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.

Not exactly what I wanted to hear

On Tuesday, 8 December 2009, Marjorie and I drove over to Tampa to the Moffitt Cancer Center. (If it comes to it, Moffitt would be where I would go for a Phase 1 Clinical Trial.)

After filling-out tons of paperwork, we met with the doctor. She explained that being in a clinical trial was less about making the patient better and more about tweaking the dosage and schedule of a new cancer drug. It's kinda like donating your body to science - you're not going to get much benefit from the "experience", but you will be making the world a (slightly) better place.

Of course, this isn't really what I wanted to hear, but if my current treatment doesn't work, I will still sign-up for a trial. That way, this whole cancer thing won't be a total loss.

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.)

Now with less nasty Taste!

On Monday, 17 August 2009, I went in for yet another PET scan.

Typically, the process involves:

1. getting injected with a radioactive sugar solution
2. drinking a cup of "contrast" solution
3. waiting 90 minutes for the sugar solution to circulate
4. drinking another cup of contrast solution
5. getting a 20 minute CT scan

Normally the contrast solution tastes like stale, moldy ass juice. However, my nurse had good news for me: the solution tasted better now. And he was right; it tasted like light sugar water with just a hint of ass juice.

Now this may not seem like such a big deal, but after spending the last year and a half being poked, prodded, sliced, diced, poisoned, and fed various noxious things, I'll take any improvement I can get.

Harsh Reality

So I'm a bit bummed today; I got the results from my latest CEA (a measure of a protein produced by my cancer cells) and it wasn't what I was hoping for.

About a month ago, my CEA was down to 10.9 (~5 is normal), but today it's at 22.4. Now I know that these things fluctuate and I know that I shouldn't get worked-up about one test result, but I'm still disappointed. I thought I was making great progress and I was hoping that this phase of treatment might be over soon. 'guess not.

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.

Solid!

Solid in, solid out.

Finally.

Firsts

Friday, 20 March 2009, was a day of several firsts: it was the first day of Spring, it was my first day home from the hospital, and it was the first "birthday" of the late, great Frank the tumor.

A year ago, as the effects of the anesthesia from my colonoscopy were wearing off, my gastroenterologist told me that I had a moderate sized mass in my colon and that it was most likely malignant. A week or so later, my surgeon, Dr. M, told me that Frank was "big" and that the tumor was five to ten years old.

Five to ten years old? WTF!

That means I could have had Frank when I was 34 to 39 years old.

So, two things:

1. Friday wasn't really Frank's birthday

2. Go tell your doctor that you want a colonoscopy right now. Don't wait. Do it now.

Reconnecting with old Friends, Part 2

Tomorrow, 12 March 2009, I go into the hospital to reconnect with an old friend: my colon.

When my surgeon, Dr. M, evicted Frank, he chopped out about ten inches of my colon. To give my poor colon time to heal, he rerouted my small intestines into an ileostomy bag.

While pooping into the bag has been loads of fun, I'm really looking forward to using the toilet like a normal person.

Well, that sucks

I had my three month follow-up appointment (to go over last week's PET scan results) with my oncologist, Dr. G.

The short version is: I start chemotherapy back up in three weeks.

The long version is: I have four spots on my liver and two "little" nodules in my right lung. The new treatment will be much like the old one, only with different drugs.

I'm more than a little bummed and mildly freaked-out about all this. I was hoping that I was past all of this crap, but apparently I'm not. Still, I have lots to live for, so I will do whatever needs to be done.

Random Bits

1. My son Kyle is trying to smuggle home the playground at school two shoe fulls of sand at a time.

2. I've inspired my friend Jim to see a doctor and insist on a colonoscopy.

3. I've finally set-up a profile on Facebook. (It's just a habit, I can quit any time...)

4. In addition to having my ileostomy reversed on 12 March 2009, I will also be having my new hernia fixed.

5. We've put down a deposit on the rental in Hawaii and we've booked airline tickets.

6. Spring is in the air - a red shouldered hawk has been hanging-out in our back yard for over a week doing the "hey baby, hey baby" call.

The Proof is in the ...

pimple.

Warning: the following may be Too Much Information (TMI).

Many years ago (shortly after the dinosaurs died out), I was a high school student. Like most high school kids, I had acne. However, my mother assured me that when I was "all grown up" my face would be clear.

Although my skin cleared up a bit after high school, it was never completely pimple free.

That is until I had chemotherapy. In addition to the bazooka vomiting, lethargy, and feeling like crap, one of the side effects of chemo was that my face cleared up. Completely. Nary a zit for over sixteen weeks. I was officially all grown up.

So where am I going with all of this? Well, now that I have been off chemotherapy for two months, I can tell that the drugs are leaching out of my system because ...

... wait for it ...

I have pimples again!

Who would have guessed I would be happy to have a pimple?

Schedule Slip

Much like death and taxes, schedule slip is pretty much guaranteed. The operation to reverse my ileostomy has moved from 19 February 2009 to 12 March 2009. It's more of an annoyance than anything else; just a few extra weeks dealing with my fun bag of poop.

Next

I saw my surgeon, Dr. M, yesterday (7 January 2009). I'm scheduled to have my ileostomy reversed on 19 February 2009. He said the surgery won't be nearly as invasive as the last time and that my stay in the hospital could be as short a one day or as long as two weeks. (They won't discharge me until my bowels become "active" again.)

Hopefully my GI tract will cooperate and won't have to endure too much fun at the hospital.

Remission

I'm now officially in remission.

However, the "fun" doesn't stop here.

I need to get my ileostomy reversed in a couple of months, I need to undergo two PET scans in the the next twelve months, and I need to have my port removed in about a year.

Oh, and I also have to see my oncologist every couple of months for a year.

So even though I won't be seeing a doctor or medical professional every week, I still have a lot of doctor appointments in my future.