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March 2003

3/31 - Monday

I had lab work performed today - just to check my blood counts from the new Taxol+Xeloda chemo.  Most levels were slightly low, but just barely below normal...so it was a good visit.  I've not had everything "up" in my blood in quite some time.  I'm feeling good.  No real lingering side effects to speak of.

Next chemo is in two weeks - 4/11.  Until then, I take Xeloda orally, 4 pills a day...no problem with that either.

Thanks for your prayers...and remember the troops in battle.

3/28 - Friday

No chemo today - its a very good day.

I've been thinking about how I'm getting back into "life" - but trying to avoid the rut of the daily grind.  We so much want to retain lessons learned from the past year.  Jen and I are working hard to keep the perspective cancer has brought into our lives.  

One thing we've noticed - put in a general way - is that urgency and long 'To Do' lists become idols that our work often asks us to worship.  Its almost expected - either because everyone around us does it as well, or because we "get into it."  We commit ourselves to saying "yes" too much and the day slips by or we just get distracted.  

Although we don't expect a thunderous voice from God each morning saying "Here's what I want you to do today," we do feel ourselves slipping back into the rut of the daily grind - and realizing we can't let that happen.  Keeping priorities straight and actually living that way takes hard work.  We're trying to NOT do things that distract us just as much as DOING things that need to be done.  Its a balance - but one that tips one-sided if not carefully managed.  

Some questions we ask ourselves - did we schedule time today to be alone, to meditate or pray, to exercise, to go for a walk, to talk with each other...?  Or did we just work all day, come home, eat, take care of house chores and fall asleep early out of exhaustion.

Our answer might be very little time spent on those things - yet its a given that we'll spend a very full day committed to our job.  Does that mean work is most important?  Does it mean those other things don't matter?  Different answers to each question - but now we try to make sure we can answer those questions having intentionally scheduled our time that way...rather than having the day just slip by.

I know that parents with kids would read this and say, "You guys have no idea what exhaustion really is...:-)  But you get the picture.

As Brad, Jen and I discussed this past weekend - if the President can run a country and still find time to be alone or exercise or pray, so can we.  Sure it takes discipline, but it also takes loving yourself enough to try to make it happen.

3/25 - Tuesday

Back at Coast Guard work today.  It feels weird - like being at school with the halls empty.  Its like the home team is away at the state tournament, playing the big game...while the rest of us are back at school.  Been watching too much war coverage - but I'm sort of hooked.  Praying daily for my fellow troops in harm's way.

This chemo (Taxol) makes me ache.  My joints ache, my bones ache...I just ache all over.  Not many other side effects, I just ache.  It hurts to type, hurts to walk, hurts to sit, hurts to lay down. 

Did I mention I ache?  (gotta keep a sense of humor).

3/19 - Wednesday

I come from a small town with close friends.  One of them sent me this e-mail to cheer me up.  Most of these are true...thanks, Julie!

"You Might Be From A Small Town If....

1. You can name everyone you graduated with.
2. You know what 4-H is.
3. You ever went to parties at a pasture, barn, or in the middle of a dirt road.
4. You used to drag "main."
5. You schedule parties around the schedule of different police officers, since you know which ones would bust you and which ones wouldn't (same goes with the game warden)
6. You ever went cow-tipping or snipe hunting.
7. You could never buy cigarettes because all the store clerks knew how old you were (and if you were old enough they'd tell your parents anyhow).
8. When you did find someone old enough and brave enough to buy cigarettes, you still had to go out to the country and drive on back roads to smoke them.
9. You have ever gone home for Homecoming.
10. It was cool to date someone from the neighboring town.
11. You had senior skip day.
12. The whole school went to the same party after graduation.
13. You don't give directions by street names or directions by references (turn by Nelson's house, go two blocks past Anderson's, and it's four houses left of the track field).
14. You can't help but date a friend's ex-girlfriend (or boyfriend).
15. Your car stays filthy because of the dirt roads, and you will never own a dark vehicle for this reason.
16. You think kids that ride skateboards are weird.
17. The town next to you is considered "trashy" or "snooty", but is actually just like your town.
18. You refer to anyone with a house newer than 1980 as the "rich people."
19. The people in the city dress funny, then you pick-up on the trend two years later.
20. You bragged to your friends because you got pipes on your truck for your birthday.
21. Anyone you want can be found at either the Dairy Queen or the feed store.
22. You see at least one friend a week driving a tractor through town.
23. Football coaches suggest that you haul hay for the summer to get stronger.
24. Directions are given using "the" stop light as a reference.
25. Your letter jacket was worn after your 19th birthday.
26. You have ever taken a trailer or dog to school on a daily basis.
27. Weekend excitement involves a trip to a Wal-Mart.
28. Even the ugly people enter beauty pageants.
29. You decide to walk somewhere for exercise and 5 people pull over and ask if you need a ride.
30. Your teachers call you by your older siblings names.
31. Your teachers remember when they taught your parents.
32. You can charge at all the local stores.
33. The closest McDonald's is 45 miles away.
34. So is the closest mall.
35. It is normal to see an old man riding through town on a riding lawnmower.

3/17 - Monday

Happy St. Patrick's Day.  Ed, Mark, Matt - thanks for the cheers!

3/16 - Sunday

Recovery from Friday's chemo going well.  Mega-dose coming up this Friday.  Last week was a small dose test...the mega-dose routine will be the norm for this new drug.  Three week cycle - one week on, two weeks off.

Jen and I had a great Saturday - spent about 5 hours talking together about some personal, directional types of things.  She mentioned she didn't think my portrayal of our time spent thinking about cancer was accurate for her.  

She said, "I'm not sure about you, but I think about it all day.  It doesn't consume me or incapacitate me - but its on my mind all day long."

I had to agree that I too think about it quite a bit in many different ways.  But I the spirit I guess I was looking for was that we've been able to integrate it into our normal routine...and only a few minutes each day actually focused exclusively on cancer.

Not much more on this end...have a good week.  Pray for our U.S. troops in Iraq.  This will be a big week for them.

3/14 - Friday
Chemo #35. (Line 4)

Got my first dose of Taxol today.  I guess it wasn't bad - if you call drinking a gallon of anti-freeze not bad.  

Actually there were no real side-effects...slight nausea, no pain.  But I was very sleepy.  They gave me Benadryl since Taxol sometimes causes an allergic reaction, and it put me right to sleep.  So Jen, who is with me for every chemo session, talked with visitors and other chemo patients we've become friends with.  Jen is my normal connection to the outside world during chemo.  I have no idea what I'd do without her.

My blood work, which is done before every chemo session, was great.  Platelets, hemoglobin, etc. is all looking good.  Remember I said the worst part of chemotherapy is the chemo?  The cancer itself has caused me no ill-effects...the chemo kills me.

My liver function tests were normal - despite the liver becoming enlarged and hard from increased tumor growth.  Its amazing it still works.  Maybe God assigned me a liver angel.

All in all - things here are o.k.  Our outlook is positive...not naively cheerful...but knowingly and peacefully positive.  

Aside from chemo days, Jen and I actually only spend about 5% of our time thinking about cancer, and 95% of our time purposefully living of life of peace, contentment, faith for the future and plenty of normal activities.  If you picture me in a rocker with PJs and a blanket over me - you've got the wrong picture.  (although you just can't beat a good set of flannel PJs).

We have learned a lot from this journey - and continue to learn more every day.  Although no day is ever normal anymore - we have found ways to integrate our new way of looking at life into the normal routine.  There are few emotional roller-coasters anymore.  Think about it - how could someone possibly tell us bad news?

Maybe that's why the PET scan news was not a shock.  We say to ourselves, "O.K....so we've got more tumors, deal with it."  It seems to be God's way of saying He's got more work for me here on earth.  

And I'm good with that.

3/13 - Thursday

PET scan results were not good - cancer continues to spread.  The last chemo did not work as expected. 

The liver has more tumors and is enlarged.  Its pressing against other organs in my abdomen, which explains the abdominal discomfort I've been feeling.  There is also more cancer presence in the lymph nodes surrounding my esophagus.  Those lymph nodes are beginning to constrict my ability to swallow certain foods (a milkshake is fine, a turkey sandwich on whole wheat bread goes down really hard).

Jen was with me, as always.  Based on how I had been feeling the past week or two, I sort of expected this news....so it was not a big shock to either of us.  We actually were quite upbeat.  After the Dr. gave us the new chemo plan - Taxol - we said, "O.k., we'll see you tomorrow at 9 a.m.!"  Its like we know the routine - let's just get going.  

Our only fear would have been if the Dr. said, "Sorry, nothing more I can do."  And "fear" isn't the right word - we're not really afraid - but you know what I mean.  He said he'd never say that to us.  He said I was a special patient (he's a big cheerleader) - and there will always be something more they can do.  If it means giving me a phony shot full of water, he'd do it...he'd just never give up.  Good news from the guy running your medical care!!

So, that's it for now.   I guess this news is in the negative column - but it could be worse.  Not really sure how, but I'm sure it could be.  I'm alive, breathing, happy and except for some tumors riding side-saddle on my liver, I'm healthy.

I still have no other symptoms....can't believe it.  NOTHING else is wrong with me (other than no hair and numb fingers and toes).  Dr. said that continues to be my greatest advantage.  I owe that to Jen, she stuffs me full of all the right food, vitamins, meal-shakes, juice, etc.  I definitely haven't lost any weight.  I still go for a 30 min walk every day.  

We'll see what happens with this new chemo.  In the meantime, we've all got a life to live...right?!

Thanks for your prayers and e-mails...God remains in control, our faith is unshaken, our resolve is strong.

3/10 - Monday
PET scan...won't know results until Dr. visit Thu or Fri.

Abdominal pain persists - its low grade, but persistent.  I take Tylenol to sleep at night.  It feels like my diaphragm has turned into a sensitive, hard piece of Styrofoam, centered mostly on around my stomach.  I feel it emanating side-to-side and front-to-back, like something is hitting my kidneys.  Its either tumors dying (not likely, but possible), an ulcer, or existing tumors growing and starting to get in the way.  I can still eat fine.  We'll know more later this week.

I've been thinking for awhile how to describe our situation.  Jen and I balance a faith for a positive future but have to deal with the realities of cancer and my medical treatment.  

Well, I happened to run into a passage I highlighted in a business book two years ago that perfectly describes what we're facing.  Its called the Stockdale Paradox.

Admiral Jim Stockdale was the highest ranking officer in "Hanoi Hilton" prisoner-of-war camp in Vietnam.  He was tortured over 20 times during his eight-year imprisonment ('65-'73).  He chronicled his story of leadership and survival in "In Love and War"- co-written with his wife. 

When asked who didn't make it out, he replied, "that's easy...the optimists"

"The optimists were the ones who said, 'We're going to be out by Christmas.' And Christmas would come and go.  Then they'd say, 'We're going to be out by Easter.' And Easter came and went...then Thanksgiving....and Christmas again.  They died of a broken heart."

Stockdale summarized his story like this, "This is a very important lesson.  You must never confuse faith that you will prevail in the end - which you can never afford to loose - with the discipline to confront the most brutal facts of your current reality, whatever they might be."

That's it.  That's exactly the summary I was looking for.  It perfectly describes how Jen and I handle this journey.  

We encounter Stockdale's version of dealing with passing holidays with every single PET scan, every Dr. visit, every chemo session.  We ask ourselves, "Will this be the last one?  Will we finally get out of this prison?"  knowing it might not be, but hoping for the best. 

Understanding someone like Stockdale made it through, despite carrying a dual burden of faith for the future coupled with facing the brutal facts of reality - helps me handle my situation just a little bit easier.

Thanks for your prayers.

3/7 - Friday
I am encountering some recurring abdominal pain - mild pain, but persistent.  At times like this, I pause to again consider the mysteries of faith and prayer.  I've always wanted to know more about those two realms - I'm a Christian - but I don't understand either one very well...if at all.

I was having some similar trouble hanging in there a while ago - and I talked about it with my parents.  My Mom gave me this verse to read:

"If you make the Most High your dwelling - even the Lord, who is my refuge - then no harm will befall you, no disaster will come near your tent.  For he will command his angels concerning you to guard you in all your ways; so that you will not strike your foot against a stone.  You will tread upon the lion and the cobra; you will trample the great lion and serpent.  "Because he love me," says the Lord, "I will rescue him;  I will protect him, for he acknowledges my  name.  He will call upon me, and I will answer him;  I will be with him in trouble, I will deliver him and honor him.  With long life will I satisfy him and show him my salvation."  (Psalm 91: 9-16)

I'm not sure exactly how to cling to that...but I will.  Thanks, Mom.

I'll share my thoughts on faith and prayer another time.  I know they work - just not sure how - and I'd like to learn more.  They remain a mystery to me.

3/3 - Monday
Follow-up blood test indicated I would NOT need another transfusion.  I'm feeling fine...only side-effects are from chemo (hair loss, numb fingers and feet, fatigue - no more nausea).  I rarely feel tumors.  Sometimes my stomach feels full from the primary tumor...but I have no other tumor-related pain or discomfort.  Its crazy that my only real physical problems are from the chemo...that drives me nuts.

Here's a comparison of when my counts were this low before - and I got a transfusion:

Thanks for your prayers.  I hated the thought of another transfusion.

3/2 - Sunday
Got to spend some quality time with wonderful friends - thanks for the call, Sterling.

3/1 - Saturday
Weekend without chemo...nice.