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.

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.

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.

My Darkest Days; My Brightest Shine

I recently had my one year anniversary of the infamous day I got that call from my doctor – you have cancer. I was laid up in bed recovering from a hernia surgery and my wife was out all day doing errands and picking my boys from school events. I was waiting for my surgeon to call my about the results of a lymph node biopsy, but I was expecting the news to be something like, it’s nothing, just a virus or an infection, or irritation from the hernia. I was not expecting, “you have an aggressive form of cancer”. The good news my doctor said was, “it’s curable in up to about 50% of the cases”. Okay, I’m typically the-glass-is-half-full kind of guy, for when it comes to my life, I like the glass at least 99.999% full if not overflowing. A 50% cure rate just didn’t seem like good news at first, and I didn’t like the “up to” part neither. What’s with that “up to”?

Just after my surgeon called I started to Google my disease. My surgeon warned me that I would find some really scary stuff on the internet and I did. I learned what “up to” meant. The 50% cure rate doesn’t apply to all of those who have diffused large b-cell lymphoma, only those who are in stage I, where the cancer is caught early and has not spread beyond the lymph nodes and not all lymph nodes are affected. Depending on the stage of the cancer, the water in the glass can get pretty low. The news hit me like a sledge hammer; I was knocked dizzy and there was a whirlwind thoughts going through my mind. I had to pull it together before my wife got home.

When my wife arrived I nailed her with the news before she even got her coat off in the entryway. My poor wife, she was blindsided by a Mack truck. I kept the news positive though, focusing on the 50% cure rate and I think I left out the “up to” until later. That night I don’t remember any grieving, we were mostly numb.

Because the cancer was very aggressive I was placed on the fast track for testing to see the extent of the cancer and determine the best course of treatment. The next day I got a CT scan and that showed a big tumor in my gut and a small one in my armpit, but the rest of my organs looked pretty good. The following week would be a PET scan and a bone marrow biopsy, all showing that the cancer was only in my lymph nodes on only one side of my body. So we were relieved to find it was only stage I. One way to look at a 50% cure rate is take a six shooter pistol, load half the barrels with bullets, then over the course of a couple of years you need to place the pistol to your head and pull the trigger. And that’s better because if you’re unlucky at least you go quickly without pain. That is a really dark way to think about it and even with the positive attitude I normally have, those kinds of thoughts were flooding my mind for the first few weeks after I got the call.

Even though I was devastated by the news, I had to take care of my family. The day after I got my diagnoses I started to seriously plan for my death. Not that I was giving up. I had every intention of fighting the cancer and wining. But with a 50% chance one has to be pragmatic about things. I needed to know that my family would be ok if the dice don’t go my way. So I checked into my life insurance policies and added up our debt to find that my family would be ok. I thought about who would be a father figure for my boys and how this would affect my daughter who has two kids of her own and would my wife find someone else that would make her happy. That was a tough day with lots of tears.

It was just before Christmas that all this happened and there was many family gatherings planned for the season. You would think that this would be a good time to gather with family, but it was really a hard time. My wife and I were exhausted by the anxiety of dealing with all the tests, hospital visits and the grim prospects of the future. Together we did our share of grieving, so when it was time to be with other family members and friends my wife and I were all grieved out. We just wanted to put all the cancer stuff on the back burner and have a good time, but there was always someone who wanted to leave the fun and joy behind and turn the party into a bereavement session. They have good intentions, it’s just their results really suck. Fortunately I was prepared and had my shields up (my big impenetrable smile) and remained mostly positive during the holiday gatherings, but my poor wife was nearly crushed, once again blindsided by a Mac truck.

About three weeks after my hernia surgery I was able to start running. Since it was cold outside and my wife believes in the wife’s tale of being out in the cold will cause one to get sick, I was relegated to run on our treadmill. Nevertheless I was just happy to run. It was one of the best medicines for my mental health. I felt the strongest when I was running, and the harder I ran the stronger I felt. My wife knows I have a tendency to go overboard with things and she feared I would go too far with my running. But when I first started running again after my surgery I was more focused on my own needs and forgot that some compromise is required to consider my wife’s needs. One morning I was running on the treadmill and my wife was upstairs. It may have been the day just after a chemo treatment. When I completed my run I went upstairs to find my wife hunched over with her body shaking in sobs. That day I fully realized there were two people fighting my cancer. We had different needs and some compromise was required. I promised I would rest the first day after chemo and wouldn’t run until the second day, which was also a compromise on my wife’s part. If she had her way I wouldn’t run for a few days after chemo.

Just before I got cancer I would spend some time thinking about the future. My wife and I have plans for traveling around the USA on our Harley’s. All of sudden, it was difficult to think about anything other than making it through the day and completing chemo. There were times when thoughts of the future entered my mind, only to be blown away with thoughts of, “why bother, I may not be around in the future anyways”.

One night my wife and I were lying in bed snuggled to each other and she said while breaking into sobbing tears how scared she was. At that instant all my pent-up anguish escaped and I too burst into sobbing tears. My wife and I were holding each other while our bodies shook uncontrollably with each sob. That was a turning point for us; we hit rock bottom. From that night forward we continued to get emotionally stronger and more positive about life.

A couple of months after my diagnosis I was visiting with my father. I think we were out for a walk at his place out in the country. I basically told him that I was ready to die, but not in those words. I told him that I was happy with what life has given me and I had no regrets, that I felt fortunate even if the cancer takes me soon. I had no feelings of resentment. It wasn’t that I was giving up my fight against cancer, no way! I plan to fight to the bitter end anything that threatens to take my life. I just finally realized that I was not invincible and there was no good reason to worry about the things we cannot control.

These were the darkest days of my life. But from the darkness came my brightest shine. The love between my wife and I got much deeper and stronger. My oldest Brother and I were drifting apart with busy lives. In the past we have done many adventures together, but as time wore on we were hardly talking to each other. Now we meet often at a coffee shop to discuss plans of our next adventure like the one we did last summer in the Minnesota Boundary Waters Canoe Area. I don’t need big things in my life for enjoyment. Just walking out to my mailbox, hearing the birds, seeing the trees and feeling a cool breeze across my face makes my day. I’ve tended to be a recluse, but now being with people has become very important. Rather than running with a headset listening to music and withdrawn from passersby I now run without music and greet everyone I can.

Shortly after being diagnosed I started to think about running Grandma’s marathon. I created this blog at first to publicly announce my intentions in order to provide some motivation to go though with it. And I admit that I like public attention and like to brag every now and then. I saw this cancer thing and running Grandma’s marathon as Chemo-Man as an opportunity to get some fame and bragging rights. But quickly I realized that this could be an opportunity to do something good, to turn the cancer thing into something positive and constructive and help others who may be going through something similar. The fame really didn’t come, I guess running a marathon in a tutu is a better way to get on the nightly news and in the paper, but I got something much better. Being able to make a positive difference in the lives of others, even though it’s just a few, is worth all the effort.

We all have dark days in our lives. Some people have much darker days than others; I can think of much worse things than getting cancer. The biggest difference though is how one reacts. There are basically two ways people approach dark days. Some cower into a corner and wallow in their grief, blame others for their problems and only see darkness. But some look into the dark and see light. They refuse to accept defeat, take responsibility for their life, and make something good happen.

If I was given a chance to do it all over again, I would never decide to have cancer. I think I would have done just fine without it. Life would have thrown me plenty of opportunities to grow. Furthermore, I am far from being out of the woods. Statistically, there is about a 20% chance I won’t be around four years from now. I don’t need that. However, this is what life has giving me and I plan to turn it into something good. What kind of person are you when the days turn dark? Do you only drop to your knees and let darkness swallow you up, or do you stand up and try to shine? The wonderful thing is that you have a choice.