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.

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