Tuesday, December 22, 2009

Dualing Lists

Below are my Bucket and Anti-Bucket lists (in no particular order). The Bucket List assumes that I will die before the Summer of 2010. The Anti-Bucket List assumes I will live at least twenty more years.

Bucket ListAnti-Bucket List
Take Kyle and Marjorie to swim with dolphins. Discovery Cove now lets children as young as six swim with the dolphins, so we'll probably go there.Everything on the Bucket List
Teach Kyle to ride a bike.Learn Japanese.
Teach Kyle to swim (properly).Climb Mount Fuji.
Visit Chicago again.Scuba dive the Great Barrier Reef.
Visit Tampa again.Visit the Aquarium in Barcelona in Spain.
Go scuba diving.Learn to Juggle five juggling pins.
Juggle with some friends.Dance at my son's wedding.
Go skydiving.Hold my first grandchild in my hands.
See or talk to as many of my friends as possible.Visit the Valley of the Kings in Egypt.
Visit the Smithsonian. - DONE, thank-you Elinor, Mark, Gwen, Morgan, and Evan.Gain 30 pounds.
See the FSU Circus one more time.Celebrate my grandfather's 100th birthday.
Go see another Cirque du Soleil performance.

Thursday, December 17, 2009

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.

Thursday, December 10, 2009

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.

Monday, November 30, 2009

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.

Tuesday, November 17, 2009

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.

Monday, November 2, 2009

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.)

Saturday, October 31, 2009

Free at last

I escaped from the hospital on Saturday, 31 October 2009, after I literally begged my oncologist, Dr. G, to let me go home. The results from my CT scan were not all in yet and he was thinking about keeping me in another day.

But now I'm home and it's where I need/want to stay.

Friday, October 30, 2009

return of the Hospital Food

First of all, I apologize in the delay on posting this.
Doug got admitted into the hospital 11pm on Wednesday evening with a temp of 101.4 F.
By the time they finished with his vitals and hooking him up to an IV, it was 2am and time for me to head home.
I talked to Doug this morning and they are keeping him for an extra day so a doctor from dangerous diseases can check him out before releasing him.

If you wish to go see him, he's at the Florida Hospital Orlando:

601 East Rollins Street
Orlando, Florida 32803

He's on the 10th floor, room 238

If you wish to contact him directly, use this number or you will be told that he has been discharged...I kid you not.

Number to contact Doug directly:

(407) 303 5600

then press 1

then 1410238

I will post another entry tomorrow as soon as I know about the status of his discharge.

- Marjorie

Wednesday, October 21, 2009

Death of a Hero

My friend Robert Mudge finished his fight against cancer on Tuesday, 6 October 2009.

About two weeks before he died, Robert posted this message on Facebook:

To My Dear Family and Friends, I am getting ready to make one last journey. I have had a great life and you all made it the best a man could hope for. I wish I could spend more time here with everyone, but know I will still be watching and caring for you, just from a different place. Thanks for sharing your life with me. Love always, Robert

Memorial contributions can be made to the Hospice of the Comforter, 480 W. Central Parkway, Altamonte Springs, FL 32714.

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!

Tuesday, September 22, 2009

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.

Wednesday, August 26, 2009

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.)

Wednesday, August 19, 2009

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.

Sunday, July 26, 2009

Smooth Reality

Yesterday my friend Robert changed his Facebook status to say that he was in the hospital again (due to a high fever). So I asked if I should sneak in a bottle of Jack Daniels (one of Robert's few remaining joys in life). He thought I was joking and said yeah.

Within an hour Marjorie and I picked up a bottle of Gentleman Jack and were at Robert's bedside.

At first Robert said he shouldn't drink any since they were going to take blood samples the next morning. Then he decided he could crack open the bottle and at least smell it. Then Robert decided a little taste wouldn't hurt. He said it tasted very smooth and quickly asked for more.

Then the nurse came in and announced that she needed some blood for the lab. Now.

Hopefully we haven't screwed-up his blood work too much and lengthened his stay at the hospital - "Hmmm Robert, we got some odd results back on your blood work, better stay another day or two while we rerun the tests."

P.S. Robert is at Winter Park Hospital in room 2205. If you know him, give him a call (407-646-7517), it will make his time in the hospital a little smoother.

Friday, July 24, 2009

Life goes on: Harsher Reality

No there's no logic to this
who's picked to stay or go
if you think too hard it only makes you mad
but your optimism made me think
you really had it beat
so I didn't get a chance to say goodbye

"No chance - Regret"

Lou Reed

A couple weeks ago, I bumped into my friend Robert during treatment. Robert is my hero - two years ago he was told that he had four months to live. He has fought his cancer with amazing energy and tenacity.

Sadly, Robert's fight is nearing its end. I won't go into all of the details, but suffice to say that Robert told me that it's "weird shopping for your own urn."

It's hard for me to sort out all of my feelings here; Robert is not a close friend, but he is a friend. Also, as bad as my treatment has gotten at various points, I've always known that Robert has endured far worse and won. I'm sad for Robert, his family, and (pathetically) myself. However, I'm also glad that Robert is in control of his own fate (since he gets to choose his time). I'm glad that he has had these past two years with his friends and family.

For now though, I need to figure out what I can do for Robert and his family. Robert is still fighting and maybe I can help. Life goes on.

Thursday, July 23, 2009

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.

Monday, June 29, 2009

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.

Wednesday, June 24, 2009

Hawaii: Friday, 19 June

Sadly, our Hawaiian adventure had to end. We got up early Friday morning and headed for the airport. Traffic and rental car return went much quicker than I anticipated, so we sat around and chatted for a little while.

Then it was time for Vicki to board her flight home to Australia. We said our good-byes:

and waved at her through the security gate. And then she was gone.

Kyle, Marjorie, and I then found our gate, bought some lunch, and finally boarded our flight to the mainland. The first leg (to LAX) went smoothly and Kyle even managed a short nap:

In LA we found out that we had to change terminals to catch our flight to Orlando. Luckily, a very nice woman gave us a ride in one of those cool airport car thingies and saved us about twenty minutes of walking.

The red-eye flight to Orlando was packed, but Kyle managed to sleep for most of the flight. Marjorie and I - no so much.

My good friend Jim picked us up from the airport around 6:30 AM and by 7:30 AM we were home asleep in our own beds.

Tuesday, June 23, 2009

Hawaii: Thursday, 18 June

For our last full day in Hawaii, we decided to visit the USS Arizona Memorial:

In addition to the Arizona Memorial itself, the site is also home to submarine the USS Bowfin:

After we toured the sub, we headed off to see the submarine museum while Marjorie and Vicki toured the USS Missouri.

Once we got back together, we headed off for dinner at Haleiwa Joe's in Kaneohe.

Hawaii: Wednesday, 17 June

On Wednesday, while the girls searched Waikiki for swag, Kyle and I hit the Honolulu Zoo.

We checked-out the komodo dragon:

and had lunch with the "naughty" peacock:

Then we visited with the Galapagos turtles:

and the zebras:

Hawaii: Tuesday, 16 June

On Tuesday, we went to the Polynesian Cultural Center.

We fed the fish:

checked-out the Easter Island display:

learned some Hawaiian:

played shuffleboard in the Tonga village:

and learned to throw a spear:

we got "tattoos" in the Tahiti village:

and Maori face tattoos in the New Zealand village:

Marjorie and Kyle also swung poi in New Zealand:

and Vicki danced her butt off in Samoa:

From there, we headed to the luau:

Marjorie and Kyle got huge smoothies:

and we met our main course:

When we got home, we scrubbed-off most of our tats, but Kyle asked if he could keep his Tahitian "Gecko" tattoo:

Sunday, June 21, 2009

Hawaii: Monday, 15 June

Marjorie decided to take Monday off, so Kyle, Vicki, and I went back to the Kualoa Ranch for the Movie Set tour.

The first stop was a World War II bunker overlooking the Pacific ocean:

The bunker was also used to the movie Pearl Harbor.

Next we saw where a scene from Jurassic Park was filmed:

Then we checked-out "Godzilla's footprint" from the awful America Godzilla movie:

We also went by areas used in Lost, Tears of the Sun, and 50 First Dates.

Then we went back to the central part of the ranch and said hello to the horses:

and we checked-out a big rock on the way home:

Hawaii: Sunday, June 14

We split into two teams on Sunday; Marjorie and I went to the Valley of the Temples:

and Vicki and Kyle went to the Kualoa Ranch (which was across the street from our house) and did the "Jungle Tour". After the tour, Kyle did a little horseback riding:

Later in the day, we headed down to Waikiki to see the sights and do a little shopping:

Hawaii: Saturday, June 13

On Saturday, we decided to go check-out the North Shore. First we stopped at the famous Sunset Beach.

as you can see, the waves weren't very big in the Summer.

Next we went to the town of Hale'iwa where Kyle and I scored some shaved ice:

After a good bit of shopping and some lunch, Marjorie discovered the Waialua Soda Company.

All of the sodas we tried were good, but the Vanilla Cream and Root Beer were excellent.

Hawaii: Friday, 12 June

So on Friday, we headed down the coast to Hanauma Bay. The bay, which is a marine preserve, is in an extinct volcano crater where the ocean has eroded one side.

On the way we stopped at an overlook:

This is what the bay looks like from the top of the crater:

and this is what in looks like from the beach:

Vicki got into the beach spirit and took a nap:

Kyle and I built another mighty sand castle:

Kyle and Marjorie checked-out the fishes:

and we checked-out the crater wall:

Saturday, June 20, 2009

Hawaii: Thursday, 11 June

Originally, we were going to go to Hanauma Bay on Thursday, but turns out that it was King Kamehameha Day (which is a state holiday). So rather than fight the crowds at the beach, we went to the Bishop Museum.

The Bishop Museum is made up of several buildings, each dedicated to a subject area. We headed for the science building first. Most of the displays concerned volcanoes:

Kyle piloted a model submarine around an underwater volcano:

and Marjorie and Kyle caused a volcano to erupt:

Next, we went to a presentation called, "Meet me at the Hot Spot". The presentation included all kinds of stuff about volcanoes: types of volcanic eruptions, types of lava, the history of volcanoes in Hawaii, and small furnace with molten lava. It was very cool.

When the presenter was explaining various types of eruptions, she had Kyle come up and shake-up a two liter bottle of soda water. Kyle shook the bottle with all of the enthusiasm and energy that only a six-year-old boy can muster, so when she opened the bottle, the presenter got soaked. Really, really soaked.

Once she dried off, she had another boy create a secondary "eruption" using Mentos and a very cool launch tube. (More on that later.)

Sadly, the batteries in my camera died about then. So I don't have any pictures of the soda eruptions, the molten lava, or the rest of the museum (Polynesian culture, Hawaiian history, and the planetarium).

However, Kyle found a Mentos launching tube in the gift shop. So on the way home, we bought some batteries and a two litter bottle of Diet Coke.

When we got home, we did our own science experiment: