After my last blog entry, I began wondering (to myself), how statistically fortunate am I to have survived this long after my initial diagnosis. With Google in one hand and an inquisitive mind in the other (as they say, inquisitive minds want to know), I set off to answer this question.
A fine needle aspiration biopsy on April 29 2008 will mark my three year anniversary since my initial diagnosis. But, my lymph nodes started to become swollen in January 2005, 4 months before my diagnosis. So, I’m somewhere in the 3 to almost 3.5 year survivorship range. Knowing what I know now, I found two helpful websites to help answer this question.
The first website was one that further defined the stages of squamous cell carcinoma of the head and neck (SCCHN). It looked at primary tumor size, localized lymph node involvement, and further area metastasis. It rated each of these factors. (Reference 1). I’m taking an educated guess at some of these, but here is my assessment:
- Primary Tumor (T2) – Greater than 2 cm, less than 4 cm
- Lymph Nodes (N2, but maybe N3) – Evidence of movable or fixed local lymph nodes
- Distant Metastasis (M0) – No evidence of distant metastasis
In summary, I had stage IV SCCHN with T2, (N2 or maybe N3), and M0.
The fun doesn’t end here however. What does this mean? The second website (reference 2) divided stage IV into 2 groups. One group had “relatively” good results and the other had very poor results (to say the least). They were divided based on the above T, N, and M ratings. Patients with the new favorable stage IV have a 5-year survival rate of 30%, and those with the new unfavorable stage IV had a survival rate of 0%.
I fall on the borderline side of a favorable stage IV. I think that’s why my treatment has been so aggressive and my recurrences have been so frequent. In 2 years I’ll reach the 5 year mark. That’s a long way off when you’re living a day at a time. But 3 out of 10 people are still here then and I hope to be one of them.
It would have been interesting for the study to state the percent of cases which were on each side of favorable and unfavorable, but it was not available in the referenced article.
Take care.
References
1. http://www.emedicine.com/plastic/topic376.htm
2. http://linkinghub.elsevier.com/retrieve/pii/S0385814699000048
Friday, April 11, 2008
Tuesday, April 8, 2008
Between a Rock and a Hard Place
I love proverbs. There are websites out there with 100s of them. The more popular proverbs have origin, historical context, and date first published. They fit my style. They are usually short of words and long on meaning. We use to play a game with them where we would see who could name the most... back and forth between 2 or more people. When you ran out, you lost the game.
As I write this, yes, I’m between a rock and a hard place. The “rock” is continuing with my chemo regimen; the “hard place” is stopping my chemo. I’ve said this before and I’ll say it again, there are no right and wrong answers.
On one side is a view to continue what’s appears to be working. The issue with this is the toxicity of the chemo. My body may be reaching a critical stage right now where the cumulative affects are once again severely impacting the quality of my life. This includes: 1) Neuropathy which had in the past been annoying (and local to my toes), but is now reaching further up to the middle of my lower leg and is actually causing some significant short intense pain bursts (one to two minutes) in my toes periodically. In most cases, feelings will eventually come back, but not in all cases. 2) Fatigue which has kept me in bed with flu like symptoms for 5 days straight now. I also went on a 5 day antibiotic pack to help avoid pneumonia. Pneumonia is quite common in long term cancer patients. 3) A few other side effects, some mental, some physical, but not worth getting into. And 4) chemo related death. There are no good statistics on this as it’s hard to determine what killed someone, the chemo or the cancer, but one recent article I read said that up to 65 percent of deaths among children with myeloid leukemia follow chemotherapy complications. If you think about it, today’s chemo kills all cells, both good and bad, the purpose of the chemo is to kill the bad cells faster than the good ones.
On the other side of the equation is a view that says stop the chemo. The potential harm is a cancer recurrence. And, to make this choice that much harder, I’m more or less out of options. Sure, if it comes back, my doctors will try something. But, I’m already off the “planned” course and getting lucky twice is unlikely. I’m not overly worried about dying, but the process of dying with this type of cancer creates great anxiety. It will be painful and not be a pretty sight.
Next week I’ll talk to my doctor about some middle ground… a reduction in dosage, less in each sitting, spread them further apart, or some combination of the aforementioned. I don’t have a clue as to the implications for this, but he will understand this and be able to advise me. There is little doubt in my twisted mind that my current state (no evidence of disease) and longevity has pleasantly surprised my medical team.
Back to the proverb. Definition: In difficulty, faced with a choice between two unsatisfactory options. Origin: The earliest known reference was printed in the U.S. in 1921.
I hope you all are well. Take care.
As I write this, yes, I’m between a rock and a hard place. The “rock” is continuing with my chemo regimen; the “hard place” is stopping my chemo. I’ve said this before and I’ll say it again, there are no right and wrong answers.
On one side is a view to continue what’s appears to be working. The issue with this is the toxicity of the chemo. My body may be reaching a critical stage right now where the cumulative affects are once again severely impacting the quality of my life. This includes: 1) Neuropathy which had in the past been annoying (and local to my toes), but is now reaching further up to the middle of my lower leg and is actually causing some significant short intense pain bursts (one to two minutes) in my toes periodically. In most cases, feelings will eventually come back, but not in all cases. 2) Fatigue which has kept me in bed with flu like symptoms for 5 days straight now. I also went on a 5 day antibiotic pack to help avoid pneumonia. Pneumonia is quite common in long term cancer patients. 3) A few other side effects, some mental, some physical, but not worth getting into. And 4) chemo related death. There are no good statistics on this as it’s hard to determine what killed someone, the chemo or the cancer, but one recent article I read said that up to 65 percent of deaths among children with myeloid leukemia follow chemotherapy complications. If you think about it, today’s chemo kills all cells, both good and bad, the purpose of the chemo is to kill the bad cells faster than the good ones.
On the other side of the equation is a view that says stop the chemo. The potential harm is a cancer recurrence. And, to make this choice that much harder, I’m more or less out of options. Sure, if it comes back, my doctors will try something. But, I’m already off the “planned” course and getting lucky twice is unlikely. I’m not overly worried about dying, but the process of dying with this type of cancer creates great anxiety. It will be painful and not be a pretty sight.
Next week I’ll talk to my doctor about some middle ground… a reduction in dosage, less in each sitting, spread them further apart, or some combination of the aforementioned. I don’t have a clue as to the implications for this, but he will understand this and be able to advise me. There is little doubt in my twisted mind that my current state (no evidence of disease) and longevity has pleasantly surprised my medical team.
Back to the proverb. Definition: In difficulty, faced with a choice between two unsatisfactory options. Origin: The earliest known reference was printed in the U.S. in 1921.
I hope you all are well. Take care.
Friday, March 28, 2008
Gaining Hope Cautiously
Wednesday was a good day at the cancer center. I had seven appointments and they were generally on time. I was there for 8 hours. About half that time was spent with my doctors or their professional assistants. All the news was good. It’s been a little over 5 months since my last operation where my surgeon removed two cancerous tumors from the left side of my face. That makes it officially five months with no evidence of disease (NED). In another week, it will be the longest period or NED since my initial diagnosis almost 3 years ago. I actually know all the exact dates, but will spare you those details. I read a book yesterday that said remission begins at 2 years and one is considered cured if they remain in remission at the 5 year point. For me right now, I’ll take it one day at a time.
My biggest worry going into Wednesday was an irritation in the upper back part of my throat. It was in the exact area where surgery was performed to remove cancer cells/tissue from my soft pallet two years ago. I was hoping the irritation was caused by my new mouth device and not by something more sinister… like a cancer recurrence. Once people have cancer, worrying about recurrence is commonplace. Once people have a recurrence, they worry even more. It’s a vicious cycle. Having had 4 recurrences in the past 2.5 years gives me rational reason to be worried. It’s a longer story, but I’ll cut to the chase. I showed my dental oncologist the spot of irritation. He’s the one who designed my month device. He said he could see it right away and strongly believed it was the device that was causing the irritation. He took the device and refined it a bit. I slipped it back in my month and almost immediately all the friction irritation was gone. Just like magic. The spot itself is still sore, but I’m now thinking it is not sometime sinister and it will heal over the next week or two. It was a huge relief and I’ll sleep better because of this knowledge. Once again my thanks go out to all of those at my cancer center who saw me on Wednesday and all those other professionals who have helped me over the past few years.
I hope you all are well. Take care.
My biggest worry going into Wednesday was an irritation in the upper back part of my throat. It was in the exact area where surgery was performed to remove cancer cells/tissue from my soft pallet two years ago. I was hoping the irritation was caused by my new mouth device and not by something more sinister… like a cancer recurrence. Once people have cancer, worrying about recurrence is commonplace. Once people have a recurrence, they worry even more. It’s a vicious cycle. Having had 4 recurrences in the past 2.5 years gives me rational reason to be worried. It’s a longer story, but I’ll cut to the chase. I showed my dental oncologist the spot of irritation. He’s the one who designed my month device. He said he could see it right away and strongly believed it was the device that was causing the irritation. He took the device and refined it a bit. I slipped it back in my month and almost immediately all the friction irritation was gone. Just like magic. The spot itself is still sore, but I’m now thinking it is not sometime sinister and it will heal over the next week or two. It was a huge relief and I’ll sleep better because of this knowledge. Once again my thanks go out to all of those at my cancer center who saw me on Wednesday and all those other professionals who have helped me over the past few years.
I hope you all are well. Take care.
Tuesday, March 25, 2008
Rocky Road
In the land and time before cancer (BC), I was heading up a major software implementation team for a very well known nationwide retail store in NYC. Shortly before we went live, we threw a small party for the project team. This included people from my company and our clients. Among other things, we served Rocky Road ice creme. It was a symbolic gesture to say we all worked hard, it hadn’t always been easy (as in it has been a rocky road), but we were almost there. It’s easy for me to compare my cancer to a rocky road. I felt pretty good for about 4 weeks, then not well for 3 days (I’ll spare you all the details) beginning last Thursday night. I’m feeling better today. That’s one of the frustrating parts of my situation. I can’t seem to put a cycle on when I’ll feel well and when I won’t. I can get through the illnesses and discomfort, but it makes it so hard to make commitments and to plan anything that requires a specific time period. So, I adjust, reduce my commitments and move on.
I have a full day at the cancer center tomorrow with seven appointments including a chemo infusion. Given the news on my health lately, which has been generally positive, I look forward to what I hope will be continued confirmation as to my well being. I expect that this will be a normal day for me.
I continue to read about Leroy Sievers (lung cancer) on the NPR website and Randy Pausch (pancreatic cancer, former CMU professor) on his website. Leroy has had a really tough 6 months, but he keeps on fighting. For anyone who wants to understand the mindset of a cancer victim, Leroy’s site is A+. Randy has a book being published in April. He received a $7 million advance payment for his book. He has had some recent setbacks and over the past month is beginning to experience the real pain cancer causes. There’s no doubt in my mind he would happily trade his book advance for good health. That's one of the things cancer does for you. It helps you understand what's important.
Thanks for checking in. Take care.
I have a full day at the cancer center tomorrow with seven appointments including a chemo infusion. Given the news on my health lately, which has been generally positive, I look forward to what I hope will be continued confirmation as to my well being. I expect that this will be a normal day for me.
I continue to read about Leroy Sievers (lung cancer) on the NPR website and Randy Pausch (pancreatic cancer, former CMU professor) on his website. Leroy has had a really tough 6 months, but he keeps on fighting. For anyone who wants to understand the mindset of a cancer victim, Leroy’s site is A+. Randy has a book being published in April. He received a $7 million advance payment for his book. He has had some recent setbacks and over the past month is beginning to experience the real pain cancer causes. There’s no doubt in my mind he would happily trade his book advance for good health. That's one of the things cancer does for you. It helps you understand what's important.
Thanks for checking in. Take care.
Sunday, March 16, 2008
Normal Day
Hi. My cancer blog has focused on my cancer. This may seem like an odd statement for those of you living outside of cancer world. In reading other people’s cancer blogs, they focus on friends, family, trips, current activities, their cancer, feelings, and their cancer treatments. Being a private person, I rarely talk about anything other than life aspects directly connected to my disease.
This blog entry is not breaking with that tradition. But, yesterday was exciting to me, I had an almost normal day. I went to the beach near my house, got mildly sunburned on my legs (87 degrees and sunny out), I took a silly 2 hour bus tour of a historic city (although silly, it was educational and entertaining), and had lobster bisque soup at a boardwalk restaurant next to a water channel overlooking a bay with lots of small yachts and sail boats coming and going. My eating wasn’t pretty. A few napkins were required, but so what. Although the restaurant was a bit noisy, my new mouth piece now allows me to speak over the noise without the effort of shouting. This is a major victory. We left the house at 10 AM and got home at 9 PM. Other than trips to the cancer center, I’m sure I haven’t been out of the house for that length of time since my major operation in July 2006. Taking some illness-related paraphernalia with me for the day took a little extra preparation time to get ready for this outing. Overall, it was close to a normal day and I thoroughly enjoyed that part of it almost as much as the day’s activities themselves.
I don’t expect much new news in the near future and as such don’t expect to be writing blog updates as often as in the past. My next chemo is on March 26th. I have 7 different appointments scheduled at the cancer center for that day. That day too will be normal. Not the kind of normal that I like, but normal to me nonetheless.
Thanks for checking in. Take care.
This blog entry is not breaking with that tradition. But, yesterday was exciting to me, I had an almost normal day. I went to the beach near my house, got mildly sunburned on my legs (87 degrees and sunny out), I took a silly 2 hour bus tour of a historic city (although silly, it was educational and entertaining), and had lobster bisque soup at a boardwalk restaurant next to a water channel overlooking a bay with lots of small yachts and sail boats coming and going. My eating wasn’t pretty. A few napkins were required, but so what. Although the restaurant was a bit noisy, my new mouth piece now allows me to speak over the noise without the effort of shouting. This is a major victory. We left the house at 10 AM and got home at 9 PM. Other than trips to the cancer center, I’m sure I haven’t been out of the house for that length of time since my major operation in July 2006. Taking some illness-related paraphernalia with me for the day took a little extra preparation time to get ready for this outing. Overall, it was close to a normal day and I thoroughly enjoyed that part of it almost as much as the day’s activities themselves.
I don’t expect much new news in the near future and as such don’t expect to be writing blog updates as often as in the past. My next chemo is on March 26th. I have 7 different appointments scheduled at the cancer center for that day. That day too will be normal. Not the kind of normal that I like, but normal to me nonetheless.
Thanks for checking in. Take care.
Friday, March 7, 2008
CT Scan Results – Negative for Disease
I got 2 brief emails today. One from my chemo doctor and the other from his physician assistant. My CT scan from Wednesday night showed no evidence of cancer. Obviously, that’s terrific news. It’s what I was expecting and I‘m pleased. It doesn’t mean I’m cured, but the longer I can hold off the disease, the better my chances are that it will not return. My last operation to remove confirmed cancer cells was in October 2007, 5 months ago. If I can make it 6 – 9 more months with clean scans, I’ll begin feeling much more comfortable. As for the current chemo regimen, it will continue for the time being. That’s the other hurdle, what happens when the chemo stops? I think of it as another situation for my body to be tested somewhere down the road.
Thanks for checking in. Have a great weekend. Take care.
Thanks for checking in. Have a great weekend. Take care.
Thursday, March 6, 2008
No Pain, No Gain
I had chemo cycle 9 round 5 yesterday. It was a long day at the cancer center. I left the house at 9:00 AM and got back home at 9:30 PM. I accomplished a lot and therefore feel good about the day. It was busy, but with an incredible amount of waiting. Here’s a summary: 1) blood drawn, 2) oncology clinic visit, 3) speech therapy visit, 4) chemo (waited 4 hours for the orders to get from the oncology unit to the chemo unit - ugh), 5) missed dental oncology visit due to the late chemo timing, 6) supportive care clinic visit (waited, but wasn’t in a big rush), and 7) CT scan with contrast (waited – watched 3 episodes of Scrubs to pass the time away at the end of a long day). It was a full day in the life of a cancer survivor (or victim). I can’t decide which term to use today. It varies by mood.
All of my clinic/therapy visits were terrific. The care and devotion shown by these specialists are awesome. Plus, a friend that I’ve made during this journey who works at the hospital took time out while I was getting my chemo and visited with me. That too was terrific. I got one needle stick and 2 different IVs during the day. They were all successful on the first try. Yahoo. I’m calling the clinical trial to help me with fatigue a success. The supportive care unit is now working with me on a few other symptom management areas.
I hope to have the CT scan results back by Monday. I am expecting them to be clean and will be disappointed if they’re not. I don’t feel any new lumps or bumps. I believe the pain and other symptoms I have are chronic and a result of prior treatments, not cancer. I guess the saying “no pain, no gain” really does apply here. I’ll post the results soon after I get them. This chemo cycle began December 11 2007. At the time, my doctor said it should continue for 6 to 12 months or as long as I could tolerate it. It’s been 3 months and I’m tolerating it okay. As long as the scan results are clean, I suspect I’ll continue the chemo for awhile longer. If they’re not, we’ll have to regroup.
I hope all of you are feeling good and healthy. Thanks for checking in. Take care.
All of my clinic/therapy visits were terrific. The care and devotion shown by these specialists are awesome. Plus, a friend that I’ve made during this journey who works at the hospital took time out while I was getting my chemo and visited with me. That too was terrific. I got one needle stick and 2 different IVs during the day. They were all successful on the first try. Yahoo. I’m calling the clinical trial to help me with fatigue a success. The supportive care unit is now working with me on a few other symptom management areas.
I hope to have the CT scan results back by Monday. I am expecting them to be clean and will be disappointed if they’re not. I don’t feel any new lumps or bumps. I believe the pain and other symptoms I have are chronic and a result of prior treatments, not cancer. I guess the saying “no pain, no gain” really does apply here. I’ll post the results soon after I get them. This chemo cycle began December 11 2007. At the time, my doctor said it should continue for 6 to 12 months or as long as I could tolerate it. It’s been 3 months and I’m tolerating it okay. As long as the scan results are clean, I suspect I’ll continue the chemo for awhile longer. If they’re not, we’ll have to regroup.
I hope all of you are feeling good and healthy. Thanks for checking in. Take care.
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