New Chemo

Today was my first day of the new chemo regiment. They give me three drugs while I'm there - one just to prevent nausea. Then when I leave I get a bagful of the old chemo that I initially had with the pump (5FU). I only have to wear the pump for 48 hours, then I get it off and have 12 days with nothing, then more of the same. I can live with that.

The infusion center is not too bad, but they have to watch me the whole time I'm getting it, so it took 5 hours today. It should only take 3 1/2 after today. I even had to go to a "training" session the night before the chemo so I knew what to expect.

Here's what to expect: unpleasantness. But I'm whining too much, I have it good compared to a lot of others. The infusion center is always a reminder of that!

Yoga at the Senior's

This picture is from the front of the south Austin Senior Activity Center, where I go to my yoga class and where Mom spends a lot of her time playing bridge. I go to yoga MWF but that may change next week. I found out my numbers went up again, so they are going to do a CT scan tomorrow (Friday) and then start the new chemo Wednesday morning next week.

I'm disappointed that the numbers went up but the doc says this happens. You try one drug for a while and when it stops working you try a different one. This can go on for a long time so I'm hoping that these new drugs will last. I'm still feeling good and keeping upbeat. It's all going to be OK!

By the way, it's not all old people in the yoga class - it's actually very difficult, especially for me - the least limber person in the world!

You Gotta Make Do

It rained a lot last week and Barton Springs has been closed so we have been going to Deep Eddy to swim. That's Karl and Mom on their way to the pool. It was sunny but cold but once you get in the water it's not so bad. We're glad Barton Springs is opening on Thanksgiving day!

Meanwhile I am on my third day of 14 days of Xeloda pills and then I'll get lab work done and hope my CEA numbers go down. Whatever happens I'm a thankful person because I'm feeling well. Hope everyone has a great Thanksgiving!!

Good News

I talked the doc into another round of Xeloda. I think I can bring the numbers down. Wish me luck!

Bad News

My numbers went way up, so I have an appointment today with the doc. I assume he will recommend new chemo, but I'm hoping for one more cycle of Xeloda. I think I can bring the numbers down, just give me one more chance!

Little Tom Tucker
Sings for his supper
What shall he eat?
White bread and butter.
How will he eat it without e'er a knife?
How will he marry without e'er a wife?

That's a poem that's in my doctor's office. I like it.

Back Home

We just got back from Wisconsin, where we went to a Badgers game and a Packers game thanks to our Murphy cousins. The Badgers game was great. I don't really want to talk about the Packers game, except that it was a fun to go back to the stadium and we had a great time despite the outcome. I'm grateful that I can travel freely since I'm still on the chemo pills. My CEA numbers went up last check, but not very much and the doctor said he was pleased with the numbers. I'll get checked in another two weeks and hope the numbers stay low enough to keep on the pills!

No News is Good News

I have this theory about surgeons that if
you go to a surgeon enough times that the surgeon will recommend surgery. I've been told that's not the case with my surgeon - he'll only recommend it if it is absolutely necessary. I believe it. He's a good guy. I went in today for my third sigmoidoscopy and I was worried that he might say surgery was imminent. Good news - nothing has changed and I can wait another 10 weeks before I go have another sigmoidoscopy. That's fine with me - I don't exactly enjoy the procedure. I have another theory - Sigmund Freud would have a field day with sigmoidoscopies, especially if you actually enjoyed the procedure.

Dear Diary

This is a picture of my "treatment diary" that came with my Xeloda package from the oncologist. I take the Xeloda pills every morning and evening and fill in the information on the page. It's a good way to keep track of your progress and any side effects you may be having. One side effect I have is hand-foot syndrome - also known as palmar-plantar erythrodysesthesia, or PPE. Fortunately I have a very mild case of hand-foot syndrome, but for some reason I keep thinking its called hoof and mouth disease. Why is that? Wisconsin upbringing?

Why is This Man Smiling? Because Down is Good!

I've been waiting for some news to post something - I've been on the chemo pills now for 6 weeks. After the first "cycle" of 2 weeks on and one week off my CEA number went up from 35 to 42. That was not good news, but not alarming so we went for another cycle and I had the lab work done yesterday. I was worried because the doc said if it went up again I might have to go back to the dreaded pump and start the stronger chemo. I just got the new number - it went down to 28!! I'm still smiling!! Thanks again to everyone for your prayers and support!!

It's all about the numbers

I got lab work back today. I was hoping my CEA (Carcinoembryonic Antigen) number would go down again but it went up. That's a bummer, man. But the good news is that it didn't go up very much so the doc says I can continue on the pills for now. He also said that he does not want to overreact to one number. Don't freak out. Never freak out. It's all about the numbers. The Packers beat the Bears 21-15 last night. Those are a few numbers I'm very happy about!

It rained in Austin!

It's a little off subject, but anytime it rains in Austin it's a big deal these days, and it rained last night. It rained enough to close down the pool, which was unfortunate since last night was supposed to be the full moon party and they had to cancel it. That didn't stop us from going this morning and then having breakfast at Mom's. I should do a blog about that...oh, never mind.

I've taken 5 full days of the chemo pills and so far only minor side effects that are not bad. I gotta be happy about that!

Pills

It's difficult to take all these pills in one day, but I'm working on it. The three at the bottom are the most important - those are the new chemo pills called Xeloda. Buy stock in that company immediately. I take 3 of those in the morning and 3 in the evening.

Does he really, REALLY need it?

I met with the nurse today and we went over the chemo pills I'm going to be taking. It actually the same chemo drug I was taking earlier but in pill form, and as I've said, I'm very happy about that. Apparently I responded well to that treatment because the doc said that the liver and lymph nodes look much better.

After my appointment I went to the pharmacy to pick up the pills. After a long wait, the pharmacist called me up and told me that my insurance company wanted to talk to the doctor to make sure that I needed this medication. It was a prescription FROM the doctor, with his signature on it. I'd say that means he thinks I should get the medication, but I guess Blue Cross Blue Shield wants to be absolutely sure. The pharmacist said it could take two days. You have GOT to be kidding me. Yo, Blue Cross, you're messing with my chi!!!

A Week of Good News

I've had a lot of good news in the last week. Friday I learned that the tissue near the tumor is softening, which means the radiation is doing what they had hoped it would do. I'll have a follow-up in 4 weeks on that. Monday I had lab work done and the CEA marker went down from 72.9 to 35.4 (it should be <3, but the lower the better). Wednesday I had CT scans done and the doctor said the liver and the lymph nodes look better and I can start taking pills instead of using the chemo pump! I'm really happy about that. This has been a great week! Thanks to all of you for your prayers and support!!

Don't get your hopes up, CaT!

I never really know what's going on. I went to the oncologist's office today thinking that I would start the new chemo, but the doctor said he'd like to do another CT scan first and if things look better or the same, then he'd keep me on the old chemo, and it is possible that I could even take pills instead of the dreaded pump! Man, I got excited about that, but then he said "Don't get your hopes up". How could I NOT get my hopes up?

I'm going to have the CT scans done Wednesday. Here's a picture of the stuff I have to drink before the scans. Barium Sulfate tastes like... umm... Barium Sulfate. I don't care if they call it a Berry Smoothie. If you ever have to drink it, drink it cold. It's better that way.

Supplement City

At the urging of a very good friend of mine (and cancer survivor), I went to a world renown specialist in nutritional oncology who has an office right here in Austin. He's a very friendly gent with an impressive resume and he must be good because it took weeks to get in to see him. The appointment was timely since I will begin my new chemo regiment next week, and he had suggestions on what to eat and what not to eat before, during, and after the chemo sessions. He is quite the intellectual. He told me about some supplements that can act as immunomodulators and then he started talking about anti-angiogenic therapy and vascular endothelial growth factors and tumor neovascularization and by then I could only smile and nod and occasionally grunt out an "Uh-huh, yeah. Sounds good."

I did get the general idea; some of the nutritional tips and supplements will increase the effectiveness of the chemo, and other supplements will decrease the negative side effects of the chemo. Works for me, dude!

A Nice Break

I'm done with radiation and I have a break from chemo, so we decided to take a mini-vacation. We just got back from four glorious days in Ruidoso, NM. The high temperature was around 78 degrees and it was down to the 50's at night, a welcome relief from the 100's we have everyday in Austin. We stayed at The Inn of the Mountain Gods. When I saw this sign I thought "What a conundrum - do you play golf or go to the casino?". I quickly realized the answer is easy. Play golf. After all, you can't play golf in a casino, but you sure can gamble on the golf course.

One day we played miniature golf and ran into the Dalai Lama. Big hitter the Lama - long. I asked if he had any tips and he said that there would be no tips, but that on my deathbed I would receive total consciousness. So I got that going for me, which is nice...

One More Day

I only have one more day of radiation!! I should have named this machine. I talked to it a lot while I was there but never gave it a name, at least not one that I feel like I should share right now.

Re-Accessing The PowerPort

I have a state-of-the-art PowerPort port-a-cath that was installed under my left shoulder blade. This is where the chemo is administered. Today I had to get my port-a-cath "re-accessed" as the nurses say. I have plenty of chemo drugs still in the pump, but they have a rule that you can only have the needle in the PowerPort for 7 days, then they have to flush it out and give you another needle. The PowerPort is just under the skin and it hurts a little when they put the needle in, but it's not too bad. I was kind of bummed that I had to get it re-accessed since I'm going to get rid of the pump on Friday, in 48 hours. Actually about 46 hours from now, but who's counting?

I am!

Thank You. Thank You Very Much...

The support I've received from family and friends (you guys!) has been incredible, and it has really helped me over the last couple of months. I don't know what to say except thank you. That just doesn't seem to express how much it means to me...

Today I got a very cool present in the mail from my cousin Tom and his wife Donna. It's a Japanese daruma doll for making wishes. I haven't made my wish yet, but I am about to do that and fill in one eye.

Check out the Wikipedia definition:

Daruma dolls (達磨, daruma^?), also known as dharma dolls, are hollow and round Japanese wish dolls with no arms or legs, modeled after Bodhidharma, the founder and first patriarch of Zen.^[1] Typical colors are red (most common), yellow, green, and white. The doll has a face with a mustache and beard, but its eyes only contain the color white. Using black ink, one fills in a single circular eye while thinking of a wish. Should the wish later come true, the second eye is filled in. It is traditional to fill in the right eye first; the left eye is left blank until the wish is fulfilled.

...and Rose Marie ...

My oncologist is a Dick van Dyke fan and has this autographed picture in one of his exam rooms. He said he met Dick van Dyke once and he was a very friendly, nice guy. Last week I had an appointment with my doctor and I started to think about the opening song to that show and the scene where Rob Petrie either trips over or avoids tripping over the ottoman in the living room. I had that song in my head for three days. I think it's back.

Infusion Center Blues

This is the infusion center where I got my new chemo pump today. It's not my favorite place. There are about four stations with four or five chairs each and everyone sits around either getting chemo administered or getting pumps installed.
I enjoyed having a break from the chemo but my mouth sores are all gone and it's time to get back in action. The good news is that I'll get another break after next Friday. Next week is the last week of radiation and then I'll get two weeks off before they start the "new" chemo, which is supposed to be higher dosage and administered at a different rate. Instead of having the pump 24x7, I'll have it for 48 hours straight and then get 12 days off. Then another 48 hours on, 12 days off, for as long as it takes. The goal is to get the markers down and kept down. Markers - sounds like Vegas!!

Count Your Blessings Every Day!

I can't describe how nice it is not to have the chemo pump attached to me. I just have a short break but I'm trying to savor every moment. Just being able to walk around, sleep without it, shower without worrying about it, and of course, swimming at the pool! This morning we all went for a dip at Barton Springs, and then Cathy and I went to the farmer's market. The freedom of being able to move around without the constant worry of the chemo pump is great.

It should go without saying, but it is the simple pleasures in life that really are special. So remember every day how fortunate we are to be able to do the simple things in life!

Unexpected Chemo Break (good) - Unexpected Pool Closing (bad)

This morning I met Dr. Tucker before getting a new chemo pump and he decided that I needed a break from the chemo since I was getting mouth sores (one of the side effects I failed to mention in my last post). I was concerned at first, but he said it's not uncommon and that we would let the sores heal and start back up next week with a lower dose. Once I found out it was OK and not to freak out about it, I said "So this is like a week long vacation?!" and he said "Yeah". The best part was that he also said it was OK to swim. That's good because the pool might close for a long time soon. They need to do repairs that will take 6 to 8 months to fix! They have to wait for some rain, which may never actually come, so who knows when it will close. It's such bad news that I don't even want to go into it. Don't even talk to Ginny about it. I'm serious about that.

Halfway Through Radiation!

Today I started my 4th week of radiation, which means I'm more than halfway through! I'm beginning to feel some side effects but I will not go into details about them. I'll only say that it is important to have reading material in every room of your house, including the bathroom.

Here's a picture of Calvin, one of my favorite radiation nurses/techs. He's always smiling and greets you with firm handshake before he zaps you with high intensity electromagnetic gamma radiation. At least I think that's what it is...

Hump Day is Pump Day

Wednesdays are huge - lab work, meetings with both doctors, radiation and refilling the chemo pump. Today I got my third chemo pump refill. I haven't met a chemo pump I've liked. Kind of like Vikings fans.

Fanny Pack? Man-purse? No, it's an ATB!

What do you call the thing that carries my chemo pump? I don't like "fanny-pack" and I definitely don't like "Man-purse", so I'm calling it an Athletic Tote Bag, or ATB.

I asked April to take a picture at the pool this morning. Today was a free day at the pool for some reason, and it got crowded early. If you look closely, you can see Mom in the pool. I can't get in, what with my ATB and all, but I can wade up to my knees. Whew - what a workout...

Week Two - More of the Same

I've almost emptied the chemo pump and have started the second week of radiation. I still don't really feel anything, but I think I feel something...maybe it's all in my head. No, that's not where it is.

It's nice to have inspiration from "The Duke" before you saddle up to the radiation table.

I think I know now why people don't like chemo

Today is my second full day of having my friend the chemo pump with me. This is what it looks like when it's out of the fanny pack. It rarely comes out. I had a rough day with it yesterday but I'm getting used to it. It's tricky taking a shower because you have to keep the port-a-cath dry and of course the pump must stay dry as well. I'm going to be really happy when I don't have to wear this thing all the time. Every 5 minutes it pumps just a little chemo and makes a clicking sound kind of like a digital camera. The good news is so far the chemo is not making me sick. I felt good enough to go to work this morning...but only for a half day!

X marks the spot

Today I got my chemo pump. I'll take a picture of it later. It's in a fanny pack thing that I have to wear around my waist and it's hooked up to my port-a-cath under my shoulder blade. I don't like having these tubes and stuff around me, but whatareyagonnado?

I had day three of radiation today. They put these marks on both sides and in front so they can zero in with the lasers. I'm not sure why one is red and one is black. I had the red ones first.

Day Two

Day two was much like day one, only more Two-ish. This is the CT scan machine, it runs circles around you...

Pictures from day one

No sweat - they zapped me with the ray gun but it didn't bother me a bit. It is somewhat intimidating, and it moves around you as it zaps you. They zap you from 4 angles, 12-3-6-9 clockwise. Or is it counter clockwise? I'm enclosing picture of the zapper, real pictures of my pelvis, and a radiation danger sign. I ain't afraid...

Day One

Today is my first day of radiation. Karl is going to pick me up at 3:30 for my 4:00 appointment. I can drive to and from radiation treatment, but Karl just wants to go and check it out. I've been to the place before and met the radiation oncologist, Dr. Dzuik (pronounced "Juke"). In the office where I saw him, he must have had 50 pictures of John Wayne and a dozen John Wayne artifacts (including, I think - John Wayne toilet paper). I asked the tech why, and he said some people think his name sounds like "Duke" not "Juke", so therefore all the pictures of "The Duke". I really like Dr. Dzuik. When I met him he did a CT scan on the rectum and we looked at the pictures together and he showed me the tumor. I asked him if it was a "big one" and he said not particularly. I've heard "it's not particularly big" before when talking about that area, but this time I was glad to hear it.