I've actually been skiing for the past three weeks, and I just realized I hadn't written anything about it yet.
This year, which I think is my 18th season at Sugarbush as an instructor, is going to be different than any other seasons in the past. Back in October, I was sitting in a waiting room at Sloan Kettering, waiting for the CT scan that would tell me if I'd be healthy enough to ski this year, when my phone rang.
It was one of my supervisors from Sugarbush, and I was glad to hear his voice. I told him that I'd been meaning to send him and my other boss an email, letting them know what I hoped to do this coming winter. My goal was to teach younger kids this year. There were two reasons for this. First, it would give me more good experience with younger children, which is helpful for a certification exam I hope to take this season or next. Secondly, in case I struggled at all physically, I thought that skiing with the younger children would be easier.
But, that phone call changed everything. It turned out that one of my supervisors was gone from the mountain and the other was taking over the program where I work. And, he needed an assistant and thought I was the right person for the job.
I told him I needed to finish my day at Sloan Kettering before I answered, but that I was definitely interested.
And so, it happened, and after 17 years just teaching and minding my own business, I'm now a (low level) supervisor. I am essentially in charge of the coaches who teach the youngest kids, so I'm getting my wish to work with the smaller children. But, a lot of the coaching I'm doing is with other instructors, rather than the public.
Two plus weeks ago, I did my own day of required pre-season training on a Saturday. The following day, I got to ski with some friends for the day - something I don't get to do very often.
One plus week ago, I spent the weekend training the instructors who are reporting to me this winter. We have a lot of new instructors, and I was very impressed at how good they all were. Some have taught skiing before at other mountains. Some came through our intern program at Sugarbush. And, others had experience with young children (various outdoor camps, whitewater rafting, being a nanny, etc.). So far, they've all done a great job.
This past weekend, we started teaching our students for the season. As usual, we had some hiccups the first weekend, but nothing too major. It's always a challenge with the younger kids to group them appropriately, and we still need to move a few students to different groups.
But, I was very impressed by the work I saw from my new charges, and I'm very optimistic about the season. I spent the weekend skiing from one group to another, offering tips to the coaches to help with opening weekend issues.
At their young ages, the very first thing we want to work on with the kids is balance. And, balance starts with stance. We want the skiers to be tall in their stance and also forward. It's amazing how much you can change a child's skiing just by getting them to stand up taller. Children who were in wedges constantly suddenly come parallel between turns, even though they may resort to a spontaneous wedge through the turn itself. For the first weekend, that was the majority of what we worked on.
From there, we will move on to other balance drills the next few weeks, as we give each child the chance to get their "ski legs" back. It's important to remember that most of these children are very young, have skied a limited number of days in their lives, and we were seeing them on their first day on skis for the season. It simply takes some time for what they've learned in the past to return. So, the goal is to make some tiny adjustments, and let the little guys get in some mileage.
As we get to the point where balance is no longer an issue, we have all kinds of things to work on. But for now, we are just starting and it's all about the balance.
Hopefully, the forecast is wrong and we won't be skiing in pouring rain this coming Saturday.
Wednesday, December 20, 2017
Wednesday, December 6, 2017
Wow - long time no post
My life can only be described as crazy right now. I can't believe it's been so long since I posted. At this time of year, I don't really expect to post on my fly fishing blog, but this one normally gets some attention.
Healthwise, everything is holding steady. I got through my first round of Ibrance just fine. I did have a mild head cold at the end of the round, and it's lingering a bit, but it's been pretty mild. My neutrophils count at the end of the first round was good enough to head straight into the second round. Other than a few minor issues - hair thinning a bit, some nausea, and a bit of fatigue (really a need for more sleep), I'm doing OK on the medication. I'll finish round 2 this weekend, get my blood work done on Monday, and then hopefully start round 3 the following weekend.
On January 9th, I will make my next trip to Sloan Kettering to see how the drug is working. If I've had no growth in my one small tumor, we will simply stay the course. If the tumor has shrunk or is gone, I'll be ecstatic. And, if things are still growing, we will discuss other options that I have. And, there are plenty of remaining options.
While this is going on, I've been swamped at work. In the past 18 months, I've made IT Security a major focus of my work. We are a small company, but we still handle protected health information (PHI), and we are bound by the law known as HIPAA. We had done OK on a a self-assessment tool a few years ago, but I knew that this was not the same as a full security assessment performed by an outside agency.
But, earlier this year, our biggest customer was purchased. That organization is now owned by a company, that is owned by a company, that is owned by one of the largest insurers in the country. Because we use PHI associated with the owned organization, we have to meet the security requirements of a company with annual revenue close to $200B. Yes, that's a B, as in billions. We don't even have a million dollars per year in revenue right now, so this is a daunting task. Many of the things that we were missing were policies. Those are easy to deal with - write the policy and then enforce it.
But, we are also missing all kinds of tools that monitor systems, looking for bad actors. I don't have the full costs yet, but my current guess is that we are looking at $25K in upfront costs, and then at least $5K per month in additional charges. To be honest, this exceeds our profit on this contract, so doing it out of our own pocket is prohibitive.
We are currently working with the big company and our customer to explore alternative ways to pay for this improved security. I don't disagree with the need to do it, but we simply don't have the money right now. And, it's been a very good exercise for me. I have learned so much about IT Security in the healthcare world in the past year, and I am now a better prospective employee for other organizations. I imagine that I could help to improve the security at most healthcare organizations in the country right now, and I've updated my resume to tout these new skills.
I must admit that our company is struggling a bit right now. We have only a few paying customers, we have no recent sales, and we have one grant that we are working on. To be honest, we are losing money at the moment, and this is with most staff going unpaid or working reduced hours. After 10 years with this organization, 8 of them full time as the head of the software development department, it honestly looks like we might not make it more than a few more months.
So, I've been looking for a new job, and I think everyone in my company is either already employed elsewhere, is planning to retire, or is looking like I am. I am still working hard to try to keep us afloat, but it honestly feels like a few people have already given up really trying. If we don't make it, I will certainly be sad. I've devoted almost 1/3 of my career to this company, I really believe in what we do, and I'd hate to see our products fall into disuse. But, without one or two new sales very soon, it's hard to see a financial path forward.
This is the first time that I've actively looked for a job since 2006, and the world really seems to have changed in that time frame. So have I. I am now officially old in the IT field, and I've clearly hit some age discrimination. In at least two cases, I failed to get an offer when I was clearly well qualified for the job, and I was stunned by the lack of an offer. Before I turned 50, an interview always seemed to result in an offer. Since turning 50, I have not gotten one job offer. In some ways, this is to be expected. I'm more senior, in IT leadership, and I have a higher salary. The higher the salary, the more difficult it is to get a commensurate job. But, I think age has played a role in a few cases as well.
Currently, I have three options out there. Only one of them is in health care, so I'm hoping that this situation works out. In some ways, I think I have an inside track on this job, based on my prior career experience with some of the people at the new company. I will know more by the end of the week. The others are in different problem spaces, but the companies seem very committed to doing things the right way, using modern development methodologies, and I am very interested in them as well.
On the workout front, things are moving along just fine. Since returning to CrossFit at the end of July, I've had four very good months of consistent training. In three of those months, I tied or exceeded my previous best number of CF workouts for that month of the year. The yearly calendar does affect how many classes I can get to (holidays can reduce the number, for example) in a month, but the last 4 months have been pretty good.
The only downside is a slight overuse injury that is affecting my right knee. I am seeing a physical therapist for the knee, and things are improving slowly. I was unsure how the knee would do with skiing, but I skied both days last weekend with minimal complaints from the knee.
That takes me to my last topic of this post - skiing. This will be my 18th season as a ski instructor, and I was promoted to a supervisory role this winter. Rather than teaching children how to ski, I'm going to be a mentor for our younger instructors, training them, skiing with them and their groups, and trying to help them to become better instructors. I'm excited to be doing this work. It will be an interesting change from my previous years, and an opportunity to have more influence on the quality of the program where I work.
I do have a trip to Sloan Kettering in January. I have to hope that the Ibrance is working, and if it is, I'll be free to ski the rest of the winter uninterrupted by any other treatments.
All in all, life is a bit stressful due to the job situation. But, at the same time, there are changes afoot, and I'm looking forward to some new challenges. I don't ever want to feel like I've become too old to excel in a new opportunity. I think I still have a lot to offer in my career field, and I'm likely to get that chance soon.
Healthwise, everything is holding steady. I got through my first round of Ibrance just fine. I did have a mild head cold at the end of the round, and it's lingering a bit, but it's been pretty mild. My neutrophils count at the end of the first round was good enough to head straight into the second round. Other than a few minor issues - hair thinning a bit, some nausea, and a bit of fatigue (really a need for more sleep), I'm doing OK on the medication. I'll finish round 2 this weekend, get my blood work done on Monday, and then hopefully start round 3 the following weekend.
On January 9th, I will make my next trip to Sloan Kettering to see how the drug is working. If I've had no growth in my one small tumor, we will simply stay the course. If the tumor has shrunk or is gone, I'll be ecstatic. And, if things are still growing, we will discuss other options that I have. And, there are plenty of remaining options.
While this is going on, I've been swamped at work. In the past 18 months, I've made IT Security a major focus of my work. We are a small company, but we still handle protected health information (PHI), and we are bound by the law known as HIPAA. We had done OK on a a self-assessment tool a few years ago, but I knew that this was not the same as a full security assessment performed by an outside agency.
But, earlier this year, our biggest customer was purchased. That organization is now owned by a company, that is owned by a company, that is owned by one of the largest insurers in the country. Because we use PHI associated with the owned organization, we have to meet the security requirements of a company with annual revenue close to $200B. Yes, that's a B, as in billions. We don't even have a million dollars per year in revenue right now, so this is a daunting task. Many of the things that we were missing were policies. Those are easy to deal with - write the policy and then enforce it.
But, we are also missing all kinds of tools that monitor systems, looking for bad actors. I don't have the full costs yet, but my current guess is that we are looking at $25K in upfront costs, and then at least $5K per month in additional charges. To be honest, this exceeds our profit on this contract, so doing it out of our own pocket is prohibitive.
We are currently working with the big company and our customer to explore alternative ways to pay for this improved security. I don't disagree with the need to do it, but we simply don't have the money right now. And, it's been a very good exercise for me. I have learned so much about IT Security in the healthcare world in the past year, and I am now a better prospective employee for other organizations. I imagine that I could help to improve the security at most healthcare organizations in the country right now, and I've updated my resume to tout these new skills.
I must admit that our company is struggling a bit right now. We have only a few paying customers, we have no recent sales, and we have one grant that we are working on. To be honest, we are losing money at the moment, and this is with most staff going unpaid or working reduced hours. After 10 years with this organization, 8 of them full time as the head of the software development department, it honestly looks like we might not make it more than a few more months.
So, I've been looking for a new job, and I think everyone in my company is either already employed elsewhere, is planning to retire, or is looking like I am. I am still working hard to try to keep us afloat, but it honestly feels like a few people have already given up really trying. If we don't make it, I will certainly be sad. I've devoted almost 1/3 of my career to this company, I really believe in what we do, and I'd hate to see our products fall into disuse. But, without one or two new sales very soon, it's hard to see a financial path forward.
This is the first time that I've actively looked for a job since 2006, and the world really seems to have changed in that time frame. So have I. I am now officially old in the IT field, and I've clearly hit some age discrimination. In at least two cases, I failed to get an offer when I was clearly well qualified for the job, and I was stunned by the lack of an offer. Before I turned 50, an interview always seemed to result in an offer. Since turning 50, I have not gotten one job offer. In some ways, this is to be expected. I'm more senior, in IT leadership, and I have a higher salary. The higher the salary, the more difficult it is to get a commensurate job. But, I think age has played a role in a few cases as well.
Currently, I have three options out there. Only one of them is in health care, so I'm hoping that this situation works out. In some ways, I think I have an inside track on this job, based on my prior career experience with some of the people at the new company. I will know more by the end of the week. The others are in different problem spaces, but the companies seem very committed to doing things the right way, using modern development methodologies, and I am very interested in them as well.
On the workout front, things are moving along just fine. Since returning to CrossFit at the end of July, I've had four very good months of consistent training. In three of those months, I tied or exceeded my previous best number of CF workouts for that month of the year. The yearly calendar does affect how many classes I can get to (holidays can reduce the number, for example) in a month, but the last 4 months have been pretty good.
The only downside is a slight overuse injury that is affecting my right knee. I am seeing a physical therapist for the knee, and things are improving slowly. I was unsure how the knee would do with skiing, but I skied both days last weekend with minimal complaints from the knee.
That takes me to my last topic of this post - skiing. This will be my 18th season as a ski instructor, and I was promoted to a supervisory role this winter. Rather than teaching children how to ski, I'm going to be a mentor for our younger instructors, training them, skiing with them and their groups, and trying to help them to become better instructors. I'm excited to be doing this work. It will be an interesting change from my previous years, and an opportunity to have more influence on the quality of the program where I work.
I do have a trip to Sloan Kettering in January. I have to hope that the Ibrance is working, and if it is, I'll be free to ski the rest of the winter uninterrupted by any other treatments.
All in all, life is a bit stressful due to the job situation. But, at the same time, there are changes afoot, and I'm looking forward to some new challenges. I don't ever want to feel like I've become too old to excel in a new opportunity. I think I still have a lot to offer in my career field, and I'm likely to get that chance soon.
Thursday, October 26, 2017
A week with the new medication
I've been taking Ibrance for a week right now. I'm still shocked that my insurance company approved it so quickly, given that it's primarily a breast cancer drug, and not a liposarcoma drug. But, they approved it and I've been taking it.
After a week, to be honest, the only side effect so far is some nausea right after I take it. I'm taking an anti-nausea medication with it, and that seems to be working just fine.
I know the side effects tend to be cumulative, although some people see problems with white cell counts fairly quickly. I am going to have a blood test done next week (CBC), just to make sure that nothing extreme is happening at the two week mark. After that, we will do the test monthly, just before I start each round.
My local medical oncologist was surprised at the decision Sloan Kettering made when they gave me Ibrance. She seemed to think that Yondelis or Halaven, both approved specifically for liposarcoma, even though Halaven is also a re-purposed breast cancer drug, might have been better choices.
But, I think she also understands that Sloan Kettering is calling the shots these days, and she didn't try to talk me into anything different.
I've noticed no effects in the gym so far.
I have been fighting a minor injury in the gym. I have a few "knots" in my right quad, and they seem to be causing my knee to track improperly. So, my right knee has been sore, mostly at the top of kneecap, but occasionally at the bottom of the kneecap as well.
I had been seeing a physical therapist to work on compensating for having lost most of right psoas muscle, but I think we are done with that aspect of therapy. I'm doing abdominal work in the gym with very few problems, and the movements that were really troubling me in July and early August, such as running, burpees, rope jumping, and box jumps, are all better now.
So, I'm still seeing the therapist, but now we are focusing on the knee. She's using a combo of dry needling, massage, ultrasound and Graston tools to work on releasing the knots. On my own, I'm biking more before CrossFit, to loosen up the quad. And, I'm using a barbell to roll over the knots in my quad. It hurts like hell, but things seem to be getting better. To be honest, the dry needling is the most painful of the treatments, but it seems to be helping, so I'm just going along with it.
I need my quad and knee to be better by the time I'm on snow for the ski season, and that could be just over 3 weeks away, although the long term forecast doesn't look great for snowmaking.
I'm hoping that just a few months of uninterrupted training will be enough to have me ready for the ski season. I have a new job at the mountain this year, and I expect to ski a lot more this winter than the past two years.
After a week, to be honest, the only side effect so far is some nausea right after I take it. I'm taking an anti-nausea medication with it, and that seems to be working just fine.
I know the side effects tend to be cumulative, although some people see problems with white cell counts fairly quickly. I am going to have a blood test done next week (CBC), just to make sure that nothing extreme is happening at the two week mark. After that, we will do the test monthly, just before I start each round.
My local medical oncologist was surprised at the decision Sloan Kettering made when they gave me Ibrance. She seemed to think that Yondelis or Halaven, both approved specifically for liposarcoma, even though Halaven is also a re-purposed breast cancer drug, might have been better choices.
But, I think she also understands that Sloan Kettering is calling the shots these days, and she didn't try to talk me into anything different.
I've noticed no effects in the gym so far.
I have been fighting a minor injury in the gym. I have a few "knots" in my right quad, and they seem to be causing my knee to track improperly. So, my right knee has been sore, mostly at the top of kneecap, but occasionally at the bottom of the kneecap as well.
I had been seeing a physical therapist to work on compensating for having lost most of right psoas muscle, but I think we are done with that aspect of therapy. I'm doing abdominal work in the gym with very few problems, and the movements that were really troubling me in July and early August, such as running, burpees, rope jumping, and box jumps, are all better now.
So, I'm still seeing the therapist, but now we are focusing on the knee. She's using a combo of dry needling, massage, ultrasound and Graston tools to work on releasing the knots. On my own, I'm biking more before CrossFit, to loosen up the quad. And, I'm using a barbell to roll over the knots in my quad. It hurts like hell, but things seem to be getting better. To be honest, the dry needling is the most painful of the treatments, but it seems to be helping, so I'm just going along with it.
I need my quad and knee to be better by the time I'm on snow for the ski season, and that could be just over 3 weeks away, although the long term forecast doesn't look great for snowmaking.
I'm hoping that just a few months of uninterrupted training will be enough to have me ready for the ski season. I have a new job at the mountain this year, and I expect to ski a lot more this winter than the past two years.
Tuesday, October 17, 2017
Updates from my latest scan
Going into the scan, my brain was really in two modes. It was all or nothing. I'd either be clear, or it would be a horrible catastrophe.
I never really stopped to think about other options. And, another option is what I got.
I got there as scheduled for my scan. Got my serum creatinine tested (they need to know this to know how much IV contrast my one remaining kidney can handle), and then the scan.
Then, we got some lunch, but I was so nervous I could barely eat. I was just locked into this mindset that the scan had to be perfect or it was going to be a disaster.
We arrived for my appointment with the oncologist right at 2:00. As usual, things were running late, and the later things get, the more my imagination pictures the doc and his staff in the back room going over my scan, trying to figure out what they can offer.
At 3:30, we got called into an exam room. The first person who came in asked me how I was doing. She wanted to know how I'd been feeling since my surgery in June. But, the only thing I could say was "I don't know; you tell me". All I wanted were the results of the scan.
My oncologist's PA was very nice to me though, and she immediately let me know that they'd found one tiny new spot in my abdomen, but that it wasn't super concerning. In a few minutes, my oncologist arrived and explained things in detail. There was one new spot, not near any organs, and less than half an inch across. There were three main options:
Option number 1 wasn't really an option. You can only have surgery so many times, and this tumor isn't worthy of using one of those bullets. Surgery would be overkill at the moment.
Option 2 was certainly an option. We could simply wait for it to grow larger and operate when necessary. The problem with that option is that new tumors might show up in the interim, and one might show up in a bad location.
Option 3 was the most intriguing. It's an oral medication, not a true chemo, and it targets a particular gene mutation in my tumors. For some patients, it doesn't work at all. For the average patient, the tumors don't grow for about 18 weeks, and then the drug begins to be less effective. And, for some patients, the drug has fully arrested tumor growth for years.
I asked a lot of questions about side effects. Would I lose my hair? It might get a bit thin. Would I be nauseous? Possibly, but anti-nausea meds or just taking it with food would reduce that risk. Would I become anemic and have troubles training in gym or skiing? About 22% of patients see some level of anemia, and it's rarely significant. Anything else? Well, the most common side effect is suppression of white cell production, raising the risk of an opportunistic infection. And, a few people notice changes in how food tastes. A few get some mild neuropathy.
Oh, and it costs $10K per month and many insurance companies fight it because it's primarily a breast cancer drug.
After going through the likely odds for the side effects (pretty low, to be honest), I decided that I'd rather take the chance, and hope it can suppress any more growth for a while. To be honest, this particular medicine had been my best guess going into the meeting. It seems to be more and more commonly used for liposarcoma these days, and only 4 months after surgery, I wasn't really expecting a lot of new tumors.
I really like the medical oncologist that I'll be working with, and he seems to be very comfortable with this as the best option right now. My surgical oncologist agrees. And, they got the medication approved by my insurance in 2 days.
I should be starting it tomorrow. Hopefully, side effects will be minimal, as they are for most people. And, it would be great to see it work for a long, long time. I'll take any time I can get, but being in that group of people who respond very well would be nice.
So, life moves on. No surgery. No harsh chemos. No frequent hospital visits for infusions. Just a pill, once per day for 21 days, and then 7 off. Repeat until it stops working.
After 3 months, we will do a scan to see how it's working. Yes, it would have been ideal to be completely disease free. But, this is probably the next best thing.
So, let's run with it for a while.
I never really stopped to think about other options. And, another option is what I got.
I got there as scheduled for my scan. Got my serum creatinine tested (they need to know this to know how much IV contrast my one remaining kidney can handle), and then the scan.
Then, we got some lunch, but I was so nervous I could barely eat. I was just locked into this mindset that the scan had to be perfect or it was going to be a disaster.
We arrived for my appointment with the oncologist right at 2:00. As usual, things were running late, and the later things get, the more my imagination pictures the doc and his staff in the back room going over my scan, trying to figure out what they can offer.
At 3:30, we got called into an exam room. The first person who came in asked me how I was doing. She wanted to know how I'd been feeling since my surgery in June. But, the only thing I could say was "I don't know; you tell me". All I wanted were the results of the scan.
My oncologist's PA was very nice to me though, and she immediately let me know that they'd found one tiny new spot in my abdomen, but that it wasn't super concerning. In a few minutes, my oncologist arrived and explained things in detail. There was one new spot, not near any organs, and less than half an inch across. There were three main options:
- Remove it
- Wait until it got bigger and then remove it
- Try a medication to see if we could stop the tumor from growing any more, and in the process, prevent any new tumors from forming. The medication's brand name is Ibrance.
Option number 1 wasn't really an option. You can only have surgery so many times, and this tumor isn't worthy of using one of those bullets. Surgery would be overkill at the moment.
Option 2 was certainly an option. We could simply wait for it to grow larger and operate when necessary. The problem with that option is that new tumors might show up in the interim, and one might show up in a bad location.
Option 3 was the most intriguing. It's an oral medication, not a true chemo, and it targets a particular gene mutation in my tumors. For some patients, it doesn't work at all. For the average patient, the tumors don't grow for about 18 weeks, and then the drug begins to be less effective. And, for some patients, the drug has fully arrested tumor growth for years.
I asked a lot of questions about side effects. Would I lose my hair? It might get a bit thin. Would I be nauseous? Possibly, but anti-nausea meds or just taking it with food would reduce that risk. Would I become anemic and have troubles training in gym or skiing? About 22% of patients see some level of anemia, and it's rarely significant. Anything else? Well, the most common side effect is suppression of white cell production, raising the risk of an opportunistic infection. And, a few people notice changes in how food tastes. A few get some mild neuropathy.
Oh, and it costs $10K per month and many insurance companies fight it because it's primarily a breast cancer drug.
After going through the likely odds for the side effects (pretty low, to be honest), I decided that I'd rather take the chance, and hope it can suppress any more growth for a while. To be honest, this particular medicine had been my best guess going into the meeting. It seems to be more and more commonly used for liposarcoma these days, and only 4 months after surgery, I wasn't really expecting a lot of new tumors.
I really like the medical oncologist that I'll be working with, and he seems to be very comfortable with this as the best option right now. My surgical oncologist agrees. And, they got the medication approved by my insurance in 2 days.
I should be starting it tomorrow. Hopefully, side effects will be minimal, as they are for most people. And, it would be great to see it work for a long, long time. I'll take any time I can get, but being in that group of people who respond very well would be nice.
So, life moves on. No surgery. No harsh chemos. No frequent hospital visits for infusions. Just a pill, once per day for 21 days, and then 7 off. Repeat until it stops working.
After 3 months, we will do a scan to see how it's working. Yes, it would have been ideal to be completely disease free. But, this is probably the next best thing.
So, let's run with it for a while.
Friday, October 6, 2017
Scan time again already
I've been working hard with a physical therapist for the past month, trying to overcome some of the physical deficits I have because of losing most of right psoas muscle. Things are improving week by week.
Despite a business trip/vacation that lasted 9 days, I still managed 12 days of CrossFit in September. I'm finally starting to feel stronger and my aerobic capacity is coming around. I'm able to do workouts now that put me in serious aerobic debt, and get through them without excessively long recovery breaks.
I've been fighting a minor knee issue, but it's not hindering me at all in the gym. Well, maybe a minor hindrance, but nothing significant.
My back squats, which started at 85# after surgery, have gotten as high as 235# recently. My Oly lifting is progressing nicely.
And now, it's time for another scan at Sloan Kettering.
I read a number of blogs and publications related to cancer. Many of them discuss the ongoing mental issues that patients have - either after being cured or as they still deal with the disease. It is often equated to PTSD. I can't say that I've ever seen combat or been involved in a shooting incident, so I can't honestly compare my feelings to those of a soldier or cop. But, PTSD seems like a reasonable way to describe my mindset as this scan approaches.
My anxiety is through the roof. My mind is full of "what if's". To be honest, I feel like this scan will tell me a lot, and maybe that's why I feel so anxious. The surgeon was very positive that he got everything out in June, with clean margins. The best possible outcome.
If my scan is clean, that claim is pretty much validated. And, to be honest, I fully believe that he did what he claims and he's given me the best chance that I could possibly have gotten.
But, if the cancer is back, I just don't know how I'm going to react. I do seem to have a very aggressive version of this cancer, and my 3 surgeries, 2 bouts with chemo, and 1 course of radiation will attest to the fact that it's taken a lot to keep it at bay.
I so much want this scan to be clean. It would mean I could teach skiing all winter long with no interruptions, something I've been unable to do the past two winters. It would be good for my career as well, to be honest. I need to demonstrate to my employer that I can go more than a few months without treatment and that they can count on me to be fully present in my job.
Also, as surgeries and other treatments mount, I never know when a treatment will change my life permanently, and for the worse. Right now, I'm still able to train hard. I'm able to fish when I want. I'm able to ski and teach skiing. But, more chemo or surgery could make those things difficult or impossible. This last surgery took longer to recover from than the previous two. It might have been related to the chemo I'd had before surgery, which was also pretty harsh. But, getting back into the gym was harder this time. Running is more challenging than ever right now. Some movements that are dynamic or emphasize the core muscles are especially challenging. Months after chemo and surgery, I still find myself sleeping close to 12 hours on weekend nights, just to recover from the stresses of the week.
And most importantly, if the cancer is back again so soon, it's a bellwether of the future. It will really tell me that I'm probably never going to have long periods of time where I'm disease free, and that I'm truly moving along a timeline that is going to end badly, and more quickly than I'd like.
Of course, this might all just be the negative voices in my head. But mentally, I really need this scan to be clean. If it's not, I honestly don't know how I'm going to deal with more treatments so soon after the last.
This whole process is something I would never wish on any human being, no matter how I feel about them. Sometimes, it's simply too much to deal with. I've got the best possible medical team treating me, and I just have to hope that they can continue to keep the disease at bay.
Despite a business trip/vacation that lasted 9 days, I still managed 12 days of CrossFit in September. I'm finally starting to feel stronger and my aerobic capacity is coming around. I'm able to do workouts now that put me in serious aerobic debt, and get through them without excessively long recovery breaks.
I've been fighting a minor knee issue, but it's not hindering me at all in the gym. Well, maybe a minor hindrance, but nothing significant.
My back squats, which started at 85# after surgery, have gotten as high as 235# recently. My Oly lifting is progressing nicely.
And now, it's time for another scan at Sloan Kettering.
I read a number of blogs and publications related to cancer. Many of them discuss the ongoing mental issues that patients have - either after being cured or as they still deal with the disease. It is often equated to PTSD. I can't say that I've ever seen combat or been involved in a shooting incident, so I can't honestly compare my feelings to those of a soldier or cop. But, PTSD seems like a reasonable way to describe my mindset as this scan approaches.
My anxiety is through the roof. My mind is full of "what if's". To be honest, I feel like this scan will tell me a lot, and maybe that's why I feel so anxious. The surgeon was very positive that he got everything out in June, with clean margins. The best possible outcome.
If my scan is clean, that claim is pretty much validated. And, to be honest, I fully believe that he did what he claims and he's given me the best chance that I could possibly have gotten.
But, if the cancer is back, I just don't know how I'm going to react. I do seem to have a very aggressive version of this cancer, and my 3 surgeries, 2 bouts with chemo, and 1 course of radiation will attest to the fact that it's taken a lot to keep it at bay.
I so much want this scan to be clean. It would mean I could teach skiing all winter long with no interruptions, something I've been unable to do the past two winters. It would be good for my career as well, to be honest. I need to demonstrate to my employer that I can go more than a few months without treatment and that they can count on me to be fully present in my job.
Also, as surgeries and other treatments mount, I never know when a treatment will change my life permanently, and for the worse. Right now, I'm still able to train hard. I'm able to fish when I want. I'm able to ski and teach skiing. But, more chemo or surgery could make those things difficult or impossible. This last surgery took longer to recover from than the previous two. It might have been related to the chemo I'd had before surgery, which was also pretty harsh. But, getting back into the gym was harder this time. Running is more challenging than ever right now. Some movements that are dynamic or emphasize the core muscles are especially challenging. Months after chemo and surgery, I still find myself sleeping close to 12 hours on weekend nights, just to recover from the stresses of the week.
And most importantly, if the cancer is back again so soon, it's a bellwether of the future. It will really tell me that I'm probably never going to have long periods of time where I'm disease free, and that I'm truly moving along a timeline that is going to end badly, and more quickly than I'd like.
Of course, this might all just be the negative voices in my head. But mentally, I really need this scan to be clean. If it's not, I honestly don't know how I'm going to deal with more treatments so soon after the last.
This whole process is something I would never wish on any human being, no matter how I feel about them. Sometimes, it's simply too much to deal with. I've got the best possible medical team treating me, and I just have to hope that they can continue to keep the disease at bay.
Tuesday, September 26, 2017
No news is good news?
I had no idea it had been weeks since my last update. I've kept my fly fishing blog up to date with my latest adventures, but nothing here.
September has been very, uh, busy. I guess that would be the word.
I spent some time at a healthcare conference in Maine. I got to see Tom Price speak (regretfully I didn't get to ask him any questions), and then had to laugh when he found himself in hot water for using charter flights to attend a private business conference.
I also got to hear Todd Park speak and I had a very nice conversation with him. For those that don't know, Park served as the CTO of the country for President Obama. He was also one of the founders of the company that was putting on the conference I was attending. He focused on three things in a talk that was way too short. Passion, diversity, and the need to make a compelling financial case in the healthcare software business.
That last point might seem obvious, but it's been a sticking point for my current company. We sell a service that is provided through software. We don't actually sell the software to people. We sell them the service and then we get some data from the customer and run the software for them. In our healthcare system, about 80% of all patients are still insured under the old standard "fee for service" model. That is, you see a provider, you get a service, and the insurer pays for the service.
For about 20% of our patients, there are value based incentives. That is, providers are paid not strictly for the services they provide, but rather based on patient outcomes. It's easy to estimate what it should cost to cover a particular patient in a year. The insurance companies have it down to a science. If you talk to any insurance company, and you tell them you have a 56 year old male, diabetic, hypertensive, obese, but no known kidney problems, and no other diabetic complications, in a particular zip code, they can give you a quick estimate of what it would typically cost to care for that patient for a year.
Value based care is a system where we give the doctors leeway to try to improve patient outcomes. If the outcomes improve, the doctors make more money. If the patients get sicker, the doctor makes less.
My company's software costs money to license, obviously. And, it increases revenue in primary practice and in the lab. But, it also cuts revenue in the emergency department and reduces inpatient admissions. For patients with kidney disease or diabetes, the use of our system improves the patient's health and reduces the cost of care.
In the fee for service world, this is actually seen as a negative. With so many healthcare organizations now vertically integrated, the lab, primary care, ED, and inpatient setting are all part of the same organization. In those organizations, when my company talks to the hospitals, we are frequently told that using our software is the right thing to do, but they can't afford to use it, even though it will make their patients healthier. That is the absurdity of fee for service. Hospital organizations, including places where I've gotten care, have basically told us that they would rather make more money than have healthier patients.
In the value based care world, our product is easier to sell, but it's far from an easy sale.
I got a chance to talk to Todd Park about this problem. I've always been a dreamer, I guess, thinking that hospitals would do the right thing and use our system anyway. But, we've been rebuffed so many times that it's shocked me. And, Todd Park confirmed that he thinks it will stay this way. He said that without value based care, dollars will always be more important than outcomes. That is truly disheartening.
At the same time, he said that with 20% of the policies out there including some sort of value based care, the market for our products is huge. And about 1/3 of those 20% are fully at risk, meaning that doctors get a fixed amount to care for a patient, and their profit is purely outcome driven. So, that might be about 7% of the US market where our product is an ideal fit. But, if we could get to 1% of the patients in the country, we would be wildly successful. Our patient count is in the tens of thousands of affected patients, out of candidate pools of a couple hundred thousand patients. One percent would be a candidate pool of 3.3M people - easily 10x what we support today.
I've been involved in this software for most of the past 15 years. I've been with the company in some capacity or another for almost 10 years (I worked on the initial software at a prior job), and I've been here full time for 8 years. I truly believe that we have a product that has a lot to add to the care of chronically ill patients, and I desperately want us to succeed.
I can go into our databases, and find patients whose lives are better because of our software. Is there a better reason to get out of bed and go to work everyday than knowing you are improving people's health in the short and long term? I honestly don't think so, which is why I love my current job so much.
And yet, we are not succeeding financially at the moment, and that bothers me. I don't want to have to find a new job. To be honest, the bias against people my age in IT is very real. Finding a new job at my age gets tougher and tougher. Plus, I love what I do now.
We just have to figure out how to get to the right people and convince them of our value proposition.
And, that was quite a tangent.
After the conference was over, I took a week of vacation. It was my first real vacation time, one long weekend in NYC excepted, in about a year. I spent my time, mostly alone, fishing in NH, and if you care to read about it, a link to my fishing blog is in the sidebar. I would rather have been on vacation with my wife, but she knows how much I love fishing, and gladly supports this solo trip that I do every fall.
Now, I'm back at work and back in the gym. Due to the time away, I won't do as many CrossFit workouts in September as I did in August, but it will still be a solid month. I spent most of my vacation on my feet, and although fly fishing isn't exactly taxing, it can be a form of exercise. I challenge almost anyone to walk 10,000 steps in a day in rivers, wearing big, clunky waders and boots, where half of your steps are against the current. It's not a traditional workout, but it can be very tiring.
Right now, I'm trying to live with the heat in the gym as the month winds to a close. I'll likely get about a dozen CF workouts this month, after 17 the month before. I have some more vacation planned for October (a few days in NYC - my wife and sister are going to see Hamilton, I'm going to Sloan Kettering), and a weekend at a Penn State football game. So, my October numbers for CF won't get to 17, but I should get more days than in September.
And, with October looming on the horizon, I'm starting to think about skiing. If my scan at Sloan Kettering is clean, I will be able to ski the entire season, uninterrupted by any treatments, for the first time in three years. That would make me extremely happy.
September has been very, uh, busy. I guess that would be the word.
I spent some time at a healthcare conference in Maine. I got to see Tom Price speak (regretfully I didn't get to ask him any questions), and then had to laugh when he found himself in hot water for using charter flights to attend a private business conference.
I also got to hear Todd Park speak and I had a very nice conversation with him. For those that don't know, Park served as the CTO of the country for President Obama. He was also one of the founders of the company that was putting on the conference I was attending. He focused on three things in a talk that was way too short. Passion, diversity, and the need to make a compelling financial case in the healthcare software business.
That last point might seem obvious, but it's been a sticking point for my current company. We sell a service that is provided through software. We don't actually sell the software to people. We sell them the service and then we get some data from the customer and run the software for them. In our healthcare system, about 80% of all patients are still insured under the old standard "fee for service" model. That is, you see a provider, you get a service, and the insurer pays for the service.
For about 20% of our patients, there are value based incentives. That is, providers are paid not strictly for the services they provide, but rather based on patient outcomes. It's easy to estimate what it should cost to cover a particular patient in a year. The insurance companies have it down to a science. If you talk to any insurance company, and you tell them you have a 56 year old male, diabetic, hypertensive, obese, but no known kidney problems, and no other diabetic complications, in a particular zip code, they can give you a quick estimate of what it would typically cost to care for that patient for a year.
Value based care is a system where we give the doctors leeway to try to improve patient outcomes. If the outcomes improve, the doctors make more money. If the patients get sicker, the doctor makes less.
My company's software costs money to license, obviously. And, it increases revenue in primary practice and in the lab. But, it also cuts revenue in the emergency department and reduces inpatient admissions. For patients with kidney disease or diabetes, the use of our system improves the patient's health and reduces the cost of care.
In the fee for service world, this is actually seen as a negative. With so many healthcare organizations now vertically integrated, the lab, primary care, ED, and inpatient setting are all part of the same organization. In those organizations, when my company talks to the hospitals, we are frequently told that using our software is the right thing to do, but they can't afford to use it, even though it will make their patients healthier. That is the absurdity of fee for service. Hospital organizations, including places where I've gotten care, have basically told us that they would rather make more money than have healthier patients.
In the value based care world, our product is easier to sell, but it's far from an easy sale.
I got a chance to talk to Todd Park about this problem. I've always been a dreamer, I guess, thinking that hospitals would do the right thing and use our system anyway. But, we've been rebuffed so many times that it's shocked me. And, Todd Park confirmed that he thinks it will stay this way. He said that without value based care, dollars will always be more important than outcomes. That is truly disheartening.
At the same time, he said that with 20% of the policies out there including some sort of value based care, the market for our products is huge. And about 1/3 of those 20% are fully at risk, meaning that doctors get a fixed amount to care for a patient, and their profit is purely outcome driven. So, that might be about 7% of the US market where our product is an ideal fit. But, if we could get to 1% of the patients in the country, we would be wildly successful. Our patient count is in the tens of thousands of affected patients, out of candidate pools of a couple hundred thousand patients. One percent would be a candidate pool of 3.3M people - easily 10x what we support today.
I've been involved in this software for most of the past 15 years. I've been with the company in some capacity or another for almost 10 years (I worked on the initial software at a prior job), and I've been here full time for 8 years. I truly believe that we have a product that has a lot to add to the care of chronically ill patients, and I desperately want us to succeed.
I can go into our databases, and find patients whose lives are better because of our software. Is there a better reason to get out of bed and go to work everyday than knowing you are improving people's health in the short and long term? I honestly don't think so, which is why I love my current job so much.
And yet, we are not succeeding financially at the moment, and that bothers me. I don't want to have to find a new job. To be honest, the bias against people my age in IT is very real. Finding a new job at my age gets tougher and tougher. Plus, I love what I do now.
We just have to figure out how to get to the right people and convince them of our value proposition.
And, that was quite a tangent.
After the conference was over, I took a week of vacation. It was my first real vacation time, one long weekend in NYC excepted, in about a year. I spent my time, mostly alone, fishing in NH, and if you care to read about it, a link to my fishing blog is in the sidebar. I would rather have been on vacation with my wife, but she knows how much I love fishing, and gladly supports this solo trip that I do every fall.
Now, I'm back at work and back in the gym. Due to the time away, I won't do as many CrossFit workouts in September as I did in August, but it will still be a solid month. I spent most of my vacation on my feet, and although fly fishing isn't exactly taxing, it can be a form of exercise. I challenge almost anyone to walk 10,000 steps in a day in rivers, wearing big, clunky waders and boots, where half of your steps are against the current. It's not a traditional workout, but it can be very tiring.
Right now, I'm trying to live with the heat in the gym as the month winds to a close. I'll likely get about a dozen CF workouts this month, after 17 the month before. I have some more vacation planned for October (a few days in NYC - my wife and sister are going to see Hamilton, I'm going to Sloan Kettering), and a weekend at a Penn State football game. So, my October numbers for CF won't get to 17, but I should get more days than in September.
And, with October looming on the horizon, I'm starting to think about skiing. If my scan at Sloan Kettering is clean, I will be able to ski the entire season, uninterrupted by any treatments, for the first time in three years. That would make me extremely happy.
Friday, September 1, 2017
August Summary
I made it to CrossFit 17 times in August. That was after one day in June and two in July.
The most I've ever done in a month is 18 days, and I came within one day of tying that record.
Since our gym opened exactly 7 years ago today, I have done 880 CrossFit workouts. Tonight will be number 881.
Things continue to improve, but slowly. My running is getting better, but it's far from good. My squats this week were 20 pounds heavier than a few weeks ago, so that was good. I did deadlifts last night at 185# - still less than half of my lifetime best, but I was happy with that number. There was no doubt that I could have lifted heavier, and next time I do deads, I will probably shoot for 225.
But, I'm still the slowest runner at the gym, and I'm using fairly light weights for a lot of the workouts. I feel kind of pathetic, but after the chemo and surgery I've been through this year, I need to learn to be grateful that I'm out there. Many people I've met (online) who have liposarcoma have had treatments that make just walking a challenge. I'm lucky that I'm still able to challenge myself this way.
Physical therapy is really exposing some imbalances and weaknesses, and I've got some work to do at home to work on that. It's amazing how losing 2/3 of that one muscle can affect overall strength and balance. At times, I can really feel other muscles being recruited to cover the muscle that's essentially gone.
My September totals for CF will certainly be lower than this month. We have five weekends in the month and I rarely do CF on the weekends. I also have a nine day trip that is a combo of business and vacation, and there will be no CF for those 9 days, most likely.
If I get 12 days in September, it will be a good month.
Right now, I'm hoping that a clean scan or two will let me stay focused in the gym, with no interruptions for treatments. If that happens, I should do my 1000th lifetime CF workout sometime next summer.
The most I've ever done in a month is 18 days, and I came within one day of tying that record.
Since our gym opened exactly 7 years ago today, I have done 880 CrossFit workouts. Tonight will be number 881.
Things continue to improve, but slowly. My running is getting better, but it's far from good. My squats this week were 20 pounds heavier than a few weeks ago, so that was good. I did deadlifts last night at 185# - still less than half of my lifetime best, but I was happy with that number. There was no doubt that I could have lifted heavier, and next time I do deads, I will probably shoot for 225.
But, I'm still the slowest runner at the gym, and I'm using fairly light weights for a lot of the workouts. I feel kind of pathetic, but after the chemo and surgery I've been through this year, I need to learn to be grateful that I'm out there. Many people I've met (online) who have liposarcoma have had treatments that make just walking a challenge. I'm lucky that I'm still able to challenge myself this way.
Physical therapy is really exposing some imbalances and weaknesses, and I've got some work to do at home to work on that. It's amazing how losing 2/3 of that one muscle can affect overall strength and balance. At times, I can really feel other muscles being recruited to cover the muscle that's essentially gone.
My September totals for CF will certainly be lower than this month. We have five weekends in the month and I rarely do CF on the weekends. I also have a nine day trip that is a combo of business and vacation, and there will be no CF for those 9 days, most likely.
If I get 12 days in September, it will be a good month.
Right now, I'm hoping that a clean scan or two will let me stay focused in the gym, with no interruptions for treatments. If that happens, I should do my 1000th lifetime CF workout sometime next summer.
Tuesday, August 29, 2017
Green Day
For the past few years, my wife and I have really increased the number of concerts that we attend. Part of this is related to cancer. In particular, I'm simply much more focused on experiences than acquiring stuff. And, I greatly enjoy seeing live music.
This year, we've had a really good year. Adrian Belew. Dead and Company. The Specials. U2. Echo and the Bunnymen. The Violent Femmes. And, last night, Green Day.
To be honest, we've been traveling and driving too much recently. My wife drove 10 hours on Saturday to take our daughter back to Syracuse and I'd driven almost 4 hours that day to do some trout fishing. We'd been to Boston three times recently.
I had tried to give these concert tickets away, just to avoid driving 4 hours from our office to the show, and then 3 more hours to get home. Getting home at 3:00 a.m. when you have to work the next day simply isn't a lot of fun. But, in retrospect, I'm glad we went.
It was the second time we've seen Green Day. The previous time was the tour for the 21st Century Breakdown album, and we saw them indoors in Albany that time. It was a pretty straightforward show, with a focus primarily on playing their music, and playing it well. Yes, they pulled someone out of the audience to play guitar for a bit, but they've been doing that for years. Last night, they pulled someone to sing in one song and someone to play guitar in another. The guy they picked to play guitar was only 15 and was pretty good.
This time, GD's lead singer, Billy Joe, seemed much more interested in audience interaction and getting the audience to respond to him or to sing the lyrics for him. Maybe it has to do with some of his own personal demons, including a problem that he allegedly had with prescription pills of some sort. I simply don't recall him being this overtly interactive with the audience the last time we saw them. He came across almost as a diva, demanding to be feted by the crowd. That was my least favorite part of the show and the biggest change since we last saw them.
I told my wife after the show that 1990 Billy Joe Armstrong would probably hate the 2017 version of himself. Coming out of the Oakland punk scene of the time, they played a lot of early shows at a place simply known as Gilman. I think that the club is still there, and if I recall correctly, they had a rule against bands with major record contracts. So, the early bands that played there - Green Day, Operation Ivy, the Offspring, and others, would no longer be welcome.
But, his desire for adulation from the audience is something that I imagine the old Billie Joe would not have liked at all.
Green Day is a big act these days. They don't put songs in the Top 40, and they discussed that in a recent interview with Rolling Stone when they played DC on the current tour. But, they still have quite a following, and I was amazed at an audience of teens to 60-somethings, where every single person seemed to know every single word to every single song. Their fans are not casual fans. I haven't purchased their latest album, to be honest, but most people there clearly knew it well.
And musically, they just plain delivered. The setlist from last night can be found here
They played five songs from their newest album. They completely skipped the trio of albums before that, a set of related albums called Uno, Dos, and Tré. The latter one is not a misspelling, but instead the stage name of their drummer - Tré Cool. I have the first two of those albums and I have to say that they aren't among my favorite Green Day albums. But, if you read the interview I linked to above, Mike Dirnt of the band talked about how great he thinks they are.
They played 7 songs from their classic concept album American Idiot. They used the title song to take a good swipe at the current occupant of the White House.
They played 5 songs from their breakout album Dookie. And, they even went back to 1991 or so, playing a couple songs from Kerplunk.
I have to admit that I wish Billy Joe had sung every word to the songs they played, rather than asking the audience to do it.
But, they played 26 songs, and in many of them, there were new arrangements that greatly lengthened the song. King for a Day was a perfect example of this and was one of my favorite songs of the show. American Idiot also fell into this category and was amazing.
It's rare these days to get a 2.5 hour show out of any band that isn't a jam band or Springsteen.
We had purchased lawn seats at this venue. I hate to use the newer corporate names of these venues, but I'll make an exception here. The venue, the XFinity Center (which will always be Great Woods to me) was not sold out. So, every patron who had a general admission ticket to sit on the lawn was upgraded for free to an actual seat. I'd never had that happen at a show before and it was a nice gesture.
We have tickets for one more show yet this fall - the Psychedelic Furs. I think it will be my 7th time seeing them, moving them past Bowie to number 2 on my all time list. Only the Dead in their various incarnations have been seen more.
This year, we've had a really good year. Adrian Belew. Dead and Company. The Specials. U2. Echo and the Bunnymen. The Violent Femmes. And, last night, Green Day.
To be honest, we've been traveling and driving too much recently. My wife drove 10 hours on Saturday to take our daughter back to Syracuse and I'd driven almost 4 hours that day to do some trout fishing. We'd been to Boston three times recently.
I had tried to give these concert tickets away, just to avoid driving 4 hours from our office to the show, and then 3 more hours to get home. Getting home at 3:00 a.m. when you have to work the next day simply isn't a lot of fun. But, in retrospect, I'm glad we went.
It was the second time we've seen Green Day. The previous time was the tour for the 21st Century Breakdown album, and we saw them indoors in Albany that time. It was a pretty straightforward show, with a focus primarily on playing their music, and playing it well. Yes, they pulled someone out of the audience to play guitar for a bit, but they've been doing that for years. Last night, they pulled someone to sing in one song and someone to play guitar in another. The guy they picked to play guitar was only 15 and was pretty good.
This time, GD's lead singer, Billy Joe, seemed much more interested in audience interaction and getting the audience to respond to him or to sing the lyrics for him. Maybe it has to do with some of his own personal demons, including a problem that he allegedly had with prescription pills of some sort. I simply don't recall him being this overtly interactive with the audience the last time we saw them. He came across almost as a diva, demanding to be feted by the crowd. That was my least favorite part of the show and the biggest change since we last saw them.
I told my wife after the show that 1990 Billy Joe Armstrong would probably hate the 2017 version of himself. Coming out of the Oakland punk scene of the time, they played a lot of early shows at a place simply known as Gilman. I think that the club is still there, and if I recall correctly, they had a rule against bands with major record contracts. So, the early bands that played there - Green Day, Operation Ivy, the Offspring, and others, would no longer be welcome.
But, his desire for adulation from the audience is something that I imagine the old Billie Joe would not have liked at all.
Green Day is a big act these days. They don't put songs in the Top 40, and they discussed that in a recent interview with Rolling Stone when they played DC on the current tour. But, they still have quite a following, and I was amazed at an audience of teens to 60-somethings, where every single person seemed to know every single word to every single song. Their fans are not casual fans. I haven't purchased their latest album, to be honest, but most people there clearly knew it well.
And musically, they just plain delivered. The setlist from last night can be found here
They played five songs from their newest album. They completely skipped the trio of albums before that, a set of related albums called Uno, Dos, and Tré. The latter one is not a misspelling, but instead the stage name of their drummer - Tré Cool. I have the first two of those albums and I have to say that they aren't among my favorite Green Day albums. But, if you read the interview I linked to above, Mike Dirnt of the band talked about how great he thinks they are.
They played 7 songs from their classic concept album American Idiot. They used the title song to take a good swipe at the current occupant of the White House.
They played 5 songs from their breakout album Dookie. And, they even went back to 1991 or so, playing a couple songs from Kerplunk.
I have to admit that I wish Billy Joe had sung every word to the songs they played, rather than asking the audience to do it.
But, they played 26 songs, and in many of them, there were new arrangements that greatly lengthened the song. King for a Day was a perfect example of this and was one of my favorite songs of the show. American Idiot also fell into this category and was amazing.
It's rare these days to get a 2.5 hour show out of any band that isn't a jam band or Springsteen.
We had purchased lawn seats at this venue. I hate to use the newer corporate names of these venues, but I'll make an exception here. The venue, the XFinity Center (which will always be Great Woods to me) was not sold out. So, every patron who had a general admission ticket to sit on the lawn was upgraded for free to an actual seat. I'd never had that happen at a show before and it was a nice gesture.
We have tickets for one more show yet this fall - the Psychedelic Furs. I think it will be my 7th time seeing them, moving them past Bowie to number 2 on my all time list. Only the Dead in their various incarnations have been seen more.
Thursday, August 24, 2017
Update
Life goes on.
I'm really enjoying the time away from the hospital, although I've still had 5 medical appointments in the past 2 weeks.
One was with a psychiatrist assigned to the cancer unit at UVM Medical Center. He manages a couple medicines for me - medicines that help me mentally to deal with disease that is trying to kill me.
One was with a therapist who I see regularly. She only sees cancer patients, and her presence in my life is impossible to measure. There are things you deal with when you have cancer that are too much to even put on a spouse. Sometimes, I just need to vent. Sometimes, I need help on how to communicate effectively with someone in my life. She is always there to listen. Mostly to listen, but she also offers up great nuggets of wisdom at times.
I have a chemo port and it needs to be flushed periodically. That was last Friday. This is just done to prevent clots from forming around the lines from the port.
I had to see my primary care provider, who takes care of most of my medications, including pain meds. A new VT law requires that I see her every 90 days now, instead of the six month schedule we had been using. So, that appointment was required by law if I want to continue using pain meds.
And, my physical therapist, who is coming back from two knee injuries, saw me yesterday. She is just starting to ease back into work, and I was her first patient on her path back. I mostly wanted to talk and not put too much stress on her after all that she has been through. She is a top level athlete in her own right, and this major knee injury has been a terrible thing for her. Having had an ACL replaced (her injury was much more extensive than mine), I've been trying to be a supportive friend. But, it was also nice to know that she's on the comeback trail and is up to seeing patients again. I am sore today from the work she put me through yesterday, so I'm sure she hit the right spots.
I'm sure I'm a complicated case for her. There just aren't many people walking around who have lost most of a core stabilizing muscle, so there are not really any fixed protocols for making this better. She's making up a lot as we go along, based on how my work in the gym is going and how I perceive the work she gives me to be helping.
But, she's a Ph.D Physical Therapist, a smart lady, and an athlete herself. I couldn't have a better PT.
On another note, my all time record for most CF workouts in a month is 18. This month has 31 days and only 8 weekend days. I rarely do CF on the weekends, so months with 5 weekends usually see me with a lower number of CF days.
So far this month, even though I've really just returned to CF, I've done 13 CF workouts already. Today is a rest day, but I'll get number 14 on Friday.
Then, I would need four more in the last 6 days of the month to tie my all time record. Regretfully, I have a concert next Monday and plans next Thursday, so even if I go this coming Saturday morning, a rarity for me, it looks like I'll only get to 17 days. Still, 16 or 17 days in August, after major abdominal surgery in June, makes me pretty happy.
My goal, as I returned, was to use a 50%, 60%, 70%, ..., 100% rule. My first week, I tried to use 50% of the prescribe weight and in some cases, 50% of the prescribed reps. Each week, I'm trying to do a few more reps and a higher weight. I'm currently in the 90% week, but last night, I didn't really do 90%. It was a really tough workout:
In 10 minutes:
Run 800 meters
50 wall balls
short rest
5 heavy push presses
In 10 minutes:
Run 800 meters
50 kettlebell swings
short rest
5 heavy push presses
In 10 minutes:
Run 800 meters
50 box jump overs
short rest
5 heavy push presses
In 10 minutes:
Run 800 meters
50 push-ups
short rest
5 heavy push presses
Our Wednesday workouts have been really tough recently, and this one was no exception. Running has been especially difficult for me on two fronts. First, I have a lot of pain when running, even though I'm wearing compression shirts to "hold everything together". I have some problems bringing my legs through, and catching my feet on the ground. I'm always afraid I'm going to trip if I don't . This is all tied to losing so much of psoas muscle, and I have to be very aware of every single step when running so I don't trip over my own feet. This is such a change from the days when I could mindlessly crank out a 30 mile training run, and feel fine for the rest of the day.
Also, during chemo in the spring, I was anemic, and my ability to do aerobic work suffered. Then, I had two months off after surgery. So, over a period of six months, my aerobic capacity dropped to perhaps its lowest point in the past 35 years. It's getting better slowly, but I'm in woefully bad shape at the moment. My strength work is a struggle, but nothing like the struggle I face as my heart rate gets pushed up.
Each week is getting better though. A few weeks ago, on a set of 3x400 meters, with some other work mixed in, I had to walk part of every single 400. Last night, I opted for 600s rather than 800s. Not 90%, but it turned out to be a good choice. On the first three, I ran (slowly) every step of the way. On the fourth, I walked the last 50 meters. On that rep, every person running 800 meters finished before I could finish 600. But, it's getting better, so I'll take that.
On the second movement in each round, I opted for 40 reps instead of 50. Again, not 90%, but this was the correct scaling. On the push presses, I picked a weight that I knew would be challenging on the first set, and really difficult by the last set.
The sets progressed as I expected. I was glad to do wall balls first. They were the toughest of the four high-rep movements. I finished all the work in the first round in about 7:30 and I got to rest for the remaining time.
In the second round, my 600m run was about the same time, the kettlebell swings were faster than wall balls, and I got about 3:00 of rest.
In the third round, my running began to slow. Suddenly, I was last of the entire class. In the first two rounds, I had been slightly ahead of a couple people, but not many. For the box jump-overs, I did step-overs - stepping on the box and then over it. The pain in my stomach is really limiting 4 standard CF movements - running, rope jumping, box jumps, and burpees. I noticed this week that rope jumping has improved, so that one is now less of an issue. Running is getting better. Burpees and box jumps are lagging. Box jumps are the only movement that I was doing previously that I'm not yet doing at all.
In the final round, the wheels kind of fell off. On the run, I was absurdly slow. I walked the last 50 meters. Compared to two weeks ago, the running was a major victory. Including the warm-up and my scaling, I had 2600 meters of running last night, and I ran (slowly, but it was running) all but 50 meters. Two weeks ago, going 400 meters without walking was nearly impossible. So, even though the wheels were falling off, it's still an improvement.
The push-ups were brutal. I think I started with 8. Then 5. Then 4. After that, I did mini-sets of 2-4 with rest in between. I got to 35 before I was forced to go to singles. The last 5 were all done as single reps with rest. At that point, I had used 8:50 of my 10:00. I decided that my best chance of finishing the push presses under the 10:00 mark was to wait until I had 30 seconds left, and try to complete them all in that time frame. I made it with about 5 seconds to spare.
I had gone into the workout sore and tired from Monday and Tuesday. I felt some fatigue from my PT session as well - just some isolated muscle fatigue that affected a few things, running included. I think I scaled it perfectly. I was really hard, but it was manageable.
CrossFit truly is infinitely scalable.
After Friday, I will be done with my 5th week of my comeback. In some ways, I'm disappointed. I don't think I realized how much fitness I had lost during chemo. In my first chemo, I was hospitalized for a four day infusion. Then, I could only walk for the next 5 days or so. But, after that, I had 10-11 days where I could train hard. I didn't lose much fitness during the four rounds of that chemo.
The chemo this spring was six rounds. The acute symptoms right around the infusion were less severe than the previous chemo. But, the cumulative fatigue was far worse, and I lost more fitness than I realized during the three months of that chemo and the time period after chemo when I was still recovering.
Even now, almost 4 months after the chemo ended, I am still dealing with some side effects. I'm convinced that the chemo made my recovery from surgery more difficult.
But, in the immortal words of Jim Valvano, "Never quit, never surrender". That's my attitude.
And, my friends at the gym have been great. I've been frustrated a lot. When you have a back squat PR of 375 (done since I turned 50), and you are squatting 95 pounds, it feels pretty pathetic. When you have a lifetime PR of 2:21 for 800 meters and you can't even run that far unbroken right now, it feels kind of depressing. But, my friends at the gym remind me that I'm out there and I'm working hard. They remind me that I've been through a lot. My body has been through a lot. I'm a cancer patient and I have a serious disease. They remind me that most people in my situation wouldn't be out there at all, and that every single workout I do is a victory.
At times, it is frustrating. But, I am lucky to have some great friends on my side. Where I see "pathetic", they see "heroic". I don't think either word is really correct, but I'm glad to still be out there. And, I'm especially glad for my friends and my wife, who encourage me on a daily basis. There are a lot of things I can't control right now. I don't like that at all, to be honest. But, I can choose to go to the gym and give the best effort I've got in me. As a lifelong athlete, that's good enough for now.
I'm really enjoying the time away from the hospital, although I've still had 5 medical appointments in the past 2 weeks.
One was with a psychiatrist assigned to the cancer unit at UVM Medical Center. He manages a couple medicines for me - medicines that help me mentally to deal with disease that is trying to kill me.
One was with a therapist who I see regularly. She only sees cancer patients, and her presence in my life is impossible to measure. There are things you deal with when you have cancer that are too much to even put on a spouse. Sometimes, I just need to vent. Sometimes, I need help on how to communicate effectively with someone in my life. She is always there to listen. Mostly to listen, but she also offers up great nuggets of wisdom at times.
I have a chemo port and it needs to be flushed periodically. That was last Friday. This is just done to prevent clots from forming around the lines from the port.
I had to see my primary care provider, who takes care of most of my medications, including pain meds. A new VT law requires that I see her every 90 days now, instead of the six month schedule we had been using. So, that appointment was required by law if I want to continue using pain meds.
And, my physical therapist, who is coming back from two knee injuries, saw me yesterday. She is just starting to ease back into work, and I was her first patient on her path back. I mostly wanted to talk and not put too much stress on her after all that she has been through. She is a top level athlete in her own right, and this major knee injury has been a terrible thing for her. Having had an ACL replaced (her injury was much more extensive than mine), I've been trying to be a supportive friend. But, it was also nice to know that she's on the comeback trail and is up to seeing patients again. I am sore today from the work she put me through yesterday, so I'm sure she hit the right spots.
I'm sure I'm a complicated case for her. There just aren't many people walking around who have lost most of a core stabilizing muscle, so there are not really any fixed protocols for making this better. She's making up a lot as we go along, based on how my work in the gym is going and how I perceive the work she gives me to be helping.
But, she's a Ph.D Physical Therapist, a smart lady, and an athlete herself. I couldn't have a better PT.
On another note, my all time record for most CF workouts in a month is 18. This month has 31 days and only 8 weekend days. I rarely do CF on the weekends, so months with 5 weekends usually see me with a lower number of CF days.
So far this month, even though I've really just returned to CF, I've done 13 CF workouts already. Today is a rest day, but I'll get number 14 on Friday.
Then, I would need four more in the last 6 days of the month to tie my all time record. Regretfully, I have a concert next Monday and plans next Thursday, so even if I go this coming Saturday morning, a rarity for me, it looks like I'll only get to 17 days. Still, 16 or 17 days in August, after major abdominal surgery in June, makes me pretty happy.
My goal, as I returned, was to use a 50%, 60%, 70%, ..., 100% rule. My first week, I tried to use 50% of the prescribe weight and in some cases, 50% of the prescribed reps. Each week, I'm trying to do a few more reps and a higher weight. I'm currently in the 90% week, but last night, I didn't really do 90%. It was a really tough workout:
In 10 minutes:
Run 800 meters
50 wall balls
short rest
5 heavy push presses
In 10 minutes:
Run 800 meters
50 kettlebell swings
short rest
5 heavy push presses
In 10 minutes:
Run 800 meters
50 box jump overs
short rest
5 heavy push presses
In 10 minutes:
Run 800 meters
50 push-ups
short rest
5 heavy push presses
Our Wednesday workouts have been really tough recently, and this one was no exception. Running has been especially difficult for me on two fronts. First, I have a lot of pain when running, even though I'm wearing compression shirts to "hold everything together". I have some problems bringing my legs through, and catching my feet on the ground. I'm always afraid I'm going to trip if I don't . This is all tied to losing so much of psoas muscle, and I have to be very aware of every single step when running so I don't trip over my own feet. This is such a change from the days when I could mindlessly crank out a 30 mile training run, and feel fine for the rest of the day.
Also, during chemo in the spring, I was anemic, and my ability to do aerobic work suffered. Then, I had two months off after surgery. So, over a period of six months, my aerobic capacity dropped to perhaps its lowest point in the past 35 years. It's getting better slowly, but I'm in woefully bad shape at the moment. My strength work is a struggle, but nothing like the struggle I face as my heart rate gets pushed up.
Each week is getting better though. A few weeks ago, on a set of 3x400 meters, with some other work mixed in, I had to walk part of every single 400. Last night, I opted for 600s rather than 800s. Not 90%, but it turned out to be a good choice. On the first three, I ran (slowly) every step of the way. On the fourth, I walked the last 50 meters. On that rep, every person running 800 meters finished before I could finish 600. But, it's getting better, so I'll take that.
On the second movement in each round, I opted for 40 reps instead of 50. Again, not 90%, but this was the correct scaling. On the push presses, I picked a weight that I knew would be challenging on the first set, and really difficult by the last set.
The sets progressed as I expected. I was glad to do wall balls first. They were the toughest of the four high-rep movements. I finished all the work in the first round in about 7:30 and I got to rest for the remaining time.
In the second round, my 600m run was about the same time, the kettlebell swings were faster than wall balls, and I got about 3:00 of rest.
In the third round, my running began to slow. Suddenly, I was last of the entire class. In the first two rounds, I had been slightly ahead of a couple people, but not many. For the box jump-overs, I did step-overs - stepping on the box and then over it. The pain in my stomach is really limiting 4 standard CF movements - running, rope jumping, box jumps, and burpees. I noticed this week that rope jumping has improved, so that one is now less of an issue. Running is getting better. Burpees and box jumps are lagging. Box jumps are the only movement that I was doing previously that I'm not yet doing at all.
In the final round, the wheels kind of fell off. On the run, I was absurdly slow. I walked the last 50 meters. Compared to two weeks ago, the running was a major victory. Including the warm-up and my scaling, I had 2600 meters of running last night, and I ran (slowly, but it was running) all but 50 meters. Two weeks ago, going 400 meters without walking was nearly impossible. So, even though the wheels were falling off, it's still an improvement.
The push-ups were brutal. I think I started with 8. Then 5. Then 4. After that, I did mini-sets of 2-4 with rest in between. I got to 35 before I was forced to go to singles. The last 5 were all done as single reps with rest. At that point, I had used 8:50 of my 10:00. I decided that my best chance of finishing the push presses under the 10:00 mark was to wait until I had 30 seconds left, and try to complete them all in that time frame. I made it with about 5 seconds to spare.
I had gone into the workout sore and tired from Monday and Tuesday. I felt some fatigue from my PT session as well - just some isolated muscle fatigue that affected a few things, running included. I think I scaled it perfectly. I was really hard, but it was manageable.
CrossFit truly is infinitely scalable.
After Friday, I will be done with my 5th week of my comeback. In some ways, I'm disappointed. I don't think I realized how much fitness I had lost during chemo. In my first chemo, I was hospitalized for a four day infusion. Then, I could only walk for the next 5 days or so. But, after that, I had 10-11 days where I could train hard. I didn't lose much fitness during the four rounds of that chemo.
The chemo this spring was six rounds. The acute symptoms right around the infusion were less severe than the previous chemo. But, the cumulative fatigue was far worse, and I lost more fitness than I realized during the three months of that chemo and the time period after chemo when I was still recovering.
Even now, almost 4 months after the chemo ended, I am still dealing with some side effects. I'm convinced that the chemo made my recovery from surgery more difficult.
But, in the immortal words of Jim Valvano, "Never quit, never surrender". That's my attitude.
And, my friends at the gym have been great. I've been frustrated a lot. When you have a back squat PR of 375 (done since I turned 50), and you are squatting 95 pounds, it feels pretty pathetic. When you have a lifetime PR of 2:21 for 800 meters and you can't even run that far unbroken right now, it feels kind of depressing. But, my friends at the gym remind me that I'm out there and I'm working hard. They remind me that I've been through a lot. My body has been through a lot. I'm a cancer patient and I have a serious disease. They remind me that most people in my situation wouldn't be out there at all, and that every single workout I do is a victory.
At times, it is frustrating. But, I am lucky to have some great friends on my side. Where I see "pathetic", they see "heroic". I don't think either word is really correct, but I'm glad to still be out there. And, I'm especially glad for my friends and my wife, who encourage me on a daily basis. There are a lot of things I can't control right now. I don't like that at all, to be honest. But, I can choose to go to the gym and give the best effort I've got in me. As a lifelong athlete, that's good enough for now.
Wednesday, August 16, 2017
Improving Week by Week
OK, first the obligatory whining. It's always something. I have noticed in my workouts the past couple weeks that running is somewhat painful. It seems to be in the area where my psoas muscle was removed. Wearing high quality compression gear doesn't seem to help like it did before my latest surgery.
Monday night's workout had 3 x 400m runs as part of the workout, and by the third 400, I was reduced to walking part of it due to pain. I told my wife that I'm really glad right now that I don't consider myself to be an ultrarunner any more. If so, this pain would be a lot more worrisome.
Also, I'm still less than 10 weeks removed from major abdominal surgery. I'm still healing.
And, my favorite physical therapist is on the DL, after two knee surgeries. She helped me with rehab after the first surgery that removed some of the psoas. I'm sure she could help me this time, but she's not working right now. Hopefully, she will be back at work fairly soon.
But, other than that issue, things are going well.
My first week at CrossFit, I accidentally trashed my legs so badly that I could barely walk for a week. The next week, I had to change the workout on Monday to avoid squats, but I made it to the gym 4 times that week. My plan was no more than 3x per week until at least September.
Last week, I made it 4 times again. I've been doing Olympic lifting twice per week, which is huge for me. For a while, I'd sort of backed off on Oly lifting. Mobility issues were limiting my progress, and I injured my shoulder doing snatches a few years ago. Fear of re-injuring the shoulder led to me limiting what I did, rather than adapting by changing the amount of weight on the bar.
This time, I'm keeping the weights light, and treating it as a cross between mobility work and strength work. I'm doing the Oly lifts fairly lightly, but it's heavy enough to create some stimulus. And, when it comes time to do full depth snatches, overhead squats, or split jerks, I'm not backing down. I'm doing the movements as written by the coach.
Currently, I've done 11 CrossFit workouts in the past 23 days, which is about average for me when I'm healthy. I try to average 3-4 days per week. I usually end up averaging 3 days per week for the entire year, but I have plenty of weeks where I'm there 4 times.
I am going to miss 2 days this week due to a day off work tomorrow and a trip out of town. But, everything is moving in the right direction. I'm sore and I'm tired, and I have some pain, but I'm not hurt.
Each week seems better than the last.
It is a bit frustrating to finish last in every single workout. That's just where I am right now. I'm older than most people in the gym. I missed almost two entire months after surgery. I had cut back on workout intensity for a few months before surgery due to side effects from chemo. So, I'm older than most, I'm a cancer patient, my workouts have been limited, and I'm finishing last in the workouts.
People in the gym aren't having any of my whining. They think I'm a hero just for being there after all I've been through. They see me working hard, and that's good enough for them. I have to let it be good enough for me as well.
The same attitude that carried me through so many marathons and ultras is now carrying me through this. I'm just not ready to quit yet. I still have so many things I'd like to accomplish, and my training in the gym is essential to most everything else I want to do with my life.
Monday night's workout had 3 x 400m runs as part of the workout, and by the third 400, I was reduced to walking part of it due to pain. I told my wife that I'm really glad right now that I don't consider myself to be an ultrarunner any more. If so, this pain would be a lot more worrisome.
Also, I'm still less than 10 weeks removed from major abdominal surgery. I'm still healing.
And, my favorite physical therapist is on the DL, after two knee surgeries. She helped me with rehab after the first surgery that removed some of the psoas. I'm sure she could help me this time, but she's not working right now. Hopefully, she will be back at work fairly soon.
But, other than that issue, things are going well.
My first week at CrossFit, I accidentally trashed my legs so badly that I could barely walk for a week. The next week, I had to change the workout on Monday to avoid squats, but I made it to the gym 4 times that week. My plan was no more than 3x per week until at least September.
Last week, I made it 4 times again. I've been doing Olympic lifting twice per week, which is huge for me. For a while, I'd sort of backed off on Oly lifting. Mobility issues were limiting my progress, and I injured my shoulder doing snatches a few years ago. Fear of re-injuring the shoulder led to me limiting what I did, rather than adapting by changing the amount of weight on the bar.
This time, I'm keeping the weights light, and treating it as a cross between mobility work and strength work. I'm doing the Oly lifts fairly lightly, but it's heavy enough to create some stimulus. And, when it comes time to do full depth snatches, overhead squats, or split jerks, I'm not backing down. I'm doing the movements as written by the coach.
Currently, I've done 11 CrossFit workouts in the past 23 days, which is about average for me when I'm healthy. I try to average 3-4 days per week. I usually end up averaging 3 days per week for the entire year, but I have plenty of weeks where I'm there 4 times.
I am going to miss 2 days this week due to a day off work tomorrow and a trip out of town. But, everything is moving in the right direction. I'm sore and I'm tired, and I have some pain, but I'm not hurt.
Each week seems better than the last.
It is a bit frustrating to finish last in every single workout. That's just where I am right now. I'm older than most people in the gym. I missed almost two entire months after surgery. I had cut back on workout intensity for a few months before surgery due to side effects from chemo. So, I'm older than most, I'm a cancer patient, my workouts have been limited, and I'm finishing last in the workouts.
People in the gym aren't having any of my whining. They think I'm a hero just for being there after all I've been through. They see me working hard, and that's good enough for them. I have to let it be good enough for me as well.
The same attitude that carried me through so many marathons and ultras is now carrying me through this. I'm just not ready to quit yet. I still have so many things I'd like to accomplish, and my training in the gym is essential to most everything else I want to do with my life.
Monday, August 7, 2017
How did that happen?
Last week was week #2 in my return to CrossFit. My plan was to go on Monday, Wednesday and Friday, and to go at about 60% effort.
On Monday, because of a squat workout the previous Monday, my hamstrings were very tender. I thought I was at risk of pulling a hamstring if I squatted, so I did bench presses instead. Then, there were burpees in the main workout, and I'm not quite ready for them either. So, I improvised and did 3 rounds of run 400 meters followed by 10 push-ups. I have run very little since my surgery and it's still uncomfortable, but I need to just do it. I bought some new compression shirts last week, and I'm hoping they will help with running, and make box jumps and burpees possible again.
I was going to skip Tuesday, but somehow, I ended up at the gym and decided to do the workout. We started out with a 21 minute "every minute on the minute" snatch and overhead squat work. We did three different complexes, each one 7 times. I kept the weight light and got through it OK. Then we did 10 minutes of air squats, knee-ups, and dumbells from the shoulder to overhead.
Wednesday, I was back again. It was our wedding anniversary and we had a dinner reservation, so we went to the earlier class than normal, and it was hot. We were working out in some of the worst heat of the day.
This workout, despite the fact that I scaled it quite a bit, was simply one of the toughest workouts I've ever done at CrossFit. Every five minutes, I ran 200 meters, did 3 pull-ups, 6 push-ups, 9 air squats and 5 barbell push presses. I then got to rest for the remainder of the 5 minutes. In the first round, the work took me 3 minutes and I rested for 2. But, I got slower each round and it took me 4 minutes to do the work in the last round.
But, we weren't done there. At the 30 minute mark, we started an up ladder of kettlebell swings and box jumps (I did box step-ups). It was 3 reps of each the first round, then 6, 9, etc. I was so exhausted from the first 30 minutes that I simply could not go straight through. I saw some really strong athletes resting during this part of the workout, so I didn't feel too bad. But, it took a lot out of me.
On Thursday, thankfully, we took a rest day.
On Friday, we did clean and jerk complexes, similar to Tuesday, in an EMOTM style. Then, 8 minutes of rope jumping and wall balls. By the time we finished, the fatigue from the week was pretty intense.
On Saturday, my wife and I got to the farmer's market early. We shopped there, hit the supermarket, and once we got home, I spent the entire day cooking a nice meal as a belated anniversary dinner. We had gone out for dinner on our anniversary, but the meal was disappointing. So, I wanted to make up for that.
I had some really nice wines planned for dinner, but the entire week kind of caught up with me by the time I was done cooking. I had been trying to stay away from pain medicine, not wanting to mix pain meds and alcohol, but eventually, the effort of the day was too much, and I needed some pain meds. I had a little bit of wine, and my wife enjoyed some, but we never got around to opening the bottle I really wanted to drink - an Hermitage La Chapelle from 1990. So, we saved that one for another day.
I was much happier before this cancer stuff, when I took no pain meds and I could have a drink without having to worry about the two interacting. I simply need to be more careful these days, and I need to accept that my body can't do right now what it could do 3 years ago. If I'm lucky with my next few scans and I keep working hard in the gym, maybe I can reverse some of this.
On Monday, because of a squat workout the previous Monday, my hamstrings were very tender. I thought I was at risk of pulling a hamstring if I squatted, so I did bench presses instead. Then, there were burpees in the main workout, and I'm not quite ready for them either. So, I improvised and did 3 rounds of run 400 meters followed by 10 push-ups. I have run very little since my surgery and it's still uncomfortable, but I need to just do it. I bought some new compression shirts last week, and I'm hoping they will help with running, and make box jumps and burpees possible again.
I was going to skip Tuesday, but somehow, I ended up at the gym and decided to do the workout. We started out with a 21 minute "every minute on the minute" snatch and overhead squat work. We did three different complexes, each one 7 times. I kept the weight light and got through it OK. Then we did 10 minutes of air squats, knee-ups, and dumbells from the shoulder to overhead.
Wednesday, I was back again. It was our wedding anniversary and we had a dinner reservation, so we went to the earlier class than normal, and it was hot. We were working out in some of the worst heat of the day.
This workout, despite the fact that I scaled it quite a bit, was simply one of the toughest workouts I've ever done at CrossFit. Every five minutes, I ran 200 meters, did 3 pull-ups, 6 push-ups, 9 air squats and 5 barbell push presses. I then got to rest for the remainder of the 5 minutes. In the first round, the work took me 3 minutes and I rested for 2. But, I got slower each round and it took me 4 minutes to do the work in the last round.
But, we weren't done there. At the 30 minute mark, we started an up ladder of kettlebell swings and box jumps (I did box step-ups). It was 3 reps of each the first round, then 6, 9, etc. I was so exhausted from the first 30 minutes that I simply could not go straight through. I saw some really strong athletes resting during this part of the workout, so I didn't feel too bad. But, it took a lot out of me.
On Thursday, thankfully, we took a rest day.
On Friday, we did clean and jerk complexes, similar to Tuesday, in an EMOTM style. Then, 8 minutes of rope jumping and wall balls. By the time we finished, the fatigue from the week was pretty intense.
On Saturday, my wife and I got to the farmer's market early. We shopped there, hit the supermarket, and once we got home, I spent the entire day cooking a nice meal as a belated anniversary dinner. We had gone out for dinner on our anniversary, but the meal was disappointing. So, I wanted to make up for that.
I had some really nice wines planned for dinner, but the entire week kind of caught up with me by the time I was done cooking. I had been trying to stay away from pain medicine, not wanting to mix pain meds and alcohol, but eventually, the effort of the day was too much, and I needed some pain meds. I had a little bit of wine, and my wife enjoyed some, but we never got around to opening the bottle I really wanted to drink - an Hermitage La Chapelle from 1990. So, we saved that one for another day.
I was much happier before this cancer stuff, when I took no pain meds and I could have a drink without having to worry about the two interacting. I simply need to be more careful these days, and I need to accept that my body can't do right now what it could do 3 years ago. If I'm lucky with my next few scans and I keep working hard in the gym, maybe I can reverse some of this.
Monday, July 31, 2017
And now, it's been a week
It's been a week since the CrossFit workout that nearly crippled me. Yesterday, while mowing the lawn, my left hamstring was still screaming in pain.
Later in the day, I went fishing, and I dropped an expensive box of flies in the river by accident. I had to put down my rod and run 200 yards downstream to a slow spot to attempt to rescue the flies. The box itself plus the flies it contained, was worth close to $400, so it had to be saved. Amazingly, my hamstring did not complain when I was running over small rounded boulders for a minute or so.
But, today is squat day again. And, the workout includes running. And burpees. I honestly don't think I can squat yet. I might be able to jog. Burpees are possible, but honestly, they will hurt. My abdomen is simply not healed enough to do burpees without actual pain. Not the normal burpee pain, but real pain.
So, I'm not sure what I can do tonight. It's amazing to believe that a week later, a single workout still has me incapable of doing another. And, I'm afraid that if I do try it, I may end up like last week.
We will see. I still have five hours to decide if I want to give it a try, just do something completely different (bench presses won't hurt my hamstrings), or just go for a walk.
I'm leaning towards giving it a try, which pretty much proves that I'm an idiot.
Later in the day, I went fishing, and I dropped an expensive box of flies in the river by accident. I had to put down my rod and run 200 yards downstream to a slow spot to attempt to rescue the flies. The box itself plus the flies it contained, was worth close to $400, so it had to be saved. Amazingly, my hamstring did not complain when I was running over small rounded boulders for a minute or so.
But, today is squat day again. And, the workout includes running. And burpees. I honestly don't think I can squat yet. I might be able to jog. Burpees are possible, but honestly, they will hurt. My abdomen is simply not healed enough to do burpees without actual pain. Not the normal burpee pain, but real pain.
So, I'm not sure what I can do tonight. It's amazing to believe that a week later, a single workout still has me incapable of doing another. And, I'm afraid that if I do try it, I may end up like last week.
We will see. I still have five hours to decide if I want to give it a try, just do something completely different (bench presses won't hurt my hamstrings), or just go for a walk.
I'm leaning towards giving it a try, which pretty much proves that I'm an idiot.
Friday, July 28, 2017
Ouch!
I have done some crazy athletic events in my life. Long triathlons, ultramarathons, long solo mountain hikes, etc.
Squatting on Monday has left me more sore and incapacitated than any of those events ever did. I squatted 25% of my lifetime best, and four days later, I can barely walk.
I did 5x7 squats at 85# and 95# on Monday. On Tuesday, I was a bit sore, but I walked 3 miles. I'd been planning that instead of CrossFit. I'm not planning to do CF on back to back days until early September or so.
Tuesday night, while sleeping, I woke up to go to the bathroom. I couldn't believe how much more sore I was. My upper hamstrings were on fire. Getting in and out of the bed was very difficult. Getting into the car to go to work was horrible. And, while this may be TMI, most lifters can tell you that getting onto and off of a toilet seat can be excruciating after a tough squat session. On Wednesday, my wife skipped CF, so I had an easy out to skip exercise.
And, Wednesday was the second day after the squats, the DOMS (delayed onset muscle soreness) is often worse the second day. So, I thought I'd be fine after that day.
By Thursday morning, things were worse. I could barely walk. My hamstrings would seize up randomly, and despite some big doses of Tylenol, I got no relief. I'm not allowed to take NSAIDs, so that wasn't an option. My wife went to CF on Thursday night, so I decided to go for a walk. Five minutes into my walk, I was really struggling. But, it started to rain, so I used that as an excuse to bail on the walk. Let's just pretend that there really isn't a treadmill at the gym, because that's what I did.
This morning, things are different. The soreness has moved down to the middle of my hamstrings. Well, the tops of the hamstrings are still sore, so we've just added a new issue. I had to drive our car in stop and go traffic this morning, and it's a standard transmission. My left hamstring kept seizing up on me every time I used the clutch. It's continued to seize up all morning at work - left and right.
So, it's now been almost 96 hours since I squatted, and I'm still incapacitated. There is no way I can do CF tonight.
I'm guessing that by Monday, I'll be able to do CF again. It will be squat day. I wonder how many days of rest it will take to recover from that day.
It's kind of funny, actually. I expected this to some level after not squatting for two months. But, I went ridiculously easy for me, and it still crippled me. It could easily take a month before squat night doesn't inflame my hamstrings.
I said I wanted to ease back into CF, but I didn't expect it would be just one workout this week.
Hopefully, I'll get some good hiking or biking in this weekend.
Squatting on Monday has left me more sore and incapacitated than any of those events ever did. I squatted 25% of my lifetime best, and four days later, I can barely walk.
I did 5x7 squats at 85# and 95# on Monday. On Tuesday, I was a bit sore, but I walked 3 miles. I'd been planning that instead of CrossFit. I'm not planning to do CF on back to back days until early September or so.
Tuesday night, while sleeping, I woke up to go to the bathroom. I couldn't believe how much more sore I was. My upper hamstrings were on fire. Getting in and out of the bed was very difficult. Getting into the car to go to work was horrible. And, while this may be TMI, most lifters can tell you that getting onto and off of a toilet seat can be excruciating after a tough squat session. On Wednesday, my wife skipped CF, so I had an easy out to skip exercise.
And, Wednesday was the second day after the squats, the DOMS (delayed onset muscle soreness) is often worse the second day. So, I thought I'd be fine after that day.
By Thursday morning, things were worse. I could barely walk. My hamstrings would seize up randomly, and despite some big doses of Tylenol, I got no relief. I'm not allowed to take NSAIDs, so that wasn't an option. My wife went to CF on Thursday night, so I decided to go for a walk. Five minutes into my walk, I was really struggling. But, it started to rain, so I used that as an excuse to bail on the walk. Let's just pretend that there really isn't a treadmill at the gym, because that's what I did.
This morning, things are different. The soreness has moved down to the middle of my hamstrings. Well, the tops of the hamstrings are still sore, so we've just added a new issue. I had to drive our car in stop and go traffic this morning, and it's a standard transmission. My left hamstring kept seizing up on me every time I used the clutch. It's continued to seize up all morning at work - left and right.
So, it's now been almost 96 hours since I squatted, and I'm still incapacitated. There is no way I can do CF tonight.
I'm guessing that by Monday, I'll be able to do CF again. It will be squat day. I wonder how many days of rest it will take to recover from that day.
It's kind of funny, actually. I expected this to some level after not squatting for two months. But, I went ridiculously easy for me, and it still crippled me. It could easily take a month before squat night doesn't inflame my hamstrings.
I said I wanted to ease back into CF, but I didn't expect it would be just one workout this week.
Hopefully, I'll get some good hiking or biking in this weekend.
Tuesday, July 25, 2017
CrossFit
The things I complain about week after week continue to improve. I'm getting by on less and less sleep, although I feel like I could always use more. I am still taking naps at times. My appetite continues to improve and is pretty close to normal. I still have some night sweats, but they seem to be getting better as well.
But, the thing I'm most excited about is going to CrossFit yesterday. Ideally, I should have waited until 2 full months after my surgery, so I'm technically about 2 weeks early. There are clearly some things I still am not ready to do (box jumps, burpees, etc.), but I feel I can do most of the movements, with light weight.
I also do the workouts in compression shirts at times. After losing some of my psoas major muscle in my previous surgery, the shirts seem to help with overall core stability. After losing more of that muscle in the latest surgery, I ordered two more compression shirts yesterday. I think I'm simply going to need them all the time for CrossFit, moving forward.
Last night we started with 5x7 back squats. I knew that after not squatting for 8 weeks, I was going to end up being sore today no matter what weight I chose. I chose very light weights (85 and 95 - about 25% of my lifetime best), and I'm still sore today. Oh well.
Next, we had reverse lunges with 2 barbells in the rack position. I completely skipped this segment of the workout. If I hadn't, I probably wouldn't be able to walk today.
Then, a 10 minute up ladder of 3 med balls over the shoulder (50# ball) and 20 rope jumping reps. The second round is 6 and 40, then 9 and 60, etc. I completed four rounds, 15 more balls over the shoulder, and 33 rope jumps. I have no idea how that compares to anyone else. I was just glad to be there.
My basic goal is to only do CF on MWF for a few weeks. I don't want to do 2 days in a row for a while. I'm also roughly targeting to do a 50% effort this week, (hence the skipped lunges and the slow, steady pace for the second half of the workout), 60% next week, then increasing by about 10% per week until I'm back to going hard. That should take me until the first week of September or so.
Today is a rainy day, so while my wife does CF tonight, I'll walk on the treadmill. I haven't even looked at the workout for today, but I know I don't want to do it.
But, the thing I'm most excited about is going to CrossFit yesterday. Ideally, I should have waited until 2 full months after my surgery, so I'm technically about 2 weeks early. There are clearly some things I still am not ready to do (box jumps, burpees, etc.), but I feel I can do most of the movements, with light weight.
I also do the workouts in compression shirts at times. After losing some of my psoas major muscle in my previous surgery, the shirts seem to help with overall core stability. After losing more of that muscle in the latest surgery, I ordered two more compression shirts yesterday. I think I'm simply going to need them all the time for CrossFit, moving forward.
Last night we started with 5x7 back squats. I knew that after not squatting for 8 weeks, I was going to end up being sore today no matter what weight I chose. I chose very light weights (85 and 95 - about 25% of my lifetime best), and I'm still sore today. Oh well.
Next, we had reverse lunges with 2 barbells in the rack position. I completely skipped this segment of the workout. If I hadn't, I probably wouldn't be able to walk today.
Then, a 10 minute up ladder of 3 med balls over the shoulder (50# ball) and 20 rope jumping reps. The second round is 6 and 40, then 9 and 60, etc. I completed four rounds, 15 more balls over the shoulder, and 33 rope jumps. I have no idea how that compares to anyone else. I was just glad to be there.
My basic goal is to only do CF on MWF for a few weeks. I don't want to do 2 days in a row for a while. I'm also roughly targeting to do a 50% effort this week, (hence the skipped lunges and the slow, steady pace for the second half of the workout), 60% next week, then increasing by about 10% per week until I'm back to going hard. That should take me until the first week of September or so.
Today is a rainy day, so while my wife does CF tonight, I'll walk on the treadmill. I haven't even looked at the workout for today, but I know I don't want to do it.
Monday, July 17, 2017
Update
I listed four key problems in my last post. Four things where I really wanted to see some improvement.
First was my appetite. In the past week, I have been eating more real food and relying less on shakes made with ice cream and Ensure. I will admit that certain foods, especially cooked veggies, still aren't very appetizing. But, proteins, some carbs, and salads all seem to be going down better. On Saturday, we went to a concert in Boston and visited a fantastic restaurant called Row 34 for a late lunch.
My wife and I shared 18 oysters, I ate a very rich lobster roll, and I even helped my son finish his fish and chips. Plus, I had a glass of wine - my first adult beverage since surgery. While the food did seem very rich, it went down just fine and it was nice to eat such a high quality meal. Of course, if you pay close attention, I had no cooked veggies.
Sunday for lunch, I went to Shake Shack beside our hotel and had a shake and a burger. I wasn't surprised at all that this went down just fine.
Secondly, I was complaining about how much I was sleeping, with some nights being 14-16 hours of sleep. I did sleep 10.5 hours on Saturday night, and would have slept later but the hotel had a checkout time. And, I did take a 3+ hour nap that afternoon. But, I am not sleeping as much during our commute. I stayed awake the entire drive this morning. Getting out of bed for work is getting easier. And, my total sleep time is decreasing, although I was over 8 hours every night for the past 10.
Thirdly, I complained about lack of desire to exercise. Last week, I just started forcing myself to get out and at least go for a walk. I walked 5 of 7 days leading into this weekend, and then walked quite a bit in Boston on Saturday. I have to admit that my back is a bit sore when walking and I'm hoping that will improve as soon as I start lifting. It is still my goal to resume CrossFit a week from today on 7/24.
Lastly, I had complained about night sweats. They are markedly better. I think I've gone four nights in a row right now without changing my pajamas. I was sweating a bit last night, but it honestly wasn't too bad. Hopefully, this trend will continue.
So, I'm making progress in all four areas where I said I needed to do so a week ago. That's good news.
On the other hand, I got my post-op pathology report on Friday and that wasn't such good news. The chemos I've done have had two primary goals. The first has been to shrink tumors to make it easier to remove them. My first chemo did this very well, and the second showed only moderate success. The second goal was for the chemo to kill the more aggressive and dangerous cells in my tumors, hopefully reverting the disease to a less dangerous form. The report I got on Friday showed that this simply isn't the case, and this report showed more aggressive cell types than after my surgery in March of 2016. This is very disheartening, to be honest. I've sent an email to my surgeon's office, trying to get more information from him on what this really means for my prognosis and treatment going forward. I haven't heard anything back yet.
Hopefully, this morning's thunderstorms are over and I'll get to walk while my wife does CrossFit tonight.
First was my appetite. In the past week, I have been eating more real food and relying less on shakes made with ice cream and Ensure. I will admit that certain foods, especially cooked veggies, still aren't very appetizing. But, proteins, some carbs, and salads all seem to be going down better. On Saturday, we went to a concert in Boston and visited a fantastic restaurant called Row 34 for a late lunch.
My wife and I shared 18 oysters, I ate a very rich lobster roll, and I even helped my son finish his fish and chips. Plus, I had a glass of wine - my first adult beverage since surgery. While the food did seem very rich, it went down just fine and it was nice to eat such a high quality meal. Of course, if you pay close attention, I had no cooked veggies.
Sunday for lunch, I went to Shake Shack beside our hotel and had a shake and a burger. I wasn't surprised at all that this went down just fine.
Secondly, I was complaining about how much I was sleeping, with some nights being 14-16 hours of sleep. I did sleep 10.5 hours on Saturday night, and would have slept later but the hotel had a checkout time. And, I did take a 3+ hour nap that afternoon. But, I am not sleeping as much during our commute. I stayed awake the entire drive this morning. Getting out of bed for work is getting easier. And, my total sleep time is decreasing, although I was over 8 hours every night for the past 10.
Thirdly, I complained about lack of desire to exercise. Last week, I just started forcing myself to get out and at least go for a walk. I walked 5 of 7 days leading into this weekend, and then walked quite a bit in Boston on Saturday. I have to admit that my back is a bit sore when walking and I'm hoping that will improve as soon as I start lifting. It is still my goal to resume CrossFit a week from today on 7/24.
Lastly, I had complained about night sweats. They are markedly better. I think I've gone four nights in a row right now without changing my pajamas. I was sweating a bit last night, but it honestly wasn't too bad. Hopefully, this trend will continue.
So, I'm making progress in all four areas where I said I needed to do so a week ago. That's good news.
On the other hand, I got my post-op pathology report on Friday and that wasn't such good news. The chemos I've done have had two primary goals. The first has been to shrink tumors to make it easier to remove them. My first chemo did this very well, and the second showed only moderate success. The second goal was for the chemo to kill the more aggressive and dangerous cells in my tumors, hopefully reverting the disease to a less dangerous form. The report I got on Friday showed that this simply isn't the case, and this report showed more aggressive cell types than after my surgery in March of 2016. This is very disheartening, to be honest. I've sent an email to my surgeon's office, trying to get more information from him on what this really means for my prognosis and treatment going forward. I haven't heard anything back yet.
Hopefully, this morning's thunderstorms are over and I'll get to walk while my wife does CrossFit tonight.
Tuesday, July 11, 2017
Slow and Steady Progress
First, the bad things, some of which are repeats from my last post:
And, while it's not quite the same, I still haven't gotten out fishing. But, that's a combo of fatigue and weather, not just the fatigue. I would have fished this past Sunday if the weather had been better. Part of the fishing is that I either need to fish in very low water flows if I am using any pain medicine at all, or I have to have the strength and ability to fish without pain meds if the water is higher. We just haven't hit the ideal point yet. I'm not willing to risk becoming a drowning statistic because I insisted on wading under the influence of pain meds or in current that was too much for my current strength.
On the other hand, my hair is growing back at a fairly rapid clip. The hair on my head is still pretty thin but growing rapidly. I may need to get my hair trimmed soon. My beard is patchy, but is mostly back. Even those annoying nose hairs are back. I didn't miss them during chemo. Below the neck, body hair is returning, but at a very slow pace. This isn't really an issue or a complaint. I think it tells me that I'm still dealing with some after-effects of the chemo, but those are fading over time.
I am gradually decreasing my pain medicine, which has been a goal. I must admit that where the surgeon removed another good chunk of my right side psoas major muscle, I am having issues. Just a 3 mile walk is simply painful due to this. I am guessing that my baseline after this surgery will be a higher level of pain than before. I'm also afraid that having lost a lot of such a key stabilizer muscle is going to have a profound long term impact on both running and lifting. I can't imagine being able to get my full strength back for hip extension, which is needed for running, the deadlift and the squat. And, I'm guessing that each workout will have me in worse pain now than I was before this latest surgery. But, until I actually pick up a barbell, I can't know for sure.
I hope to get back to CrossFit at a very easy level, in 2 weeks or so. I am already anticipating that the first month or two will be very trying. I'm simply going to be a lot weaker than I was, and this will be frustrating. And, it may be painful. it will certainly be difficult.
As for the bullet points, above, I'm doing my best. I weighed 225 or just a bit higher when I started chemo in February. I got to 215 before surgery. I got home from surgery at about 205 (I still haven't seen the pathology report to know how much the tumors weighed, and that's likely part of the weight loss). But, I've dropped to 195 since getting home. Literally no foods taste good. My oncologists both locally and at Sloan Kettering have given me some tricks to arrest the weight loss. I'm having shakes almost every day made with ice cream and Ensure. That's a fast way to get in 1000 calories. Salads taste OK, so I'm having them and putting a lot of dressing on them. Fruits taste OK, so I'm eating them. But, the everyday meals that I'm cooking (or that my wife is cooking) aren't very appealing. Sometimes, I manage to eat the meal, but sometimes not.
A few people have asked me about medical marijuana and if it's helping me with my appetite. It does help, but to be honest, I'm not using it as much. The extra pain medicine plus the medical MJ are just too much for my brain. I don't want to be that "altered" and when I mix the two, I do end up eating, but I also end up just lying on the couch for hours, which I'd rather not do. I'm hoping that as I continue to decrease the pain meds, I'll take more medical MJ, and that will help with appetite.
I don't know what to do about the sleeping and energy levels. In the past, after surgery or chemo, I was always ready to go for a walk as soon as possible. I needed to do something every day. I just don't feel like that right now. According to my FitBit, I've slept 15 hours or more 4 days in the last 10. I think the smart thing is simply to sleep when my body wants to sleep. I came back to work a lot sooner than most people would have from this surgery, and by the time the work week is over, I think I simply need the rest. So, I'm going with it and hoping it gets better. I'm also sleeping on the way to and from work. That's two hours per day (my wife drives) when I normally work or just surf the web. But now, I'm sleeping. I'm hopeful that as my nutrition improves, my energy levels will improve as well.
As for the walking and other movement, I'm simply forcing myself to do it. I've walked the past 3 days right now. I'm actually a bit sore from it, but I'll probably walk again tonight. I don't see any reason that an easy walk for an hour is going to hurt me. At least, I hope not.
Night sweats really suck. I've tried sleeping with and without the air conditioner and that's made no difference. Twice last night, I woke up and changed my pajamas. When I go to bed each night, I am sure I have 2 spare pairs of pajamas nearby, so I can switch if needed. I'm sure this will pass with time. I think my wife may have joked that it's menopause, which she is regretfully dealing with full on right now. Maybe so...
Lastly, I'm trying to be myself again. I'm a person who prides himself on making his wife laugh. I don't seem to make that happen very often these days. I'm someone who finds pleasure in mundane activities, like shopping for groceries, cooking dinner, or just going out for breakfast with my wife and daughter on the weekends. I'm trying. I really am. I feel like I'm doing better at work, because I feel I need to keep the bosses convinced that I'm OK. Our company is in a funding crunch right now, and I simply cannot appear to be a weak link.
I need to harness some of the energy that my company is getting and give it to my family. My family is more important by far, although I have my reasons for working very hard right now. Finding a new job right now would be very challenging, and I like my current job. So, I don't want there to be any doubt at work that I'm fit and ready to go. As my energy levels return, hopefully, I'll divert more and more of that to my family.
- I still have no appetite
- I have no energy and I'm sleeping 14-16 hours per night on the weekends
- I have very little desire to even go walking, much less any other exercise
- Night sweats are still an issue
And, while it's not quite the same, I still haven't gotten out fishing. But, that's a combo of fatigue and weather, not just the fatigue. I would have fished this past Sunday if the weather had been better. Part of the fishing is that I either need to fish in very low water flows if I am using any pain medicine at all, or I have to have the strength and ability to fish without pain meds if the water is higher. We just haven't hit the ideal point yet. I'm not willing to risk becoming a drowning statistic because I insisted on wading under the influence of pain meds or in current that was too much for my current strength.
On the other hand, my hair is growing back at a fairly rapid clip. The hair on my head is still pretty thin but growing rapidly. I may need to get my hair trimmed soon. My beard is patchy, but is mostly back. Even those annoying nose hairs are back. I didn't miss them during chemo. Below the neck, body hair is returning, but at a very slow pace. This isn't really an issue or a complaint. I think it tells me that I'm still dealing with some after-effects of the chemo, but those are fading over time.
I am gradually decreasing my pain medicine, which has been a goal. I must admit that where the surgeon removed another good chunk of my right side psoas major muscle, I am having issues. Just a 3 mile walk is simply painful due to this. I am guessing that my baseline after this surgery will be a higher level of pain than before. I'm also afraid that having lost a lot of such a key stabilizer muscle is going to have a profound long term impact on both running and lifting. I can't imagine being able to get my full strength back for hip extension, which is needed for running, the deadlift and the squat. And, I'm guessing that each workout will have me in worse pain now than I was before this latest surgery. But, until I actually pick up a barbell, I can't know for sure.
I hope to get back to CrossFit at a very easy level, in 2 weeks or so. I am already anticipating that the first month or two will be very trying. I'm simply going to be a lot weaker than I was, and this will be frustrating. And, it may be painful. it will certainly be difficult.
As for the bullet points, above, I'm doing my best. I weighed 225 or just a bit higher when I started chemo in February. I got to 215 before surgery. I got home from surgery at about 205 (I still haven't seen the pathology report to know how much the tumors weighed, and that's likely part of the weight loss). But, I've dropped to 195 since getting home. Literally no foods taste good. My oncologists both locally and at Sloan Kettering have given me some tricks to arrest the weight loss. I'm having shakes almost every day made with ice cream and Ensure. That's a fast way to get in 1000 calories. Salads taste OK, so I'm having them and putting a lot of dressing on them. Fruits taste OK, so I'm eating them. But, the everyday meals that I'm cooking (or that my wife is cooking) aren't very appealing. Sometimes, I manage to eat the meal, but sometimes not.
A few people have asked me about medical marijuana and if it's helping me with my appetite. It does help, but to be honest, I'm not using it as much. The extra pain medicine plus the medical MJ are just too much for my brain. I don't want to be that "altered" and when I mix the two, I do end up eating, but I also end up just lying on the couch for hours, which I'd rather not do. I'm hoping that as I continue to decrease the pain meds, I'll take more medical MJ, and that will help with appetite.
I don't know what to do about the sleeping and energy levels. In the past, after surgery or chemo, I was always ready to go for a walk as soon as possible. I needed to do something every day. I just don't feel like that right now. According to my FitBit, I've slept 15 hours or more 4 days in the last 10. I think the smart thing is simply to sleep when my body wants to sleep. I came back to work a lot sooner than most people would have from this surgery, and by the time the work week is over, I think I simply need the rest. So, I'm going with it and hoping it gets better. I'm also sleeping on the way to and from work. That's two hours per day (my wife drives) when I normally work or just surf the web. But now, I'm sleeping. I'm hopeful that as my nutrition improves, my energy levels will improve as well.
As for the walking and other movement, I'm simply forcing myself to do it. I've walked the past 3 days right now. I'm actually a bit sore from it, but I'll probably walk again tonight. I don't see any reason that an easy walk for an hour is going to hurt me. At least, I hope not.
Night sweats really suck. I've tried sleeping with and without the air conditioner and that's made no difference. Twice last night, I woke up and changed my pajamas. When I go to bed each night, I am sure I have 2 spare pairs of pajamas nearby, so I can switch if needed. I'm sure this will pass with time. I think my wife may have joked that it's menopause, which she is regretfully dealing with full on right now. Maybe so...
Lastly, I'm trying to be myself again. I'm a person who prides himself on making his wife laugh. I don't seem to make that happen very often these days. I'm someone who finds pleasure in mundane activities, like shopping for groceries, cooking dinner, or just going out for breakfast with my wife and daughter on the weekends. I'm trying. I really am. I feel like I'm doing better at work, because I feel I need to keep the bosses convinced that I'm OK. Our company is in a funding crunch right now, and I simply cannot appear to be a weak link.
I need to harness some of the energy that my company is getting and give it to my family. My family is more important by far, although I have my reasons for working very hard right now. Finding a new job right now would be very challenging, and I like my current job. So, I don't want there to be any doubt at work that I'm fit and ready to go. As my energy levels return, hopefully, I'll divert more and more of that to my family.
Thursday, June 29, 2017
Finally Caught Up
I had my staples removed this morning. The infection had healed enough that the surgeon I saw thought it seemed prudent to get the staples out. I'm happy because this will allow me to start walking on a daily basis for exercise. The past week, the staples have been too uncomfortable to walk very far. They had been in there for too long and simply caused pain when walking, unless I was shirtless, and I try to to scare the general public like that.
It's probably still 3-4 weeks before I can start any real training in the gym, so just being able to walk without pain is a big deal. Now, if the weather would just cooperate and stop raining, it would be easier to get outside and walk. I was hearing thunder as I typed that last sentence.
I did have a minor issue with insurance on this last trip, and my insurance company initially tried to deny paying for the surgery. They told me this on the day of the surgery itself, although I didn't see the letter until 10 days after that. The cost of the surgery and the hospital stay, including scans 2 days before the surgery, easily exceeded $100K. Imagine finding out the day of surgery, when it's too late to really do anything, that your insurance might not pay. I'm glad I didn't see the letter until 10 days later.
Apparently, the surgeon gave them a good answer, because they quickly agreed to pay, but I can't risk that they will actually refuse a payment in the future. My ongoing health depends heavily on being treated at Sloan Kettering, and I need to make sure there are no problems in the future. So, I am trying to have the two organizations work together to permanently resolve this issue. Or, at least that's what I hope can happen.
Today, I resume seeing my therapist. She is wonderful lady who only sees cancer patients, and I really enjoy the time we get to spend talking. But, other than seeing her and getting my chemo port flushed periodically, I am hoping that I'm not going to see many doctors until October.
In the next month, these are changes I hope to see that will tell me my surgery and chemo are behind me, for now:
Then, hopefully a clean scan in October, and it's on to ski season!
It's probably still 3-4 weeks before I can start any real training in the gym, so just being able to walk without pain is a big deal. Now, if the weather would just cooperate and stop raining, it would be easier to get outside and walk. I was hearing thunder as I typed that last sentence.
I did have a minor issue with insurance on this last trip, and my insurance company initially tried to deny paying for the surgery. They told me this on the day of the surgery itself, although I didn't see the letter until 10 days after that. The cost of the surgery and the hospital stay, including scans 2 days before the surgery, easily exceeded $100K. Imagine finding out the day of surgery, when it's too late to really do anything, that your insurance might not pay. I'm glad I didn't see the letter until 10 days later.
Apparently, the surgeon gave them a good answer, because they quickly agreed to pay, but I can't risk that they will actually refuse a payment in the future. My ongoing health depends heavily on being treated at Sloan Kettering, and I need to make sure there are no problems in the future. So, I am trying to have the two organizations work together to permanently resolve this issue. Or, at least that's what I hope can happen.
Today, I resume seeing my therapist. She is wonderful lady who only sees cancer patients, and I really enjoy the time we get to spend talking. But, other than seeing her and getting my chemo port flushed periodically, I am hoping that I'm not going to see many doctors until October.
In the next month, these are changes I hope to see that will tell me my surgery and chemo are behind me, for now:
- Hair returns to my body. It may end up being white or greyer than it was, but at least it should grow back. Right now, I swear that I look 10 years older than I did just 2-3 years ago.
- My appetite returns.
- I get back out on the river fishing,
- I get back to doing CrossFit.
- My fitness improves and my resting heart rate decreases.
- The night sweats end as my body continue to recover.
- I return to the level of pain medicine I was using before surgery.
- And, most importantly, I find myself smiling and having fun on a daily basis.
Then, hopefully a clean scan in October, and it's on to ski season!
Wednesday, June 28, 2017
Coming Home
The very last part of discharge from the hospital is medications to take with you and discharge instructions. They always seem to take forever at Sloan Kettering.
At the time of discharge, my prescription for pain medicine was 10-15mg of oxycodone every 4 hours (as needed). When they handed me my prescription, it had the same instructions. But, the bottle contained only 20 pills - 100 total milligrams and the label said it was a 3 day supply. This was not the first time that they had given me way too little pain medicine on discharge, and rather than argue, I decided to just get out of the hospital and then talk to my surgeon's office the next day about the issue.
I had arrived at the hospital with about 50 x 5 mg of oxycodone, so I knew I had enough in total for 3-4 days, so I wasn't too worried. The discharge nurse immediately recognized the discrepancy and gave me a 15mg dose just before I left.
As I left the hospital, because I was alone, the hospital had to follow some protocols closely. I had limitations on how much weight I could pick up, and they didn't want to turn me loose into the streets with a suitcase and computer bag. If I'd had a problem, they would have been responsible.
So, I was wheeled to the exit in a wheelchair. From there, security called a car service - twice the price of a normal taxi, but with better service, including handling your bags for you. It took a while, but I was finally free.
I got to my hotel and tried to just lie down for a while, but things were different. After almost a week in an infinitely adjustable hospital bed, it was nearly impossible to get comfortable in a regular bed. I finally found a comfortable position and slept until the pain medication wore off and the pain woke me up. By now, it was 6:00, and I decided to take some more pain medicine and look for some dinner. Regretfully, in two laps of the local block, absolutely nothing looked good. I finally settled for some shrimp pad thai, and to be honest, it was basically the worst pad thai I've ever had. I ate half a dozen bites before giving up on eating. I'm amazed sometimes at some of the restaurants that survive in NYC. On my last surgical trip, I had a pizza delivered and it was honestly the worst pizza I'd ever had. How can a bad pizza place survive in NYC (and how did it get 4 stars on Yelp)?
After that, I got my bags ready for the trip home and got ready for some sleep. I'd found a single position on a regular bed that was comfortable, and I had to get into that position and simply not move or I'd end up in pain.
I watched a TV special about the Lakers-Celtics rivalry from the 1980's as I dozed in and out of sleep. It's a really good short series that ESPN did, and I learned a lot about that storied rivalry - stuff that we would know in the internet era, but was never really well known in the 1980's. Finally, a dose of pain medicine about 10:00 put me off to sleep. I woke up about 2:30 to take some pain medicine and again at about 7:00. At 7:00, I took some more pain medication and decided to get myself ready to leave for home. I had plenty of time with an 11:30 train, but I didn't want to risk missing the train, which would have forced me to change my destination from my hometown to Albany instead. Going to Albany would have meant a six hour drive for me wife, so missing the train was just not an option.
I was in a cab by 9:30, and it took almost an hour to cover a mile or so to Penn Station. The traffic was crazy and my so was my cabbie. He was so aggressive and obnoxious that another driver deliberately hit him part way through the trip, after my cabbie cut the other car off very badly. For a while, I was afraid I'd never make the train on time, and I was certainly glad I'd opted for the early start.
Finally, we got there, and I looked for some coffee and something that I could eat on the train later in the day. Regretfully, no food sounded good (a problem that persists still), so I just went with coffee.
My train was a bit late, but I finally got on board and settled into a seat. From here, I knew I had an easy day. I opened my laptop and for the first time in a week, and I started working. It honestly took the majority of the day just to catch up on e-mails.
Around lunchtime, I was hungry, but the only food in the bar car that sounded appealing was peanut M&Ms. So, my lunch was that plus water.
Early in the afternoon, I got a phone call from my surgeon's office, just checking up on me. I told the NP that I talked to about the problem with the pain medicine prescription. She said that it was a gross error, and offered to get me a prescription in Vermont. However, the two states (NY and VT) have very different rules about pain medicine scripts. In NY, everything is electronic. In VT, everything must be done on printed and watermarked prescription paper. We were unsure how to get a script from NY to VT. So, I told the nurse that I'd talk to my primary care provider the next day to see if she could help. It turned out that she was out of the office the next day, but the physician covering for her took care of everything for me, and pain medication was no longer an issue. I could write pages about this process and the issues I've encountered the past few years. As a cancer patient, I have an easier time getting pain medications than most patients do, but the current backlash against opiates makes it tough for many patients to get medications they need. Not every patient gets addicted, and in some cases, opiates are the correct medication for the situation. I honestly worry that even as a cancer patient, the day will arrive when appropriate pain medications will not be available to me. To be honest, that scares me more than the cancer itself in some ways.
Bit by bit, we made progress towards home. We ended up being a bit late, but I was off the train in my hometown by 7:15. We made it home in a few minutes and I immediately changed into pajamas. As I changed, I decided to weigh myself. I was at 205.
When I started chemo in February, I was at just over 225. When I left for NYC, I was at 215. My appetite still has not returned, and this morning, I was at 199. I recently read an article about weight loss in patients with advanced cancers (and I'd be foolish to try to pretend this isn't an advanced cancer) and how even overweight patients tend to fare more poorly if they lose weight due to treatments. Right this minute, my lack of appetite and ongoing weight loss are my biggest concerns. I am positive that a lot of the weight loss is muscle mass because I can't lift weights right now. In my opinion, my ideal weight is about 190-195 pounds, but that's with some decent muscle mass. Hopefully, as I start training again next month, my appetite will be stimulated by exercise and I can re-gain some lost muscle mass.
I've now been home for 9 days. Bit by bit, the pain has been getting better and I'm taking less and less medication. I can sleep in more positions now, although some positions are still uncomfortable. I've even had a couple nights where I slept through the night without pain waking me up.
I am dealing with night sweats, which are unpleasant at times. They are especially unpleasant on hot, humid nights when we are using the air conditioner and I manage to soak through PJs to my sheets. Between my wife dealing with menopause and me dealing with these night sweats, there are lots of times where one or more of us is awake at night.
I did end up getting an infection in my incision, which had never happened before. Originally, the staples were supposed to be removed last Thursday, but the incision started to drain some nasty pus and blood, and the skin got very red and swollen. I've been on antibiotics for a week now, and the staples are finally scheduled to be removed tomorrow.
This has been a problem because surgeons do not like to remove the staples from another surgeon's work. Initially, I was sending photos of the incision to Sloan Kettering on a daily basis, and they were going to write a letter authorizing the removal of the staples at the two week mark. But, the infection has made them a bit gun-shy about writing such a letter. I honestly think that they would prefer that I make a trip to NYC to have them removed, and I won't be surprised if that's a requirement in the future.
Luckily, a local surgical oncologist got my records yesterday and has agreed to do this work. I'm almost surprised that he agreed to do it, because I chose the surgeon in NYC over him for my surgeries. I simply wanted the surgeon more experienced with liposarcoma, but I've had some surgeons take things personally when I selected someone else over them.
After the staples are removed tomorrow, I am hoping that our weather finally turns more summer-like (not in the forecast, regretfully), so that I can start walking on a daily basis until the point that I can start lifting weights again. I hope to be back at CrossFit within the month if all goes well.
And, I'd like to return to fly fishing as long as the water levels are low enough that wading feels safe. I know I'm not at 100%, so I need to be careful about wading right now.
At the time of discharge, my prescription for pain medicine was 10-15mg of oxycodone every 4 hours (as needed). When they handed me my prescription, it had the same instructions. But, the bottle contained only 20 pills - 100 total milligrams and the label said it was a 3 day supply. This was not the first time that they had given me way too little pain medicine on discharge, and rather than argue, I decided to just get out of the hospital and then talk to my surgeon's office the next day about the issue.
I had arrived at the hospital with about 50 x 5 mg of oxycodone, so I knew I had enough in total for 3-4 days, so I wasn't too worried. The discharge nurse immediately recognized the discrepancy and gave me a 15mg dose just before I left.
As I left the hospital, because I was alone, the hospital had to follow some protocols closely. I had limitations on how much weight I could pick up, and they didn't want to turn me loose into the streets with a suitcase and computer bag. If I'd had a problem, they would have been responsible.
So, I was wheeled to the exit in a wheelchair. From there, security called a car service - twice the price of a normal taxi, but with better service, including handling your bags for you. It took a while, but I was finally free.
I got to my hotel and tried to just lie down for a while, but things were different. After almost a week in an infinitely adjustable hospital bed, it was nearly impossible to get comfortable in a regular bed. I finally found a comfortable position and slept until the pain medication wore off and the pain woke me up. By now, it was 6:00, and I decided to take some more pain medicine and look for some dinner. Regretfully, in two laps of the local block, absolutely nothing looked good. I finally settled for some shrimp pad thai, and to be honest, it was basically the worst pad thai I've ever had. I ate half a dozen bites before giving up on eating. I'm amazed sometimes at some of the restaurants that survive in NYC. On my last surgical trip, I had a pizza delivered and it was honestly the worst pizza I'd ever had. How can a bad pizza place survive in NYC (and how did it get 4 stars on Yelp)?
After that, I got my bags ready for the trip home and got ready for some sleep. I'd found a single position on a regular bed that was comfortable, and I had to get into that position and simply not move or I'd end up in pain.
I watched a TV special about the Lakers-Celtics rivalry from the 1980's as I dozed in and out of sleep. It's a really good short series that ESPN did, and I learned a lot about that storied rivalry - stuff that we would know in the internet era, but was never really well known in the 1980's. Finally, a dose of pain medicine about 10:00 put me off to sleep. I woke up about 2:30 to take some pain medicine and again at about 7:00. At 7:00, I took some more pain medication and decided to get myself ready to leave for home. I had plenty of time with an 11:30 train, but I didn't want to risk missing the train, which would have forced me to change my destination from my hometown to Albany instead. Going to Albany would have meant a six hour drive for me wife, so missing the train was just not an option.
I was in a cab by 9:30, and it took almost an hour to cover a mile or so to Penn Station. The traffic was crazy and my so was my cabbie. He was so aggressive and obnoxious that another driver deliberately hit him part way through the trip, after my cabbie cut the other car off very badly. For a while, I was afraid I'd never make the train on time, and I was certainly glad I'd opted for the early start.
Finally, we got there, and I looked for some coffee and something that I could eat on the train later in the day. Regretfully, no food sounded good (a problem that persists still), so I just went with coffee.
My train was a bit late, but I finally got on board and settled into a seat. From here, I knew I had an easy day. I opened my laptop and for the first time in a week, and I started working. It honestly took the majority of the day just to catch up on e-mails.
Around lunchtime, I was hungry, but the only food in the bar car that sounded appealing was peanut M&Ms. So, my lunch was that plus water.
Early in the afternoon, I got a phone call from my surgeon's office, just checking up on me. I told the NP that I talked to about the problem with the pain medicine prescription. She said that it was a gross error, and offered to get me a prescription in Vermont. However, the two states (NY and VT) have very different rules about pain medicine scripts. In NY, everything is electronic. In VT, everything must be done on printed and watermarked prescription paper. We were unsure how to get a script from NY to VT. So, I told the nurse that I'd talk to my primary care provider the next day to see if she could help. It turned out that she was out of the office the next day, but the physician covering for her took care of everything for me, and pain medication was no longer an issue. I could write pages about this process and the issues I've encountered the past few years. As a cancer patient, I have an easier time getting pain medications than most patients do, but the current backlash against opiates makes it tough for many patients to get medications they need. Not every patient gets addicted, and in some cases, opiates are the correct medication for the situation. I honestly worry that even as a cancer patient, the day will arrive when appropriate pain medications will not be available to me. To be honest, that scares me more than the cancer itself in some ways.
Bit by bit, we made progress towards home. We ended up being a bit late, but I was off the train in my hometown by 7:15. We made it home in a few minutes and I immediately changed into pajamas. As I changed, I decided to weigh myself. I was at 205.
When I started chemo in February, I was at just over 225. When I left for NYC, I was at 215. My appetite still has not returned, and this morning, I was at 199. I recently read an article about weight loss in patients with advanced cancers (and I'd be foolish to try to pretend this isn't an advanced cancer) and how even overweight patients tend to fare more poorly if they lose weight due to treatments. Right this minute, my lack of appetite and ongoing weight loss are my biggest concerns. I am positive that a lot of the weight loss is muscle mass because I can't lift weights right now. In my opinion, my ideal weight is about 190-195 pounds, but that's with some decent muscle mass. Hopefully, as I start training again next month, my appetite will be stimulated by exercise and I can re-gain some lost muscle mass.
I've now been home for 9 days. Bit by bit, the pain has been getting better and I'm taking less and less medication. I can sleep in more positions now, although some positions are still uncomfortable. I've even had a couple nights where I slept through the night without pain waking me up.
I am dealing with night sweats, which are unpleasant at times. They are especially unpleasant on hot, humid nights when we are using the air conditioner and I manage to soak through PJs to my sheets. Between my wife dealing with menopause and me dealing with these night sweats, there are lots of times where one or more of us is awake at night.
I did end up getting an infection in my incision, which had never happened before. Originally, the staples were supposed to be removed last Thursday, but the incision started to drain some nasty pus and blood, and the skin got very red and swollen. I've been on antibiotics for a week now, and the staples are finally scheduled to be removed tomorrow.
This has been a problem because surgeons do not like to remove the staples from another surgeon's work. Initially, I was sending photos of the incision to Sloan Kettering on a daily basis, and they were going to write a letter authorizing the removal of the staples at the two week mark. But, the infection has made them a bit gun-shy about writing such a letter. I honestly think that they would prefer that I make a trip to NYC to have them removed, and I won't be surprised if that's a requirement in the future.
Luckily, a local surgical oncologist got my records yesterday and has agreed to do this work. I'm almost surprised that he agreed to do it, because I chose the surgeon in NYC over him for my surgeries. I simply wanted the surgeon more experienced with liposarcoma, but I've had some surgeons take things personally when I selected someone else over them.
After the staples are removed tomorrow, I am hoping that our weather finally turns more summer-like (not in the forecast, regretfully), so that I can start walking on a daily basis until the point that I can start lifting weights again. I hope to be back at CrossFit within the month if all goes well.
And, I'd like to return to fly fishing as long as the water levels are low enough that wading feels safe. I know I'm not at 100%, so I need to be careful about wading right now.
Tuesday, June 27, 2017
On to Surgery
Wednesday was a very low key day. I had to do a bowel prep, and I also worked remotely from NYC. My wife spent the day doing low key things around the city, mostly trying to avoid our cramped room and giving me some room to work.
By 6:00 p.m., the bowel prep was mostly done. My wife was back and I was starving. There were a few things that I was allowed that would take the edge off the hunger, so we headed out, looking for some bone broth and some frozen fruit juice popsicles. This took longer than I expected to find, but we were finally successful. And, by 8:30, my wife and I were in bed, watching the Warriors vs. the Cavaliers on TV. I was dozing off, but kept waking up to see the Warriors gradually increasing their lead en route to a 3-0 series lead.
Morning, as it always does on a surgery day, seemed to arrive extra early. I was allowed 12 oz. of black coffee, and I was very happy about that. We got some coffee, I took some meds (including pain meds and anti-anxiety meds) and started the walk to the hospital. We were due at the hospital by 10:00 and we got there maybe 15 minutes early.
Regretfully, my surgeon's first case of the day lasted longer than planned, so we waited for hours. I tried to relax and just doze, rather than thinking about what was in front of me. Finally, around 2:00, I was escorted to the OR. I remember that it was freezing in the OR. And then, I had some gas and I was asleep. It's great to get knocked out so quickly, so you aren't awake as you are intubated and have a catheter inserted and have a number of IVs inserted. I slept through all of that plus the surgery.
The next thing I remember is being somewhat awake, although I couldn't really see anything. I could talk and hear but my vision seemed to be non-functional for a while. The nurses in PACU got me some blankets to warm me up, and after a while, they brought my wife into the room. She told me that surgery had gone well, with one little issue, and that the surgeon was happy with the outcome.
We spent the next couple hours trying to get my pain under control. For me, Fentanyl just doesn't seem to work very well. Just like the previous surgery, escalating doses of Fentanyl did not knock down the pain. I reminded the anesthesiologist that I tend to do better with Dilaudid than Fentanyl, something I'd told him before surgery, so they switched over and we got the pain under control fairly quickly.
I was also informed that the hospital was way overbooked and that I'd be spending the night in PACU rather than in a room.
At some point, the surgeon stopped by. I don't really remember it, but he gave me a rundown. All the new tumors were gone with good margins, but he'd had to remove a fair amount of the colon and a lot of what was left of my right psoas major muscle. I was immediately concerned about needing a colostomy bag, but he said it was nowhere close to that. I will have to see how this loss of muscle tissue plays out in the gym in the future. I needed a few months of physical therapy after losing part of the muscle in my previous surgery. The surgeon also said that he'd been unable to remove the tumor that was irradiated last December. The tissues were too fused together, and he was afraid of damaging the inferior vena cava or the duodenum, and so he took segments of the tumor, but not all of it. However, he considered the tumor to be quite dead from the radiation and he said he had no concerns about leaving that tissue behind.
I slept fitfully that night, dealing with pain and constant vitals signs checks from the nurses. The next morning, I was finally transferred to a room on the 15th floor of the main hospital, where Dr. Singer likes his patients to be housed.
From there, the primary focus was the healing process. The doctors wanted me out of bed and walking that first day, but I firmly declined, saying that I'd gotten out of surgery late the day before and I simply needed to rest that first day. Surprisingly, they didn't really argue with me. The doctors' biggest concern was my heart rate, which was sitting at 120-130 - way too high.
The next day, we did an x-ray and a CT scan (both very painful due to how I had to move) to see if we could isolate the cause of the tachycardia. Other than some distension in my intestines, nothing showed up. They briefly considered an NG tube, which I very much did not want, but eventually decided that I should just be up and walking as much as possible. So, I got up and in three different sessions, I walked 20 laps around the ward. I could feel air passing from my stomach as I did this, so I was hoping this would help.
Over the next few days, I increased my laps to 65 and then 70 and then 102, and my heart rate gradually decreased. Overall, I was surprised that I seemed to be recovering faster than my previous surgery. I was taken off the PCA button (Patient Controlled Analgesia) earlier than normal, although this did happen a bit too soon and I lost control of the pain for 24 hours or so. They finally upped the dosage of oxycodone and this resolved everything. I had a bowel movement faster than my previous hospitalization, despite having lost a good chunk of colon. I was then allowed to start eating simple foods - frozen fruit juice, jello, broth, etc.
The surgery had been on Thursday, and I was expecting to be in the hospital until the following Thursday or Friday. I was surprised when they used the word "discharge" on Monday. It turned out that Tuesday was way too early to go home, but they did schedule discharge for Wednesday. I got out of the hospital late that afternoon and headed to a hotel for the night, planning a train ride home the next day.
I'll write more on some post-discharge "issues" later.
By 6:00 p.m., the bowel prep was mostly done. My wife was back and I was starving. There were a few things that I was allowed that would take the edge off the hunger, so we headed out, looking for some bone broth and some frozen fruit juice popsicles. This took longer than I expected to find, but we were finally successful. And, by 8:30, my wife and I were in bed, watching the Warriors vs. the Cavaliers on TV. I was dozing off, but kept waking up to see the Warriors gradually increasing their lead en route to a 3-0 series lead.
Morning, as it always does on a surgery day, seemed to arrive extra early. I was allowed 12 oz. of black coffee, and I was very happy about that. We got some coffee, I took some meds (including pain meds and anti-anxiety meds) and started the walk to the hospital. We were due at the hospital by 10:00 and we got there maybe 15 minutes early.
Regretfully, my surgeon's first case of the day lasted longer than planned, so we waited for hours. I tried to relax and just doze, rather than thinking about what was in front of me. Finally, around 2:00, I was escorted to the OR. I remember that it was freezing in the OR. And then, I had some gas and I was asleep. It's great to get knocked out so quickly, so you aren't awake as you are intubated and have a catheter inserted and have a number of IVs inserted. I slept through all of that plus the surgery.
The next thing I remember is being somewhat awake, although I couldn't really see anything. I could talk and hear but my vision seemed to be non-functional for a while. The nurses in PACU got me some blankets to warm me up, and after a while, they brought my wife into the room. She told me that surgery had gone well, with one little issue, and that the surgeon was happy with the outcome.
We spent the next couple hours trying to get my pain under control. For me, Fentanyl just doesn't seem to work very well. Just like the previous surgery, escalating doses of Fentanyl did not knock down the pain. I reminded the anesthesiologist that I tend to do better with Dilaudid than Fentanyl, something I'd told him before surgery, so they switched over and we got the pain under control fairly quickly.
I was also informed that the hospital was way overbooked and that I'd be spending the night in PACU rather than in a room.
At some point, the surgeon stopped by. I don't really remember it, but he gave me a rundown. All the new tumors were gone with good margins, but he'd had to remove a fair amount of the colon and a lot of what was left of my right psoas major muscle. I was immediately concerned about needing a colostomy bag, but he said it was nowhere close to that. I will have to see how this loss of muscle tissue plays out in the gym in the future. I needed a few months of physical therapy after losing part of the muscle in my previous surgery. The surgeon also said that he'd been unable to remove the tumor that was irradiated last December. The tissues were too fused together, and he was afraid of damaging the inferior vena cava or the duodenum, and so he took segments of the tumor, but not all of it. However, he considered the tumor to be quite dead from the radiation and he said he had no concerns about leaving that tissue behind.
I slept fitfully that night, dealing with pain and constant vitals signs checks from the nurses. The next morning, I was finally transferred to a room on the 15th floor of the main hospital, where Dr. Singer likes his patients to be housed.
From there, the primary focus was the healing process. The doctors wanted me out of bed and walking that first day, but I firmly declined, saying that I'd gotten out of surgery late the day before and I simply needed to rest that first day. Surprisingly, they didn't really argue with me. The doctors' biggest concern was my heart rate, which was sitting at 120-130 - way too high.
The next day, we did an x-ray and a CT scan (both very painful due to how I had to move) to see if we could isolate the cause of the tachycardia. Other than some distension in my intestines, nothing showed up. They briefly considered an NG tube, which I very much did not want, but eventually decided that I should just be up and walking as much as possible. So, I got up and in three different sessions, I walked 20 laps around the ward. I could feel air passing from my stomach as I did this, so I was hoping this would help.
Over the next few days, I increased my laps to 65 and then 70 and then 102, and my heart rate gradually decreased. Overall, I was surprised that I seemed to be recovering faster than my previous surgery. I was taken off the PCA button (Patient Controlled Analgesia) earlier than normal, although this did happen a bit too soon and I lost control of the pain for 24 hours or so. They finally upped the dosage of oxycodone and this resolved everything. I had a bowel movement faster than my previous hospitalization, despite having lost a good chunk of colon. I was then allowed to start eating simple foods - frozen fruit juice, jello, broth, etc.
The surgery had been on Thursday, and I was expecting to be in the hospital until the following Thursday or Friday. I was surprised when they used the word "discharge" on Monday. It turned out that Tuesday was way too early to go home, but they did schedule discharge for Wednesday. I got out of the hospital late that afternoon and headed to a hotel for the night, planning a train ride home the next day.
I'll write more on some post-discharge "issues" later.
Monday, June 26, 2017
Heading towards surgery
On Tuesday morning, the 6th of June, my wife and I walked the long walk to Sloan Kettering. My day was going to start with a CT scan. I was a bit disappointed to have the dietary restrictions that I had, given that it was my wife's birthday, and I would have loved to taken her out for a nice breakfast, but food and abdominal CT scans don't work together.
The first thing that Sloan Kettering wanted to do was draw blood to determine my kidney function. This is essential to get the correct dose of IV contrast dye - an injected material that is tough on the kidneys, and I only have one kidney. But, I'd just had a serum creatinine test in VT, and asked them if they'd accept that test. They said if I could forward the results to them, they'd be happy to do that. I was able to use the UVM Medical Center patient portal to pull my prior result and forward it to the nurses at Sloan Kettering, so I saved myself one needle stick. Given how the next week would go, one needle stick saved was essentially meaningless, but I was glad to do it.
I was disappointed when they refused to use my Power Port for the contrast injection. Part of the reason for getting a power port was that they can be used for CT scans, but I apparently needed some paperwork with me in order for them to do that. So, one needle stick saved and then I had to have an IV rather than use my port. Net zero.
After the scan, we had a couple hours to kill. I was able to get some coffee and my wife got some breakfast, but I have to admit that I was too nervous to eat. I got within days of this surgery in February, when a CT scan showed new tumors, and changed the direction of my treatment. Although I'd had a decent response to the gem/tax chemo, it hadn't been overwhelming, and the possibility of new tumors or larger tumors really had me scared, even this late in the process.
As usual, Dr. Singer was late, but while we waited in his waiting room, I got to meet an online friend face to face for the first time. We are both on a Facebook group called Liposarcoma Survivors, and she was one of the few people I'd friended outside of the group. Her appointment was before mine, which cut our conversation short, but it was really nice to meet her in person.
Finally, about 90 minutes late, we got in to see Dr. Singer. His office days (he's only in his office one day per week) must be exceptionally long. His first appointment for the day is at 7:30 or earlier, and he falls so far behind schedule that he must work until at least 7:00 in the evening. This is one of the things I love about him. He is a world-renowned specialist in an orphan disease, and he never shirks what he has taken upon himself. I think he knows that an entire community depends on him, and he goes out of his way to be sure he gets to every patient.
He didn't have much to say this day. I have to admit that didn't make me feel super optimistic. He still wanted to move on to surgery, but we spent a fair amount of time discussing the healthy tissue I would lose along with the tumors, to ensure that he got clean margins. He is always up front about this, and I have permanent numbness in my abdomen and right quadriceps due to his surgeries. But, I've never had something like this show up without prior warning. So, I always have the information I need to back out if the side effects seem too onerous. Of course, one of the side effects of no treatments is rather dire, so I always proceed to surgery.
After our appointment, I had to go upstairs for my final pre-op testing. This is getting routine for me here - my third time through the process. And, about 5:00, we were free.
This gave us just enough time to head to our hotel, get cleaned up, and walk to db Bistro Moderne, where we would celebrate my wife's birthday. That day's dinner had two benefactors. My wife's co-workers had given her $300 in Visa gift cards to celebrate her birthday in the city. And, one of my blog readers and a good friend from high school (if anyone remembers my night in the Waldorf Astoria a year ago, it's the same friend) had offered to treat us to some really nice wine at dinner.
We have eaten at Daniel Boulud's flagship restaurant, Daniel, way back in the fall of 2000, right before I ran the NYC marathon. We'd been warned that the Bistro was quite expensive, but we were pretty shocked by the prices. This restaurant is best known for its foie gras and truffle burger, that sells for $35. At that price, it was far from the most expensive entree on the menu.
Because of my friend's generosity on the wine, we started with 2002 Bollinger RD, one of my wife's favorite Champagnes. It listed for $315 on the list, but we were really shocked a few hours later when it showed up on the bill at $479, This was quickly corrected.
The Champagne was amazing - everything an RD should be and we sipped it slowly as we looked over the menu. My wife opted for a torchon of foie gras to start and it was an absolutely amazing dish - the best dish of our trip. Because I'd had foie gras the night before, I went with a lobster salad, which was nice but lacked a bit of excitement. Just a little bit more lemon or maybe some sherry vinegar would have brightened it a bit.
For entrees, my wife went with Steak Frites, while I went with Coq au Vin - two bistro classics. Both were done exceptionally well, although mine was rich beyond belief. By now, we'd finished the Champagne and my wife had a glass of red wine while I'd decided I'd imbibed enough.
For dessert, my wife ordered some Madeleine's, while I passed. What my wife didn't know was that I'd informed the restaurant it was her birthday, so she got a personalized dessert on the house plus the Madeleines. The latter became breakfast with coffee the next day.
Finally the bill arrived, it was pretty outrageous. Even after we got the error fixed on the wine price, it was still almost $700 with tip. How can a restaurant be considered a bistro with prices like that, I wonder. However, thanks to the generosity of friends, the meal cost us less than $100, which made me worry a lot less about the price.
As we walked back to the hotel, I knew I'd eaten my last meal for about a week, but it had been a good one.
That's enough for today. Tomorrow, I'll write about the pre-surgery prep day and the surgery itself.
The first thing that Sloan Kettering wanted to do was draw blood to determine my kidney function. This is essential to get the correct dose of IV contrast dye - an injected material that is tough on the kidneys, and I only have one kidney. But, I'd just had a serum creatinine test in VT, and asked them if they'd accept that test. They said if I could forward the results to them, they'd be happy to do that. I was able to use the UVM Medical Center patient portal to pull my prior result and forward it to the nurses at Sloan Kettering, so I saved myself one needle stick. Given how the next week would go, one needle stick saved was essentially meaningless, but I was glad to do it.
I was disappointed when they refused to use my Power Port for the contrast injection. Part of the reason for getting a power port was that they can be used for CT scans, but I apparently needed some paperwork with me in order for them to do that. So, one needle stick saved and then I had to have an IV rather than use my port. Net zero.
After the scan, we had a couple hours to kill. I was able to get some coffee and my wife got some breakfast, but I have to admit that I was too nervous to eat. I got within days of this surgery in February, when a CT scan showed new tumors, and changed the direction of my treatment. Although I'd had a decent response to the gem/tax chemo, it hadn't been overwhelming, and the possibility of new tumors or larger tumors really had me scared, even this late in the process.
As usual, Dr. Singer was late, but while we waited in his waiting room, I got to meet an online friend face to face for the first time. We are both on a Facebook group called Liposarcoma Survivors, and she was one of the few people I'd friended outside of the group. Her appointment was before mine, which cut our conversation short, but it was really nice to meet her in person.
Finally, about 90 minutes late, we got in to see Dr. Singer. His office days (he's only in his office one day per week) must be exceptionally long. His first appointment for the day is at 7:30 or earlier, and he falls so far behind schedule that he must work until at least 7:00 in the evening. This is one of the things I love about him. He is a world-renowned specialist in an orphan disease, and he never shirks what he has taken upon himself. I think he knows that an entire community depends on him, and he goes out of his way to be sure he gets to every patient.
He didn't have much to say this day. I have to admit that didn't make me feel super optimistic. He still wanted to move on to surgery, but we spent a fair amount of time discussing the healthy tissue I would lose along with the tumors, to ensure that he got clean margins. He is always up front about this, and I have permanent numbness in my abdomen and right quadriceps due to his surgeries. But, I've never had something like this show up without prior warning. So, I always have the information I need to back out if the side effects seem too onerous. Of course, one of the side effects of no treatments is rather dire, so I always proceed to surgery.
After our appointment, I had to go upstairs for my final pre-op testing. This is getting routine for me here - my third time through the process. And, about 5:00, we were free.
This gave us just enough time to head to our hotel, get cleaned up, and walk to db Bistro Moderne, where we would celebrate my wife's birthday. That day's dinner had two benefactors. My wife's co-workers had given her $300 in Visa gift cards to celebrate her birthday in the city. And, one of my blog readers and a good friend from high school (if anyone remembers my night in the Waldorf Astoria a year ago, it's the same friend) had offered to treat us to some really nice wine at dinner.
We have eaten at Daniel Boulud's flagship restaurant, Daniel, way back in the fall of 2000, right before I ran the NYC marathon. We'd been warned that the Bistro was quite expensive, but we were pretty shocked by the prices. This restaurant is best known for its foie gras and truffle burger, that sells for $35. At that price, it was far from the most expensive entree on the menu.
Because of my friend's generosity on the wine, we started with 2002 Bollinger RD, one of my wife's favorite Champagnes. It listed for $315 on the list, but we were really shocked a few hours later when it showed up on the bill at $479, This was quickly corrected.
The Champagne was amazing - everything an RD should be and we sipped it slowly as we looked over the menu. My wife opted for a torchon of foie gras to start and it was an absolutely amazing dish - the best dish of our trip. Because I'd had foie gras the night before, I went with a lobster salad, which was nice but lacked a bit of excitement. Just a little bit more lemon or maybe some sherry vinegar would have brightened it a bit.
For entrees, my wife went with Steak Frites, while I went with Coq au Vin - two bistro classics. Both were done exceptionally well, although mine was rich beyond belief. By now, we'd finished the Champagne and my wife had a glass of red wine while I'd decided I'd imbibed enough.
For dessert, my wife ordered some Madeleine's, while I passed. What my wife didn't know was that I'd informed the restaurant it was her birthday, so she got a personalized dessert on the house plus the Madeleines. The latter became breakfast with coffee the next day.
Finally the bill arrived, it was pretty outrageous. Even after we got the error fixed on the wine price, it was still almost $700 with tip. How can a restaurant be considered a bistro with prices like that, I wonder. However, thanks to the generosity of friends, the meal cost us less than $100, which made me worry a lot less about the price.
As we walked back to the hotel, I knew I'd eaten my last meal for about a week, but it had been a good one.
That's enough for today. Tomorrow, I'll write about the pre-surgery prep day and the surgery itself.
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