Steve Johnston's Cancer Journey: February 2009

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 before...so 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.

Wednesday, February 25, 2009

Update 2-25-09

Got a round of chemo today but won't meet with the doc again until next week. Last week we learned that Boston (Harvard's Dana Farber Cancer Center) reviewed Steve's case and felt they had nothing to offer us, so not to even bother going there. They felt like his standard treatment was the best that can be done in our circumstance, and they didn't have any clinical trials he'd be eligible for. Oh well, we've learned that sometimes when one door closes another one opens.

We made contact with MD Anderson Cancer Center in Houston last week, and we're waiting to hear back from them after they've reviewed all my scans and reports from here. We doubt they'd have any standard treatment beyond what we're getting here, but we're hoping they might have a clinical trial he'd be eligible for.

Steve just read the book, "The Last Lecture" by Randy Pausch. He highly recommends it if you haven't read it. It's NOT about dying - it's about living.

Friday, February 13, 2009

Tulsa is a no-go

Some of you may have heard that we were planning to go to Tulsa to visit a cancer center there next week. It was all set. But we learned some troubling things about the center, including that they had been dinged by the FTC for false advertising. Part of that false advertising was specifically related to treating cancer in the lungs. They couldn't substantiate the claims they were making about their treatments there. So with the red flags we made the difficult decision to cancel at the last minute.
We're still looking to get a reveiw of my case at a major cancer center - possibly in Boston. Will keep everybody posted!! Thanks for all the prayer and support....

Tuesday, February 3, 2009

Update Feb 3

Saw Dr. Dan today. The decision has been made to take Steve off all chemo treatments for a bit of a break. It looks like we're not going to stop for as long as we thought but, his body needs a break from the pounding. His hemoglobin is so low right now that if he were to continue treatments he'd need a blood transfusion. It was just time and his body was trying to tell him so in a variety of ways.
So we're going to enjoy being treatment free for a couple weeks or so. Steve had been planning on doing the Ironman if he was on a 3 month break, but that's out now. The break can't be that long - we're too concerned about the cancer spreading in that time. So.....back on the juice soon....

Monday, February 2, 2009

Update from Steve

Hey this is actually our first post. Have a doctor's appointment tomorrow. This round of treatment has been especially difficult. Steve has gotten some kind of cold or crud on top of it which hasn't helped. We'll see what Dr. Dan says tomorrow....

Steve Johnston's Cancer Journey