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May 2002

5/31 - Friday

Well, chemo #9 went o.k. - Jen was by my side.

We had a close call with getting sick again so I got a stronger naseau drug called Adavan. I'm not much for drugs - but this relaxes me through the course of chemo, removing the sour saliva taste in my mouth and brings me back from the brink of vomiting.

CT scan was good, nothing amazing, but slow, steady improvement: a decrease in size in some tumors and no change in others as compared to the CT scan of April 10th.

In the radiologists words:

"SLIGHT IMROVEMENT IN FOCAL METASTATIC LESION [tumor] INFERIORLY IN THE RIGHT HEPATIC LOBE COMPARED TO THE PRIOR EXAMINATION OF 4/10/2002. THE REMAINDER OF FOCAL AREAS OF ABNORMALITY IN THE LIVER HAVE REMAIN UNCHANGED."

He also noted the rest of my body (chest, pelvis) remains cancer free. My brain was cancer-free on the PET scan in February, so they won't check that again until July.

Bottom line - I get 4 more chemo treatments, counting today. Then I get another CT scan AND a PET scan. The PET scan gives us the best look at the stomach tumor. We don't think that will be much of a problem anymore since I've had zero symptoms or trouble swallowing which I did have in February. It would still be nice to get rid of it.

I don't have a gauge on my state of mind right now. I'm fuzzy from the drugs - but wanted to put this out there. Its a bit factual for the moment - I'm sure I'll have something more meaningful to say as these drugs wear off. Or perhaps I should continue on...the stories might be a bit funny. This I know - from deep in my soul - whatever the progress we're making, big or small, I count on your continued prayers and encoragement. This is a long race, with lots of unexpected things awaiting us at every turn for all of us, so all the more reason to wait on God, enjoy the slow, sure, steady pace of getting through this...and know the finish line is nearing. His peace continues to steady us through all the breaking news, through all the research, and through all the decisions about which path to take in the next few weeks.

What's likely going to happen next:

1. In June - we could see the tumor size level off, they may or may not disappear. They are slowing their rate of decrease, but most of the 6 tumors are less than 2.0 cm from a high of 5.7cm, now hanging in the 1.5cm range. Its quite small actually...about the size of a marble. Definitely not in the way - my organs (liver, stomach) are doing just fine. But long term, the tumors pose nothing but trouble if not watched, checked and treated from time to time.

2. We could go through surgery in July/August. If the July CT and PET scan says tumors are small enough, surgery to remove what's left is a possibility. However, its really tough surgery - likely to remove my stomach and do liver radioablation, which is inserting a surgical probe into the tumors to destroy each one from within using high-intensity radio waves, cooking them from the inside out.

3. We could do nothing, pray for continued healing, and enter a management phase. Not sure what this looks like yet, but consider a diabetes approach. Sort of the same path of regular treatment of some sort for life. Not my preferred route.

We're tired tonight. Looking forward to heading home to see family and friends soon.

Next entry will be in "Journal - June". Thanks again for being part of this race with me, I can feel your cheers...and it sustains both Jen and I more than you can possibly imagine.

5/23 - Thursday

CT scan today. Another milestone day.

5/20 - 5/22 Monday - Wednesday

Back at work. I haven't felt well for a few days - but that's just part of the deal. Thanks for your encouragement through prayers, letters, and e-mails. I read each and every word of each note sent to me. I am slow responding - but you'll hear from me soon. I promise.

5/19 - Sunday

Good sermon on life's seasons - and how they change. Good, can't wait. God is teaching - and I'm learning.

Jen's aunt just had a malignant tumor removed from her lung - along with a lung lobe. Cancer just never ends...it never gives up...its always a fight. Makes you so mad sometimes. She is constantly in our prayers - hang in there, Pat...God is with you.

5/18 - Saturday

Jen's brother visited for the weekend. Its great to have family around. No presumptions, no bother, just encouragement and relaxation. Thanks for making the 4-hr drive, John.

5/17 - Friday

Immune-boosting shot.

5/16 - Thursday

Chemo #8.

Turned out to NOT be a good day. My body is beginning to hurt - and I just plain don't like what I'm going through. Jen knows me well enough to tell me to get tough and quit complaining. She put it well - "you are being asked to have the endurance to hang tough and not give up." Well put. She's there with me, so she knows. I'll shut up now. I need to remember that I'm doing well as chemo patients go - very few side effects. Others have had it much worse. Its just fatigue...and this metal mouth thing. I can't describe it well enough to indicate how thoroughly it penetrates my body. Its in my saliva, it soaks my tongue, it coats my teeth, it covers my food, it hangs with me all day, every day making life just plain miserable. I'm not sick, but just miserable. I just want to get through this.

Chips help. Yep, potato chips. No dip, just the chip. The momentary strong salty taste makes the metal go away, if only for a few seconds. I try to make each chip last a long time. I take small bites. Silly, but true. I look funny. But it helps the taste so I do it. I go through alot of chips.

5/12 - Sunday

I love you, Mom. I can never say that enough.

5/10 - Friday

Chemo #7. Good news - bad news. It wasn't the best day today.

Bad news - Chemo today was tough - I finally got sick. Its just part of the deal, I guess. Had to happen sooner or later. Its starting to take its toll.

Good news - that shot to enhance my inmmunity was wildly successful. To put it in perspective, the Absolute Neutrophil Count or ANC normal range is 1,600 - 7,000. The No-Go for chemo is below 1,000, which I was a few weeks back at 700. Well, I took that shot 2 weeks ago and my ANC is now 7,700! Off the charts. Now the Doc is watching it to make sure my bone marrow doesn't burn out.

Bad news - the never-ending chemistry experiment on my body continues. While my white count is up, my platelets are dropping slowly and steadily. I may have to watch my activities to keep from bruising or bleeding since my clotting won't work properly. I don't have to switch to an electric from a razor just yet, but that's the next step. There is a go/no-go point on platelet count as well. Normal range is 150-400 (x000's). Since 3/22, my platelet count has decreased slowly from 148 down to 75 today. No-go for chemo is usually 100, but we made an exception today. True danger zone is around 20, when I'll not be able to clot at all. We'll be watching it closely.

The platelet decrease is a direct result of chemo's impact on my bone marrow's blood production facilities. As a result, my chemo mix has been slightly adjusted to account for this. Specifically, the CPT-11 has been slightly reduced.

Thanks to Dr. Steve A. for stopping by during chemo - its always nice to see you...even if I was sick today.

I saw a new book in the airport by Fran Drescher ("The Nanny") who recently beat Uterine cancer. It was early stage. I guess she went through 8-9 doctors during a year diagnosis before they got it right. I understand the endless search for clues and treatment - no one is there to help (except for Jen...:-). Might have to check it out.

Next CT scan in two weeks. Next week we also learn how the CA 19-9 tumor markers are doing (bloodwork).

Thanks for your continued prayers.

5/8 - Wednesday

Private moment: When my parents visited - my Dad passed on to me a ring that grandpa used to wear. He told me to give it to my son. Its a request we intend to uphold, a milestone we intend to reach.

Thanks, Dad.

p.s. to the Minnesota crew - the pics will be posted shortly

5/6 - Monday

Jen's relentless genetics research continues - she does amazing work. Look what she found just this morning:

"RESEARCH ID'S GENE THAT SUPPRESSES STOMACH CANCER

NEW YORK, Apr 04 (Reuters Health) - Japanese and South Korean scientists have discovered that a gene called RUNX3 suppresses the growth of stomach cancer and is deactivated in many cases of the disease.

But the researchers were able to reactivate the gene in mice. This raises the possibility that turning the gene back on could be an effective treatment for stomach cancer, according to a team led by Dr. Suk-Chul Bae, of Chungbuk National University in South Korea, and Dr. Yoshiaki Ito, of Kyoto University in Japan.

"These observations offer high hope that tumor growth in gastric cancer may potentially be controlled by inducing the expression of silenced RUNX3," the authors state in a report on the findings in the April 5th issue of the journal Cell.

Stomach cancer is the leading type of gastrointestinal cancer in Japan and several countries in Southeast Asia.

Next, the investigators examined samples of human stomach cancer cells to see whether RUNX3 had a role in the disease. They found that the gene was silenced in about 60% of cancer samples. Early in the disease, the gene was deactivated in 40% of samples, but this rate increased to nearly 90% when cancer was in its later stages.

The results "strongly suggest" that RUNX3 is a tumor-suppressing gene whose deactivation can lead to the growth of stomach cancer, the authors conclude.

But Bae and Ito's team was able to reactivate RUNX3 in mice using substances called histone deacetylase inhibitors. In addition, the expression of RUNX3 in mice whose gene had been silenced "dramatically inhibited" the growth of stomach cancer, according to the report."

SOURCE: Cell 2002;109:113-124.

Looks like I may need to get to Japan - or volunteer for mice cancer trials...:-)

Thanks for your prayers.

5/5 - Sunday

Flew to West Virginia on a business trip. I wore a mask on the plane, and sat between a doctor on one side and a 10-year breast-cancer survivor on the other. Talk about a perfect seat.

Great people, great trip.

5/2 - Thursday

I just got back from a business trip. It was good to see so many friends. I enjoyed their company and caring. There were lots of people with lots of questions. Mostly - "How are you, what can I do, how can I help?"

I was a bit guarded, but O.K....I'm finally going to let me hair down for just a moment and answer that question with total honesty...it takes me a minute to explain it, but here goes:

1. Chemo sucks, but it works. It tastes awful and hurts your body, but it kills tumors. So you suck it up and just take it.

2. People that have tumors growing in them are a unique breed. Our lives are changed forever - some for good, some not so good. We're not special people or in need of any special attention, just unique. Its true that tumor growth can kill you - but so will driving your car into a tree. So you try to get the situation fixed and move on.

3. I'm not hurting or in any physical pain. Except for fatigue and this incredibly awful taste in my mouth, life goes on. It helps me to set goals and pursue what I'm passionate about - it keep jazzed about every day living.

4. I am SO ready to be over this. But like any race - you just keep running until the finish line. This race is called life. The best way to cheer me on is to jump in the race and run with me. Not ahead, not behind, right by my side. I promise I'll do the same for you.

I'm saying something in that running illustration. Let me detail that a bit further so you can see inside me for a moment.

I've been a runner since 8th grade - and have put in some gut wrenching races. Having a teammate take off ahead or lag behind does nothing for me. But one that works next to you shares an invisible connection. You hear their breathing, touch their elbow, follow the same grove in the pathway. You share the same deep, throbbing pit in your gut and the same slow, aching burn in your legs. I've been pulled - and done the pulling - through extremely tough moments in a road race using that kind of connection. When its there, it works great.

That connection does several things to you. It carries you for some invisible reason. It also eases your mind - seeing, feeling and touching someone else next to you match your stride and mirror your every step means it can be done...so you keep going just when you feel like quitting. It helps more than a coach or fan cheering on the sidelines, even though their cheers are so important and a big boost when the time is right.

Let me wrap up this running illustation - its probably boring if you don't run, but its my personal frame of reference and the only real parallel I can use to illustrate.

There are important layers of support in that story.

The closest layer is your running partner - able to share every step and the only one on whom you can rely to help "carry" you through the toughest parts - they share it all, and feel it all, and are the only ones who can say they know you. They listen to you with a heart that says - "I have felt that, I know that, and I understand." They just listen, they've been there and they know.

The next layer is your coach, who is with you every day, rain or shine, through long lonely workouts, who sees you when you suck and when you win, and is there to shout out your time at each mile of the race, knowing you can do this if you really dig deep, show some guts and don't give up. Almost no one knows you like your coach.

Then come the dedicated fans - taking the time to show up every race day and cheer you on, they are scattered along the long, lonely race course, waiting in the cold rain, providing that needed boost at just the right time. They follow the program and understand your competition...but they know what you've done before and they're there to help you win.

Finally, is the crowd at the finish line - you know and can bank on them cheering you home.

Here's how I bring that illustration home -

Christ is my running partner. You may not have known that, but its never been more true than right now. And until I have nails driven in my wrists, I'll know of no one that could ever understand more how to get me through this than He can. He'll not run this race for me, ahead of me, or behind me, but right beside to me - knowing me, sharing my space, hearing my breath, touching elbows, echoing my whispers of pain, tripping along the same path, through rain and mud, thick and thin. Totally connected to the point of being one.

Jen is my coach. She knows the plan, knows me, stands by me in the rain at the starting line, reads my mile splits so I keep pace, keeps cheering, keeps hoping, keeps loving, with me to the end regardless of the outcome, knows the future will be better if we just keep going.

Close friends and family are cheering out there on the race course. You are there just when its needed most. You're cheering at the water breaks, you're cheering at the middle of the steep hills, you are with me to the finish, you believe in me and know I can make it.

And yet others occupy various other places in that story, and are all very important for different reasons. No one can race without encouragement, no one can finish without that water bottle handed to them along the way, no one can win without the support team. Even if not required at each and every step - you're all so necessary, so important, so critical.

There - that's it. That felt good. That helped me explain my heart a little bit. I'll think of more later, but for now, that clears my head.

So when you ask - "How are you, what can I do, how can I help?"

Just know you are all part of my race...and that's enough for now. Thanks.