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.