Steve Johnston's Cancer Journey: September 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.

Thursday, September 17, 2009

Rememberance

Dear Family and Friends,
We plan to celebrate together the life of Steve Johnston on September 27th at 3:00. All are welcome to join us at Ten Mile Christian Church located on the corner of Ten Mile and Franklin road in Meridian Idaho. For further information or directions, please contact Mark Botsford 208-888-3101 or Bell Funeral Home 208-321-2107.

Our family continues to be humbled by your ongoing love and generocity.
May that return to you for a lifetime.
blessings,
Jennifer

Monday, September 14, 2009

The Journey

Dear Family & Friends,

Steve's cancer journey ended Sunday night September 13th. But the journey that has forever weaved our lives together lives on. Thank you for your loving support and your continued prayers. Although our hearts are hurting as we remember our husband, our father, our brother, our son, and our friend in these very emotional times, we continue to LiveSTRONG!

Thursday, September 3, 2009

Update Sept. 3, 2009

Hi everyone, Its Jen checking in with ya today. We have fallen a bit behind in the updates again. Sorry about that. Biggest news...Riggs went to live with Joan and her other border collie. He now has lots of room to run and play, and he also has big doggy buddies to join him too! And Joan brought us Ringo in return. This was an early birthday present for Steve from the kids. He is a long haired (rather chunky) chihuahua. What a perfect fit he has been! Wonderfully tempered, LOVING, sits and watches TV with Steve, loves to go on little walks, and not one bit yippy. Couldn't ask for a better companion. Steve just keeps saying, "he's perfect!"

As for Steve, he has finished this round of radiation. He is trying to recover from its horrible side effects. With the help of some home fluid and oxygen treatments he is beginning to feel a bit better. It was a rough couple of weeks. Thanks to all of those keeping us uplifted in prayer.

We look forward to getting back out and about to see friends and family. Please know that we think about you often. You are on our mind, in our hearts, and we always send our love.

Blessings,

Jen

Steve Johnston's Cancer Journey