3/31 - Sunday. Happy Easter.

3/29 - Friday

Chemo #4 went fine. Jen was by my side as always. I was also graced with Ben and Steve visiting me...thanks for stopping by guys, I appreciate you taking the time to hang out and watch the IV drip...:-)

No new questions for the Doctor. But our background research continues - keeping up on the latest.

My bloodwork today indicates my bone marrow continues to take a hit. Some critical blood numbers were below normal, including White Blood Count (WBC), Red Blood Count (RBC) and Absolute Neutrophil Count (ANC) which is THE "Go/No-Go" signal for chemo.

To sum it up, ANC is supposed to be over 1,000 to be a "Go" for chemo. Mine was 1,100 today. The normal range is 1,600-7,700 (units are meaningless).

As a result, I am currently very susceptible to infection. My body is now at a very low point in my ability to fight infection from within.

We learned there is a 75-year-old lady with my exact condition just admitted into the hospital. She's much worse off. We told the Doc to give her our name. Maybe we can show her she's not alone.

At times like this - where things look a bit unnerving, we continue to be graced with God's peace. We research heavily, and ask for the wisdom to know which food to eat, nutrition to absorb, and healthy habits to uphold that will keep my immune function working. Not much we can do...chemo just sucks it out of you. Doc says not to worry for now. We'll keep an eye on it.

Next week is my "off" week in the chemo cycle. Good timing - my body needs a brief rest.

Oh yeah - my "metal mouth" is back with a vengeance (no nausea, but constantly close).

And my hair started to fall out. I lost a few clumps in the shower yesterday....send bandanas...:-)

3/26 - 3/28 - Tuesday - Thursday
(at work)

I'm learning that about 48 hours after chemo (Monday after Friday chemo), I feel like the wind got knocked from my sails. Weird timing. I may have to modify my schedule a bit. The swing between "good" and "bad" days is still minimal. There are folks with much worse situations - I should be praying for them instead of me. I'm glad for just a little "metal mouth" for a few days after chemo. Still no hair loss.

Family is visiting this weekend. Its good to be together - wish we did that more often PC (Pre-Cancer). I say that tongue-in-cheek. We've always been close, but we sometimes let "life" get in the way of living. Each sunrise is still new, each breath is sweet.

I woke up the other night and noticed Jen looking at me. I asked what's wrong. She said, "Nothing, just watching you sleep."

Take nothing for granted. God's given us a new set of glasses. I hope to keep them on for a long time.

I'm painting the living room this week. Yep. I've got a little energy so I just felt like it.

Jen asked me why paint. I said, "Not really sure, I just felt like it."

She asked, "What color?"

"Not sure...how about yellow, blue and green."

She just shook her head, smiled and walked away. "Knock yourself out."

I think she understands. It must be those new glasses again.

People pass me some amazing little stories for encouragement. I just read one about 50,000 daffodils. I'm not a flower guy - but this one was really good. I'll have to post the stories on this site and share them with you. If you have a good one, send it, I'll post it.

I'm trying to answer every e-mail. Sorry if I'm a bit late, but I read and enjoy each one, and want to answer them all. (You all lead very interesting lives).

I'm doing fine and again thank you for your amazing outpouring of support. It could be worse. I'm very focused, still very strong and very appreciative of your continued prayers. They sustain us, they really do.

3/24 - Sunday
Chemo on Friday went fine. My White Blood Count (WBC) was down from prior weeks. Had a good discussion about this with the doctor. Apparently, the chemo wreaks havoc on the bone marrow, causing negative issues with all blood components: WBC, RBC platelets, hemoglobin and hematocrits. All were down below normal range - but that's not entirely a show-stopper just yet...but we watch these indicators week to week.

WBC normal range is 4.0-11.0 (ignore units for a moment), and mine was 2.14. However the decision to "go/no-go" on chemo is actually an equation based on ANC or Absolute Neutrophil Count. I know what this is, because the doctor told me. But rather than bore you with the math, I'll post it online in a spreadsheet format in a few days. In brief, ANC is WBC x % segs. My ANC was 1,230. If its over 1,000, then I'm o.k. for chemo, which it was this week. Infection is a such a delicate problem during chemo. If ANC is ever less than 500 with a temp over 101 degrees, I get put into the hospital with IV antibiotics. I'm not close to that yet - but wanted to let you know what we are watching. Crazy stuff, uh? No problems right now, however. But I continue to appreciate your prayers.

I discovered I feel fine after chemo for about 48 hours. So Saturday and Sunday feel good. Then it hits me...feels like I got the wind blown out of my sails. Which means Mondays are a bit slow. No big deal, just learning the way this works.

Back to metal mouth again - another yummy fresh dose of cisplatin...:-)

On a down note - we learned this type of cancer (gastric) is not impacted by my immune system. Not sure what that means, but I told the doctor I've been working hard on keeping my diet strong for good immune support. He said it does not help other than just remaining healthy. Bummer - I was hoping to beef up my immune system and try to naturally kick it. I'll keep up the research on that and let you know. For now, we're continuing down the chemo path. I remain a good candidate to continue on this regimen since I'm still strong and able to take it. Again the objective is to shrink the tumors either into oblivion or small enough to surgically laser then out.

We're learning so much about experimental methods (in clinical trials - not FDA approved yet) - most are done in conjunction with chemo. I'll probably put them on another page of this web site. There is so much to tell. Briefly, the top 3 are (1) anti-angiogenesis (killing tumors by stopping blood flow), (2) antineoplatins (killing tumors by genetic switches shutting off the division mechanism) and most recently, (3) collagen digestive enyzme suppression (killing tumors by "trapping" them within local collagen bands from spreading).

Still no hair loss - at least not from chemo..:-)

Thanks for your continued prayers. They truly sustain us. I am learning more each day about the many small but important things God has been trying to show me. I'm listening now. We're growing.

3/22 - Friday
Chemo #3.

3/18 - 3/21 - Monday - Thursday
Feel great. Focused. This was my first "skipped" week in the 3-week chemo cycle (2 weeks "on", 1 week "off"). It feels good. I visualize the internal fight continuing...and we're winning.

Jen's got me eating like a lion to get ready for Friday. My weight is steady, sleep normal. Even working out like before. Back at work all week...brain is fine.

3/14 - Thursday
We were continuing our research, this time reading in the NCI web site (www.cancer.gov) about Colorectal clinical trials (we have to use surrogates for stomach cancer sometimes since there isn't much published).

Get this - in April 2001, two Stage 3, NCI-funded colorectal cancer trials on the Saltz regimen were temporarily suspended because 28 of 2,060 patients receiving treatment died due to toxic side effects. The Saltz regimen is very close to my chemo mix (CPT-11, 5-FU and Leucovorin). It has been considered a standard in treating advanced colorectal cancer since FDA approval in April 2000.

Just to illustrate how thin the margin for error is - here's the dosage that caused toxicity compared to mine (all measures in mg/m2):

Toxic dosage: 125 CPT-11, 500 5FU, 20 LU
My dosage: 65 CPT-11, 500 5FU, 20 LU (plus Cisplatin)
New FDA plan: 100 CPT-11, 400 5FU, 20 LU

See how crazy this is. So although I believe my doctor (MD & PhD in molecular biology) is sharp - we continue to do our own research to see what's happening out there. Cancer treatment is up against some pretty amazingly huge odds. They are all trying, but no one knows for sure. And with the treatments centering on lethal solutions if not mixed right, you don't have chances to make mistakes. Not strong enough, you aren't effective. Too strong, you die. And of course, each body is different and reacts differently, making one dosage o.k. to some, but lethally toxic to others.

Keep us in your prayers. We're still at peace with our current plan, but our research will not end.

3/13 - Wednesday
Jen bawled me out today. I said I'd be home early - and I got caught up in some project at work. Not good. I came home tired and paid for it. She said I don't get a second chance to beat cancer, and pointed out in her own special way that this is NOT a practice session. Ever been scolded by a molecular biologist about cancer? Its not pretty. You've never seen a more one-sided lecture. I learned my lesson.

By the way - do you wonder how I spend my time when I get home now that my schedule is "freed up" of external distractions? Its called research. We're not willing to simply accept a treatment at face value, so we keep looking. Hunting. Call it comparison shopping like you've never seen before. Jen does most of it, and fills me in when I get home. Its a grueling effort which she does an amazing job at while also trying to finish school. Those who try this without a biologist in the house have my deepest sympathy. Fortunately, most of her work is in genetics, so she understands the lingo.

I learned today about why it takes 8-10 years to get effective, new drugs on the market - and how one research facility is trying to beat the medical "establishment".

Here's the drug-approval deal, best as I can explain it. The FDA oversees the entire show - start to finish. Drugs go through three (3) clinical trials, then are submitted for final FDA approval. It all takes ALOT of money - which means the clinical trials are sponsored. Some are sponsored by NCI (National Cancer Institute) others by big pharm. companies.

It all starts with Stage 1 clinical trials. Those involve about 20 people - checking dosage and toxicity - and it takes about 4-10 months. Then Stage 2 Clinical Trials take place on another crowd, this time up to about 60 people. That takes another year. Then Stage 3 clinical trials - these take in hundreds of patients. All these trials are where the side-effects are noted and published. If someone is not satisfied with their current chemotherapy, they can request to be part of a clinical trial - at any of the three stages - if the trial is still "open". Yes, its highly experimental, but you can potentially get the latest and greatest treatment. Of course, it might not work either. Its a big crap shoot.

Finally, after the Stage 3 clincal trials are complete, the drug must be submitted for final FDA approval, which can take another 5 years! So cradle to grave can take 8-10 years for a promising, new drug to reach the market.

Well this is frusrating, to say the least. You want good, safe drugs. But who has 8 years to wait!?

So - that brings us to alternative therapies. The long waiting time for new drugs is what makes many people run to Mexico, eat shark cartilage, etc. Anything to stay alive.

Now, I'm not at that point, and you won't be seeing us pursue some crazy, untested medical method.

However, that middle ground of entering a clinical trial has our curiosity up.

There is a promising new class of drugs call antineoplastons currently in Stage 2 Clinical Trials. They are non-toxic, naturally occurring peptides (amino acid derivatives) and allegedly act as biochemical microswitches, turning off the genes responsible for cancer growth (oncogenes) at the same time activating the genes that suppress cancer growth (tumor suppressor genes). And the beauty is they do this without the toxic side-effects of traditional chemotherapy. They are harmless to healthy cells. Its essentially a genetic engineering approach. See how Jen's education comes in handy! These stage 3 trials have been FDA sponsored - so they must be close.

Our current research has located a fairly well-respected facility that has openings in their stage three clinical trials. It all costs money to participate ($10,000-$16,000), and will require travel to do it. But imagine if it works, without chemo, and its 5 years ahead of its time!?

These are the decisions that fill most of our waking moments. Its like going grocery shopping. Only at the end. if you fill your cart with just the right ingredients, you get to live.

Keep us in your prayers. Our research will continue through my current round of chemo. But this effort is in case we are not satisfied with the eventual progress.

We trust God's peace is sufficient to keep us from going nuts. After all..." In all your ways acknowledge Him, and He shall direct your paths."

3/11 - 3/15
I'm trying to keep working 1/2 days...so far, so good. I have alot to be thankful for, many chemo patients have it much worse. My energy level is just a notch below normal, and very few side-effects have hit me. I even still have my hair - though not much to speak of anyway.

I read Lance Armstrong's book and learned about his constant daily nausea and being curled up like a baby. God is good - so far I've got nothing even close to that. The medical team said to slow down a bit. They are hopeful, but the deep dark days of chemo may be on their way. I'm only in week #2 - they said to tell them how I feel at about week #6.

But I'm enjoying being at work for now. I still have that feeling that every sunrise is new, and every breath is sweet. I hope to not loose that new clarity in the hustle and bustle of normal life. Its new to me anyway, maybe not to others...and it feels good to have my priorities straight.

Anyway, I've got work to do...you know, tumors to kill, that sort of thing.

3/9 - Saturday
Day after chemo #2 going o.k. I tolerated the first week well (despite a weeklong head cold), so they increased dosage of one of my four chemo drugs, Cisplatin. Its part of the platinum family. My mouth now tastes like I'm chewing on a foil gum wrapper all the time. Not pleasant, but tolerable. No nausea yet, still taking Compazine (Prochlorperazine) which works o.k. The sour mouth taste is there, but the signal between my gut and brain to say "Its time to throw up" has been shut down. I'm able to remain somewhat active. Up and at 'em is a good thing at this point.

My cholesteral is down to 161 and my liver function has actually improved during the past week. Jen's got me on this incredible diet. Not too far off the deep end, but
we're paying very close attention the lots of very good veggies, fruits, good protein (soy, fish, chicken) and tons of juices and water. Some small portions of extra supplements for antoxidants are thrown in, but we're trying to keep them food sources as much as possible. We're reading alot, so I'll include some good book links soon if you want them. Good sleep has become a requirement as well. Top that off with a heady supplement of prayer, and my nutrition has never been better. Now...to kill those tumors.

3/8 - Friday
Chemo session #2.

3/7 - Thursday
Doctor visit.

3/6 - Wednesday
Back at work. Visited my Andersen friends. They are terrific, each one sincerely cares. This has affected us all, even if we reflect only briefly for a moment on our personal situations. "Wow, a young, healthy person getting cancer with no symptoms, what about me?" We all wondered for a moment or two...then it was back to work. They have to, no choice. Not me, my life is changed forever. Every sunrise is new, every breath sweet. That search for a higher calling of eternal value still burning deep inside. I'm content, but just want to do more. I went home, enjoying each minute with every single one of them today...great folks.

3/5 - Tuesday
Back at work. I'm light-headed, but hanging in there. God's amazing, and so are my friends. (Is this really happening to me?)

3/4 - Monday
Couldn't go to work, head cold continues.

3/2 - Saturday
Only slight fatigue. Metallic taste remains in my mouth. Head cold set in from the week before, that's an annoyance more than anything. Hanging in there.

3/1 - Friday
First chemo session. I checked in the Cleveland Clinic at 10:30, got prepped for a few hours, then started the 5-hour IV drip at noon. I returned home wiht a slight buzz. There were few side effects right away, just a bit woozy. The chemo effect is cumulative and builds over time, so mid-way through things reportedly get a bit tough. My neighbor brought over a bandana for when I loose my hair - got a kick out of that. Might as well keep my sense of humor. After all, I'd rather have no hair, eye-lashes or eyebrows than golf balls in my liver.

Full body PET scan was also completed - it took a few hours and showed I had no other tumors in my body. Its designed to marked my tumors with a radioactive glucose. Its one of several baseline tests before chemo starts.

Doc said there is a 50%+ chance of becoming sterile after this type of chemo - so I better plan ahead now. Yep - can't believe it, had to make a visit to the sperm bank. So much for romance. Not exactly the way I wanted to start my family, but there's little room to be choosy at this point. I can only hope God sheds a bit of grace in that regard when the time comes. That sense of humor thing again...

Johns Hopkins Cancer Center reviewed my record - again largely supporting our local doctors chemo protocol. I'm once again so glad we've got talented medical help right here in South Florida.

 

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