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September 2002

9/27 - Friday
No chemo - off week.

9/20 - Friday
Chemo #18

9/17 - Tuesday
Endoscopy (scope down my throat) determined cause of internal bleeding to be from ulcerated tumor. That happens when the tumor is being killed by chemo - and it slowly breaks apart. That's good and bad. Good since the tumor is dying - bad since it drains blood into my stomach and makes me vomit. I'm sure there is a medical definittion for this, but have no idea what it is.

9/15 - Sunday
Metal mouth continues...so does the spitting in a dixie cup. I feel like I'm chewing tobacco, and can't really go anywhere spitting all day. If I swallow my "acid saliva", I throw up, so there's not much of an option. It usually subsides by Monday-Tuesday, allowing me to go to work.

Some people wonder what the "work" thing is all about - "I thought you were at home getting better?"

Well, I have cancer, but I'm not normally sick on a daily basis. Besides, I still need a paycheck...so our days are fairly typical work days.

Friday's are generally chemo days (its a full 6+ hours IV session) and sometimes Monday's after chemo are a bit slow for me. But for the most part, our daily life is like most others. The schedule changes frequently, but Jen works in a genetics lab (she's working on her Masters degree - molecular bio/genetics) and I head to work for the Coast Guard. Its what I've done for 14 years, and it keeps my mind in the game. I love being in the Coast Guard - especially now while we're at war. It makes me feel like I'm contributing to our nation's bigger picture.

Yes, I do take care of myself - so if you think I'm not watching my health during this time, no worries there. I tend to do more work from my home computer and often leave work a little early. Although "early" for me coming home at night is relative. Before cancer - Jen and I wouldn't meet up back at home until 7-9 p.m. That has drastically changed. We've definitely cut back on how much time we give to the job...its important...but not a much as our health and well-being. We've found ways to work more efficiently, and kept our lives more in balance.

9/14 - Saturday
As usual, the vomiting has subsided, leaving me with a day of just feeling crummy. How's that for a formal medical description of my condition..."crummy"...

9/13 - Friday
Chemo #17. Rough chemo session today - threw up blood most of the day.

Although they are not sure why...they said the most likely reason was from my primary tumor splitting open and dying. Believe it or not, I guess that can happen. When chemo beats up tumors enough, they can just split open and die. However, since they have a blood supply, they bleed for awhile. Not pretty, but if its on the path to a cure, I'm o.k. with that.

However, since throwing up what looked like several cups of blood is not normal, they admitted me to the ER for observation and gastric lavage (stomach pumping). They put a tube down my throat via my nose - not cool, but it worked. Then they put in 200-300 ml of water, and sucked it back out to see if I was still bleeding. I guess I wasn't, so they released me and prescribed some anti-nausea medication to reduce the impact vomiting had on the GE junction tumor.

They also said the blood might have come from a condition called Mallory-Weiss tears - tears in the esophageal lining at the GE junction caused by vomiting.

Here's a more formal description:

"A Mallory-Weiss tear results from prolonged and forceful vomiting, coughing or convulsions. Typically the mucous membrane at the junction of the esophagus and the stomach develops lacerations which bleed, evident by bright red blood in vomitus, or bloody stools. It may occur as a result of excessive alcohol ingestion. This is an acute condition which usually resolves within 10 days without special treatment."

9/12 - Thursday (7 months since diagnosis)

CT scan results were good. Since my last CT scan on July 10, the largest tumor in my liver shrunk from 1.9cm to 1.5cm. Continued response to the original chemo regimen is a great sign - no tumor resistance.

Side note - of the 6 gastric cancer patients my oncologist has on this regimen, 2 have gone into complete remission (no detectable cancer on any scans). He said I'm headed that way too since I'm still responding to the first "line" of chemo.

Of the 5 tumors in my liver, 3 remain active, 2 that were calcified before remain that way and are inactive - not sure if they are yet dead tissue (necrotic).

The primary tumor at the GE junction remains invisible on CT scan due to folds in the stomach lining. It is assumed tumor response in the stomach tumor mirrors response of the liver tumors since they are the same type of tumor cell. Another PET scan in 6 weeks will tell us that for sure.

Thanks for your prayers - they are working...slow but steady wins the race!

I'm scheduled for chemo for another 6 weeks/4 treatments, then another round of CT & PET scan.

9/11 - Wednesday
CT scan.

9/7 - Saturday
(Feeling great...no chemo)

Jen and I shared an interesting conversation last night.

In keeping this journal honest and truthful, I'd like to share an abridged version of our talk...even though its quite personal. It became a rather long journal entry. But I had a lot on my mind. Writing it down helps me chronicle my thoughts...and understand for myself where this is headed.

I've learned that with cancer there are various ways it seems to come upon you, so you naturally look for various ways to kill it, cure it, treat it or live with it...including prayer, surgery, chemo, etc.

Part of handling it caused me to reflect on how I got it in the first place. And part of that process...at least for me...was learning a lot about life's journey and the driving forces within me that got me to this point. It was during that long walk down a mental path last night where I learned more about me, what I want, and who I am than at any other time of my life...

...because I learned about my will to survive.

First, a few weeks ago, Jen insightfully asked me what I really liked to do just for me...and just for fun. She knew I was a hard worker, but that's work. She knew I had a heart after God, but that's spiritual. She knew I was a good provider, but that's for her and family.

What she really wanted to know was, "What drives Joel to do something for Joel's sake...not anybody else...and for no other reason?"

I had no answer.

Somewhere along the way...I sort of lost track of me. Sounds crazy, but its true. I lost track of what drove me to enjoy the very essence of life...and what "me" things sparked the day. I was still a hard worker, still a Christian, still a good guy to others...but unsure anymore what drove and jazzed me about my personal life, not the life lived just for others.

One might assume upon hearing that that I've lost all touch with reality or who I am.

Quite the contrary. I'm a happy, normal, generally well-adjusted guy.

So what was that stuff about "lost who I was" supposed to mean?

Well, strip away the job, car, house, wife, kids, friends and God...and its just you. Now given those conditions...ask yourself...why live? Of course you don't just give up and die, you keep moving, keep doing, keep living. Why? There's an answer, unique to every person buried deep somewhere inside. But what is it? What is that based on? And how do you nurture it and keep it strong?

Fortunately, you'll never really need to ask that question...unless you're a P.O.W....you're the Old Testament guy Job...or you have cancer. Then you must have an answer...and that's where I found myself last night.

At first glance, that train of thought seems selfish. Thinking of "me" initially ran totally counter to everything in my heart and soul. "Focus on ME, what do you mean?...why do that?...aren't we here to do things for others?!...seek a higher calling, do a good job, etc."

"Yes, that’s vital and important," Jen said, "...but there is a balance...and you have no balance right now."

I sat quietly thinking about that...she was right.

So I looked back...trying to give this question an answer. After all, knowing the answer of what still drives me about just living life itself might someday keep me alive.

That mental journey took me back a ways...

I recalled that early in high school I loved to run...I was driven, using a God-given talent I felt good using...and I was good at it. In college...same thing. I rarely lost...and had a burning desire to win. I attained some status in that world...and it was a very personally satisfying time.

As I grew older...I ran on my own, but the thrill of racing was gone...so it took a back seat to a new love in coaching. I coached track where I lived for several high school teams. It brought me personal fun and enjoyment...something I personally loved to do.

As the later 20's and early 30's rolled by...I retained some personal zest for a few other things, speed-skating, wood-working, gardening, etc. But more and more, I lost track of "me" and got buried in my work. I lost the balance. I’m not really sure, but I guess I must have thought it was ok...or it just happened. I thought my Coast Guard work was a noble profession...helping others, etc. But looking back I discovered "doing stuff just for Joel" was no longer on my life's radar screen. I had merely assembled a long string of task-oriented, get-the-job-done events...and called that life.

Having that balance disappear had invisibly and unknowingly destroyed something inside me. The inner zeal to just truly enjoy being alive for the pure joy of living had all but vanished...and I wasn't even thinking about it. Oh, I was by no means sullen or given-in to life's pressures. I was happy, Jen and I traveled and did many things together. Seemingly life was fine.

But aside from work and marriage, I didn't do much for Joel - no hobbies, no recreation, nothing that fulfilled who I was as an individual...and very much less and less connected to a desire to wake up and seek enjoyment and fulfillment from each and every day. I still enjoyed life in general, but again...it was for those "other" things, "other" people, "other" causes, nothing for me. The result was the personal "Joel" fire that burned early in life had all but faded into oblivion.

Looking back, I was just too "busy" living or just "doing things" to recognize what was happening.

Where is this headed...why am I painting such a seemingly bleak personal picture of myself...and what does it have to do with cancer?

Well, personally, it's probably the single biggest revelation that occurred to me since being diagnosed. It's personal...and probably doesn't apply to anybody else...but it instantly became a big deal to me when I realized it.

...and here’s why...

I've learned that to survive cancer, you need have a mountain-size will to live, and the faith that God will see you through it...through any pain, vomiting or other crap it throws at you...for the duration, as long as it takes. Without it, you simply curl up and die.

And even WITH a strong will to live – there are no guarantees. Of course, God's in control anyway. But aside from that...the only thing for certain, is that without a burning, inner desire to love life and cling to it - you won't. It's just that simple.

"Wow, Joel...you're really a genius...you figured that out all by yourself?"

Well, honestly, for me, it took having cancer and a very hard look back at what did and did not still burn inside me to make me realize everything I just described - and only just now discovered.

In all honesty, by not maintaining a simple, purely personal, everyday joy for just being alive - I had no answer for the very personal follow-on question "what still drives Joel, and what is it that will keep me from giving up?"

That’s where this applies to my battle with cancer.

You see, I had dedicated my life to those "other" things - being good at my job, trying to be a good husband, be a good Christian guy, etc. Many people do that...its not a unique characteristic to pursue those objectives. That's what you're supposed to do.

But the difference that hit me last night, was I could not identify what personally drove me for my own sake anymore. And it was the part about not knowing the basis for my own personal passion to love life itself that just floored me. I guess I just hadn't experienced that thought before.

So when something really, enormously difficult does come along (like cancer) the obvious course of action is you just fight it, stay in the game, believe God's got more in store for you, and hang in there. Right?!

Well...that's just talk. Its all talk.

To actually DO that...to put action behind those words...to actually follow that path when you get hit hard - when the chips are down, when the pain sets in, and the outlook is bleak and you're staring at the bottom of a bedpan at 2 in the morning - that's something totally different.

Yes, it requires faith that God will see you through.

But it also requires that personal, indescribable, deeply seeded, fundamental burning desire to beat it...and the will to want to live to see another day...at all costs.

Some get lucky, detect it early and beat it. They become a Lance Armstrong with testicular cancer that has a 90+% survival rate...and live to write about it. Good for them.

But what about a 36-year old with stomach cancer facing a 9-month average survival rate and only a 5% chance of making it 5 years?

That's a different story. That requires a miracle...guts...and a mountain-size will to live.

Realizing that fully last night hit me like a ton of bricks. I had never been forced into a position to think that way before. I only realized it because my amazing wife saw what my life had become...a pursuit of just doing things for others and just doing a good job...but loosing a grip on what used to drive me from within.

It raised the ultimate question for me now facing this cancer head-on: where is that inner passion for life...so strong that it will drive me to make it and beat this thing? Standing alone, purely for me and me alone, what reason did I have to try to beat those odds? What did I love and cherish about every day of life itself that was worth fighting for more than anything I've fought for before?

Very, very good questions. Ask them of yourself...you might be surprised what your own answer might be.

But in my case, pondering that question made me realize some things. Primarily, it was that I don't normally think that way. I look to ensure others are taken care of, that the bills are paid, that the job gets done, etc. I didn't think much about me...it just didn't seem to cross my mind.

But now, I need to.

I need that personal inner zeal for just being here...participating in a life I personally enjoy...just because. I need that desire more than oxygen and sunshine. Without it, the game's over.

And yes, I also believe that a huge part of beating cancer is an overwhelming positive attitude and faith that God will see you through. But there is a significant balance to strike amidst all those variables...and your own personal, inner drive just has to be a big part of it.

So...working on that part is the next leg of my journey. I'm actually happy about it. I might never have come to this realization without facing cancer.

I have nothing more to share...just a lot to do...for a lot of new, different, very good reasons.

Most things will stay the same...the things I've loved, supported, and did for others, and my faith that God's got more in store for me.

But in addition to that...I now realize what it means to find and keep alive an inner, personal, rock-solid, driven will to live...and its more sharply focused than ever.

This was a tough journal entry for me...hard to summarize without fear of being misinterpreted. But I talked it over with Jen and decided to get it down on paper. I don't re-read my past journal entries very often...almost never. But this one I've re-read many times.

Its been a turning point, and I thank God Jen made me realize it.

Thanks for listening. The journey continues. I'll tell you how it goes.

9/6 - Friday
Off week - no chemo.

9/4 - Wednesday
[OK, Brad. I'll tell it like I told it to you...here goes...]

Last week was tough for me - spent most hours between Friday's chemo and Monday vomiting or nearly so. Metal mouth is so strong that I can't swallow my own spit without gagging. I carry a little cup to spit in all day. Its crazy, and gross, but it helps. By Tuesday, the acid taste is abated and I'm able to go to work. Its become a routine thing now...not very nice, but tough to communicate without sounding like I'm asking for a pity party. The nurses are so comforting and helpful - putting up with my reactions to chemo must be a challenge. I told my Doc to just keep it comin'. I told him throwing up is not pretty, not pleasant, and no fun, but not to let that hinder him. He told me a long time ago that he'll push things...knowing we're in this game for a cure. We're on the same sheet of music...so I'm thankful I'm more than just a number to him.

Anyway...its becoming more difficult to write those thoughts online. Not exactly sure how to say it anymore. I'm not sure how it comes across. My goal is just to communicate what's going on and journal my thoughts, not try to elicit any sort of emotions, feelings, or pity.

These experiences are just part of the deal, I guess. Jen is by my side, as always. She's such a trooper. She had to sleep on the couch Friday night since my vomiting every 30 minutes kept both of us awake most of the night. Early morning, she finally gave me a pill and I was out until later Saturday morning.

Jen and I are both trying to keep some normalcy to our days - working, yard work, going for walks, taking more time together, conducting life as normally as we can.

Its a really strange ride. Three days ago I was throwing up - yesterday I went to work. I could never have predicted such a strange mix of activities, feelings and things that hold my attention. When you're sick, you think of nothing but trying to not miss the bedpan. When you're well, you think of this amazingly long list of things you have to do. I'm learning to strike a balance. The result is I'm in this calm state most of the time...smiling...just watching everyone else busy with their lives...thankful I'm not throwing up.

And the continued, amazing support of friends and family just keeps coming...thanks. It means everything to us.