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, August 24, 2009

Update 8/24/09

Sorry I'm behind by a couple of weeks. Two weeks ago when I had my labs done, my counts had actually come up some, and I didn't have to do a transfusion. That was good news because it indicated my body was recovering its own ability to make and maintain better blood on its own.

Last week when I was in, my WBC's (White Blood Cells - infection fighters) had come up quite a bit - almost double of the previous week. They're still very low compared to a 'normal' person but I haven't been normal for a while now ;) Most people knew I was abnormal well before cancer came along!!!

My RBC's (Red Blood Cells) were down though and I was anemic, so I got a transfusion the next day. Pretty routine now I suppose.

The doc has me trying some steroids designed to help with the bone pain I'm experiencing in the low back and hips where I have bone metastasis tumors. It's hard to tell whether it's really working or not. The first pack I took didn't seem to do a lot for the pain but it helped me be more alert and awake. This second pack I'm on now doesen't seem to be having the same effect....or any effect at all really. So I don't know....we'll see what the doc says when we see him this week.

Jen is back to school, so we're back to trying to schedule my appointments so she can get back over to Boise for them. She's pretty amazing how she keeps so many things going at one time and always has a smile.

We're still glad we rescued Riggs (the dog) from the mountains a few weeks ago, but we've decided we really can't keep him ourselves. He just needs more activity than we're able to give him. I had all these visions of being able to take long walks with him, etc but as my hip/back pain gives me fits I'm becoming less mobile. I can't walk nearly as far or as fast as he needs to go each and every day. We're trying to go through a couple of dog rescue organizations to find a good loving home for him. If at all possible we don't want to take him to the pound. If you know anybody who would want Riggs and would give him a good home, plesae contact us through the site here.

As usual, we have continued to receive an outpouring of love and support from folks in many different forms - especially through church. Ten Mile Christian Church has been pretty awesome from the very beginning of all this - we really can't thank them enough. Most of it is anonymous and we don't even know who to thank. We are so appreciative of all that has been done and is still being done for us.

I'll try to update again before another two weeks goes by :-)


Thursday, August 6, 2009

8-6-09 again, but a little more personal....

I've always been a little hesitant to get too personal on this blog. We never really intended it to be a place for me to vent my frustrations, or talk about my biggest fears in detail....pour out my soul, that kind of thing. We've tried to keep it just more informational to keep everybody updated.

But something has been on my mind - I guess 'bothering me' is a more honest way to put it. I was talking to Jen about it over dinner and she really encouraged me to share my thoughts here on the blog. She thinks it's something many cancer patients deal with, and that it couldn't hurt to just write openly about it so people who have never been around this disease can better understand.

I've explained on the blog before that the cancer has metastasized into my bones, with the most concentration of tumors and cancer activity being in the area of my waist - hips, pelvis, low back. We've known about this for quite a while and for quite a while it was mainly just a concern in terms of the metastasis. The only 'symptom' I'd had from it was some hip pain I'd had on the right side for several months. It wasn't constant and it was pretty easily controlled with my pain meds.

As it got worse, we radiated the spot on the right that was hurting for a couple of weeks and it absolutely did help. But other spots in the same area have become painful too. Actually that whole area has become painful - I can't really isolate any one area. As I explained before, our radiation oncologist felt like we were kind of fighting a losing battle by trying to chase individual spots around with radiation - because of the time and extensive process it takes to radiate each new spot.
Yesterday, I forgot to mention, Dr. Zuckerman actually prescribed me a steroid drug that I'm going to start taking in hopes of controlling the pain. I'm waiting until we get back from camping to take it but I'll be on it soon and hopefully it will provide some relief.

So here's the deal. Sometimes, the pain is severe, both in the lungs and in the bones. I have started using a cane or walking stick some days when I'm having trouble with the pain and stiffness, because it's making walking, or getting into or out of a chair, or a car, very difficult. Hopefully the steroids med will help as it kicks in, but unfortunately for now, sometimes all the pain meds I'm on are not even enough to make a dent in this area of pain when it flares up. I know...I whining :-) but YEEOOOOWWWZA!!

OTHER days, the pain isn't so bad. Or even at other times during a single day it can change. I can have a terrific morning and an awful afternoon....or vice versa. Sometimes I can even have a whole day in which I feel pretty good - I get around fine - I don't need to use the cane - and I can function pretty normally.

Why is it like that? So different from one day, or one moment, to the next? I have no idea. I guess it's just the nature of this disease. It's not always consistent; not always predictable. But what happens as a result is that people around me see me in a variety of very different 'conditions'. One day you may see me hobbling on a cane - the next day you may see me walking pretty normally at the grocery store. I even played a little golf the other day! I will admit I paid for that one later, but it was fun! Sometimes if I can keep the hips on the move I can keep them from stiffening up. It's typically after a period of sitting or low activity that I start to have trouble.

I know that some people don't really understand this disease, or how it affects those of us who attempt to survive it. I was that person myself the day before my first diagnosis!! I had no idea about any of it. So you see a guy who seems crippled one day and then you run into him driving a golf cart the next day, and you think, wait a minute......something doesn't add up here. Is this guy a sham or what? Is he faking?

So there you have it - the idea that somebody would be led to believe that is very bothersome to me. I know we shouldn't focus on what others think, and typically I think I'm pretty good at avoiding that. But this one bothers me because a few times I have been keenly aware of situations where people questioned my 'real' condition (not to me of course - behind my back). Not that they questioned that I had cancer - it wasn't that. It was more an issue of them feeling like I was, as they call it, "playing the 'C' card". 'Playing the 'C' card' is a way of saying that somebody uses their cancer to get attention or sympathy, or charity or other benefits that they might not otherwise get. Regardless, when you have so much to deal with already it's just one of those things that kind of shocks you and shakes you up a bit. Sure, my friends and I have joked about 'playing the C card' (because we all have sick senses of humor!!!) but it was all in fun and they all knew I'd never intentionally do it. But I've run into a few others who didn't know me as well, who thought that's what I was doing simply because of seeing me feeling good one moment and not good in another.

So I just wanted to explain 'for the record' for what it's worth. Of course I can't speak for any other cancer patient or survivor. But sometimes I'm full of color, sometimes I'm pale. Sometimes I'm ravenous for food and sometimes I'm nauseous....or somewhere in-between. Sometimes I 'look great' (according to comments I get), and other times I look terrible - (a couple of my friends are honest enough to tell me). And finally, sometimes I'm in debilitating pain, and sometimes I have the pain controlled fairly well.

I don't know why. I can't explain those peaks and valleys, but at least for me, they happen daily -sometimes hourly!! Since I can't explain it, I feel like all I can ask you to do is to please accept it. I doubt you'll see me in a wheelchair one day and racing the Boston Marathon the next day, but you get the point. Please accept (and expect) that you may see me or hear from me in a wide variety of physical conditions, so don't let it surprise you.

I don't know, maybe this all sounds pretty silly. But I wanted to get it off my chest, for what it's worth. If there's any of you survivors out there who have dealt with this sort of thing before - give me a shout out...I'd love to hear from ya'.

Wow....two book-length posts today!! Tired, tired fingers and it's past midnight now - I should really get away from the glow of this computer in the dark hotel room and get to bed!!

Or maybe I'll just check out a couple of YouTube clips real quick..........................................kidding!!! If I did that, the next thing I know it would be 2:30am and I'd be in trouble come morning when the kids are rearing to get down to the river!! Even at 12:30 it's late for an old man you know :-). I'll be needing lots of coffee as it is.....

Good night, and as always: LIVESTRONG!!!


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.