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.
-Steve
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Jen and I have been looking for a way to keep friends updated on what's going on with my treatment and progress. We were able to create this blog as a way to do just that. We'll try to keep the site updated with the latest so feel free to visit any time!
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.
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.
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