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.

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