The ABC's of doctor selection.

First, let me say that Ed and I are apparently "famous" in Seattle oncology circles. It's odd, but every oncologist I've talked to has heard of my situation. Apparently I was used as an example at a recent conference and everyone in town has some familiarity with me / us.

Certainly this isn't something to which one should aspire. Nobody got rich being a famous patient. However, since we find ourselves in this odd little predicament, it's certainly advantageous. Seattle is a big center for cancer research and treatment and this puts lots of brain power at our disposal.

So anyway, because of the job / insurance / coverage situation, we've been looking for new doctors. My previous oncologist was Dr. C., Dr. C. went to Dr. A. to talk about a peripheral issue, so now I see Dr. A. for that. My new oncologist is Dr. B. so I literally have Drs. A, B, and C (except C is really an X).

But the trouble is that I also saw a Dr S. at the local county hospital. Dr. S. is a good guy. He's called me personally a couple of times from his cell phone to ask questions and make recommendations. He's direct and we communicate well. He seems to actually care. I LIKE THE GUY.

However, he works in the county facility. YUCK! Sorry, but I have an objection to sitting in the waiting room with meth and crack junkies who can't wait to get their scripts refilled. I met with Dr. S. some 40 minutes late because of poor time management on the part of the facility. Quite frankly, Dr. S. seems to be the only one who gives a crap. Everyone else seems to simply tolerate what ever comes in the door.

So now I have to fire a good doctor. I honestly hope it won't contribute to his eventual dissatisfaction with the situation at that facility. It has to be frustrating to go through all that schooling....to dedicate yourself to a cause.... and have to treat patients in a setting like that.

"You Just Wait"

Ahhh, Velcade. The wonder drug.

I'll start by reminding my readers that I didn't think Velcade was giving me any side effects. It didn't then. It does now. I'm on round 3 and I have another round to go.

Velcade is a proteasome inhibitor. As my hubby Ed, the biologist, explained it to me, this means that a vital cell activity is squelched by Velcade.

See, cells rely on the creation of amino acids (proteins). When they're created, some of those proteins are created incorrectly and they need to be identified and chopped into tiny pieces so the cell can dispose of them. If they're not destroyed, the cell eventually dies because these defective proteins build up and kill it.

So what Velcade does is suppress the action of the proteasome, which is the little chopper that seeks and destroys the bad proteins.

Ok, so why would you suppress the action of a necessary defense system? Simple: It is presumed that the cancer cells will die before the regular cells do. So, give the inhibitor until the cancer cells die and then let the regular cells go back to work by eliminating the drug.

The whole thing makes some sort of macabre sense, and it DOES seem to be working, but there are side effects.

See, when I started the drug, my regular cells seemed to be working fine. The proteasomes were working. The drug shut them down, but the cells didn't start filling up with bad proteins immediately. It took time.......

A direct parallel can be drawn with the New York City Sanitation strike some time ago. The garbage trucks stopped rolling and nobody cared. There was no trash on the street on the first day of the strike. There was no trash on the street on the second day either. Then trash started to appear on the street. And more, and more, and more until the sidewalks were full of stinky piles of detritus. Velcade is like that. You and the cells don't really notice...... until the cells get full of garbage proteins and cell death starts. Until you start to feel like hammered dog-doo. Until you discover you have the endurance of a fruit fly.

Don't get me wrong. It's not completely debilitating. It makes me feel lousy and it seems to make me susceptible to all kinds of peripheral illnesses / effects. BUT, it's one hella lot better than Thalidomide.

Anyway, I'll return you to your regular programming.

Blood test numbers

The infection seems to be gone. They've taken me off the antibiotics and removed my midline (IV). However, they've been taking blood every time I go anywhere and I'm noticing a trend. My RBC, Hematocrit, and Hemoglobin counts are slowly wandering downward. This means I'm becoming mildly anemic.

Nobody's alarmed yet, so we'll just keep an eye on it for a while. Heck, the numbers might be going down just because of the amount of blood they've been drawing.

Three doctor appointments and a trip to the airport tomorrow. Yipee.

Infection!

On July 30, at about 5 or 6 pm, I realized that my apheresis catheter area was beginning to hurt a bit. It's always itched, but the pain was something new. It bothered me a bit, but since I was in the middle of inspecting, recommending, buying and riding a new motorcycle for a friend, I sorta ignored it until I got done. You know how it is, the job at hand is always more important than a little discomfort.

Well, when I finally got home, I looked at the site and it was pretty ugly. Swelling, redness, pain...... all the signs of an infection.

Now, if you look at the picture in a previous post, you'll see what the cath looks like. You can imagine that whole area, from the entrance to the upper gauze pad being red and swollen.

Ed and I aren't stupid. We went to the Urgent Care facility and finally saw a doc at about 10pm. Blood tests, bacterial tests, antibiotic infusion. "Please come back and see us in the morning."

So I did. I felt like rolled up doggie dookie! They poked, they prodded, they gave me more antibiotics by infusion. Then I was told the catheter had to come out. No questions, no argument. It was coming out. I didn't complain or worry about the cost of getting a new one when harvest time comes..... This infection had the potential to kill me quickly in spite of everything we'd already been through.

So, I had a minor surgical procedure that removed the source of the infection. Local anesthetic wasn't terribly helpful because most of the pain was actually in the chest muscles, not the skin, so it was unpleasant to say the least.

Ok, so I got home, crashed like an old hound, and slept through the call the hospital gave me about a little "problem". It seems they took some samples from the cath and my blood tests to confirm I have a staph infection in my blood stream.

This is NOT a good thing. Particularly since my immune system is compromized by the Multiple Myeloma.

"Please come back in and get some more antibiotics and we'll teach you how to administer your own at home."

Ok, should be no big deal, right? Wrong!

Well, now I have a different kind of line. They're calling it "long term" or "semi-permanent". It's basically a specialized IV line that goes in the big vein in my left arm.

And now, every 8 hours I get to give myself an infusion of a saline flush that's followed by 20cc of Cefazolin I infuse over a period of 10 minutes (by hand at 2cc per minute), and that's followed up by another saline flush.

Yup, every 8 hours. FOR THE NEXT 30 FREAKING DAYS!

Makes me understand the saying: "If the disease doesn't kill you, the healthcare system might!"

I'm SO TIRED of being sick. We're right at the first anniversary of symptoms, and at 11 months since diagnosis. I didn't know they made roller coasters this long.