Steve's story

I have stage IVc cancer. It's in my lungs and it's inoperable. Radiation in hopes of a cure is not an option either. This is my 3rd time to have the cancer since it all started 3 years ago.  But I'll go back to the beginning so you understand how I got to where I'm at now.  

I was first diagnosed with oral cancer in February 2006. For several years I had battled with a condition called oral lichen planus, which was painful but relatively harmless. On the advice of my doctor I had the sores biopsied every year or so. It had always been negative until 2006 - this time the diagnosis was squamous cell carcinoma (in case you're wondering, it's pronounced 'skway-muss').

I began treatment in March at MSTI (Mountain States Tumor Institute) here in Boise. My ENT surgeon decided that the tumor in my tongue was too big for surgery, so my treatment was radiation and chemotherapy. They could have taken it out surgically but it would have significantly restricted my speech. I'm sure there's a few people who would have appreciated that, but :-)

I started a course of radiation, with treatment every weekday for 7 weeks. My Cisplatin chemotherapy was done at the same time - three cycles over a total of 9 weeks. The nurses don't call it Cisplatin. They call it "Cis-puke-in". I probably don't need to explain that one....

Following treatment there were some significant recovery issues - suffice it to say the treatment was brutal.  But over the months things got back to normal (or at least my 'new normal') and all my scans were looking clear. Everything looked great until.....July 2007. I had a 'routine' PET/CT scan, right on schedule. The scan indicated that cancer had metastasized into a right side cervical lymph node (a lymph node in my neck). So, back to treatment.

This time it was determined that my ENT surgeon would remove the affected lymph node (actually a bunch of lymph nodes) in a procedure called a Radical Neck Dissection. This procedure took place in July of 2007, and the doctor removed 40 lymph nodes from the right side of my neck, along with a significant amount of suspicious tissues from around and on my carotid artery. The result was that it looks like I'm missing part of my neck (I am), although the scars that wrap from my ear to my adam's apple have healed nicely.

Unfortunately, the margins from the surgery were not clear, so more treatment was necessary. Again I entered radiation and chemo. I did 6 weeks of radiation again, along with 3 cycles of a 'triple chemo' they call TPF- three different chemo drugs at the same time: Cisplatin, Taxotere, and 5-FU. Following this chemotherapy I did a 10-week course of just one newer chemo drug called Erbitux.

Again, I got through treatment, ending at the end of 2007. Everything looked great and healed up nicely. Over the course of months again, things got back to yet another 'new normal'.  After cancer treatment I don't think a person's 'normal' is what it was we call it our 'new normal'.  I even competed in the Boise Ironman 70.3 triathlon. 'Officially' I was 5 minutes past the allowed finishing time of 8 hours, but I did finish and that was good enough for me. I was hiking in the mountains and really enjoying being active over the summer.  

But towards the end of summer 2008, I was experiencing some pains in my chest. I saw a few of my doctors but nobody could determine what the pain was. Over the months it seemed to get worse instead of getting better. Finally in November, my ENT ordered a PET/CT scan to get to the bottom of it.

The scan indicated that cancer had metastasized into both of my lungs and pleura, causing an effusion in my left lung, where pleural fluid fills up the space in the lung. Because it was in both lungs and in several locations, surgery was not an option, and neither was radiation. This left me with really only one modern medicine treatment option: chemotherapy.  So I started chemotherapy again in November 2008 on three drugs: Cisplatin, Erbitux, and 5-FU.

If you do any research on cancer metastasis to the lungs, you'll find that the statistics not pretty. The 'survival odds' that they give you-  percentages of this and that - are pretty hard to take if you believe them. But here's the deal: I don't believe in them! Those numbers don't know anything about me. Those numbers don't know anything about my will to fight. Those numbers don't know what I am capable of. They don't know me at all!

The number that counts to me is this: "1".  One life to live, which is what we all have.  One day at a time, which is all we can control.  Slowly but surely, cancer has taught me what Jen had told me all along - that nothing is achieved by worrying about tomorrow.  None of us know how long we have.  We all like to go about lives like they will never end, but all of our lives will at some point.

As a cancer patient, you're just forced to face your own mortality sooner than you might have to otherwise. Although cancer has been a tragedy for my family and I, the lessons it has taught us are a gift.  Cancer teaches you to live like this might be the last day you have.  It teaches you not to take anything for granted.  It teaches you to appreciate the little things.  It teaches you that you're capable of far more than you ever realized you were.  There's a song which has become my life story: "I hope you get the chance to live like you're dying". I'm sure not done fighting this battle.  But no matter how many years, or months, or days I have left, I hope that's what I never fail to do from this point on: To live like I'm dying.

Monday, June 29, 2009


Wow...I'm sorry it's been so long since I've posted - time got away from me!!

Saw Dr. Zuckerman last week. We stopped the radiation to my lower left lung because it was causing me a lot of stomach upset. We were only 4 treatments from being done on that one anyhow so he didn't feel like it was a big deal to stop. They continued to radiate my hip area through Friday. That area seems to be getting better - I'm getting better range of motion in my hip, which pretty certainly means I've had some tumor shrinkage there.

I began having a lot of pain in the left shoulder area over the last few weeks. I asked Dr. Dorn to go back and check my scans and see if there was anything up in that area that would be causing the pain. He did go back and look, and sure enough, he said there are a "bunch" of tumor nodules at the top of my left lung in the pluera. This is right behind the collarbone as he explained it, which is why if feels like my shoulder hurting even though it's actually my lung.

Jen and I are taking the kis up to Seattle this next week for a week long vacation, which should be a blast - it was last year! When we get back from that, Dr. Dorn is going to do 2 weeks of radiation to the tumors in the upper left lung, in hopes of relieving some of that pain.

Once radiation is complete, I will be back on chemo again with Dr. Zuckerman - taking three drugs this time: Zomeda, Taxotere and Tarceva. I've been on Zomeda for a few weeks now without any real trouble. I've had Taxotere before (it was part of the 'TPF' chemo formula I was on some time back)...but I've not yet had Tarceva, which is a new drug designed to be a growth inhibitor for cancers in the lung.

Dr. Zuckerman feels like this regimen won't be as toxic for me as the previous chemo regimen was. He said the fatigue and weakness will be about the same but the nausea should not be as bad......If that's the case I'll gladly take it!!! It seems like everything they do to treat cancer (at least the kind I have) involves making you sick to your stomach!! It's nice to get a break from that once in a while.

That's all I know for now. We probably won't be updating again until we get back from Seattle at the end of next week. We're so excited about our trip!!

As always, thanks for all the prayer and support that has come to us in so many different forms. Thank you!!


Friday, June 12, 2009

6/12/09 Thanks!

Hello and Happy Summer! This is Jen. Boy, am I grateful for some time to catch up at home...finally! But I am writing on the blog because I wanted a place to share my never ending gratitude to all those who have been so generous to us. As many of you know, we are planning a special family trip to Seattle in a few weeks. Radiation is scheduled to end just in time for us to leave, and Steve won't begin the new Chemo plan until we return. So we are expecting a wonderful week of family fun and memorable times. It will be even the more special because our loving friends and family have gone WAY above and beyond to make sure that we have the funds to make this event possible. We absolutely would not have been able to go without your sacrifices, generous donations, and loving support. We are eternally grateful for all that you have done and continue to do to. Thank you for walking with us through this journey. Your compassion and humanity never ceases to amaze me and uplift me.

p.s. A special shout out to the 'Cron group and our Ten Mile family!! You're all like the energizer just keep going and going. You'd think that you'd be sick of us by now! ha you guys!

Thursday, June 4, 2009

Update June 4, 2009

We met with Dr. Dan this morning to talk about the results of my CT scan on Monday. While the cancer did not spread significantly in the lungs, there was indication of metastasis to the bone. Specifically the cancer is in my lumbar vertebrae and hip bones (not in the spinal cord). Those of you who have seen me walking at all in the last few months may have noticed that I've had a limp for some time now, with a lot of pain in the right hip. The scan finally explains that.

Since the results indicate that this harsh treatment I've been on is becoming less effective, we will be switching to a new treatment plan. There are a few specific things they're targeting with the new treatment plan.  The first element will be a drug to control the bone metastasis, which will be given via IV weekly.  The second element will be a new systemic drug regime for my body and the cancer in my lungs.  Finally, I will be doing about 2.5 weeks of radiation to both the left lung (the affected pleural areas) and the hip.  These palliative radiation treatments will be daily for the two and a half weeks, starting this coming Monday the 8th .   The radiation is aimed to reduce pain in both of these areas.

So that's what we know right now.  As always, things are subject to change. Thanks to all of you for your patience - especially those of you who's schedules are impacted by these changes. And as always we thank all of you for your prayer and support. The outpouring of generosity in so many different forms has been amazing and humbling.

We will do our best to keep you posted.

Steve and Jen

Monday, June 1, 2009

Update 6/1/09

Wow, June already!! I had a CT scan down at St. Lukes today. Dr. Zuckerman ordered it to see how we're doing with the current treatment. If it looks like this treatment is still holding things at bay, we'll stick with what I've been doing. If it looks like the cancer is beginning to develop resistance to the chemo regimen I'm on, we'll switch to a different chemo. Dr. Z has some other regimens in mind already, because it's not uncommon when you've been on a certain chemo regimen for a long time, that it can begin to lose its effectiveness. I've been on this triple chemo (except for a break earlier this year) since November of last year....that's a long time.

Anyhow...welcome to those of you who are new to this blog - and again I apologize for not advertising it better when I created it. I'll post again once we know the results of the scan and we've been able to discuss it with the doctor.

More soon......Steve