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.

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 :-)

LIVESTRONG!!
Steve
Posted by at

2 comments:

  1. AnonymousAugust 27, 2009 at 12:17 AM

    Steve,
    Hang in there...really good news with the counts. Will be waiting to hear how you're doing. Thanks for your updates and for your humor.

    ReplyDelete
  2. UnknownSeptember 6, 2009 at 10:18 PM

    Hey Steve.

    Sorry I lost you on Facebook. Scared me for a second but then I remembered you had this blog. Great to see you are still fighting. I did RAGBRAI with Team Livestrong again. 500 miles of hills in southern Iowa. Anything I can do to help this fight that impacts you and so many! It was amazing to see the people and hear the stories along the route. I had an awesome experience where a lady about our age, rode up next to me and asked if I was really on the team or just wearing the jersey. I told her yes I am on the team and she broke down crying. She had just lost her daughter to Cancer. We ended up riding for a few miles just talking and sharing and even praying. Of course we couldn't bow heads and close eyes as we were riding but it was great. I am headed to Austin for the Challenge next month to meet up with some friends who were part of the Global Cancer Summit in Dublin. There are great things happening in this fight now.
    Keep the faith and Livestrong,
    Shane

    ReplyDelete

Subscribe to: Post Comments (Atom)