Out with the old, in with the new

In this case, the old port is out and the new port is in. I had surgery yesterday to remove the old port which was installed on July 3, 2006 and had become clogged. I had surgery earlier this month to remove a flap of tissue that had grown over the end of the catheter implanted in my superior vena cava (the biggest vein in the body that returns blood to the heart), but for some reason, it was clogged again two weeks ago and unusable. So, Dr. Feldman got another chance yesterday and removed the old port and replaced it with the snappy new titanium "power port" ("power" because it can handle fluids up to an astonishing 5 mLs/second and 300 pounds per square inch - WOW!). And Dr. Feldman, ably assisted by charming nurse Connie, in one of the coldest rooms I've ever been in, let me keep the old port (pictured above) so that I can turn it into an arty piece of jewelry. I was going to remove the silicone septum in the center (this is where the needle used to penetrate - you can still see the marks made by being poked 80 times) and have a stone mounted in its place, but I kind of like the silicone. Maybe a belt buckle or bolo tie?

And those of you who have thought ahead and wondered, "Don't those crazy people that Bob works with have some kind of weird voodoo doll that they fix up every time somebody in the group has surgery or goes to the hospital?". If you remember back a few months, it was my turn to get "Loafman" (see June 18, 2007 post), and he was given his own infusion pump and LiveStrong bracelet. So, of course, now it's my turn to have Loafman again, with a green silicone septum inserted into his shoulder, reflecting my new port installation.

And that pesky TIA (transient ischemic attack) two weeks ago? Inconclusive really, based on the CT scans done right after it happened, and on the MRI/MRAs done last Thursday. No metastases up there, and it wasn't a stroke. According to the radiologist's report everything looks pretty normal. Sigh...normal again. Not so much as a "Wow, this brain is incredible!" or even a "nice brain!". Just normal. Even though it's just normal to the medical professionals, I still think it's pretty special, and I love the images. Here are my favorites:

Always a silver lining....

01/18/2008

...and in this case, the addendum to yesterday's excitement is that my marker number dropped back down to it's pre-holiday level to 7.4 (after jumping up to 22 after an extra week off over the holidays). More festoons and hoopla are in order.

Uncle Phil - I think my brain is OK, minus the bent gears in yesterday's posted picture. Thanks for the call this morning. You deserve a beer tonight.

Problem Child....continued....

Remember that "cleanout" of my port two weeks ago? The surgeon fished a probe up from my groin, clipped away the flap of tissue covering the port's catheter, and we pronounced it good. Fast forward to this Thursday morning - I head to the lab prior to my biweekly basting to get my port accessed for blood work and for treatment. And nothing. No fluids in or out of my port - it's STILL CLOGGED! No wiggling, no twisting, no gyrations seem to make it work. So, helpful patient that I am, I brilliantly remember the "Valsalva maneuver" that has worked before. You hold your nose, purse your lips tightly and attempt to blow out for a few seconds. The resulting pressure in your chest temporarily blocks the blood vessels, and blood builds up. When you release the pressure, the blood rushes through the vessels, and the port is cleared. Except that it didn't work this time - and in a big way. I got really light-headed, and then lost all feeling and control of the left side of my body from my shoulder down to my waist. I couldn't control my left arm - it just flopped at my side limply and I couldn't figure out how to move it. Then it fell down next to me and dropped between the seat cushion and the frame of the chair. I attempted to lift but it jammed in the chair frame, but I couldn't feel it and involuntarily jerked it up and down a few times, making it look like I was having a seizure of some sort, which scared the nurse. She called for Dr. Gold - NOW! They freed my hand from the chair frame and made me squeeze Dr. Gold's hand with both my hands - the right one worked OK, but I couldn't squeeze with the left. Then it was "follow my finger with your eyes" "No, don't turn your head, follow me with your EYES" (duh). Eventually, I regained control of my arm and hand after about 20 minutes, but it kind of screwed up plans for the rest of the day. Up to Radiology for a CT scan - NOW, to see if I had a stroke (probably not, but let's check for sure), or if there was anything else amiss. Back down to the treatment center, and drumroll please.......The good news is that it wasn't another metastatic tumor (no, I'm really not shopping around for any more of them...really), which never even occurred to me as a possibility. And it wasn't a stroke, but it was sort of like a little one - it's called a Transient Ischemic Attack (TIA), which is a temporary, but reversible stroke. I apparently triggered it with my attempt to be helpful with the Valsalva maneuver. I'm going back to radiology next week for some more scans - MRI and MRA (magnetic resonance imaging and angiography) on my head, and CT scan of my abdomen to see what Heckyll and Jeckyll (my two big liver tumors) are up to. I can't wait to see the pictures.

And since the port is clogged up, I may get the chance to get that spiffy new titanium model installed anyway (insert audio clip of cash register ringing here). With no working port, it was back to another peripheral IV this week, but I didn't get the full nuclear option - only the Erbitux. The Avastin is out since it may make any possible vascular problems more problematic. Silent Bob also gets the next few days off as well.

So, now for this week's thank you's and apologies. Thanks to Kevin for getting the IV started with skill. Big thanks and special apologies to nurse Jennifer D. for acting quickly in making sure that I wasn't having a stroke and for wheeling me up to radiology - I feel badly for making your morning more exciting than necessary. And likewise to Dr. Gold - really, I'm not trying to be difficult - you're the boss. Just don't make me stay after and write on the blackboard "I will behave and not scare the nurses" one hundred times. And to all the nurses in the lab and treatment center - I really appreciate all that you do every time I visit.

I'll have to admit, I'm disappointed that this little complication has happened. I was pretty optimistic this morning when I went in - newly cleaned out port and all, and it just didn't turn out that way. Oh well... back to the old drawing board.

Happy Birthday!

Bring on the festoons and hoopla. It's the first birthday of this blog! I posted the first update exactly a year ago today. And how much snappier and technologically advanced it is now compared to a year ago. You may recall that my first post was actually a clay tablet that I inscribed with a papyrus reed in cuneiform, but this was much too difficult transmit electronically - the clay was much too heavy for typical bandwiths and took forever to upload and download, and dial-up was damn near impossible. Now we have links to other sites, the embedded video clip (that kind of worked for most readers), and a subscription link. Now if I could only figure out how to add a soundtrack - I'm working on it.



Some readers wondered what all the fuss was about in my last post about my "port". The port is a stainless steel and silicone device that is implanted in my right shoulder, and gets "accessed" every time I receive chemotherapy. A needle is pushed through the skin over the port (it doesn't hurt as much as you might imagine, even though the needle is big enough to use for upholstery), and into a blob of silicone rubber that covers the steel disk. This disk has a catheter that is implanted into my superior vena cava, which is the large vein that returns blood to my heart. When I receive fluids intravenously through the port, it is reaches the heart in less than a second and then pumped throughout my body almost immediately.

The problem I had last week was that a small flap of tissue about the size of my thumbnail grew over the end of the catheter and clogged it so that no fluids could go in or out. If the flap were smaller, the injection of the "rattlesnake venom" (which is not really venom anymore - they use genetically engineered e. coli bacteria to make the stuff) would have have dissolved the tissue and cleared the catheter. But there was too much stuff to dissolve away, so the surgeon fished it out by entering the femoral vein in my thigh with a thin wire and cutting off the flap and pulling it back out. I'm still pretty amazed they can do stuff like that. Next time, I'll have him install an MP3 player (IPod or Zune?) under my arm and I'll have something to listen to when I have to sit in the big green chair during infusion time.

I go back for another round this Thursday, and I'll get a new set of marker numbers. I'm still feeling the effects of the last round I received a week and a half ago (the return of the "burning face"), so it must be doing something.

And finally, a plug for colorectal cancer awareness. The good folks at the Colon Club publish a clever calendar every year called the Colondar. It features colorectal cancer survivors and patients. Buy a Colondar today - who knows, maybe you'll see someone you know in it. You can find them at: http://www.colonclub.com/colondar.html

Problem child

...yep, that's me. Back from vacation in North Carolina Wednesday night, and in for another round of treatment on Thursday morning. It should have been just another routine day of chemotherapy, but somehow things just went awry right from the start. Lately, it's been more difficult to use my port (where the needle goes in to administer the chemo), with some writhing and wriggling necessary on my part, or the use of the "rattlesnake venom" treatment to dissolve any tissue that may have blocked the end of the catheter (like we did last time). This time, no amount of gyration or rattlesnake venom could open up the clog (we tried the rattlesnake juice twice), so we had to get a lab sample from my arm, and then attempt to administer the chemo through an IV in my arm. I say "attempt" because it took three trys to successfully get an IV started. My skin has become so tough and leathery that getting a needle into it and not all the way through a blood vessel is pretty tough. Try #1 left a huge bruise, Try #2 produced a huge swollen knot, and Try#3 finally worked. This made for another long day, along with some bruised up arms to show for it.

Since my port was clogged, I had to go back to the hospital on Friday to have a "dye study" done to see where the clog was and if it could be removed. But before we could do the study, they needed a blood sample and had to start an IV again. Remember Thursday? Friday was a repeat of Thursday, and it took three tries to get one to work (thanks to their IV specialist who finally hit the winning vein). The picture above doesn't show all the holes poked in me, but I'm sure that a big drink of water would have had me looking like a lawn sprinkler. A note to Rick D. who is one of my friends and is presently studying to work in an oncology unit back in NC (it was good to see you last week!) - sticking your patients with needles is NOT easy work on some patients - I needed to have specialists to get my IVs started.

The dye study was pretty neat - I was sent up to the same surgical area where I had my port installed back in July 2006. I wish that I could have had a copy of the fluoroscope image that clearly showed my port and catheter in great detail. The image showed a flap of tissue over the end of the catheter that looked like it was approximately 1 cm x 1 cm. It's no wonder that the rattlesnake venom treatment didn't work - there was just too much stuff to dissolve. The surgeon indicated that this was pretty easy to fix - he could just cut off the flap. This would be simpler than removing the old port (nothing wrong with it) and installing a new one (I was disappointed that I didn't get the chance to "upgrade" to a fancy new titanium "power port" though). I don't remember much more after this - I got shaved some more (which should have me scratching like a professional baseball player later this week) and that's all I remember until waking up again back in the recovery area. While I was conked out, the surgeon fished a probe and cutting tool up my femoral artery (near my groin) all the way up to my shoulder, clipped off the offending tissue and removed it (see diagram to right - the bright ring in my shoulder is my port). I still can't figure out how he did it, but whatever he did, it worked. I spent the next several hours sleeping off the anesthesia in the recovery area before heading back to the treatment center for one more shot. So now I'm ready for the next treatment in two weeks, with no need for wild gyrations or rattlesnake venom to get the bad stuff put in.

And I'll need some more bad stuff put in - my marker number went up to 21, which may be because I skipped a week of treatment. Whatever the reason, it's obvious that we're still not done, and so I'll keep on with the treatments.

And thanks to Dr. Feldman and his team for the nice visit in surgery - I'm a satisfied customer.