You cannot regress – start massive hydration,
Colace and Miralax will be your salvation.”

“But there may be something else – something even more serious
We will need a new scan to see if it’s injurious”
It might explain the pain that's been so mysterious.
Yup, there's a clot in the calf… could be deleterious.

“You can go to ER or go home and rest”
I said, “Avoiding ER is always the best.”
The Dr. agreed (although he was a bit stressed stressed)
So home to my home group – I’m abundantly blessed.

Now it’s hang out with my leg in the air
Trying to get meds (can’t find ‘em anywhere)
Fragmin it’s called – stick it in my belly, bare
Once every day to receive adequate care.

So that’s all the news for my update sublime
As you can tell, I have a tad extra time
I’m sitting around -- feeling mostly fine
Waiting on Fragmin -- blogging in rhyme.

Yardwork and IPODs and treatment continues...

Well, it's been a while since I've updated the blog. Sorry about that; in this case that's mostly good news. Over the last week, I've been getting stronger and better; the only downer has been some neuropothy and severe cramps in my right leg/calf, so please pray for those. I'll seee a Dr. about it on Thursday.

But, back to the good news, last weekend I felt positivly, "spry.” On Saturday I did some yard work, which these days consists of riding around in a golf cart giving encouraging instruction to a kid who is swinging around a spin-trimmer. Pretty sweet way to do yard work, eh? The kids, so far, have been great about it. We'll see how long that lasts.

Also, Caleb and I installed an ipod-adaptor in my car… what a job. I mention this because I have only recently become an ipod-user, and this is thanks to a good friend who decided I needed one for the long days in the Hospital or Drs office. It’s been great – especially in the infusion center (which is where I spend my Thursdays). It’s also great at home when I’m tired and can’t sleep but too I’m nauseous to read (which, thankfully, happens less and less – maybe a few times / week).

As far as the medical update, still no sign of ascites (abdominal fluid). This is great news. It definitely means one of the drugs is working (I think it’s the Avastin, but my Dr. won’t commit… that’s because the Avastin was NIH’s idea and the oxaliplatin/5-FU/leucovorin was his (that’s only partly true -- Avastin was first mentioned by NIH, and my oncologist agreed it was the best treatment option in a phone call between UVA and NIH the day I was told I was too sick to do the NIH study). By the way, one of oxaliplatin’s main ingredients is platinum… pretty cool huh. I’m not just silver- or gold- dude. I’m the platinum-dude (by the way, this is the hardest of the drugs I’m taking – I’ll get it again this Thursday. I’ll talk about the side effects in another blog sometime… some are pretty cool)

Anyway, back to the update, the ascites is good, but I have two small tumors (I think I mentioned them before) just under my skin that are easy to feel. These tumors these aren’t shrinking (they’re not growing real fast either), so that’s a sign that we may not be beating back the cancer. We won’t know for sure until I have a scan which (every one is asking) is scheduled for next Thursday, June 4. We’ve been putting it off because we need to give time for the Avastin/5-FU therapy to work. If I get scanned earlier and it doesn’t look good, we’d just say, “well, the treatment hasn’t had time to work, let’s give it a few more weeks.” So, an earlier scan is pointless.

About those grape-sized tumors (if you care – this entry is getting kind of long): They are on my lower-right side right abdomen – right where they removed my Kidney. Earlier scans showed that there was some cancer on the abdominal wall at the nephrectomy site (perhaps they didn’t get everything when they removed the kidney… it’s hard to say. There certainly wasn’t any detectable cancer at that location after the surgery). Well, it turns out that when they tapped me in this area (lower right side), they stirred things up and the cancer re-seeded. I noticed a small lump almost immediately after the tap, and I mentioned it to every Dr. (and Nurse) that saw me. Every single Dr/nurse said, “no, that’s not cancer, it doesn’t spread that way.” I kept saying, “ok, what is it?” They would mumble something about a scar or hematoma. It wasn’t until I had a CT scan in the hospital and the radiologist said that the tumors were consistent with metastatic PRCC that the Dr’s finally admitted that it was possible.

The plan for these is to probably radiate them at some point. Normally pRCC doesn’t respond to radiation, but these are so close to the surface of the skin that they might be able to really blast ‘em in a way they can’t if it’s inside the abdominal cavity or in/near a major organ. We’ll see. I don’t really care (as long as they don’t hurt, and they don’t). In a way it’s nice being able to tell easily if things are growing, shrinking, or staying the same. And, as I said, I think “staying the same” is where we’re at right now. Hopefully that’s enough for today.

Again… thank you all for your thoughts and prayers. I am constantly surprised and super-encouraged by the folks who tell me that they read the blog and are praying. It’s not just my friends (who are the backbone of my support) – it’s friends of friends, and relatives of co-workers, and parents of my kids friends… you are all amazing. I’m blessed and humbled by your love and concern – which, for me, is the one of the main ways God is showing me His love and concern. May he bless you as His love flows through you to me. Thank you!!

My day at DMV, etc

So, I spent most of the day at the DMV getting a disability permit, and then at UVA getting an injection to help my white blood count (which, based on bloodwork I had at the same time, I may not have needed). Oh well... i'm getting used to hanging around in waiting rooms. I'm so excited about the permit, and then, as I drove away from my beautiful super-secret UVA handicapped parking space on Hospital Drive, the following question occurred to me: "where would you hang the permit on a motorcycle… and if you hung it on the handlebars, would it likely get stolen?” I’m sure I could “Housify” my motorcycle and find a place for the cane. Anyway, I actually looked it up, and there are a bunch of states that give out handicapped plates for a motorcycle, but as far as I can tell, VA isn’t one. I think the parking spaces would be marked like this =>

Speaking of House, My kids say every day I become more like Dr. H in every way. First, I am just plane ornery, then I get a motorcycle, then – after the nephrectomy – I regularly express my great fondness for opiate pain killers (mmmm... fentanyl). I tel nurses and interns what to do. And, I’m walking with a cane. What more is there?

The Spigotless Wonder!!

Well, guess what? I went in for the spigot install. The plan was to put in the pleurex catheter and then use it to drain the fluid that built up since my last abdominal tap which was 1 week ago. BUT... there was hardly any fluid buildup!! This is great news. It means that, at the very least, that the cancer treatment is doing some good and keeping things under control enough to prevent the fluid buildup. All the Drs and nurses were surprised and thrilled!!

After that, I went up to the oncology infusion center for 6 hours of in-hospital chemo treatments. Then they sent me home w/ a bag of chemo (5-FU) that I’ll do until Sat night. This is my second portable IV, so now wherever I go I’m carrying around two big shoulder bags of meds. It’s mostly ok, though, because so far “wherever I go” = “nowhere” I’ve been feeling pretty tired and nauseas, so I’ve mostly just slept since 9:30 last night (that’s why this blog is so late in coming).

Getting back to the spigot. Based on the overwhelming number of comments, I know that as exciting as the news of my lack of spigot is, the news you all were really hoping for would have been illustrated by this pic. Oh well.

Next week should be a normal week until Thursday when I have, hopefully, a CT scan (I’ve asked for one), and another round of chemo (Avastin). Thanks again for the continued prayers and support.

Every day I feel stronger. Yesterday and today I ahve been able to work part-time and I'm slowly working toward being back to work something closer to "full-time" (whatever that ends up meaning :). Here’s what I’m especially thankful for today – I’m back at work because I want to be not because I have to. This is another wonderful gift from everyone at Barron Associates… they are the kind of people with whom I want to spend my days with; they are the kind of people who graciously took initiative to covered for me so I never felt the pressure of having to be there. They even watered my plants :). You folks at Barron are the best, and I count working with you all as one of the big blessings in my life. Thank you.

Psalm -- by Richard Wilbur

Give thanks for all things
On the plucked lute, and likewise
The harp of ten strings.

Have the lifted horn
Greatly blare, and pronounce it
Good to have been born.

Lend the breath of life
To the stops of the sweet flute
Or capering fife,

And tell the deep drum
To make, at the right juncture,
Pandemonium.

Then, in grave relief,
Praise too our sorrows on the
Cello of shared grief.

Happy Belly

Well, back by popular demand... a fat man with breasts... Only this time in cartoon form. Things continue to improve in the belly/bowel front.

I just got home from seeing Palliative care and my Onc. One of the biggest pieces of news is that that I’ve been up all day and am still feeling pretty good. The docs say my progress is amazing and they can’t believe how well I’m doing. My onc said it's great to see me feeling so much better. I said, "I don't want to feel better, I want to be better!" He kind of took exception to that (rightly so, I think) and said that feeling better was pretty important. And it's true, in all of the areas that put me in the Hosp, i'm much better. As far as the response of the Cancer to treatment, my oncologist says that, subjectively, things are looking good, but there won’t be any objective measure for 2 or 3 weeks. He really wants to give the new therapies time to keep working (but the abdomen is not swelling as fast, and that’s always a good sign). Of course, I’m always asking about other treatment options, and my doc was giving me a hard time saying that I’d be on 13 different drugs if he would let me. I said, “why not.” And he said that besides quality of life (which would be awful), there isn’t a lot of evidence that simultaneous is better than sequential…. Especially in my case where drugs tend to work for an period of time and then stop for a while. So, I think patience is the name of the game. Thanks again for all your prayers and notes, etc. You all are great.

there's a rumor going around...

For those of you who heard rumors about a motorcycle ride this weekend, I just want to say my pastor made me do it! "Are you sure I should do it?" I ask. "Sure," he says, "there's a long history of combining narcotics and Motorcycle riding.... go for it..." (or something like that... my memory is a bit fuzzy). Don't you all wish you had a pastor like that? God bless him. Anyway, D., C., and I hit the road for a wee bit on Sat and boy was it great. We stopped at a little VA back-country store, and I told the girl behind the counter that I wanted to treat these guys in the leather to a soda because "they made me feel like a real man for the first time in a month." Then I said, "and I'm not going to explain that..." But, before I could finish saying "I'm not going to explain that," my pastor was explaining like crazy...

Anyway, I had to lie down for 2 hrs to recver, but boy was it worth it. Thanks guys. PS. That pic really is my Motorcycle - it looks cool as long as it's not parked next to Danny's.

I'm finally home -- thanks for everything

Well, I'm finally home, and first, and most important, THANK YOU to everyone for your support, encouragement, prayers, and love. What an experience, and I mean that in a good way. Thanks to the folks at work for covering me so well, and thanks to the folks on 3-East for their GREAT care. Can't say I hope to be back, but I will miss all the excellent Nurses and PCAs.

I got home around 5:30 last night (with boxes of hospital supplies, walkers, etc.). Spent a long time walking around w/ the kids amazed at what 3 weeks of spring rains will do! Ate a light dinner, had a short and very sweet and special visit with Home Group, watched a movie with the family, went to bed, and slept pretty well (as well as I did in the hospital). I'd say it's almost normal except for taking 10 times as long to do everything (I guess I'm living life at the speed of my bowels which continue to make slow progress toward normalcy).

Today it's in for an abdominal tap and another consult about installing a hose that I can use to drain the ascites fluid myself. Then back home for some visits w/ home health care workers. It's going to be weird (and I think hard) to adjust to a life at home that involves so much time resting, recovering, and continuing to manage health-care issues. We'll figure it out.

Tell me what you guys want me to do with the blog. There certainly isn't the daily drama, but I'd be glad to keep posting health updates at whatever rate makes sense.

Is it really freedom if you have to wear pants?

On the one hand, it looks like I really will get out of here this afternoon. Everything is set up for home health care, and I get a tap tomorrow (probably won't get the spigot until sometime next week). On the otherhand, I have to wear pants (at least that's what I hear).

(Image: http://heliologue.com/2006/10/06/i-find-pants-confining/)

Out with the old ducts; in with the new

Well, the NG tube is gone! Thank you Dr. Tuttle!

I'm awaiting a bagle and soup for lunch... the first solid food in over 2 weeks. The GI is still recovering slowly, but it's on the mend and it looks like as long as I don't vomit in the next 24 hours, I'll be going home tomorrow midday after an IV avastin (anti-cancer) treatment.

I'll be doing IV pain killers (through my new central line catheter) and, possibly, nutrition at home (depending on how long it takes the bowels to fully recover). Then, it looks like it's back into the hospital as an outpatient on Friday for another abdominal tap and a PleurX catheter (TM). That is basically a DIY ascites kit so that I can do abdominal taps at home. It's pretty complicated, but for those who are interested in the technical details, I have included a picture (see below).


Picture courtesy of http://www.brucio.com/images/writing/gut_spigot_copy.jpg

yipee

The end of the tunel??

Well, there's some light up ahead. It's not real clear, but it's certainly there.

First, in the bowel department, still no real gas production (those who know me will know that this definitely is a sign that things aren't "normal" yet). But, I am eating food and keeping it down, and still having itsy-bitsy bowel movements from time to time. Hopefully all of this will continue. So, the plan is:

1. “Full” liquids today – the UVA nutritionists think that means pudding and Ensure (yuck!). I, on the other hand, am arguing for homemade broth (JK Chicken and Revolutionary Tomato Bisque). So far, I’m winning (mmm)


2. If I can keep from vomiting (and the nausea was much better today), Remove the NG tube tomorrow morning.


3. Watch things throughout the day and consider going home tomorrow, OR stay around for one more Avastin treatment on Thursday and then go home. As far as the Avastin/Chemo goes, we’ll probably give it another 2 to 4 weeks before we really know how well it’s working, but there continues to be a reduction in pain and ascites buildup, so that’s all good.

I spoke w/ a social worker today about home health care and, apparently, I can do all my intravenous nutrition and pain management at home. Plus, I can do lots of the chemo at home as well. I think it “helps” that the insurance company has started calling the hospital daily and saying, “you know, it seems to us like you could do lots of this stuff at home…” Never thought I’d be thanking my insurance company for pushing me out of the hospital, but in all seriousness, they’ve been great. They push and then say, “of course, it’s up to you…” Pretty amazing, huh? Hooray for the last vestiges of private health insurance… not sure if the system can keep working much longer, but I’m glad I’m still part of it and that I’m blessed w/ good coverage.

So, keep praying. We’ll see. It’s been GREAT to have a day w/ minimal nausea and significantly reduced pain.

(Image from: http://revjavadude.files.wordpress.com/2009/03/light-tunnel-01.jpg)

3 liters ... not bad ...

Well, you asked for it. Here's today's paracentesis pic of the week. That’s me and the 3rd-year medical student who is doing her 2nd-ever abdominal tap. The resident is holding the syringe w/ my abdominal fluid in it… he’s showing her how to do the tap, although, if you can imagine, I spent most of the procedure telling her how to do it myself... "now remember, when you make the incision with the scalple, it's important not to be too timid... etc." The resident probably spent the next 30 minutes telling how evertything I told her that was completely untrue.

She got 3 liters off. I’m pretty sure there was another half- to whole- liter in there, but she did a great job. I gave her a B+.

I told the Drs that as far as I know, there's not one word in HIPAA that would prevent me from posting their pics on the internet :) ... hooray for one-sided legal agreements...

still holding

Still not much to report... some continuing signs (very small but positive) that the bowels are starting to work. It’s been a little bit of a roller coaster of nausea and pain, but during the “highs,” I feel better than I have in weeks. I had a really good luke-warm latte this AM (mmmmm...) and some broth tonight; otherwise, as far as solid food is concerned, i'm having to settle for the food network (man vs. food... my new favorite show). Might be able to get rid of the NG tube tomorrow.

Had a good walk today with Karisa and Nichole (which included some geometry and was STILL good). This is my second "long" walk (across the bridges to jordan hall and the west complex, etc... i don't think they really want me going that far, but i can't help it... all these secret tunnels and walkways...i feel like a hamster...)



Steve Hobeck is my sleepover guest tonight (thanks so much to everyone who has signed up and spent the night .. Mark, Bentley, Kevin, Walt, Derek, Tom S...…) -- I’m trying to decide if I should put Steve on hemorrhoidal duty tonight… I’m thinking not… thoughts?

Had to say "goodbye" to my Springsteen tickets tonight. Well, Sam (or should I say "goose"), that's 2 strikes... under no circumstances will I be signing up for a 3rd... who knows what'll happen. Oh well, the tickets are in good hands :).

Thanks again to all who have called, emailed, visited, posted to the blog, prayed, and shown love in general. I'm abudently blessed.

not much to report

I wish there was more to report. Not much action. Tried to eat a bit of jello today, but ended up vomiting (yes... with the NG tube in place).

I continue to wonder when I will begin to exhaust the vast ocean of love you all have for me and my family... there are no signs of it slacking... it is nothing short of a miracle. My heart is so unbelievably tender toward everyone who has been the hands and feet of Christ, Himself, to me. Thank you.

Some Tail Wind

In my case, it’s the other ‘way round. The Dr’s want to hear something, and it’s not my heart. For those of you who know me, I pride myself on a healthy, farty, digestive track. But, alas, it is failing me. While a bit of loose stool is a good start, what we need is some honest-to-god flatulence, and we’ve been waiting for days. So (and I’m not kidding), please fast for some gas. Pray for the sounds of the uncorked symphony -- a bratwurst bugler, a butt trumpeter, a trouser troubadour, a colonic calliope, a gluteal tuba, a toothless kazoo, and a turd whistling for the right of way. Seriously, I’m hoping for a major backfire, a bottom burp, a cheek flapper, and a visit from Grandpa. I want to go insane with the methane, and kill the canary. I’m hoping for a serious tail wind and a minor trouser cough. Ummmm….. HUMMMmmmrrhoids.

Friday, 5/1

After a somewhat difficult night, Dave was able to get some rest today (Friday). They seem to be doing a better job of controlling his pain and the hemorrhoids are getting better. He has had diarrhea, a sign that the lower half of his digestive track is working, but the upper half (stomach) has yet to kick in. He can't eat anything until everything starts working. It's been quite a while since Dave's had any food (in the meantime, he's been watching the cooking channel!); the doctors are going to start giving him IV nourishment.

He had to be tapped again today (they took off about 4 liters)- this is the first time in about 5 days so the fluid production rate has definitely slowed. They put in a central line which will make future blood draws, IVs, and rounds of chemo easier on both Dave and the hospital staff. Dave's finishing up a 2-day course of the new chemo and we can continue to pray that it goes to work on his cancer.

Meredith