Irrational Numbers

I had my most recent doctor's appointment on Monday, 14 December 2009.

My weight is down to 135 pounds and my CEA went up to 87. This is the wrong direction for both of these numbers; my weight needs to increase and my CEA needs to drop.

However, my oncologist, Dr. G, says that the CEA measurements are not that "telling" during the first month of treatment. He said the CEA from Monday's appointment will be more meaningful.

Keep your fingers crossed.

Update: I just talked to my doctor - my CEA from Monday is 81. Not a great improvement, but at least it didn't go up.

More Good News (I hope this is a trend)

I saw my oncologist, Dr. G, today and I got two pieces of good news:

1. I gained four pounds; I now weigh 139 pounds

2. My CEA (from two weeks ago) is/was 55. This is down from 75 about a month ago.

Hopefully this means the new treatment is working and I don't have to go urn shopping just yet.

A few bits of Good News (for a change)

I saw my oncologist, Dr. G, on Monday, 16 November 2009, and actually got a few pieces of good news:

1. My weight has held steady at 135 pounds.

2. The MIR of my brain came back negative for cancer.

3. I do not have Lynch Syndrome. Lynch Syndrome is a defective gene that increases your risk for colon cancer from ~7% to 70%. Knowing that I don't have Lynch Syndrome doesn't actually do much for me, but it means my son, Kyle, has a slightly improved chance of living a cancer free life. And that my friends, is good news.

Insert Raspberry noise here

This morning Marjorie and I met with Dr. G, my oncologist, to get the results from last week's PET scan.

But first, the good news:

1. my weight held steady at 135 pounds
2. all of the tests from the hospital came back negative for infection

(Okay, it's all downhill from here. Way downhill.)

The "everything including the kitchen sink" treatment is not working. The lesions in my liver and lungs have increased in size and number.

So, starting soon, I will be taking an oral chemotherapy drug called Xeloda and a blood vessel growth inhibitor called Avastin. I took Xeloda when I was getting radiation and I've had Avastin before also.

We're gonna try this treatment for two or three months and if it doesn't work then, "we are running out of treatment options," according to Dr. G.

I think we have two options: one is to sign-up for Phase 1 Testing of some new cancer drug; we've started the ball rolling on this. The other option is to give-up. If I do this, Dr. G says I will die in, "a matter of months." I've started my Bucket List and cried - a lot.

Either way, things are not looking so good and I'll probably be doing a lot more crying. Mind you, I'm not giving up, but the prospect of my death is somehow more real now and it depresses the hell out of me. But, no pity please. I will continue to fight this (even if I'm blubbering at the same time.)

Weasel Boy

So I managed to weasel out of treatment on 5 October 2009. This was partly because I weighed in at 138 pounds, but mostly because I had a fever of 101 degrees.

Normally, the doctors and nurses tell you that you need to call in immediately if your temperature gets over 100.5. (The implication is that they will then send your butt to the hospital.)

Luckily for me, Dr. G (my oncologist) asked me if I wanted to go the hospital or just have my blood drawn at the treatment center and then go home. I picked "draw blood and go home". So the very nice nurses proceeded to draw my blood - lots of it. I ended up "giving" four bottles of blood that looked a lot like Tabasco bottles (especially when they were full).

Later that week they called to say all of the tests came back negative for infection and that the cancer in my liver may be what is causing my fever.

So, now I have yet another symptom/side-effect to deal with. Fun!

Size Zero?

Sometimes you're the windshield
Sometimes you're the bug

"The Bug"
Mark Knopfler

For the last two weeks, I have definitely been the bug. The new "everything including the kitchen sink" treatment is kicking my ass. At my oncologist's appointment two weeks ago, 8 September 2009, when I weighed in, I was 146 pounds. Yesterday I was 137. (Clearly I need to eat more lard.)

In addition to having zero energy and being nauseous all of the time, I also managed to have diarrhea and constipation at the same time. I won't go into the details, but it was confusing, weird, and just plain gross.

Dr. G has cut back my chemo drugs by 20% this round, so maybe I won't be the bug this next two weeks. We shall see.

Status Update

I went to see my oncologist, Dr. G, on Monday, 24 August 2009.

The good news is my weight is up to 142.8 pounds.

The bad news is that was the only good news.

The results of the PET scan show that Frank's evil little minions are spreading: the spots in my liver and right lung have gotten bigger, I now have a spot in my left lung, a couple of my lymph nodes in my abdomen have spots, and my left hip bone and sternum have spots too. (This last one explains why I constantly feel like I've been punched in the chest.)

So, what's next?

Not urn shopping.

We're going to try everything all at once: the erbitux, camptosar, and the 5FU (via the fun take-home pump). The difference this time is we are going to more aggressively manage the side effects. Treatments will be every two weeks, so hopefully I feel somewhat human every other week.

Also, if the pain in my sternum gets too bad, I might go in for more radiation.

This cancer stuff is more fun than a kick in the head! (But not really.)

Back to Reality

Last Monday, 22 June 2009, I went in to see my oncologist, Dr. G, and get my 4th treatment of erbitux and camptosar.

The good news is that I gained six pounds while I was in Hawaii. I'm now back up to 141 pounds.

The even better news is that the new treatment seems to be working; my CEA (a measure of a protein produced my cancer cells) went from around 30 before the trip to Hawaii to around 10 on Monday. (Normal is around 5.) This gives me a lot of hope that Frank's nasty little friends will be gone by the end of Summer.

Time for a Change

Today, I went in for my third chemo treatment.

When I did my weigh-in, my weight was 141 pounds. I can't remember weighing so little at any time in my adult life. Marjorie and Dr. G, my oncologist, were both equally appalled that I look like Calista Flockhart.

So, we're going to change my chemo treatments from once every two weeks to every week starting tomorrow.

At first, this doesn't sound like much of an improvement, but the new regimen will involve lower doses of the various chemotherapy drugs and will completely cut out the 5FU (which I took via a pump for 46 hours after each chemo treatment). Both Dr. G and I are guessing the 5FU is what's cleaning my clock (i.e., nausea and lack of energy) and the theory is the by removing it, I might have a little more energy and feel like eating.

This means I might lose my supermodel status, but I'm willing to make that sacrifice.

One way to re-gain weight

My pharmacists had this poster in their work area:

Eat your heart out Jenny Craig ...

... and then throw it back up.

Way back in September of 1991, I weighed 145 pounds. I had just finished working the Summer at Callaway Gardens with the FSU Circus where I performed eight shows a week, chased 7 to 15 year old kids around eight hours a day (as part of the recreation program), worked-out three days a week, and ate reasonably nutritious food.

Over the next 16 years my weight climbed up to 190 pounds.

Now I'm "happy" to announce that I'm almost back to old weight by using the amazing Colon Cancer Weight Loss Program. Through a combination of extreme nausea, diarrhea, and just flat out not eating, I've lost 40 pounds in five months.

A couple more rounds of chemotherapy and I should be lookin' like a supermodel.