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, August 6, 2009

August 6, 2009

Howdy little buckaroos,

Things are going fine. Jen and I had just gotten back to town from spending a little time by ourselves in Riggins, and now we're already back again! This time, we brought the kids. Unfortunately, it looks like it's going to rain most of the time we're here, but oh well, it's still fairly warm so we'll have fun on the river beaches, rain or shine.

When Jen and I were up here last week, we rescued a dog we found on the beach. It's a beautiful Border Collie. He was full of stickers and ticks, and very very skinny - he'd obviously been on the run for a long time. He had no collar or any sort of ID. We talked to rafters/campers in the area and learned that he'd been running around out there in the wilderness for AT LEAST a week, if not more. We were a good 10 miles or more from town. We don't know if he fell out of a farm truck, or got lost somehow, or what. We decided to at least rescue him, and as the day went on we really fell in love with him. He was so gentle and smart, and good natured. He never barked, or bit, or showed any agressiveness whatsoever. We went back to Boise a little earlier than planned, and took him to the emergency vet to have him checked out.

The vet checked all their lost dog sources and couldn't find any matches for anybody looking for him. He didn't have a microchip or any listing anywhere for a lost dog. They took out the ticks and stickers - they had to shave behind his ears because the stickers were so deep down in his coat - it had to be painful with those!! They determined he was in great health and was less than 2 years old.

Jen and I had already been talking about getting a dog as a companion/buddy for me while I'm working from home in the day and everybody else is gone at school and work. This seemed to be the perfect dog and he just literally walked into our lives at just the right time. Hmmm....meant to be? All we could think was, "a God thing".

I wanted to name him something that would relate to where we found him, so I called him Riggs.

He was pretty skittish at first - just scared about all this new stuff and new places. But just a few days later now, he's so well adjusted already. He seems to be loving his new home and loving all the attention - he loves to hang around us and doesn't seem to like to be alone. He's got plenty of energy when we take him out to walk or play, but he's really mellow so he's good in the house too. We just have to keep him busy and work him a lot - it's just a necessity for his breed. It will be good for me to walk with him every day - I need the exercise too!

Anyhow, that's the story of Riggs, the newest member of the Johnston family, and my new buddy who will be spending a lot of time with me on what would have otherwise been some kinda' lonely days!!

Saw the doc yesterday. Nothing new really, except that my counts were down again (no surprise, we're kind of getting in a weekly routine here). So, I went straight over to 4 South at St. Lukes and spent the day getting transfused with 2 units of blood. The Benadryl they give me before the infusion starts really knocks me out. I tend to be in and out of sleep all day. I feel so bad for Jen - she's such a trooper hanging out with me there when often I'm not even awake to talk to her!! No offense to St. Lukes, but 4 South is not the most exciting place to hang out for that many hours. Even without the Benadryl, it's a zzzzzzzzzzzzzz kind of place.......

It seems everything is kind of getting into a groove here as we press on, having ended traditional treatment (chemo and radiation). I believe my biggest challenge right now is trying to keep from losing further weight - or even better, to GAIN some weight! I'm down to about 154 lbs, which is simply too skinny for my frame. Getting too skinny is not healthy for anybody trying to fight cancer (really anybody for that matter). It just compromises so many of your body's natural attempts to fight the disease. So I'm really trying to 'override' the puny appetite and eat as much as I can. I can't let myself get down into the 140's (lbs). I'm 6'1", almost 6',2" Well, I suppose I could be a stick figure model for budding artists....but I don't think that pays very well.

I get about a weekly transfusion as needed to keep my blood counts hanging on ok. I'm still on some pretty heavy narcotics. For anyone who knows this stuff, I'm on 300 mcg/hr of Fentanyl patches - replaced every 48 hours. And, I take 60 mg of Oxycodone for 'breakthrough' pain every 2-3 hours as needed - which is typically four or five times a day. I always have to take it when going to bed, as laying down always seems to be the worst part of the day on the pain scale. I have a 'ramp' of various pillows stacked up to kind of prop me up, which helps, but sometimes the pain is still pretty tough. I've always been a 'side sleeper', but with the cancer having spread into my hip / pelvic / lower back bones, trying to sleep on my side is now very painful, so I'm trying to learn to sleep on my back. I know, I know....wwaaaaahhh!!!! I'm getting the tiny violin and kleenex ready for the sad song..... :-)

Jen did an awesome and thoughtful thing yesterday - she had a couple of guys from church come over and bring one of our recliners up to our bedroom from downstairs and put it by the bed. Now, when the pain gets bad I can slip over into that chair and recline to sleep. I love my awesome wife..... :-)

Well, sorry this got so long. I'm going to get back to enjoying our time at the river here in Riggins. As always, the last thing I want to say is a huge THANK YOU to all of you who continue to hold us up in support, in friendship, in your thoughts and prayers. We feel it and we appreciate it so very much.

LIVESTRONG!!!

Steve



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1 comment:

  1. JHAugust 6, 2009 at 9:45 PM

    Hey Steve, I'm Greg Henke's daughter, I met you after the 70.3 last year. I have your blog tagged into mine and noticed the headline about Riggins. I work for a rafting outfit here, if there's anything I can do for you during your stay, let me know - I'd be happy to take your family through some rapids if I can swing it! Even in the evening after work sometime. Happy Riggins-ing :)

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