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.

Thursday, September 17, 2009


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.

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.

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.



Saturday, July 25, 2009

Update Saturday July 25, 2009

We met with the doc on Friday morning.  It does not appear that squamous cell carcinoma (my primary cancer) is in my blood marrow at this point, which is good.  However, the biopsy results are inconclusive as to what's causing my counts to drop after each transfusion.  Whatever it is, Jen, Dr. Zuckerman, and I have elected to stop chemo and radiation at this time, because the dangerous risks from the chemo far outweigh the slim chance of any benefit. 

You know, it's ok.  I was dreading starting chemo again next week so I'm enjoying the idea of just letting my body work on healing itself and trying to otherwise get as healthy as I can 'naturally'.   

Honestly for a long time I had struggled with the idea of stopping chemo, because there was some element of it that seemed like 'quitting' to me.  But I've come to realize, 'fighting' cancer doesn't mean you have to be dumping poison into your body and frying it with radiation.  Fighting cancer is an attitude - a state of mind - a way of living - to refuse to let cancer run (or ruin) your life.   You can fight cancer with your mind, your heart, your thoughts, what you eat, how you take care of yourself, and how you choose to live each day.  You don't always have to have an IV in your port dumping poison into your veins for it to be a legitimate fight against this disease.  

So, I'm very much at peace with what's going on right now.  Jen and I will be enjoying the reprieve from the sickness and frailty that the chemo brings.  We'll be enjoying every bit of life and especially this summer before Jen has to go back to school.  

As always, LIVESTRONG!

Wednesday, July 22, 2009

Update 7-22-09

After the transfusions I had over the weekend, a blood draw on Tuesday showed that my counts were back down already. With my counts down, I will finish out radiation this week but I will not be able to start chemo next week as originally planned.

Since something seems not quite right with my blood counts (being low despite not being on chemo), today Dr. Dan did a bone marrow biopsy on me. This involved removing some bone marrow and a small piece of actual bone from my left hip. The purpose of the biopsy is to see if the problem with my counts indicates bone marrow involvement. If it does it wouldn't be a big surprise given that we already know it's in the bone.

Once we get the biopsy results we'll know better what to do, but regardless we have to get my counts back up before I'd be able to start a new chemo regimen. We just wanted to let everybody know, since we've been saying for some time that chemo would start next week.

As always, thanks to all of you who have been following our journey and have been so supportive through prayer and other acts of kindness. We'll update once we know what's going on next.


Sunday, July 19, 2009

Update 7/19/09

Well...this has been an interesting week since we got back from Seattle. I had not really felt very good during the trip and it seemed to get worse as the week went on. I've just be nauseous sort of constantly and it's led to me losing too much weight. I weighed the other night at 158 lbs, which is too puny for my frame. I've been getting radiation but there's nothing about the location of the radiation that should be causing nausea...and I haven't yet resumed chemo, so it's not that. I've also been experiencing some new areas of lung pain. I'd just try to get through it but sometimes the pain is more than I can handle even with my 'breakthrough' pain meds.

So....I saw Dr. Dorn and Dr. Zuckerman this week. We've been trying to radiate these new areas of pain, but the problem with that is that as long as we keep chasing these new pain areas with radiation, the longer we're delaying me getting back on chemo. Clearly the new pain areas indicate the disease is spreading some, so the docs and I agreed we'd wrap up the radiation next week and immediately get going on chemo again. Dr. Zuckerman said normally he'd give a break after radiation before starting chemo, but he feels like I should skip the break and get going immediatley on the chemo. Jen and I completely agree with the more agressive approach. So I'll finish radiation next Friday (the 24th) and then begin a new chemo regimen the following week.

With these doctor visits we decided that perhaps me not feeling good lately is due to dehydration, so we scheduled some fluids. They also took some labs and we discovered that my counts were very very low. Dr. Dan said he was surprised I was still standing looking at my counts! Anyhow, I was immediately scheduled for two days worth of blood transfusions...yesterday and today. The transfusions aren't anythng to worry about...just mostly an annoyance because they take so long! Each blood unit takes around 2 hrs and I'm getting multiple units each day, so it makes for long days. Hopefully getting the transfusions and getting better hydrated will lead to feeling better - I'm confident that it will. I just need to finish out radiation this coming week and then start back up with chemo next week.

We're still in the 'afterglow' of our fun trip to Seattle - it's hard to believe a week has gone by already since we got home. We're still laughing about stories and things that happened while we were there. The kids sure had a good time - we all did.

I'll update again once radiation is wrapping up and chemo is starting. I'll be on Taxotere and Tarceva. I've been on Taxotere before - it's a standard IV administered chemo. The Tarceva is a new one and somewhat still in the experimental stage, but I guess it shows some promise so I'm certainly willing.

As always, thanks to everybody for your love and support in so many different ways. We are so very thankful.


Monday, July 13, 2009

Family trip update

Seattle was a success! We left Sunday the 5th...which happened to be Braden's 13th birthday...and arrived in Lynnwood that evening by dinner time. The kids enjoyed some pool time right away! Then Monday was Mariner's day!!!! What a great game! They really performed for us. I kind of started feeling sorry for the poor Baltimore Orioles. They didn't let them even get a hit in. But not too sorry, because it was really fun to win!!
Thank you to Coralie and Al for such a memorable night..bus adventure and all!! :-)
Then Tuesday Aunt Laurie got Braden his TRAXX license so he could get some gas powered go-kart action. What fun the kids had there! Erin and Dano beat the socks off the boys! Girl POWER! Steve will add some picts to the blog when he gets a chance.
Wednesday was spent at Nike and Pike's Market...thus allowing Braden to spend that birthday money. Then we made some totally awesome tye-dye shirts with the cousins that evening. And Justin rocked out the coolest stencils for us to add to the t-shirt making frenzy. You will have to ask the kids to show you some the t-shirts they made. They are so terrific! It was such an awesome way to spend time with the family and have some take-home memories. Thanks to the fam for that funtime!!! Thursday we did the Duck Tours ride through Seattle followed by some more Pike's market time. And Finally Friday and Saturday were spent hanging with Aunt Laurie and Uncle Rhett and the cousins....enjoying more of their delish meals, generous hospitality, and greasy gloppy, colorfully fun times! We will cherish every memory.
Thank you to each and every person who directly and indirectly helped make this trip, friends, and strangers. Thank you to our family for graciously taking us in and letting us bombard your home and feeding us for a week. We know that many have sacrificed much for us. We are grateful beyond words.
Jen, Steve, and kids

Thursday, July 2, 2009

Update 7/2/09

Update 7/2/09
This week has included some changes in plans, but that is actually our “normal” now. If things went as planned we would be surprised! What was suppose to be Steve’s last chemo treatment (and a short one) yesterday, ended up being a 6 hour day at MSTI. Because Steve has had some increased pain in the opposite lung that was being treated, Dr. Dorn prepared a new radiation schedule for him and started him on a new increased dose for Wednesday and Thursday to some areas in the pleura of his upper lung area. This new plan is aimed at trying to reduce the pain in those areas. The remainder of that treatment will take place when we return from our Seattle trip the 13th. Then today, we are back at MSTI and 4-South for another double dose of radiation and a transfusion (they found his blood counts to be low yesterday as well).
So as you can see, we are spending some last minute quality time here at St. Lukes before heading out on our wild Seattle adventure. Although it is not how we expected to spend our last couple of days getting ready for the trip, we are thankful that the MSTI staff could get us worked in and Steve taken care of before we leave.
We continue to keep you all in our thoughts and prayers with great gratitude and thanksgiving. Have a terrific 4th!
Jen, Steve, and the kids

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

Wednesday, May 27, 2009

Update 5/2709

Well...I'm in for my weekly treatment today and my labs came back showing low blood counts. All my counts are significantly down (reds, whites, netrophils, platelets). So, tomorrow I'll be over at St. Lukes getting a blood transfusion. The low counts probably explain why I've not been feeling so good. It's kind of felt like I wasn't getting the normal recovery from my last round of triple chemo two weeks ago.
The blood transfusion should help me get to feeling better. I've wondered before what it would be like to get somebody else's blood. Maybe all of the sudden I'll like liver or have an uncanny need to watch Oprah re-runs. I mean if you think about it - wouldn't you rather get the blood of an athelete than a couch-potato who only gets off the couch to open another bag of Cheetos? (or to go give blood I guess). Probably doesn't matter, just strikes me as funny to think about.

We are sending the link to this site to a number of people who may not have seen it before, so we wanted to take a second to reiterate our outlook:

- We haven't lost our faith in God; as a matter of fact it's probably been strengthened
- We still believe a miracle is possible - specifically a miracle of healing
- We recognize that God's will and plan for our lives is bigger than what we can understand as humans. What we envision as the needed miracle may not be the same miracle He has in mind.
- We are choosing to live life to the fullest every moment possible because frankly NONE of us are promised a tomorrow.

Until next time....LIVESTRONG!!

-Steve and Jen

Thursday, May 14, 2009

Update 5-14-09

I'm sorry it's been so long since I've updated the blog. But I'm trying to get caught up now. So here's the latest:

Yesterday was 'big' chemo day. But they almost wouldn’t let me have it. My platelets (the clotting mechanism of the blood) are low. They typically won’t give you any chemo treatment if your platelets are under 100,000 and mine were at 86,000. But after I begged, they went ahead and they’re treating me, but I have to just watch for a number of symptoms, of which if I had any, I need to get down to MSTI quickly. Worst case is they’ll give me a platelet transfusion.

The doc explained that after being on chemo for a long time, the bone marrow starts struggling to re-generate the platelets that chemo destroys. He said not to be surprised if we reach a point where a platelet transfusion becomes required each treatment cycle. The transfusion is a pretty quick deal, done over at the hospital.

I’ve been struggling with pain issues. Despite being on a very high dose of Fentanyl narcotic skin patches and Oxycodone, I’ve been waking up once or twice a night in tears from the horrible chest pain. It’s not from the treatment – it’s from the cancer eating away at the pleura. Something about laying down makes it worse. Anyhow they changed over my pain meds to an Oxycontin regimen (no more patches). Oxycontin is just extended-release Oxycodone.

Oxycontin and Oxycodone are both very valuable on the street as you may know. The addicts like Oxycontin. It’s supposed to be swallowed whole so the extended-release mechanism works correctly, but the addicts chew it and swallow, to get the entire day’s dose all at one time. Nothing to do with me really, just interesting. The street value of this one bottle of Oxycontin that I have in front of me here is probably $1000. It cost me $75 even after prescription insurance.

Anyhow hopefully this change will help me better deal with the pain. 

Today is thursday and the nausea hasn't set in too bad yet (that will happen sometime today or tomorrow). So I went on in to work today, but couldn't stay all day...had to work from home some.

Thanks SO MUCH as always for the prayers and well-wishes on our account. LIVESTRONG


Wednesday, April 8, 2009

4-8-09 Week 2 Begins

Well, the first week of chemo is done and I'm in the chemo ward all day today getting the week 2 dose. It wasn't as severe as the 3-week version, that's for sure. I was pretty nauseated for several days, but it eventually subsided and I was just mainly fatigued after that. Yesterday was a great day - I felt pretty good. I think the worst thing was just not feeling good over the weekend. It was nice and the kids were active but I just couldn't join them like I wanted to!

Jen is at school today, which she just hates. She can't stand not being here when I have chemo. But, she's out of time off and really needs to finish out the school year strong if at all possible. So I encourage her not to worry about it. She does anyhow. :-)

I'm encouraged that at least for now, this chemo seems like it will be pretty manageable. We'll see how the next few weeks go, but so far so good. Thanks to all who keep supporting us in some fashion - like through prayer especially!!


Tuesday, March 31, 2009

M.D. Anderson

Well, Jen and I spent last week at MD Anderson Cancer Center in Houston. Basically it was determined they don't really have anything there for me. So I'm back to Boise and MSTI and re-starting treatment. It was really a great trip - it fell on our anniversary and we got some time at Galveston beach to kick back and enjoy the beautiful weather down there.

I re-start weekly chemo back here in Boise today. Comparing my previous CT scan in January to the one I had in Houston last week: There is some growth in the size of the tumors in my lungs. In the previous CT my tumors were 1-2 cm diameter and now they are all greater than 3cm. The pleural effusion before was rated as mild but is now considered moderate with some compression of the lung (the 'effusion' is where the cancer has caused pleural fluid in the linings of the lung to accumulate). The doc said that explains the increased pain I've been having on the left recently. The growth of the tumors is not too much a surprise since I've been on a doctor-mandated chemo break for a bit now. But on a positive note, so far there is no indication of metastasis to any other areas of the body.

So, I'm pressing on. I'll do as many weeks of chemo as my body can tolerate, then take a one-week break if needed, and then go right back on. We'll do another scan in a couple of months. Instead of getting chemo every 3 weeks I'll get it every week. This is intended to avoid that really bad period of 10 days or so that I have on the 3-week dose. I'll still be sick but hopefully not as severely as it was getting before. They basically just break the same dose up into 3 weekly infusions.

Basically, in Houston, they did have some clinical trials, but none of them would be appropriate for me unless my treatment here was simply failing...which isn't the case as we've maintained relative stability of the disease with the treatment here. It would have been too risky to pull me off a 'known' on a slim chance that the 'unknown' could be any better.

Even though nothing worked out in Houston for us, we don't regret the trip AT ALL! It was a great time for us that we treated like a vacation and we had a blast. And more importantly, we learned that what we're doing for the cancer right here in Boise is the best thing we can do already. That's really relieving, considering what logistics/finances would have been involved in having to get treatment in Houston. So we don't have to do that - but we ended up with a second opinion from what many consider to be the best Cancer Center in the world.

So I'm actually sitting in the chemo chair right now. I've been getting infused since about 10:30 this morning. It's 2:45pm now (Tuesday 3/31) and I've got 1-2 hours of chemo infusion left.

Just wanted to update everybody - we thank you again for the amazing support and love we've received from our friends, and even people who we barely know (or don't know at all!!). People's generosity is often amazing.


Thursday, March 19, 2009

Headed south

Tomorrow Jen and I head for MD Anderson in Houston. We're excited about the trip and hopeful they will have something promising for me. So many things came together to allow us to make this trip - financially, schedule-wise, etc and we are very thankful. It's our anniversary tomorrow (3/20) so it's nice that my first appointment isn't until Monday morning - we have some time to kick back and just enjoy the trip for a couple of days.

We'll update just as soon as we have new news. Thanks everybody....Steve and Jen

Thursday, March 5, 2009

Update 3-5-09 Headed for Houston

MD Anderson called yesterday and has accepted Steve to come down and be evaluated.  We are pretty excited. We don't anticipate they'll have any 'standard' treatment options for me beyond the chemo he's doing here in Boise, but we're hoping there will be a clinical trial he's eligible for.

If nothing else - even if MD Anderson can offer us nothing, we'll at least have the peace of mind that we've seen the best of the best about Steve's case, and that we've done everything we can and pursued every lead to try to beat this thing. 

Thanks to all for the prayer. Thanks especially to our church family at Ten Mile Christian for all the support in so many different ways.

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....