I haven't seen a doctor in a few weeks, it seems. My last chemo ended on 1/30. I briefly saw my oncologist a few days later, when I was still dealing with some bad nausea. But, I've been mostly free from doctors for a while now, and I'm back to living my life the way I would normally be doing. Regretfully, that will end in less than 2 weeks, but I'll take it for now.
This past weekend, I taught skiing all day, both days. It was the first time this season that I had students for the entire weekend. In both cases, I took a group where an instructor was out for the day, and in both cases, the kids needed a lot of instruction. This was the 11th weekend of the season for the program where I teach, and I felt like I was teaching things kids should have done in the first couple weeks. I wish a higher demand existed to work in the program where I work, so we could be more selective about who we bring on as a coach.
Of course, if it had always been that way, I would never have gotten my job in this program 15 years ago. As I work with groups who haven't had enough quality instruction, I try to remember that I was probably a pretty poor instructor my first few years. If we educate these younger instructors, I'm sure some of them will turn out to be good at the job, if they stick around long enough. Too many of our coaches are around for 1 or 2 or 3 years, and then, just as they are getting good, they are gone. We have a core of about 5-7 instructors (out of 50 or so) who have been doing this for 15 years or more, and we seem to be building a secondary core of good instructors. But, at the fringes, we still have first year coaches who simply cannot look at a skier, see a fundamental flaw, and then figure out how to improver that skier's skills. I guess this is just the case in all professions. You need to learn on the job quite often, and the first few years can be a tough learning process.
One of the things that I've learned about ski instruction over the years is that the more experienced I become, the more I realize just how much I don't know. In the beginning, you have no idea how much you don't know.
My calf muscles were a bit sore from skiing all weekend, and I was curious how that would translate into squats on Monday. But, we did low reps and I got up to 205 pounds on my last rep. I think that's the heaviest back squat I've done since my surgery in September, and maybe since last spring. I know I did a 305# front squat last March, but it was April when everything started to go downhill for me. I'm far, far away from my 375# personal record. After the back squats and 4x4 of front squats, we did a workout with deadlifts, burpees and air squats. I knew the burpees would really slow me down (I have to be careful not to hit the deck with my chemo port, which would hurt a lot), but I was consistent through the work.
The next day, we started with Olympic lifts - halting power snatches and halting power cleans with a push jerk - 20x1 for each, with a rep every 30 seconds. I used lighter weights for the halting versions of these lifts than I did the week before for the hang version of these lifts, and the week before, when we pulled continuously from the floor. But, it was still a good workout. From there, we did ring rows (pull-ups for the stronger types), kettlebell high pulls and rope jumping for 10 minutes. My biceps are sore today.
Last night, we got out for dinner with our son and some skiing friends - a belated birthday dinner for two of us. We went to a classic French restaurant at Sugarbush, and as always, had a great time. My daughter had to miss dinner because of a basketball playoff game. She ate at Applebee's with the basketball team instead. Her loss, in my opinion.
My wife and I are going to spend the weekend with college friends, so there won't be any skiing or training, I'm guessing. So, we are going to try to do 5 consecutive days of CrossFit, if we can survive it.
Wednesday, February 24, 2016
Friday, February 19, 2016
Back to regular programming - CrossFit and Skiing
It was bitterly cold last weekend in Vermont. It barely got above 0F both days, and I saw a photo of one thermometer at Sugarbush that showed -38F. This wasn't even on the coldest part of the mountain. Mountain operations actually closed some parts of the mountain to reduce the risk of frostbite or hypothermia.
On Saturday, I worked for half of the day. Mostly, I was working with two younger instructors, trying to help them with the whole process of teaching skiing. I've been at this for a long time, and while there are many better instructors, I think I do a pretty good job of watching skiers, assessing weaknesses, and then coming up with activities to improve the student's skiing. This is something that I didn't do well at all years ago, when I first started teaching, and I'm still learning, to be honest.
But, my boss has been using me to work with less experienced instructors, to help them evaluate their students and then help those students improve. I find this work to be a lot of fun. I'm coaching the students and coaching other coaches. I'm glad that my boss trusts my abilities enough to give me this work.
On Sunday, it was colder than Saturday. I think the chemo has affected how I react to the cold, and despite a warm winter, I'm cold a lot. Even right now, sitting in my office, I'm wearing a fleece top over my shirt and a jacket over that. And a hat. My bald head won't stay warm and I often go to bed wearing a hat. It falls off overnight, but it keeps me warm until I can fall asleep at least.
So, I was hoping to not work at all in the cold conditions on Sunday. Instead, my boss suggested that I set up an indoor station where I could do some indoor training. This included a set-up to show students how to tune their own skis. We knew that groups would be coming inside frequently, and that some students would not want to go back outside. So, by offering this, we were protecting children and helping out other coaches.
It turned out that the ski tuning station was a hit, and I tuned a lot of skis, with help from the kids. I heard multiple kids excitedly telling their parents that they learned how to tune skis and that they'd tuned their own skis. So, it was a successful day and I got to stay warm. Plus, I got out of work a bit early, and my wife and I headed out of town for the evening for a nice Valentine's Day dinner and an overnight stay in a hotel.
On Monday, I was surprised to be really tired. I'd done 4 days of CrossFit the previou week, skied half a day on Sunday, and spent Sunday on my feet, but the weekend hadn't really been that tough. But, I skipped CrossFit anyway, ate an early dinner and got to bed early.
Tuesday, I was back at CF. We started with hang power snatches and hang power cleans with a push jerk. One rep every 30 seconds for 20 minutes. This was just plain hard. After that, we did thrusters, ring rows and burpees. I was just gassed during the second half of the workout - enough that one of the coaches stopped by to make sure I was OK. This particular coach, who is an elite CF athlete herself, seems to check up on me a lot these days. I appreciate the concern, but I'm just doing the best I can to regain all of the fitness I've lost in the past 10 months.
On Wednesday, we started with push presses for our strength work. And then, a combo of lifting a heavy sand-filled ball over our shoulders, sit-ups and rope jumping. I felt a lot better this day, and didn't even finish last in the workout.
Thursday is a "pick your poison" workout, where we pick four different movements (one from each of four different categories) and repeat them once every minute for 40 minutes. We do this an an ABCDABCD... fashion, rather than AAAAAAAAAABBBBBB,,,, fashion. Last night, I chose rowing, push-ups, farmer's carries and back squats as my movements.
I'll be teaching skiing again this weekend, so I have to decide if I'm up for CF tonight, or I should take a rest day. I feel OK today, but one more CF day could leave me pretty tired for the weekend. My wife and I will decide after work, I'm guessing, based on how we feel.
After this week, I have 2 more weeks to do CF, and then maybe 1 or 2 days the week of 3/7. I will be flying to NYC on the 7th of March, with medical appointments on the 8th and surgery on the 10th. If I'm lucky, I'll get one CF workout at my home gym the morning of the 7th, and then maybe one in Manhattan on the 9th. I've trained at CF Hell's Kitchen in the past, so maybe I'll go there again for one day.
On Saturday, I worked for half of the day. Mostly, I was working with two younger instructors, trying to help them with the whole process of teaching skiing. I've been at this for a long time, and while there are many better instructors, I think I do a pretty good job of watching skiers, assessing weaknesses, and then coming up with activities to improve the student's skiing. This is something that I didn't do well at all years ago, when I first started teaching, and I'm still learning, to be honest.
But, my boss has been using me to work with less experienced instructors, to help them evaluate their students and then help those students improve. I find this work to be a lot of fun. I'm coaching the students and coaching other coaches. I'm glad that my boss trusts my abilities enough to give me this work.
On Sunday, it was colder than Saturday. I think the chemo has affected how I react to the cold, and despite a warm winter, I'm cold a lot. Even right now, sitting in my office, I'm wearing a fleece top over my shirt and a jacket over that. And a hat. My bald head won't stay warm and I often go to bed wearing a hat. It falls off overnight, but it keeps me warm until I can fall asleep at least.
So, I was hoping to not work at all in the cold conditions on Sunday. Instead, my boss suggested that I set up an indoor station where I could do some indoor training. This included a set-up to show students how to tune their own skis. We knew that groups would be coming inside frequently, and that some students would not want to go back outside. So, by offering this, we were protecting children and helping out other coaches.
It turned out that the ski tuning station was a hit, and I tuned a lot of skis, with help from the kids. I heard multiple kids excitedly telling their parents that they learned how to tune skis and that they'd tuned their own skis. So, it was a successful day and I got to stay warm. Plus, I got out of work a bit early, and my wife and I headed out of town for the evening for a nice Valentine's Day dinner and an overnight stay in a hotel.
On Monday, I was surprised to be really tired. I'd done 4 days of CrossFit the previou week, skied half a day on Sunday, and spent Sunday on my feet, but the weekend hadn't really been that tough. But, I skipped CrossFit anyway, ate an early dinner and got to bed early.
Tuesday, I was back at CF. We started with hang power snatches and hang power cleans with a push jerk. One rep every 30 seconds for 20 minutes. This was just plain hard. After that, we did thrusters, ring rows and burpees. I was just gassed during the second half of the workout - enough that one of the coaches stopped by to make sure I was OK. This particular coach, who is an elite CF athlete herself, seems to check up on me a lot these days. I appreciate the concern, but I'm just doing the best I can to regain all of the fitness I've lost in the past 10 months.
On Wednesday, we started with push presses for our strength work. And then, a combo of lifting a heavy sand-filled ball over our shoulders, sit-ups and rope jumping. I felt a lot better this day, and didn't even finish last in the workout.
Thursday is a "pick your poison" workout, where we pick four different movements (one from each of four different categories) and repeat them once every minute for 40 minutes. We do this an an ABCDABCD... fashion, rather than AAAAAAAAAABBBBBB,,,, fashion. Last night, I chose rowing, push-ups, farmer's carries and back squats as my movements.
I'll be teaching skiing again this weekend, so I have to decide if I'm up for CF tonight, or I should take a rest day. I feel OK today, but one more CF day could leave me pretty tired for the weekend. My wife and I will decide after work, I'm guessing, based on how we feel.
After this week, I have 2 more weeks to do CF, and then maybe 1 or 2 days the week of 3/7. I will be flying to NYC on the 7th of March, with medical appointments on the 8th and surgery on the 10th. If I'm lucky, I'll get one CF workout at my home gym the morning of the 7th, and then maybe one in Manhattan on the 9th. I've trained at CF Hell's Kitchen in the past, so maybe I'll go there again for one day.
Tuesday, February 16, 2016
What if a cure really happens?
This is something I've been thinking about recently. I've read some other posts on the web about how difficult it can be for people who are cured of cancer to return to a "normal" life.
When I had prostate cancer, I fully expected that I could be cured. I am still monitored on a regular basis and I will be for years to come. But, my expectation was that a cure or at least a "permanent remission" was possible. It is common for providers to avoid the word "cure" for prostate cancer for at least five years.
Because liposarcoma recurs so frequently, the word cure is rarely used. Durable remission is the goal.
I remember being truly depressed in the months after my prostate surgery. From a simple blood test that was a little bit high, to a biopsy, to diagnosis, to surgery, there was a whirlwind of activity. Lots of self education. But, when it was all over, I finally had a chance to catch my breath. To start to heal mentally from what I'd just been through. I fell into a serious funk in my post-op recovery period. And 2+ years later, those scars remain.
Now, I'm dealing with something much more serious. My prostate cancer was Stage 2. This time, it's Stage 4. In some ways, it's a technicality between Stage 3 and Stage 4. The recurrence was somewhat "local" to the original tumor, which would normally be Stage 3. But, it involves two major organs - my colon and a small portion of my liver. So, the doctor has said that even though the metastases are technically local to the original tumor, she considers this to be a Stage 4 cancer. Scary shit, indeed.
I was sick all last summer, with little explanation. Then, a visit to the ER gave me a reason, and led to a major surgery. The surgery led to the diagnosis. I remember the urologist telling me that I was clear of cancer at that point in time. But, as I read the pathology report, I didn't believe him. Sure, the tumor was gone. But, with some positive margins, it was clear that some cancer cells were left behind. And, just 2 months later, a CT scan confirmed a recurrence. On the day I found out about the recurrence, we (my wife, my oncologist and me) decided on chemo followed by surgery and maybe radiation for treatment. This was on a Friday. By Tuesday, I was having more scans, having a chemo port installed, and doing lab work. The next day, chemo started.
Chemo has dominated my life for months. Now that chemo is over, my impending surgery is all I can think about. How will it go? How will my recovery go? How long will I be in the hospital? How bad will the pain be, when I already have continuous pain from my previous surgery?
On top of all of that, I'm already thinking ahead to my first post-surgical CT scan. Will the cancer come back as quickly as before? Will it be clear? If clear, how long will I be clear? What if it never comes back?
Obviously, I don't want the cancer to come back. A friend hit the 3 year mark today being cancer free. He had a less serious diagnosis than I did, and I'm really happy for him. He is as positive and happy and kind as anyone I know. He has no room in his life for negative thinking or negative people. He still has anxiety around his scans, but he's living his life and savoring every moment.
I think I'm trying to do that as well. I'm still teaching skiing and having fun with it. I'm in the gym. Cooking dinner most nights. Trying to live life the way it was before cancer. But, at the same time, I know life will never really be the same. I wonder at times if I'm doing what I would normally be doing simply as a way to forget about this for brief periods of time.
So many people have told me that I'm "inspiring" or something like that. I don't see it that way at all. I'm trying to do what I always do. I'm lucky that I can do that. But, inside, I'm still scared out of my mind. What if it comes back? What if it comes back immediately? And then, what if it doesn't come back? Will I fall back into some level of depression if I don't have the beast to fight any more?
Life will simply never be the same again, no matter how all of this goes. And that scares me, to be honest.
When I had prostate cancer, I fully expected that I could be cured. I am still monitored on a regular basis and I will be for years to come. But, my expectation was that a cure or at least a "permanent remission" was possible. It is common for providers to avoid the word "cure" for prostate cancer for at least five years.
Because liposarcoma recurs so frequently, the word cure is rarely used. Durable remission is the goal.
I remember being truly depressed in the months after my prostate surgery. From a simple blood test that was a little bit high, to a biopsy, to diagnosis, to surgery, there was a whirlwind of activity. Lots of self education. But, when it was all over, I finally had a chance to catch my breath. To start to heal mentally from what I'd just been through. I fell into a serious funk in my post-op recovery period. And 2+ years later, those scars remain.
Now, I'm dealing with something much more serious. My prostate cancer was Stage 2. This time, it's Stage 4. In some ways, it's a technicality between Stage 3 and Stage 4. The recurrence was somewhat "local" to the original tumor, which would normally be Stage 3. But, it involves two major organs - my colon and a small portion of my liver. So, the doctor has said that even though the metastases are technically local to the original tumor, she considers this to be a Stage 4 cancer. Scary shit, indeed.
I was sick all last summer, with little explanation. Then, a visit to the ER gave me a reason, and led to a major surgery. The surgery led to the diagnosis. I remember the urologist telling me that I was clear of cancer at that point in time. But, as I read the pathology report, I didn't believe him. Sure, the tumor was gone. But, with some positive margins, it was clear that some cancer cells were left behind. And, just 2 months later, a CT scan confirmed a recurrence. On the day I found out about the recurrence, we (my wife, my oncologist and me) decided on chemo followed by surgery and maybe radiation for treatment. This was on a Friday. By Tuesday, I was having more scans, having a chemo port installed, and doing lab work. The next day, chemo started.
Chemo has dominated my life for months. Now that chemo is over, my impending surgery is all I can think about. How will it go? How will my recovery go? How long will I be in the hospital? How bad will the pain be, when I already have continuous pain from my previous surgery?
On top of all of that, I'm already thinking ahead to my first post-surgical CT scan. Will the cancer come back as quickly as before? Will it be clear? If clear, how long will I be clear? What if it never comes back?
Obviously, I don't want the cancer to come back. A friend hit the 3 year mark today being cancer free. He had a less serious diagnosis than I did, and I'm really happy for him. He is as positive and happy and kind as anyone I know. He has no room in his life for negative thinking or negative people. He still has anxiety around his scans, but he's living his life and savoring every moment.
I think I'm trying to do that as well. I'm still teaching skiing and having fun with it. I'm in the gym. Cooking dinner most nights. Trying to live life the way it was before cancer. But, at the same time, I know life will never really be the same. I wonder at times if I'm doing what I would normally be doing simply as a way to forget about this for brief periods of time.
So many people have told me that I'm "inspiring" or something like that. I don't see it that way at all. I'm trying to do what I always do. I'm lucky that I can do that. But, inside, I'm still scared out of my mind. What if it comes back? What if it comes back immediately? And then, what if it doesn't come back? Will I fall back into some level of depression if I don't have the beast to fight any more?
Life will simply never be the same again, no matter how all of this goes. And that scares me, to be honest.
Wednesday, February 10, 2016
I am so amazingly sore
Being able to do 5-6 CrossFit workouts every 3 weeks is kind of tough. My brain remembers what weights I should be able to lift. My body can even handle some of the weights during the workout. But, my level of soreness the few days after I re-start is pretty amazing.
I skied Saturday and Sunday. Because I'd had a rough week right after the chemo, I only walked once the previous week. Monday was squat day, and I kept the weights pretty light. I maxed out at 165 for back squats and 125 for front squats. A year ago, those were weights I used during my warm-up, before the real workout started. We did 4 sets of each squat type, with relatively low reps - 3-8 reps per set.
After squats, our metabolic conditioning was simple - goblet squats and rope jumping. It only lasted 7 minutes.
Tuesday, we started with Olympic lifting. Twenty power snatches done as singles every 30 seconds. I started at 73 pounds for 6 reps, 83 for 6 more, and then 93 for the last 8. I actually failed on the 19th rep, but it was a technique issue rather than strength. I'm working hard on the part of the snatch before the barbell gets to the waist, and my focus there sometimes has me failing to finish the lift properly.
Next, we did 20 power cleans/push jerks every 30 seconds. I started at 93 pounds and worked to 133. I struggled with the later jerks, but it wasn't too bad. For each of these lifts, I got to within 10 pounds of the weight I hit 2 weeks ago, when we only did 10 singles. So, I was happy with this work.
Then, we were supposed to do 15-12-9 each of thrusters, ring rows, and burpees. Because I'm trying not to kill myself as I work my way back into CrossFit, I changed the rep scheme to 12-9-6. The coach had said the workout should take 5-10 minutes, and anything over 10 meant the weight was too high. I was already at the lowest weights on the board, and I knew I couldn't finish in 10 minutes, so I decreased the reps and finished in 8:25. My wife did the prescribed reps and I beat her by just a few seconds.
Today, I can barely walk because I'm so sore. It's from the squats on Monday, where I thought I took it easy. But, apparently, not easy enough.
Last winter, I had a really good run with the weights. I set new PRs on all of the Olympic lifts, and was happiest with my 195# squat clean. I hit 305# for the front squat after a previous best of 275#. And then in April, things started to change as the early signs of the cancer started to affect my training.
Even now, it's a bit frustrating, knowing that I have 4 weeks until surgery, and any gains I make now will disappear as I recover from surgery. But, if I do nothing now, things will be that much worse after surgery.
The good thing is that I can probably recycle this post a about how sore I am when I get back to the gym after surgery.
I skied Saturday and Sunday. Because I'd had a rough week right after the chemo, I only walked once the previous week. Monday was squat day, and I kept the weights pretty light. I maxed out at 165 for back squats and 125 for front squats. A year ago, those were weights I used during my warm-up, before the real workout started. We did 4 sets of each squat type, with relatively low reps - 3-8 reps per set.
After squats, our metabolic conditioning was simple - goblet squats and rope jumping. It only lasted 7 minutes.
Tuesday, we started with Olympic lifting. Twenty power snatches done as singles every 30 seconds. I started at 73 pounds for 6 reps, 83 for 6 more, and then 93 for the last 8. I actually failed on the 19th rep, but it was a technique issue rather than strength. I'm working hard on the part of the snatch before the barbell gets to the waist, and my focus there sometimes has me failing to finish the lift properly.
Next, we did 20 power cleans/push jerks every 30 seconds. I started at 93 pounds and worked to 133. I struggled with the later jerks, but it wasn't too bad. For each of these lifts, I got to within 10 pounds of the weight I hit 2 weeks ago, when we only did 10 singles. So, I was happy with this work.
Then, we were supposed to do 15-12-9 each of thrusters, ring rows, and burpees. Because I'm trying not to kill myself as I work my way back into CrossFit, I changed the rep scheme to 12-9-6. The coach had said the workout should take 5-10 minutes, and anything over 10 meant the weight was too high. I was already at the lowest weights on the board, and I knew I couldn't finish in 10 minutes, so I decreased the reps and finished in 8:25. My wife did the prescribed reps and I beat her by just a few seconds.
Today, I can barely walk because I'm so sore. It's from the squats on Monday, where I thought I took it easy. But, apparently, not easy enough.
Last winter, I had a really good run with the weights. I set new PRs on all of the Olympic lifts, and was happiest with my 195# squat clean. I hit 305# for the front squat after a previous best of 275#. And then in April, things started to change as the early signs of the cancer started to affect my training.
Even now, it's a bit frustrating, knowing that I have 4 weeks until surgery, and any gains I make now will disappear as I recover from surgery. But, if I do nothing now, things will be that much worse after surgery.
The good thing is that I can probably recycle this post a about how sore I am when I get back to the gym after surgery.
Friday, February 5, 2016
So, what is this liposarcoma stuff anyway?
I'm done with chemo. I'm 34 days away from surgery at Sloan Kettering. I have no medical appointments related to the liposarcoma until I start my pre-op appointments at Sloan Kettering on 3/8, with surgery on 3/10. I am finally feeling human again after the last round of chemo, although my taste buds are still way off, and I'm dealing with bone pain from the Neulasta injection on Monday. But, those are minor issues compared to the big picture. I thought I'd take this break to explain in more detail what I'm facing over the next weeks, months and years. Maybe this post will be useful to patients newly diagnosed with liposarcoma in the future, and for now, it will explain to my friends a bit more about my prognosis.
Sarcomas, in general, make up about 1% of all cancers. There are approximately 85 subtypes of sarcoma, and even though they are all linked together, they are many very different diseases. This quote, from a recent sarcoma conference, sums it up pretty well:
"I also think that these studies show, especially the trabectedin/eribulin studies, show very nicely that we can parse out some subtypes of sarcoma. I’d like to see that go even further because lumping leiomyosarcoma and liposarcoma in a study together is still putting breast cancer and colon cancer together in a study."
Essentially, the doctor is saying that in a clinical trial where liposarcoma and leiomyosarcoma were studied together, it was somewhat absurd, because they are radically different diseases. And, to the best of my knowledge, these two sarcomas are considered "similar" in many respects. The drug trabectedin that is mentioned above has been used in much of the world to treat both of these sarcomas and it was recently approved for both in the US. The other drug, eribulin, is a drug that has been used for breast cancer, and it showed recent promise in clinical trials for just liposarcoma. To the best of my knowledge, its recent approval for advanced liposarcoma makes it the first drug ever approved in the US where the approval listed only liposarcoma.
So, there are 85 subtypes, most are very rare, and they really are very different diseases. Liposarcoma is one of the more common sarcomas. I've read that it's the most common, and alternatively, I've read that another sarcoma is the most common. I think that somewhere around 15% of all sarcomas are liposarcomas.
But, it doesn't end there. Liposarcoma has its own subtypes and it also occurs in very different body parts, and the prognosis and treatment vary a lot based on where the cancer starts. The four most common subtypes are well-differentiated, myxoid, dedifferentiated and pleomorphic. There are then variations beyond this. There is a mixed diagnosis, where multiple cell types are found. Within myxoid, there is a subtype called "round cell variation" as well. Additionally, many dedifferentiated tumors start as well-differentiated, but over time, the cells morph, because the cancer is rarely found early. That is what happened to me. In general, well-differentiated cancer is the easiest to cure, pleomorphic is probably the worst diagnosis, and the other two are pretty bad as well.
I believe that liposarcoma occurs most frequently in the extremities - arms and legs. The tumors can be hard to detect until they are very large, and surgical excision is difficult, often resulting in the loss of lots of muscle tissue to get clean surgical margins. Amputations are not uncommon, to be sure that the tumor is fully excised. After the extremities, the most common location is the retroperitoneal space. Think "close to the the kidneys". That is where my tumor was located.
So, my final diagnosis, after my original surgery, was retroperitoneal dedifferentiated liposarcoma. I think there are a few hundred such diagnoses made in the US each year. Part of the problem with a diagnosis like this is the lack of doctors who really understand the disease. My surgery last September was done by a urologist. We didn't know exactly what the tumor was before surgery. There were some indications that it was kidney cancer, but two different doctors, including my surgeon, had their doubts, because the CT scan didn't look "right" for standard kidney cancer. But, because the tumor was so large that it was causing my right lung to collapse, it had to come out. There wasn't time to do a biopsy, get the diagnosis, and then consider the options.
If my primary care provider had tested my blood or done some imaging earlier, we might have had that option. But, he thought my tiredness was due to stress, and didn't even find that I had anemia until months after I'd reported symptoms to him. Then, I saw a hematologist to determine the cause of the anemia, but he never ordered any imaging either, despite my reports of diffuse abdominal pain. All this time, the primary tumor was getting bigger and bigger. I had no imaging until the tumor got large enough to partially collapse my lung, and then the imaging was only ordered after I went to the emergency room.
When I received my post-op pathology report, it was obvious that there were not clear surgical margins.
Liposarcoma is a cancer that tends to recur. And recur. My oncologist has told me that there are two distinct styles to treating the disease. On the east coast (think Dana Farber, Mass General, Sloan Kettering and Johns Hopkins), the standard is to treat with surgery every time the disease recurs. For well differentiated types, this can lead to a cure. Or infrequent surgeries. But, it tends to keep coming back, and eventually, due to scar tissue or the cancer moving into an area that can't be resected, surgery is no longer an option. At that point, chemo and radiation become the options, although neither work great, in general, for liposarcoma.
On the west coast, (MD Anderson, UCLA, and others I'm forgetting now), the treatment tends to be multi-modal - use everything right up front - chemo, radiation, and surgery. Well, this might be a gross generalization, but it's how it was explained to me. My oncologist spent a number of years at MD Anderson and has worked with sarcomas extensively. It is only because of her prior experience in this area that I've let her direct my treatment, rather than going directly to one of the Boston or NYC facilities for all of my treatment.
In my case, because my tumor was dedifferentiated, the oncologist thought that my risk of recurrence was very high. I've already had the primary tumor removed (in September) and I had a recurrence (or growth of cells missed in the primary surgery) by November. My oncologist said that we could try the surgical route for the three new lesions that showed up in November, but she believed there was zero chance for a cure with this option. She suggested chemo, surgery and possibly radiation as the treatment. Given her experience, and an interaction with a local surgical oncologist that I didn't particularly like, I opted for her approach.
So, my chemo is done. Surgery is coming up. The surgery will be done by one of the top liposarcoma surgeons in the US, if not the world. There might be some intra-operative radiation as well. It depends on the CT scan that will be done 2 days before surgery.
So, what happens after the surgery? What is my future going to be? Remember that there may or may not be radiation, but I'm not going to focus on that now.
Approximately 3 months after surgery, I will have a CT scan. That scan could come back as NED (No Evidence of Disease) or the cancer might have returned. As long as I'm NED, the scans will continue quarterly, probably for 2-3 years, and then drop over time to every six months and eventually, a year. The odds of a complete cure, to be honest, are pretty low. Dedifferentiated liposarcomas are sometimes cured, but the rate is low. The 5 year survival rate for my diagnosis (including some other details about tumor size, mitotic rate, etc.) is about 50-50.
It's a funny survival curve though. It has a steep early decline and then a long downward sloping tail. Many people are lucky to get 12-18 months. With the new chemo drugs, I'm guessing that this will change to something more like 18-36 months over time, but in the worst case, the disease recurs over and over again, inoperability happens, and then you buy as much time as you can with chemo. In some cases, each recurrence becomes more aggressive and organs (the lungs, liver, pancreas, etc.) are attacked, and the timeline and treatment options are grim.
My oncologist has said that a cure is possible, but I'd bet the chances are less than 10%. Her real goal is to change the nature of the disease for me. She wants to get rid of the dedifferentiated subtype, and hope that recurrences are infrequent and well-differentiated. If this occurs, it essentially slows the timeline and gets me onto the early part of the tail of that curve. Well-differentiated tumors are treated by surgery primarily, because they don't respond well to radiation or chemo. So, the real goal right now is to use the non-surgical modalities to kill any peripheral dedifferentiated cells, and then hope the future recurrences, if they happen, are well differentiated - a less aggressive cancer. If we can achieve that, the 5 year mark becomes realistic. Ten years may be possible. Maybe more.
So, I'd guess there's maybe a 10% chance for a cure. Maybe a 30%-40% chance that the doctors can change the nature of the disease and extend me past that five year mark. And, if I see frequent and early recurrences, I'll fall into the 50% that don't (or is it doesn't? Is "50%" here singular or plural?) see 5 years. In that latter case, I will have to weigh options about quantity vs. quality of life. I don't want to go through pointless treatments with a highly degraded quality of life.
But, some of the drugs that are available to me are due to previous patients, who participated in clinical trials. I don't look at clinical trials as a last gasp for me. I look at them as paying it forward - a chance to help future patients. There are many patients in the past who participated in trials that didn't help at all. Some participated in trials that did help. Someone has to be the guinea pig for these trials. Quality of life is important. But, so is advancing science. But, that chapter is for the future.
In the interim, I've got a life to live. I'll be on the treadmill at the gym tonight and I'll be out teaching skiing this weekend. After my surgery in a few weeks, I'll need some time to recover, but trout season is coming soon. And, if all goes well, I will meet my goal of 45 miles at the Ghost Train ultramarathon in October in NH.
Sarcomas, in general, make up about 1% of all cancers. There are approximately 85 subtypes of sarcoma, and even though they are all linked together, they are many very different diseases. This quote, from a recent sarcoma conference, sums it up pretty well:
"I also think that these studies show, especially the trabectedin/eribulin studies, show very nicely that we can parse out some subtypes of sarcoma. I’d like to see that go even further because lumping leiomyosarcoma and liposarcoma in a study together is still putting breast cancer and colon cancer together in a study."
Essentially, the doctor is saying that in a clinical trial where liposarcoma and leiomyosarcoma were studied together, it was somewhat absurd, because they are radically different diseases. And, to the best of my knowledge, these two sarcomas are considered "similar" in many respects. The drug trabectedin that is mentioned above has been used in much of the world to treat both of these sarcomas and it was recently approved for both in the US. The other drug, eribulin, is a drug that has been used for breast cancer, and it showed recent promise in clinical trials for just liposarcoma. To the best of my knowledge, its recent approval for advanced liposarcoma makes it the first drug ever approved in the US where the approval listed only liposarcoma.
So, there are 85 subtypes, most are very rare, and they really are very different diseases. Liposarcoma is one of the more common sarcomas. I've read that it's the most common, and alternatively, I've read that another sarcoma is the most common. I think that somewhere around 15% of all sarcomas are liposarcomas.
But, it doesn't end there. Liposarcoma has its own subtypes and it also occurs in very different body parts, and the prognosis and treatment vary a lot based on where the cancer starts. The four most common subtypes are well-differentiated, myxoid, dedifferentiated and pleomorphic. There are then variations beyond this. There is a mixed diagnosis, where multiple cell types are found. Within myxoid, there is a subtype called "round cell variation" as well. Additionally, many dedifferentiated tumors start as well-differentiated, but over time, the cells morph, because the cancer is rarely found early. That is what happened to me. In general, well-differentiated cancer is the easiest to cure, pleomorphic is probably the worst diagnosis, and the other two are pretty bad as well.
I believe that liposarcoma occurs most frequently in the extremities - arms and legs. The tumors can be hard to detect until they are very large, and surgical excision is difficult, often resulting in the loss of lots of muscle tissue to get clean surgical margins. Amputations are not uncommon, to be sure that the tumor is fully excised. After the extremities, the most common location is the retroperitoneal space. Think "close to the the kidneys". That is where my tumor was located.
So, my final diagnosis, after my original surgery, was retroperitoneal dedifferentiated liposarcoma. I think there are a few hundred such diagnoses made in the US each year. Part of the problem with a diagnosis like this is the lack of doctors who really understand the disease. My surgery last September was done by a urologist. We didn't know exactly what the tumor was before surgery. There were some indications that it was kidney cancer, but two different doctors, including my surgeon, had their doubts, because the CT scan didn't look "right" for standard kidney cancer. But, because the tumor was so large that it was causing my right lung to collapse, it had to come out. There wasn't time to do a biopsy, get the diagnosis, and then consider the options.
If my primary care provider had tested my blood or done some imaging earlier, we might have had that option. But, he thought my tiredness was due to stress, and didn't even find that I had anemia until months after I'd reported symptoms to him. Then, I saw a hematologist to determine the cause of the anemia, but he never ordered any imaging either, despite my reports of diffuse abdominal pain. All this time, the primary tumor was getting bigger and bigger. I had no imaging until the tumor got large enough to partially collapse my lung, and then the imaging was only ordered after I went to the emergency room.
When I received my post-op pathology report, it was obvious that there were not clear surgical margins.
Liposarcoma is a cancer that tends to recur. And recur. My oncologist has told me that there are two distinct styles to treating the disease. On the east coast (think Dana Farber, Mass General, Sloan Kettering and Johns Hopkins), the standard is to treat with surgery every time the disease recurs. For well differentiated types, this can lead to a cure. Or infrequent surgeries. But, it tends to keep coming back, and eventually, due to scar tissue or the cancer moving into an area that can't be resected, surgery is no longer an option. At that point, chemo and radiation become the options, although neither work great, in general, for liposarcoma.
On the west coast, (MD Anderson, UCLA, and others I'm forgetting now), the treatment tends to be multi-modal - use everything right up front - chemo, radiation, and surgery. Well, this might be a gross generalization, but it's how it was explained to me. My oncologist spent a number of years at MD Anderson and has worked with sarcomas extensively. It is only because of her prior experience in this area that I've let her direct my treatment, rather than going directly to one of the Boston or NYC facilities for all of my treatment.
In my case, because my tumor was dedifferentiated, the oncologist thought that my risk of recurrence was very high. I've already had the primary tumor removed (in September) and I had a recurrence (or growth of cells missed in the primary surgery) by November. My oncologist said that we could try the surgical route for the three new lesions that showed up in November, but she believed there was zero chance for a cure with this option. She suggested chemo, surgery and possibly radiation as the treatment. Given her experience, and an interaction with a local surgical oncologist that I didn't particularly like, I opted for her approach.
So, my chemo is done. Surgery is coming up. The surgery will be done by one of the top liposarcoma surgeons in the US, if not the world. There might be some intra-operative radiation as well. It depends on the CT scan that will be done 2 days before surgery.
So, what happens after the surgery? What is my future going to be? Remember that there may or may not be radiation, but I'm not going to focus on that now.
Approximately 3 months after surgery, I will have a CT scan. That scan could come back as NED (No Evidence of Disease) or the cancer might have returned. As long as I'm NED, the scans will continue quarterly, probably for 2-3 years, and then drop over time to every six months and eventually, a year. The odds of a complete cure, to be honest, are pretty low. Dedifferentiated liposarcomas are sometimes cured, but the rate is low. The 5 year survival rate for my diagnosis (including some other details about tumor size, mitotic rate, etc.) is about 50-50.
It's a funny survival curve though. It has a steep early decline and then a long downward sloping tail. Many people are lucky to get 12-18 months. With the new chemo drugs, I'm guessing that this will change to something more like 18-36 months over time, but in the worst case, the disease recurs over and over again, inoperability happens, and then you buy as much time as you can with chemo. In some cases, each recurrence becomes more aggressive and organs (the lungs, liver, pancreas, etc.) are attacked, and the timeline and treatment options are grim.
My oncologist has said that a cure is possible, but I'd bet the chances are less than 10%. Her real goal is to change the nature of the disease for me. She wants to get rid of the dedifferentiated subtype, and hope that recurrences are infrequent and well-differentiated. If this occurs, it essentially slows the timeline and gets me onto the early part of the tail of that curve. Well-differentiated tumors are treated by surgery primarily, because they don't respond well to radiation or chemo. So, the real goal right now is to use the non-surgical modalities to kill any peripheral dedifferentiated cells, and then hope the future recurrences, if they happen, are well differentiated - a less aggressive cancer. If we can achieve that, the 5 year mark becomes realistic. Ten years may be possible. Maybe more.
So, I'd guess there's maybe a 10% chance for a cure. Maybe a 30%-40% chance that the doctors can change the nature of the disease and extend me past that five year mark. And, if I see frequent and early recurrences, I'll fall into the 50% that don't (or is it doesn't? Is "50%" here singular or plural?) see 5 years. In that latter case, I will have to weigh options about quantity vs. quality of life. I don't want to go through pointless treatments with a highly degraded quality of life.
But, some of the drugs that are available to me are due to previous patients, who participated in clinical trials. I don't look at clinical trials as a last gasp for me. I look at them as paying it forward - a chance to help future patients. There are many patients in the past who participated in trials that didn't help at all. Some participated in trials that did help. Someone has to be the guinea pig for these trials. Quality of life is important. But, so is advancing science. But, that chapter is for the future.
In the interim, I've got a life to live. I'll be on the treadmill at the gym tonight and I'll be out teaching skiing this weekend. After my surgery in a few weeks, I'll need some time to recover, but trout season is coming soon. And, if all goes well, I will meet my goal of 45 miles at the Ghost Train ultramarathon in October in NH.
Wednesday, February 3, 2016
Round 4 kicked my ass
By the second morning of my 4th (and last planned) round of chemo, I knew something was up. Something was simply different from the previous rounds.
Maybe I even knew this earlier, when I complained that I hadn't recovered from round 3 as quickly as from round 1 or 2. But, I was more tired early on, I had more nausea early, and I just felt foggy right from the start.
One of the barometers I use during chemo, at least in terms of nausea, is coffee. If I wake up in the morning and I still want to drink coffee, I figure the nausea is under control. In the first round, I drank coffee through Friday (each round starts on a Wednesday), but by Saturday morning, I was vomiting and coffee was far from my mind.
In rounds 2 and 3, I drank coffee every day of chemo. Both times, I skipped coffee on the Sunday after chemo, but I was back to it by Monday. This time, things didn't go well at all on the coffee front. On Saturday morning, I found myself discussing nausea with the fellow, who happens to be a fellow CrossFitter. I said it was worse than any previous round. I'd been taking IV Zofran and Compazine (by pill) every 4 hours since things had started. Plus, I'd had Emend right at the start of chemo - a multi-day anti-nausea agent. The doctor suggested another round of Emend and I didn't argue.
I went home Saturday night, feeling just terrible. For the third straight night, I slept for 11+ hours. The nausea was no better on Sunday. My niece and her husband were visiting from out of town and we went to lunch at one of my favorite local restaurants. It never even occurred to me to order any food. Food that I'd eaten at this restaurant just a week before seemed disgusting to me. I did enjoy seeing my niece though, and everyone else seemed to enjoy the food.
Monday morning, coffee was still out. I went straight to the hospital in the morning, for a scheduled IV hydration session. I mentioned the nausea, but said it was manageable. After the hydration, I headed to the office. In the afternoon, I needed to take some pills. I deliberately took the most effective anti-nausea medication (zofran) one hour before the other pills. It didn't help, and shortly after taking the pills, I was vomiting. Food wasn't something I could even consider.
By Tuesday morning, I think my Saturday dose of Emend had run its course. When I got to the hospital for more hydration, the nurses remarked one after another that I didn't look like I was doing OK. I ended up getting another round of Emend and another anti-nausea medication. That held me for the rest of the day and I was finally able to eat something. But, for the second straight day, I told my wife I was feeling too sick for her to go to CrossFit. I simply needed to get home to get some rest right after work.
This morning, I felt a bit better. I had a few sips of coffee. The nurses said I looked better when I got to the hospital. They didn't give me any extra medications today. I'm far from 100%, but I'm slowly getting better.
I talked to my oncologist briefly on Tuesday and she said that this round is much more typical of how her patients react to these medications on a regular basis. We both agreed that we were glad I was done with the chemo.
I'm still feeling a bit rough, but gradually returning to normal. If I'm lucky, I'll be skiing by the weekend. But first, a nap. After my wife does CrossFit.
Maybe I even knew this earlier, when I complained that I hadn't recovered from round 3 as quickly as from round 1 or 2. But, I was more tired early on, I had more nausea early, and I just felt foggy right from the start.
One of the barometers I use during chemo, at least in terms of nausea, is coffee. If I wake up in the morning and I still want to drink coffee, I figure the nausea is under control. In the first round, I drank coffee through Friday (each round starts on a Wednesday), but by Saturday morning, I was vomiting and coffee was far from my mind.
In rounds 2 and 3, I drank coffee every day of chemo. Both times, I skipped coffee on the Sunday after chemo, but I was back to it by Monday. This time, things didn't go well at all on the coffee front. On Saturday morning, I found myself discussing nausea with the fellow, who happens to be a fellow CrossFitter. I said it was worse than any previous round. I'd been taking IV Zofran and Compazine (by pill) every 4 hours since things had started. Plus, I'd had Emend right at the start of chemo - a multi-day anti-nausea agent. The doctor suggested another round of Emend and I didn't argue.
I went home Saturday night, feeling just terrible. For the third straight night, I slept for 11+ hours. The nausea was no better on Sunday. My niece and her husband were visiting from out of town and we went to lunch at one of my favorite local restaurants. It never even occurred to me to order any food. Food that I'd eaten at this restaurant just a week before seemed disgusting to me. I did enjoy seeing my niece though, and everyone else seemed to enjoy the food.
Monday morning, coffee was still out. I went straight to the hospital in the morning, for a scheduled IV hydration session. I mentioned the nausea, but said it was manageable. After the hydration, I headed to the office. In the afternoon, I needed to take some pills. I deliberately took the most effective anti-nausea medication (zofran) one hour before the other pills. It didn't help, and shortly after taking the pills, I was vomiting. Food wasn't something I could even consider.
By Tuesday morning, I think my Saturday dose of Emend had run its course. When I got to the hospital for more hydration, the nurses remarked one after another that I didn't look like I was doing OK. I ended up getting another round of Emend and another anti-nausea medication. That held me for the rest of the day and I was finally able to eat something. But, for the second straight day, I told my wife I was feeling too sick for her to go to CrossFit. I simply needed to get home to get some rest right after work.
This morning, I felt a bit better. I had a few sips of coffee. The nurses said I looked better when I got to the hospital. They didn't give me any extra medications today. I'm far from 100%, but I'm slowly getting better.
I talked to my oncologist briefly on Tuesday and she said that this round is much more typical of how her patients react to these medications on a regular basis. We both agreed that we were glad I was done with the chemo.
I'm still feeling a bit rough, but gradually returning to normal. If I'm lucky, I'll be skiing by the weekend. But first, a nap. After my wife does CrossFit.
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