A couple of weeks ago I got the results from my year-3 PET scan and blood tests. In my oncologist words the results were, “nothing but spectacular”. This was very good news indeed. I was really worried about this PET scan. About a month before my scan, I started feeling some discomfort in my groin area where a tumor was removed. I’ve had these feelings of discomfort before due to my hernia surgery, but this time the feelings were different. So I started to worry about it. It didn’t keep me up at night, but I did spend some time worrying about it. It was time wasted. Over and over again I learn the lesson: don’t waste time worrying about problems until you know they actually exist.
If you are facing a similar situation try not to worry about it until you know a serious problem exists. Have faith in yourself that you will properly deal with it if it does occur and meanwhile, live a happy life.
Showing posts with label PET scan. Show all posts
Showing posts with label PET scan. Show all posts
Wednesday, April 20, 2011
Friday, December 31, 2010
Halfway is Almost There
Halfway is Almost There
A New Prognostic View for Diffused Large B-Cell Lymphoma Survivors
Several weeks ago my wife and I were running on our local bike trail and came across one of her friends. The friend asked how I was doing with my fight with cancer and I replied that my recent PET scan showed I have now been cancer free for two and a half years. She said, “That’s wonderful, you are halfway there”. For many cancers, like mine, if one survives cancer free for 5 years you are considered cured. Making it 5 years is a key milestone for most cancer patients. So measured in time I am halfway to being cured. However, by looking at it in a different way, by risk or probabilities, I am almost there.
When I was first diagnosed with aggressive cancer I was giving a probability of about 50% of making it 5 years and being cured. That scared the hell out of me. I would have preferred something like the 90% chance they give to Hodgkin’s lymphoma patients. Since my first diagnosis my oncologist doesn’t speak in terms of probability or numbers. He just says, “You are doing great”, or “it couldn’t be better”. Now, I don’t think I’m the only cancer patient that would like to hear quantitatively what my chances are of being cured, especially if those chances have improved over time. What if you had an accountant take care of your finances and during an annual review of your finances your accountant says, “You are doing great”. Would you be happy with that and no numbers? I don’t think most people would, they would want to know how much money they have in the bank.
I researched the internet for an answer. I looked at all the reputable cancer websites(1) and through many published medical papers on cancer survival studies, but they all show the same thing, survival probabilities for cancer patients who have been just diagnosed. Figure 1 below shows an example of such a plot. I obtained the data for this plot from a medical paper published on a study made in British Columbia.(2) The plot is the overall survival (in percent) of 365 patients with diffuse large B-cell lymphoma (DLBCL), the type of cancer I have. The way to read the plot is first pick a time on the horizontal axis, draw a vertical line until it reaches the curve, then at that intersection point draw a horizontal line to the vertical axis and read off the probability of surviving that period of time. For my disease, the probability of surviving 5-years is just under 70 percent, which means out of 100 patients, 70 of them will be still alive after 5 years from diagnosis.
Figure 1. Overall survival of patients diagnosed with diffused large B-cell lymphoma.
From the plot in Figure 1 you can see the importance of 5 years. The curve is flat from 3.5 years to beyond 5 years, whereas the period from 0 to 1 year the curve is very steep. That means during the first year patients are lost very quickly, whereas after 3.5 years and beyond there were no patients lost to the disease. There are survival plots that go way beyond 5 years and they show that after 5 years it is rare that a patient is lost to the disease. Therefore making 5 years typically means your risk of dying from the disease is pretty low, and it’s time to be concerned of other things like car accidents or being struck by lightning. The problem is that these plots are only directly useful for recently diagnosed patients.
After some thought I got an idea that maybe I could take the published 5-year survival data for recently diagnosed patients, and convert it to data that shows probability of surviving 5 years based on how long one has already survived. That would take an equation that I would have to derive from some basic principles of probabilities. I won’t bore you with the theoretical details, but just in case you are interested you can read it later in the Appendix of this post. The equation I derived (see Equation 1 below) takes values from a survival rate like the one shown in Figure 1, and gives the probably of surviving 5 years based on how long one has already survived after diagnoses. In the equation P0(t=5) is the probably point read from the plot at 5 years and P0(t) is the probability point read at t years, where t years is the number of years one has already survived. P5(t) is what I call the Running 5-year survival rate, and is the probability of surviving 5 years based on how many years one has already survived since first diagnosis.
(1)
Figure 2 shows two curves based on data taken from the British Columbia paper on survival of DLBCL patients. The red curve is for all patients in the study, and the blue curve is for patients that meet a certain criteria – patients whose cancer was found in its early stages. Fortunately I happen to be in the better group. The way to read this plot is look up how long you have survived since diagnosis on the horizontal axis, draw a vertical line up to the curve, then at the intersection draw a horizontal line to the vertical axis and read off the probability of surviving to 5 years. I’ve drawn lines for myself at 2.5 years and you can see I now have about a 96% chance of surviving 5 years. However, notice at 3 years, my probability is 100%. I’m almost there! I’m almost to the point of being cured. Now I fully understand when my doctor says, “It couldn’t be better”.
Figure 2. Running 5-year survival rate based on years survived after diagnoses of diffused large B-cell lymphoma.
You have to be a little careful using these charts. For example, the fact that the blue curve in Figure 2 is at 100% after 3 years does not mean the TRUE probability of survival is 100%. It just means that after 3 years, the remaining survivors of the original 365 patients in that particular study didn’t die after 3 years. Science tells us that if we included many more patients in the study, say 10,000 patients or 100,000 patients, we would find that the blue curve will never go to exactly 100%. There is always some risk of the disease coming back. However, when the probability of surviving gets up to somewhere near 99%, one is doing very well, especially when you consider that about 1-in-4 males and 1-in-5 females will eventually die from some type of cancer.(3)
I’m excited about this. I find much more comfort in knowing quantitatively that my survival chances are so good and that nearly all the risk is gone after three years, not 5 years. My three year PET scan will be in March 2011, just before my 52nd birthday. There’s no 100% guarantee I’ll have a clean PET scan, but there are good reasons, scientific reasons, to be very hopeful. Whatever happens in the future, there is one absolute guarantee, I will thoroughly enjoy life to it its fullest.
Appendix
The following are some simple mathematics with statistics. The probability in percent P0(t) of surviving t years after diagnosis is defined as
(2)
where N(t) is the number of survivors at time t, and Np is the total number of patients at diagnosis in the study. What we want to know is the probability of surviving 5 years based on the number of years already survived (P5(t)) after diagnosis. P5(t) is defined as
(3)
where N5 is the number of survivors at 5 years and N(t) is the number of survivors at time t. So the probability of surviving 5 years after already surviving t years is the number of patients that have survived 5 years divided by the number of patients that have survived t years. Multiplying by 100 puts the probability in terms of percent. By combining Equations 2 and 3 and doing a little algebra we find that P5(t) can be expressed in terms of two probabilities,
(4)
which can be read directly off the published graphs and we do not need to know the actual number of patients in the study.
To accurately obtain values from published graphs, I use a trick that involves Microsoft PowerPoint software. I use the Print Screen keyboard key to copy an image of the graph into the Windows clipboard; then I paste the image into PowerPoint. I create a PowerPoint circle object and place the center of the circle over a point on the graph that I want to record location values. Within the Format AutoShape tool I click on the Position tab and read the horizontal and vertical position of the little circle. These are coordinate values from the PowerPoint coordinate system. I enter the coordinate values into an Excel spreadsheet and repeat the process until I have enough points that accurately represent the curve on the graph. The points from the PowerPoint grid coordinate system must be converted into the graph coordinate system. To make the transformation I record a couple of points from each of the graph axes into the Excel spreadsheet where the transformation from one coordinate system to the other can be made with the appropriate equation. Once I have the curve values into Excel I can then apply my equations to manipulate the data and create my own plots.
References
(1) www.mayoclinic.com/health/cancer/CA00049
(2) Laurie H. Sehn, et. al. ,”The revised International Prognostic Index (R-IPI) is a better predictor of outcome than the standard IPI for patients with diffuse large B-cell lymphoma treated with R-CHOP”, www.bloodjournal.org, October 5, 2010.
(3) www.cancer.org/Cancer/CancerBasics/lifetime-probability-of-developing-or-dying-from-cancer
A New Prognostic View for Diffused Large B-Cell Lymphoma Survivors
Several weeks ago my wife and I were running on our local bike trail and came across one of her friends. The friend asked how I was doing with my fight with cancer and I replied that my recent PET scan showed I have now been cancer free for two and a half years. She said, “That’s wonderful, you are halfway there”. For many cancers, like mine, if one survives cancer free for 5 years you are considered cured. Making it 5 years is a key milestone for most cancer patients. So measured in time I am halfway to being cured. However, by looking at it in a different way, by risk or probabilities, I am almost there.
When I was first diagnosed with aggressive cancer I was giving a probability of about 50% of making it 5 years and being cured. That scared the hell out of me. I would have preferred something like the 90% chance they give to Hodgkin’s lymphoma patients. Since my first diagnosis my oncologist doesn’t speak in terms of probability or numbers. He just says, “You are doing great”, or “it couldn’t be better”. Now, I don’t think I’m the only cancer patient that would like to hear quantitatively what my chances are of being cured, especially if those chances have improved over time. What if you had an accountant take care of your finances and during an annual review of your finances your accountant says, “You are doing great”. Would you be happy with that and no numbers? I don’t think most people would, they would want to know how much money they have in the bank.
I researched the internet for an answer. I looked at all the reputable cancer websites(1) and through many published medical papers on cancer survival studies, but they all show the same thing, survival probabilities for cancer patients who have been just diagnosed. Figure 1 below shows an example of such a plot. I obtained the data for this plot from a medical paper published on a study made in British Columbia.(2) The plot is the overall survival (in percent) of 365 patients with diffuse large B-cell lymphoma (DLBCL), the type of cancer I have. The way to read the plot is first pick a time on the horizontal axis, draw a vertical line until it reaches the curve, then at that intersection point draw a horizontal line to the vertical axis and read off the probability of surviving that period of time. For my disease, the probability of surviving 5-years is just under 70 percent, which means out of 100 patients, 70 of them will be still alive after 5 years from diagnosis.
From the plot in Figure 1 you can see the importance of 5 years. The curve is flat from 3.5 years to beyond 5 years, whereas the period from 0 to 1 year the curve is very steep. That means during the first year patients are lost very quickly, whereas after 3.5 years and beyond there were no patients lost to the disease. There are survival plots that go way beyond 5 years and they show that after 5 years it is rare that a patient is lost to the disease. Therefore making 5 years typically means your risk of dying from the disease is pretty low, and it’s time to be concerned of other things like car accidents or being struck by lightning. The problem is that these plots are only directly useful for recently diagnosed patients.
After some thought I got an idea that maybe I could take the published 5-year survival data for recently diagnosed patients, and convert it to data that shows probability of surviving 5 years based on how long one has already survived. That would take an equation that I would have to derive from some basic principles of probabilities. I won’t bore you with the theoretical details, but just in case you are interested you can read it later in the Appendix of this post. The equation I derived (see Equation 1 below) takes values from a survival rate like the one shown in Figure 1, and gives the probably of surviving 5 years based on how long one has already survived after diagnoses. In the equation P0(t=5) is the probably point read from the plot at 5 years and P0(t) is the probability point read at t years, where t years is the number of years one has already survived. P5(t) is what I call the Running 5-year survival rate, and is the probability of surviving 5 years based on how many years one has already survived since first diagnosis.
(1)Figure 2 shows two curves based on data taken from the British Columbia paper on survival of DLBCL patients. The red curve is for all patients in the study, and the blue curve is for patients that meet a certain criteria – patients whose cancer was found in its early stages. Fortunately I happen to be in the better group. The way to read this plot is look up how long you have survived since diagnosis on the horizontal axis, draw a vertical line up to the curve, then at the intersection draw a horizontal line to the vertical axis and read off the probability of surviving to 5 years. I’ve drawn lines for myself at 2.5 years and you can see I now have about a 96% chance of surviving 5 years. However, notice at 3 years, my probability is 100%. I’m almost there! I’m almost to the point of being cured. Now I fully understand when my doctor says, “It couldn’t be better”.
You have to be a little careful using these charts. For example, the fact that the blue curve in Figure 2 is at 100% after 3 years does not mean the TRUE probability of survival is 100%. It just means that after 3 years, the remaining survivors of the original 365 patients in that particular study didn’t die after 3 years. Science tells us that if we included many more patients in the study, say 10,000 patients or 100,000 patients, we would find that the blue curve will never go to exactly 100%. There is always some risk of the disease coming back. However, when the probability of surviving gets up to somewhere near 99%, one is doing very well, especially when you consider that about 1-in-4 males and 1-in-5 females will eventually die from some type of cancer.(3)
I’m excited about this. I find much more comfort in knowing quantitatively that my survival chances are so good and that nearly all the risk is gone after three years, not 5 years. My three year PET scan will be in March 2011, just before my 52nd birthday. There’s no 100% guarantee I’ll have a clean PET scan, but there are good reasons, scientific reasons, to be very hopeful. Whatever happens in the future, there is one absolute guarantee, I will thoroughly enjoy life to it its fullest.
Appendix
The following are some simple mathematics with statistics. The probability in percent P0(t) of surviving t years after diagnosis is defined as
(2)where N(t) is the number of survivors at time t, and Np is the total number of patients at diagnosis in the study. What we want to know is the probability of surviving 5 years based on the number of years already survived (P5(t)) after diagnosis. P5(t) is defined as
(3)where N5 is the number of survivors at 5 years and N(t) is the number of survivors at time t. So the probability of surviving 5 years after already surviving t years is the number of patients that have survived 5 years divided by the number of patients that have survived t years. Multiplying by 100 puts the probability in terms of percent. By combining Equations 2 and 3 and doing a little algebra we find that P5(t) can be expressed in terms of two probabilities,
(4)which can be read directly off the published graphs and we do not need to know the actual number of patients in the study.
To accurately obtain values from published graphs, I use a trick that involves Microsoft PowerPoint software. I use the Print Screen keyboard key to copy an image of the graph into the Windows clipboard; then I paste the image into PowerPoint. I create a PowerPoint circle object and place the center of the circle over a point on the graph that I want to record location values. Within the Format AutoShape tool I click on the Position tab and read the horizontal and vertical position of the little circle. These are coordinate values from the PowerPoint coordinate system. I enter the coordinate values into an Excel spreadsheet and repeat the process until I have enough points that accurately represent the curve on the graph. The points from the PowerPoint grid coordinate system must be converted into the graph coordinate system. To make the transformation I record a couple of points from each of the graph axes into the Excel spreadsheet where the transformation from one coordinate system to the other can be made with the appropriate equation. Once I have the curve values into Excel I can then apply my equations to manipulate the data and create my own plots.
References
(1) www.mayoclinic.com/health/cancer/CA00049
(2) Laurie H. Sehn, et. al. ,”The revised International Prognostic Index (R-IPI) is a better predictor of outcome than the standard IPI for patients with diffuse large B-cell lymphoma treated with R-CHOP”, www.bloodjournal.org, October 5, 2010.
(3) www.cancer.org/Cancer/CancerBasics/lifetime-probability-of-developing-or-dying-from-cancer
Monday, November 16, 2009
Friday the 13th, In Your Face!
Friday the 13th my wife and I were escorted by a nurse to exam room #13. “Is the universe trying to tell me something”, I thought. It’s Friday the 13th and I am in room #13 about to here from my oncologist about my recent PET scan results. The nurse did ask if I wanted to change rooms, but I figured if there was such a thing as fate, it was already sealed for that day and changing rooms wouldn’t suddenly change the outcome of my visit. Honestly, I don’t believe in superstition and fate. Well, in your face Friday the 13th, my PET scan came back perfect – absolutely no cancer. Of course, my great results were not just random luck, I had a little influence.
So far two of my PET scans came back positive for cancer activity, but later proved out to be just inflammation of scar tissue where I had surgery. It’s not a good day when your oncologist says, “Your scan has shown in uptake, it is probably nothing, but it does indicate that the cancer is coming back and we need to watch it very closely and have you come back in a few weeks for another scan”. I reason, for good reasons, my active lifestyle with long distance running is causing my hernia surgery site to be inflamed and not to worry about it, but it still can rest heavy on the mind. So I found a way to combat it, with ice!
I figure if ice is good for reducing swelling and inflammation of sports injuries, then why not old hernia surgery sites. So about 3 days before my PET scan I start applying an ice pack to my groin each night, and oh that’s cold. That doesn’t sound like much fun does it? It beats the alternative, going through weeks of anxiety until another PET scan shows that the cancer is not coming back. Every time I have used ice packs before a scan my scan results have come back negative. Earlier this year I got lazy one time and didn’t use ice packs and sure enough, the PET scan came back positive. Now I’ll do anything to make sure I use the ice treatment.
This last week I got lazy again, waiting to the last night before my scan before using ice packs. That night I went to my parents, which is about an hour drive from my home, to visit and help out with a few things. I didn’t want to stay up late at night, so I employed my technique on my drive back home. It was good I wasn’t pulled over by the police. It would have been uneasy trying to explain why a bag of ice was stuff down my pants.
It’s amazing that we spend a lot of effort dodging superstitions, yet many times we’ll do little or nothing of the things that really have control in the outcome of our lives.
So far two of my PET scans came back positive for cancer activity, but later proved out to be just inflammation of scar tissue where I had surgery. It’s not a good day when your oncologist says, “Your scan has shown in uptake, it is probably nothing, but it does indicate that the cancer is coming back and we need to watch it very closely and have you come back in a few weeks for another scan”. I reason, for good reasons, my active lifestyle with long distance running is causing my hernia surgery site to be inflamed and not to worry about it, but it still can rest heavy on the mind. So I found a way to combat it, with ice!
I figure if ice is good for reducing swelling and inflammation of sports injuries, then why not old hernia surgery sites. So about 3 days before my PET scan I start applying an ice pack to my groin each night, and oh that’s cold. That doesn’t sound like much fun does it? It beats the alternative, going through weeks of anxiety until another PET scan shows that the cancer is not coming back. Every time I have used ice packs before a scan my scan results have come back negative. Earlier this year I got lazy one time and didn’t use ice packs and sure enough, the PET scan came back positive. Now I’ll do anything to make sure I use the ice treatment.
This last week I got lazy again, waiting to the last night before my scan before using ice packs. That night I went to my parents, which is about an hour drive from my home, to visit and help out with a few things. I didn’t want to stay up late at night, so I employed my technique on my drive back home. It was good I wasn’t pulled over by the police. It would have been uneasy trying to explain why a bag of ice was stuff down my pants.
It’s amazing that we spend a lot of effort dodging superstitions, yet many times we’ll do little or nothing of the things that really have control in the outcome of our lives.
Monday, July 20, 2009
$$$ I’ve won the Lottery $$$
I feel like I have won lottery. My PET scan came back squeaky clean and my blood counts are normal. I’m back on my normal schedule of four months between PET scans. The next PET scan will be just two months shy of my second anniversary of starting chemo. After two years my odds of making it five years and beyond are pretty good and the PET scans will be done less frequently. As more time goes on with good PET scans, the more likely it looks like I am cured of cancer.
After my last post I did start to have weird feelings again. The strange feeling is hard to describe, but I feel kind of a tingling in my skin and at the tip of my tongue. I’ll get slight headaches and will feel some nervousness or a little jittery. Sometimes the strange feeling keeps my up at night. I was pretty confident that it wasn’t the cancer coming back, but I was still very anxious to see my doctor. I told him all about it including going cold turkey with caffeine. He said the strange feelings are most likely caffeine withdrawals. Furthermore, since I have undergone one of the strongest chemotherapy treatments that are administered, my body may have more difficulty handling things like caffeine withdrawals. My doctor also said that it can actually take four to six weeks to be completely free of caffeine. He ordered some additional blood tests just to be sure something else isn’t causing the strange feelings. Most of those tests have come back negative and next week I get the remaining results.
I also have a constant tingling in my toes and sometimes my fingers. The tingling in the toes started when I was taking chemo and has never stop since then. Sometimes it gets pretty intense and can be annoying. The tingling, called peripheral neuropathy, is from nerve damage cause by one the chemo drugs called Vincristine or Oncovin (the O in RCHOP). The nerve damage can take up to three years to repair, and in some cases is permanent. I can live with this; it is better than the alternative. One thing is for sure, the tingling does not get in the way of my happiness.
Some things are beyond our control and we have to live with it. But so much in our lives are within our control, like caffeine, eating well, exercising and taking the time for those things that truly give us happiness. Life is the most precious thing we have, nothing else compares to it, yet it is amazing how we so easily waste it and throw it away.
After my last post I did start to have weird feelings again. The strange feeling is hard to describe, but I feel kind of a tingling in my skin and at the tip of my tongue. I’ll get slight headaches and will feel some nervousness or a little jittery. Sometimes the strange feeling keeps my up at night. I was pretty confident that it wasn’t the cancer coming back, but I was still very anxious to see my doctor. I told him all about it including going cold turkey with caffeine. He said the strange feelings are most likely caffeine withdrawals. Furthermore, since I have undergone one of the strongest chemotherapy treatments that are administered, my body may have more difficulty handling things like caffeine withdrawals. My doctor also said that it can actually take four to six weeks to be completely free of caffeine. He ordered some additional blood tests just to be sure something else isn’t causing the strange feelings. Most of those tests have come back negative and next week I get the remaining results.
I also have a constant tingling in my toes and sometimes my fingers. The tingling in the toes started when I was taking chemo and has never stop since then. Sometimes it gets pretty intense and can be annoying. The tingling, called peripheral neuropathy, is from nerve damage cause by one the chemo drugs called Vincristine or Oncovin (the O in RCHOP). The nerve damage can take up to three years to repair, and in some cases is permanent. I can live with this; it is better than the alternative. One thing is for sure, the tingling does not get in the way of my happiness.
Some things are beyond our control and we have to live with it. But so much in our lives are within our control, like caffeine, eating well, exercising and taking the time for those things that truly give us happiness. Life is the most precious thing we have, nothing else compares to it, yet it is amazing how we so easily waste it and throw it away.
Thursday, February 12, 2009
PET Scans, Diets, and Mountain Training
Well I have some fabulous, fantastic, super, wonderful, amazing, awesome, tremendous, astounding, splendid, breathtaking, great, extraordinary, remarkable, magnificent, huge, enormous, very big, terrific, superb, marvelous, brilliant, spectacular, astonishing, good news. My PET scan came back squeaky clean again. My Oncologist is very impressed. In the past when asked about how he felt about his pathologist’s diagnosis (a curable type of lymphoma,) and Mayo’s diagnosis (an incurable type), he refused to give any speculation and just concluded it was a difference in opinion and there’s not much we can do about it. But now he is thinking a little differently. He still talks with great care. He is a well seasoned oncologist and knows how to talk to the patients without scientific backgrounds. I’m working on him to communicate in my language - science, math and probabilities. These are not the exact words he said, but rather my interpretation.
Being a seasoned oncologist, he has seen many cases of both types of lymphoma: diffused large B-cell (DLBC) and follicular. He has seen how patients of each type respond to chemo and that, on the average, there is big difference in response characteristics. I speculate that many more DLBC patients have rapid and complete responses than follicular patients. It may be rare that follicular patients have a complete remission that lasts any period of time. Therefore, since my response has gone so well and so complete, the probability that I have follicular lymphoma (incurable type) is low and it is much more probable that I have DLBC. We will never know for sure, but the more time I stay in complete remission, the more probable I have been cured.
Getting through the first year in complete remission is a huge milestone. At the one year milestone my odds of surviving and being cured are much greater than 50/50 odds I got just before starting chemo. (I intend to calculate those odds based scientific papers I found on the internet, but I’ve been too busy enjoying life). The first year milestone is the biggest for burning down risk, but the second year is a big one too. However, it doesn’t matter what happens here on out. I’m very gratified with the extension of life I’ve received thus far. From here on out, it’s icing on the cake.
Even though my diet and my training have not gone exactly to plan, my weight loss has. During the work week I do a pretty good job of staying under 2000 calories a day. But I haven’t been able to count my calories close enough to record them. It’s easy to measure food when I’m home, but whenever we dine out or eat at someone else’s house or when I’m on a business trip, I just have to estimate how many calories I eat. And I don’t always count them either. I have been traveling to Phoenix on business trips for the last couple of weeks, but that is a good thing when it comes to my diet. For business travel I don’t dine out but rather get a hotel suite that has a kitchen and cook my own food. Since I buy all my groceries, I don’t get the tempting treats that my wife gets for our sons. So I actually eat much healthier when I travel on business. I haven’t given up on calorie counting; it is still the basis for my weight loss plan. I’ll still do it when I can and when trying new meals. Many of my meals I already know how much to take to stay within my calorie limits.
Keeping track of my weight every day has also been a learning experience. I’ve noticed that my weight has a big cycle that repeats itself over a one week period. Every weekend my weight goes up 2 or 3 pounds, and then drops during the week.
I think the weekend weight gain is mostly water weight. I speculate that on the weekends I tend to eat foods that are much higher in sodium, which can make the body retain water. So monitoring your weight on a daily basis can drive you crazy if you’re not careful with interpreting the data. The first plot of my weight shows my daily weight over four weeks. The first week I was not on my diet. During the fourth week I was in Phoenix so there is some missing data. You can see my weight being all over the map, but there does appear to be a downward trend too.
Being a seasoned oncologist, he has seen many cases of both types of lymphoma: diffused large B-cell (DLBC) and follicular. He has seen how patients of each type respond to chemo and that, on the average, there is big difference in response characteristics. I speculate that many more DLBC patients have rapid and complete responses than follicular patients. It may be rare that follicular patients have a complete remission that lasts any period of time. Therefore, since my response has gone so well and so complete, the probability that I have follicular lymphoma (incurable type) is low and it is much more probable that I have DLBC. We will never know for sure, but the more time I stay in complete remission, the more probable I have been cured.
Getting through the first year in complete remission is a huge milestone. At the one year milestone my odds of surviving and being cured are much greater than 50/50 odds I got just before starting chemo. (I intend to calculate those odds based scientific papers I found on the internet, but I’ve been too busy enjoying life). The first year milestone is the biggest for burning down risk, but the second year is a big one too. However, it doesn’t matter what happens here on out. I’m very gratified with the extension of life I’ve received thus far. From here on out, it’s icing on the cake.
Even though my diet and my training have not gone exactly to plan, my weight loss has. During the work week I do a pretty good job of staying under 2000 calories a day. But I haven’t been able to count my calories close enough to record them. It’s easy to measure food when I’m home, but whenever we dine out or eat at someone else’s house or when I’m on a business trip, I just have to estimate how many calories I eat. And I don’t always count them either. I have been traveling to Phoenix on business trips for the last couple of weeks, but that is a good thing when it comes to my diet. For business travel I don’t dine out but rather get a hotel suite that has a kitchen and cook my own food. Since I buy all my groceries, I don’t get the tempting treats that my wife gets for our sons. So I actually eat much healthier when I travel on business. I haven’t given up on calorie counting; it is still the basis for my weight loss plan. I’ll still do it when I can and when trying new meals. Many of my meals I already know how much to take to stay within my calorie limits.
Keeping track of my weight every day has also been a learning experience. I’ve noticed that my weight has a big cycle that repeats itself over a one week period. Every weekend my weight goes up 2 or 3 pounds, and then drops during the week.
I think the weekend weight gain is mostly water weight. I speculate that on the weekends I tend to eat foods that are much higher in sodium, which can make the body retain water. So monitoring your weight on a daily basis can drive you crazy if you’re not careful with interpreting the data. The first plot of my weight shows my daily weight over four weeks. The first week I was not on my diet. During the fourth week I was in Phoenix so there is some missing data. You can see my weight being all over the map, but there does appear to be a downward trend too. A better way to look at weight is by averaging the daily weight over a one week period. This takes out the weekly cycle and reduces random variations. As you can see in the second plot the data points fall much closer to the fit line, which shows that I’m losing on the average 1.2 pounds a week (rounded up), slightly better than my goal. 
The fit equation shows a good R^2 factor of 0.98 (rounded up) which means the data follows the fit line to a very high degree. Isn’t science amazing?
My running training has gone very well too, but not always as planned. Over the prior two weeks I have run two half-marathon (13.1 miles) runs. The first one I didn’t have a great finish time of 2:02, a long ways from my goal of 1:39. However, I was running mostly on my local trail which had fresh loose snow on top of ice. The slipperiness robbed energy from every step I took. I was exhausted and beat up near the end of the run and hoping it was due to the slippery conditions. The following week the loose snow had melted and I was mostly running on hard pack snow, in which my trail running shoes get pretty good traction. My finish time was 1:54 and I felt great at the end of the run. My guess is that my time will improve even more just from better traction after the snow and ice disappears this spring.
My weight loss plan included running at least 30 miles a week to burn roughly 3500 calories or more per week. Well that hasn’t worked out to plan either. The biggest deviation comes with business travel to Phoenix. Not because I don’t run, but because I do a different type of run while in the desert. My favorite kind of running is trail running, and my favorite trail running is in the desert, and my favorite desert trail running is up and down a mountain trail. I have read that some marathon coaches feel that hill training can also improve speed or finish times. Well, mountain training must be the best then, right? One of my favorite mountains to run up and down is Shaw Butte in the North Mountain Park of Phoenix. Going up the mountain I try to run as much as I can, but need to take walking breaks at the steepest part. There’s something about running up a mountain that is motivating and makes it easy to push harder than usual.
My favorite part though is running down the backside of Shaw Butte, which is very steep and rocky in places. It’s a type of meditation for me. Any mistake could lead to a serious injury, so one must keep constant and absolute focus on each step. This kind of focus really clears the mind of the daily garbage.
When I mountain trail run my running distances (about 4 miles) are less than the typical 6 miles I run on flat land. So it may seem that I’m burning fewer calories if going just by distance. However, based on time and heart rate, I think I’m burning more calories. There are websites that calculate how much calories you burn for just about any activity, including mountain climbing and mountain biking, but I haven’t seen anything on mountain running.
The fit equation shows a good R^2 factor of 0.98 (rounded up) which means the data follows the fit line to a very high degree. Isn’t science amazing?My running training has gone very well too, but not always as planned. Over the prior two weeks I have run two half-marathon (13.1 miles) runs. The first one I didn’t have a great finish time of 2:02, a long ways from my goal of 1:39. However, I was running mostly on my local trail which had fresh loose snow on top of ice. The slipperiness robbed energy from every step I took. I was exhausted and beat up near the end of the run and hoping it was due to the slippery conditions. The following week the loose snow had melted and I was mostly running on hard pack snow, in which my trail running shoes get pretty good traction. My finish time was 1:54 and I felt great at the end of the run. My guess is that my time will improve even more just from better traction after the snow and ice disappears this spring.
My weight loss plan included running at least 30 miles a week to burn roughly 3500 calories or more per week. Well that hasn’t worked out to plan either. The biggest deviation comes with business travel to Phoenix. Not because I don’t run, but because I do a different type of run while in the desert. My favorite kind of running is trail running, and my favorite trail running is in the desert, and my favorite desert trail running is up and down a mountain trail. I have read that some marathon coaches feel that hill training can also improve speed or finish times. Well, mountain training must be the best then, right? One of my favorite mountains to run up and down is Shaw Butte in the North Mountain Park of Phoenix. Going up the mountain I try to run as much as I can, but need to take walking breaks at the steepest part. There’s something about running up a mountain that is motivating and makes it easy to push harder than usual.
My favorite part though is running down the backside of Shaw Butte, which is very steep and rocky in places. It’s a type of meditation for me. Any mistake could lead to a serious injury, so one must keep constant and absolute focus on each step. This kind of focus really clears the mind of the daily garbage.
When I mountain trail run my running distances (about 4 miles) are less than the typical 6 miles I run on flat land. So it may seem that I’m burning fewer calories if going just by distance. However, based on time and heart rate, I think I’m burning more calories. There are websites that calculate how much calories you burn for just about any activity, including mountain climbing and mountain biking, but I haven’t seen anything on mountain running.
So my diet and running training have not gone exactly how I planned. I actually thought of giving up on my diet method. I’m kind of a perfectionist and have trouble finishing things that don’t go to plan. But this time I listened to the words of Winston Churchill, “never, never, never give up”, and decided to stick to my plan but adapt. I can’t stick to 2000 calories every day because many days I just don’t know how much I’ve eaten. But I keep working on learning how many calories on in each meal. I think it’s important to know what you eat. But that just doesn’t happen overnight. It’s like training for a marathon. You certainly don’t start out perfect; it takes a long time to get into a good routine. You’ll always have some bad days, some that you have control over and some that were self inflected. I think one of the key things to succeeding in anything is to realize that nothing including you is perfect and that perfection is not required to move forward. As long as you never, never, never give up, one step back and two steps forward will get you to your destination every time.
Sunday, August 3, 2008
Chemo-Man Runs Again
I’ve taken some time off from my blog and I’m now ready to get back to it. This spring when my oncologist informed me I was cancer free I was eager to get my life back to normal, and I thought that partially meant to put the whole Chemo-Man and blogging thing behind me. However I have come to realize that is impossible and would be a bad move.
I am haunted by the fear of a reoccurrence of cancer every time I have a PET scan and go over the results with my doctor. My last PET scan in July showed an increase in metabolic activity in the lymph nodes in my groin. I’ve learned that this happens frequently and most of the time turns out to be a false alarm. The PET scan cannot tell the difference between cancer and inflamed tissue. It’s common among runners to have inflamed groin lymph nodes and I had just run a marathon one and a half weeks before my PET scan. I have another PET scan scheduled in August to see if anything has changed. If that PET scan shows more positive results, then I’ll have a biopsy. It may go that far just to find out it’s nothing. Based on what I have been told, these false alarms could happen again and again over the next few years while I’m being monitored very closely. So I still have in front of me a tremendous challenge of fighting the physiological haunting of my cancer.
If I let myself dwell in fear and grief, then cancer will have won. I will not give in. I will not let cancer take precious time away from me and my family. However, I can’t walk away from it, I need to take it head on and fight it. Chemo-man is about being positive and pursuing dreams despite the challenges. Writing my blog makes me feel good. It’s like being in a support group. It’s also a way for me to pay it forward. During my despair just after being diagnosed I stumbled across stories of people battling cancer with running and positive attitude. They showed me that I didn’t have to give up my life and my dreams during or after chemo therapy. My hope is my blog will do the same. If I can help just one person it will be all worth it.
There may be a time when Chemo-Man retires, but for now I have still a lot to say. My journey continues on in a new direction. I don’t know exactly where, but that’s a wonderful thing about life, it’s full of mystery.
I am haunted by the fear of a reoccurrence of cancer every time I have a PET scan and go over the results with my doctor. My last PET scan in July showed an increase in metabolic activity in the lymph nodes in my groin. I’ve learned that this happens frequently and most of the time turns out to be a false alarm. The PET scan cannot tell the difference between cancer and inflamed tissue. It’s common among runners to have inflamed groin lymph nodes and I had just run a marathon one and a half weeks before my PET scan. I have another PET scan scheduled in August to see if anything has changed. If that PET scan shows more positive results, then I’ll have a biopsy. It may go that far just to find out it’s nothing. Based on what I have been told, these false alarms could happen again and again over the next few years while I’m being monitored very closely. So I still have in front of me a tremendous challenge of fighting the physiological haunting of my cancer.
If I let myself dwell in fear and grief, then cancer will have won. I will not give in. I will not let cancer take precious time away from me and my family. However, I can’t walk away from it, I need to take it head on and fight it. Chemo-man is about being positive and pursuing dreams despite the challenges. Writing my blog makes me feel good. It’s like being in a support group. It’s also a way for me to pay it forward. During my despair just after being diagnosed I stumbled across stories of people battling cancer with running and positive attitude. They showed me that I didn’t have to give up my life and my dreams during or after chemo therapy. My hope is my blog will do the same. If I can help just one person it will be all worth it.
There may be a time when Chemo-Man retires, but for now I have still a lot to say. My journey continues on in a new direction. I don’t know exactly where, but that’s a wonderful thing about life, it’s full of mystery.
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