Sixteenth

Woohoo! Show and Tell.

Some of you wanted to see my wound - for those of you who don't, I'll try to make this post long enough that the pics won't show up unless you scroll down.

Attitudes regarding my tumor there have changed. I went to both the chemo doc and wound clinic on Thursday.

I won't be having anymore treatments of this drug Doxil. I can feel some new bumps and growth of this bigger tumor and the doc agrees. I'm having a scan next week so we can take measurements to see how much bigger and where it's going.

The doc at the wound clinic, seeing that the wound was worse and still draining a lot, thinks that as long as the tumor is pressuring up through the skin, it won't heal over. She says that really the best she can do is try to help me keep it from getting infected.

My surgeon is out of town, so I'll see him in two weeks to get his opinion. I may be having surgery again. If it's up to me, I vote for surgery. The concerns are still the same, but I'd rather be dealing with a clean-cut surgery wound, drain bulb, and hopefully no tumor, than dealing with this raw, free-draining sore with the growing tumor behind it. I guess it depends on the scan - we want to see what tissues the tumor is invading, and how active the cancer is in surrounding lymph nodes.

Alrighty, here's some pics - yes, those are pubes in some of the pics. Grow up.

This is all the stuff I lay out before I start.

Here's the wound. It's not infected, it's just that color. There's dead tissue that sloughs off from time to time.

This is the catheter and syringe I use to irrigate the hole. The catheter is marked in centimeter increments. In some places the hole is almost 4cm deep.

Here's me poking the ribbon into the hole. You can see that this makes the hole unhappy, but it only bleeds a little.

Then I wash my hands, slap some gauze and tape over the wound, wash everything down with antiseptic, and put it away til tomorrow (or sometimes just til tonight cuz the gauze gets saturated).

There ya go. If no surgery, I'll be starting a new chemo called Gemzar. It's a fast infusion, but I'll be back on a weekly schedule with it.

A few people have asked why this drug this time, why not more of drugs that have worked in the past, are we just shooting in the dark, etc. If a particular drug doesn't work, it plain doesn't work and more of it will not make a difference. If a drug works for a while, then stops working, it's because the cancer has evolved and developed an immunity to that drug - a higher concentration will not make the drug continue to work. As for which drug, it's based on past research and treatment. The doctors chose the first chemo because it had the highest success rate for people with this type of cancer. When that chemo didn't work or stopped being effective, they went to the drugs with the second best record, then to the third, fourth, and so on. So the odds for some response to the chemo get worse as we go down the list - but there has been a response in at least some of the people treated with any of these drugs, or we wouldn't bother. We're keeping an eye out on experimental stuff, though, you never know what these guys will come up with that might work.

Cheers

Fifteenth

Okay, so if I have to do it, you have to read about it. Cuz this gives me the willies and I need to pass them around (even though this would be kind of cool if I was helping someone else with it).

My wound where my tumor broke the skin is now about an inch in diameter. Basically a big open sore, the surface looks kind of like cauliflower, but white and red and purple. There's about half an inch of skin all around it that's puffy and sort of purply-blue.

I went to the wound clinic at LD on monday, where they cleaned it and taught me how to take care of it. The taking care of it is what is freaking me out a little bit. It's draining and trying to heal, but if it heals over before it's done draining, it'll just bust open again or get infected. I have to wash it with soap and water, which isn't a big deal. The ewwww factor comes next. The purply-blue skin around the sore is not really attached to the tissue underneath and that's where the draining fluids gather. So I have to stick a small catheter (attached to a syringe with saline) under that skin and work it around to flush everything out. Then, the wound has to be kept open so it will continue to drain. I get to pack it with a ribbon of gauze that's half an inch wide by about four inches long. I stick the end of the ribbon on a qtip and work it into the line between the sore and the puffy skin, and keep going until most of the gauze has disappeared into this oozing hole in my belly. I cover it with more gauze and some tape to protect it for the next time, about eighteen hours later. Then I shudder for about an hour remembering the feeling of the ribbon being packed in.

Stupid crappy cancer.

I was suprised that there was an entire clinic devoted to caring for wounds. My past experience has been, you have a booboo that heals or if it needs stitches or gets infected you just go to your doctor, or it takes a little longer to heal. I guess there are a lot of chronic wounds out there. Some are cancer related, some are due to a compromised immune system where the body simply doesn't have the resources to heal, some come up in conditions like diabetes and the body's circulation isn't good enough to allow the wound to heal.

The doc I saw didn't think my wound was too serious. She just said the biggest thing to watch for was infection, but the signs would be quick and obvious. I see her again in ten days, during which time the sore will probably continue draining as much as now. Ewww again. Surgery is not a good option. For one thing, I'd have to stop chemo treatments for about four months. For another, the tumor is just below my big scar from the last surgery, so between the scar tissue and the poor circulation and drainage because of my bad lymph nodes there, the surgery site might never heal and would be prone to infection.

I'm mostly just pissed off about it though. I can't take a soak in the bathtub with this thing on my gut. /sigh That used to be the highlight of my day, sinking up to my ears in all that warm water. Oh well, you do what you gotta do, right? I'll have to find a new hobby I guess lol.

Cheers

Fourteenth

Sorry, didn't mean to worry you, and I'm just going back to "alright" lol.

I just wanted to say I continue to appreciate your good thoughts and support. Between calls, notes, or even the lurkers - I feel cared for, and that's always a good feeling.

Well, I was going to start back to work but another fun thing happened. One of my tumors, about golfball-sized and just under the skin, the skin over it has split open and won't heal. It's not a big gusher like what happened last year, but it's having trouble healing because the tumor keeps pressuring up through the skin. The skin there has a lot of scar tissue, radiation damage and such, that's why it's having trouble. I've had the limit of radiation for that area, and surgery isn't a good idea because of the scar tissue, bad lymph nodes, and poor circulation and drainage. Infection would be very likely with surgery. I get to go to a "wound clinic" for advice on treating and closing the wound, and hoping this new chemo shrinks the tumor a bit so there isn't as much pressure on it.

They're taking me to see BodyWorlds today and I'm really excited. I've wanted to see it since I heard about the original in Germany, and I can't believe it's here in Salt Lake.

Cheers

P.S. I still have some strong feelings over the Prop 8 vote in California and local involvement. If you want to discuss it or even argue with me, let me know. All I ask is that you listen as respectfully to me as I will to you.