Last Thursday, just before I left my office for my chemo treatment, I got a call from ProCure in New Jersey. ProCure is the proton beam therapy center that Sloan Kettering wanted me to go to for proton beam radiation. They were calling me to tell me that my insurance had finally approved the treatment. I've since gotten a letter from my insurance company outlining the approval. They consider the treatment to be experimental, but they've approved me for a one-time-only treatment.
But, since we decided to pursue this therapy in August, my tumors have continued to grow and I have a new CT scan. So, I contacted my doctors at Sloan Kettering to be sure that they still want me to pursue this option. A week later, they still haven't decided. I know that part of that time, they were waiting to receive my CT scans on a CD. I'm dumbfounded that they still use US mail and CDs to exchange this information. Doing that kind of healthcare information exchange is what I do for a living. Yet, a major teaching hospital and one of the top cancer centers in the world still rely on US mail to exchange results.
Hopefully, I'll have an answer in a few days time. If they still want me to pursue this option, we will have to decide whether to also continue chemo or if I should take a break from one while doing the other. Basically, I would need to do a short trip to NJ so they could do measurements and get me set up for the treatments. They would do a full body mold that would hold me in place during the treatments, and they would then use some sort of imaging to direct the beams during the treatment so that it gets to the precise location they want to be targeted.
Then, 2 weeks after the initial visit, I would return for an 8 day stay, and I would receive 6 treatments over those 8 days. I would be able to work remotely from NJ while I needed to be there, so that should minimize the impact at work. My wife would need to go with me (a vacation in New Jersey - how exciting!), and we are hopeful that she could work remotely as well.
My biggest concern is leaving the dogs at home with my son for the time we were gone. That's a lot to ask of him, but he has said that he thinks he could take care of them while we were out of town.
It would be the longest period of time we'd ever left a child at home alone. He is a full grown adult, so I hope he can handle it, but I still worry. It's a parent's prerogative to worry about these things.
I'm hopeful that if radiation was successful that I might get back into the gym after treatments, but I'm thinking too far ahead there. I need to get the treatments first, and then worry about the post-treatment issues.
My wife suggested this week that we should consider getting a reclining chair at home. I spend so much time in the living room these days, uncomfortable on our couches, that she thought a recliner might be good for me. I do spend a lot of my time at home just resting these days, so maybe it makes sense. But, it also has me screaming "grandpa" inside my brain. Aren't recliners for old people? I remember my grandfather spending his later years in his recliner at home. He had it positioned so that he had the best view of the TV in the house, and after dinner, he could always be found in his recliner, commanding the remote control. How did I get so old and frail?
But, it probably makes some sense, so we are going to do some shopping this weekend and see what we find.
Lastly, I tried to resign from Sugarbush this week. After 18 years, I just don't think that I can pull it off anymore. I explained that I didn't think that I could work enough and that I thought I'd be a burden rather than an asset. But, my boss and the ski school director had already discussed this possibility, and they declined my resignation. They are going to let me work as little or as much as I can handle, and I'll get to keep my ski pass. I am guessing my wife will keep her pass as well. I'm grateful for the offer that they've extended to me. It will allow me to stay involved in the ski school without much of a commitment. I'll work the busiest days of the season, no more than one day per weekend, and I should still be able to get enough rest (in my new recliner) so that I'm good for the work week. It's all a matter of finding balance these days.
I'll post an update here as soon as the doctors decide on the next treatment steps.
Friday, October 26, 2018
Monday, October 15, 2018
Loss
As I enter my 4th week of not being able to train at the gym, I'm really starting to wonder about the potential permanence of some recent changes.
I am hopeful that the new chemo will work and reduce my tumor size. If that happens, I should be able to reduce my pain medication. That might allow me to train in the gym again. It might allow me to do more than go for an easy two mile walk as my "exercise". I did actually walk 5 miles yesterday, and I'm actually a bit sore from doing that.
How far will this extend? Right now, I'm guessing that I'm not going to be able to ski this winter. I can't ski with this much pain medicine in my system. I can't function at my job at the mountain. So, after 18 seasons, am I done being a ski instructor?
Will the nausea ever decrease? Or, am I in a battle just to get some calories into my system, and that's the new normal? Yesterday, after the aforementioned walk (in Stowe on the bike path), my wife and I went out to dinner with friends. I ordered a side salad and an appetizer, but to be honest, nothing on the menu looked palatable. I managed to eat most of the salad and I started on my scallop appetizer when my body quickly and violently rejected the food I was trying to force down. It feels as though my body simply won't eat any vegetables right now.
After the salad came back up, I was able to eat my scallops, but the beets and grapefruit that came with the scallops went untouched. Is this the new normal? Will I ever return to having a normal appetite?
Because of the pain meds, I'm not driving. As long as I'm on this level of medication, I don't think I'm going to be able to drive. Should I simply accept that I won't ever drive again?
It feels like my identity is being stripped away. For 20+ years, I've defined myself as an athlete of some sort. For years, I did triathlons. Then road racing. Then ultramarathons. I never imagined that I'd give up being a runner.
But then, at just the right time in my life, CrossFit came along. For the past 8 years, that has been my obsession. I know I'll never touch my lifetime PRs in the gym again, but will I ever be able to lift again?
If I lose the ability to train, to teach skiing, to do something as simple as driving, what is left? Fishing? I have to admit that I haven't been on the rivers since June right now. Part of that was due to stream conditions, but part of it was malaise from the cancer.
I've been thinking that maybe it's time to start selling my fly fishing gear. I know that I'll wait until next spring before I make a decision, but I've been thinking about it. I know what my fly fishing gear is worth, and I can get a lot of cash if I sell it myself. If my wife needs to sell it on her own in the future, she will never get fair value for the equipment that I've accumulated over the years.
I guess I'm dancing around the real issue here. This feels like the beginning of the end, to be honest.
Maybe the chemo will be wildly successful. Mathematically, the chance of significant shrinkage of my tumors is probably around 10%. Stabilization is a 1 in 4 bet. Not great odds, to be honest.
Median survival for people on the chemo that I'm on now is 16 months. It is only used after a number of other treatments have been tried, which is exactly where I am. It does increase survival even in cases where the tumors continue to grow, but the more they grow, the lower survival time is expected to be.
I hate to be so maudlin, but this disease is going to kill me at some point in time. And, it's starting to feel like I'm on final approach. I hope I'm over-reacting to a rough patch, but I also need to be honest with myself. Maybe I'll delete this post in a month because I'm feeling better, I'm back in the gym, and I'm ready to take on ski season. But, I honestly doubt that this will be the case.
For now, I feel empty. Like I've lost a huge amount of what makes me who I am. I'm at a loss.
I am hopeful that the new chemo will work and reduce my tumor size. If that happens, I should be able to reduce my pain medication. That might allow me to train in the gym again. It might allow me to do more than go for an easy two mile walk as my "exercise". I did actually walk 5 miles yesterday, and I'm actually a bit sore from doing that.
How far will this extend? Right now, I'm guessing that I'm not going to be able to ski this winter. I can't ski with this much pain medicine in my system. I can't function at my job at the mountain. So, after 18 seasons, am I done being a ski instructor?
Will the nausea ever decrease? Or, am I in a battle just to get some calories into my system, and that's the new normal? Yesterday, after the aforementioned walk (in Stowe on the bike path), my wife and I went out to dinner with friends. I ordered a side salad and an appetizer, but to be honest, nothing on the menu looked palatable. I managed to eat most of the salad and I started on my scallop appetizer when my body quickly and violently rejected the food I was trying to force down. It feels as though my body simply won't eat any vegetables right now.
After the salad came back up, I was able to eat my scallops, but the beets and grapefruit that came with the scallops went untouched. Is this the new normal? Will I ever return to having a normal appetite?
Because of the pain meds, I'm not driving. As long as I'm on this level of medication, I don't think I'm going to be able to drive. Should I simply accept that I won't ever drive again?
It feels like my identity is being stripped away. For 20+ years, I've defined myself as an athlete of some sort. For years, I did triathlons. Then road racing. Then ultramarathons. I never imagined that I'd give up being a runner.
But then, at just the right time in my life, CrossFit came along. For the past 8 years, that has been my obsession. I know I'll never touch my lifetime PRs in the gym again, but will I ever be able to lift again?
If I lose the ability to train, to teach skiing, to do something as simple as driving, what is left? Fishing? I have to admit that I haven't been on the rivers since June right now. Part of that was due to stream conditions, but part of it was malaise from the cancer.
I've been thinking that maybe it's time to start selling my fly fishing gear. I know that I'll wait until next spring before I make a decision, but I've been thinking about it. I know what my fly fishing gear is worth, and I can get a lot of cash if I sell it myself. If my wife needs to sell it on her own in the future, she will never get fair value for the equipment that I've accumulated over the years.
I guess I'm dancing around the real issue here. This feels like the beginning of the end, to be honest.
Maybe the chemo will be wildly successful. Mathematically, the chance of significant shrinkage of my tumors is probably around 10%. Stabilization is a 1 in 4 bet. Not great odds, to be honest.
Median survival for people on the chemo that I'm on now is 16 months. It is only used after a number of other treatments have been tried, which is exactly where I am. It does increase survival even in cases where the tumors continue to grow, but the more they grow, the lower survival time is expected to be.
I hate to be so maudlin, but this disease is going to kill me at some point in time. And, it's starting to feel like I'm on final approach. I hope I'm over-reacting to a rough patch, but I also need to be honest with myself. Maybe I'll delete this post in a month because I'm feeling better, I'm back in the gym, and I'm ready to take on ski season. But, I honestly doubt that this will be the case.
For now, I feel empty. Like I've lost a huge amount of what makes me who I am. I'm at a loss.
Friday, October 12, 2018
Moving on
Since my last post, I think I managed to hit a nadir and I've gradually turned things around.
Let me catch you up.
So, insurance still has not approved, nor have they officially denied, my request for proton beam radiation. But, I simply can't wait anymore. Things have been getting worse and it was time for action.
Since I last posted, the pain issue really exploded. My pain levels were drastically increasing and my pain medications just weren't keeping up. It really peaked on a Monday and I had to call in sick. I couldn't get in to see my primary care provider, so she suggested that I visit the Emergency Department at our local hospital instead. So, I did that. I spent about 5 hours there, and at the end, they just threw a new prescription at me for a slightly stronger pain medication and they sent me home. I was supposed to follow up with my PCP on the pain medicine.
So, the next day, I called in sick again and used the new pain medicines. They didn't help. By now, my PCP had given me her cell phone number and she and I were texting back and forth. On Wednesday morning, when things weren't better, she suggested that I go to the ED at one of the two teaching hospitals in our region. Since my wife and I work in Burlington, I had my wife take me to the ED at the University of Vermont Medical Center. I ended up spending the entire day there.
The first thing they did was just try to get my pain levels under control. It took two injections of morphine to establish a baseline level of control. Four hours later, it took three more injections to keep things under control. But, the good thing about this hospital vs. the one I visited on Monday is that they wanted to figure out why my pain levels were so much higher. They did some imaging and found that my tumors had grown significantly since August. The larger tumors were creating pressure on nerves and that was causing the pain.
Late in the day, the doctor I'd been working with (Dr. Claus - the poor guy must have been tortured his whole life for that name) suggested two options. The first was that he could take a guess at a prescription that would work going forward and send me home. Or, I could be admitted and have a pain specialist from the oncology clinic work with me to establish control of the pain. He offered them to me as almost a 50-50 choice, assuming that I was averse to being admitted. But, to me it was a no-brainer and I chose to be admitted. That afternoon, before they could even admit me, I was interviewed by two pain specialists. They knew about the tumor growth.
By the time I'd been admitted, they had a plan they wanted to try - Oxycontin with oxycodone for breakthrough pain. I've found out since then that there is a lot of controversy about whether or not Oxycontin really works for the full 12 hours as advertised. In something like half of all patients, it works for less than 12 hours, and it needs to be supplemented with other pain medications. So, we started the Oxycontin on Wednesday night and I was able to sleep through the night for the first time in a while.
On Thursday, the doctors seemed quite happy with themselves, having found something that worked so quickly. I was discharged late Thursday afternoon with 2 new prescriptions. I was happy that we had a solution. Until, that is, we reached the pharmacy. It turned out that Oxycontin isn't covered by my insurance. I had two options - pay $541 out of pocket or pay for a lesser amount that I could choose. But, if I chose a lesser amount, the rest of the prescription would be invalid. I was torn. I knew that if I didn't fill the prescription, I'd end up back in the hospital. I felt like it would be justice for my insurance company to have to pay for the re-admission if they refused to pay for the medication. But, I'm not truly that petty, I didn't want to go back to the hospital, and I wanted the pain to be gone, so I paid the money.
In the end, it turned out that, with prior approval, my insurance company will pay for the brand name Oxycontin, but not the generic. I've now gotten that prior approval, and my local pharmacy is carrying the brand name just for my needs. That's one advantage of living in a small town, where the pharmacists know me and my condition well. They are willing to change their stock just to help my needs. And, UVMMC turned over my co-pay issue to a social worker. Through a grant, I got back about 60% of the cost of the prescription.
So, I now had my pain under control. But, these new pain meds mean that I can't really drive anymore, which has created a new burden for my wife. She had always been the driver on our commute, but I usually dropped her off in the morning and took the car for the day. She is now dropping me off, and she needs to come with me on every medical appointment. I feel bad for the burden on her, but I'm not going to risk driving with pain meds in my system.
So, with the pain under control, I still had two issues to fight. First, I needed to get treatment re-started. It's been two months since I found out that the last treatment failed - two months of allowing my tumors to grow without fighting back. At this point in time, I have to assume that the proton beam therapy is not going to happen, and we need to start a systemic treatment as an alternative. And, I had to work on my nausea, which had been getting worse by the day.
First, let's talk about treatments. When I was last at Sloan Kettering, the medical oncologist that I see there had suggested a drug called Eribulin. It is an older drug that's been around for a while and I think it's often used in breast cancer treatment. My local medical oncologist had suggested Trabectidin, which is a newer drug that is specific to sarcomas, if not just liposarcoma.
As the prospects for the proton beam therapy dropped, and my symptoms began to increase, I started to rely more and more on my local medical oncologist. She scheduled me for a CT scan on Wednesday of this week. That was followed by an appointment yesterday - Thursday. In the appointment, she said she was fine using either of the drugs, but that she'd gone along with the Sloan Kettering recommendation and scheduled me to start Eribulin immediately.
I had no qualms with that. I am concerned that Eribulin tends to have more side effects than Trabecticin, but that isn't the most important thing right now. Getting started with a treatment was the most important thing. So, I did have a treatment yesterday and I'm now on Eribulin. It's given in a 21 day cycle, with infusions on days 1 and 8 and a Neulasta injection on day 9. I will probably end up doing the Neulasta with their OnPro technology - a high-tech patch that goes on your arm at the end of chemo and does the injection automatically 24 hours later.
So, treatment is taken care of for now.
The nausea problem peaked last weekend. It got to the point where I vomited from the nausea 3 days in a row, and I was barely eating anything. I was resorting to milk shakes made with Ensure just to get some calories into my system. Most days, I was able to eat fewer than 1000 calories. At my appointment yesterday, I found out that my weight has dropped almost 20 pounds since August.
Early this week, the doctor had me greatly increase my dosage of Compazine, an anti-nausea drug that I have a prescription for during chemo. I was taking it once a day at 5mg. They had me start taking 10mg every six hours and the nausea now seems to be at bay. I had a bit of nausea this morning, the day after chemo, but not so bad that I vomited.
Hopefully, the chemo won't increase the nausea beyond manageable levels.
So, that's it. Pain is under control. Nausea is under control. And, I've started a new treatment. Now, we wait and hope the treatment works.
Let me catch you up.
So, insurance still has not approved, nor have they officially denied, my request for proton beam radiation. But, I simply can't wait anymore. Things have been getting worse and it was time for action.
Since I last posted, the pain issue really exploded. My pain levels were drastically increasing and my pain medications just weren't keeping up. It really peaked on a Monday and I had to call in sick. I couldn't get in to see my primary care provider, so she suggested that I visit the Emergency Department at our local hospital instead. So, I did that. I spent about 5 hours there, and at the end, they just threw a new prescription at me for a slightly stronger pain medication and they sent me home. I was supposed to follow up with my PCP on the pain medicine.
So, the next day, I called in sick again and used the new pain medicines. They didn't help. By now, my PCP had given me her cell phone number and she and I were texting back and forth. On Wednesday morning, when things weren't better, she suggested that I go to the ED at one of the two teaching hospitals in our region. Since my wife and I work in Burlington, I had my wife take me to the ED at the University of Vermont Medical Center. I ended up spending the entire day there.
The first thing they did was just try to get my pain levels under control. It took two injections of morphine to establish a baseline level of control. Four hours later, it took three more injections to keep things under control. But, the good thing about this hospital vs. the one I visited on Monday is that they wanted to figure out why my pain levels were so much higher. They did some imaging and found that my tumors had grown significantly since August. The larger tumors were creating pressure on nerves and that was causing the pain.
Late in the day, the doctor I'd been working with (Dr. Claus - the poor guy must have been tortured his whole life for that name) suggested two options. The first was that he could take a guess at a prescription that would work going forward and send me home. Or, I could be admitted and have a pain specialist from the oncology clinic work with me to establish control of the pain. He offered them to me as almost a 50-50 choice, assuming that I was averse to being admitted. But, to me it was a no-brainer and I chose to be admitted. That afternoon, before they could even admit me, I was interviewed by two pain specialists. They knew about the tumor growth.
By the time I'd been admitted, they had a plan they wanted to try - Oxycontin with oxycodone for breakthrough pain. I've found out since then that there is a lot of controversy about whether or not Oxycontin really works for the full 12 hours as advertised. In something like half of all patients, it works for less than 12 hours, and it needs to be supplemented with other pain medications. So, we started the Oxycontin on Wednesday night and I was able to sleep through the night for the first time in a while.
On Thursday, the doctors seemed quite happy with themselves, having found something that worked so quickly. I was discharged late Thursday afternoon with 2 new prescriptions. I was happy that we had a solution. Until, that is, we reached the pharmacy. It turned out that Oxycontin isn't covered by my insurance. I had two options - pay $541 out of pocket or pay for a lesser amount that I could choose. But, if I chose a lesser amount, the rest of the prescription would be invalid. I was torn. I knew that if I didn't fill the prescription, I'd end up back in the hospital. I felt like it would be justice for my insurance company to have to pay for the re-admission if they refused to pay for the medication. But, I'm not truly that petty, I didn't want to go back to the hospital, and I wanted the pain to be gone, so I paid the money.
In the end, it turned out that, with prior approval, my insurance company will pay for the brand name Oxycontin, but not the generic. I've now gotten that prior approval, and my local pharmacy is carrying the brand name just for my needs. That's one advantage of living in a small town, where the pharmacists know me and my condition well. They are willing to change their stock just to help my needs. And, UVMMC turned over my co-pay issue to a social worker. Through a grant, I got back about 60% of the cost of the prescription.
So, I now had my pain under control. But, these new pain meds mean that I can't really drive anymore, which has created a new burden for my wife. She had always been the driver on our commute, but I usually dropped her off in the morning and took the car for the day. She is now dropping me off, and she needs to come with me on every medical appointment. I feel bad for the burden on her, but I'm not going to risk driving with pain meds in my system.
So, with the pain under control, I still had two issues to fight. First, I needed to get treatment re-started. It's been two months since I found out that the last treatment failed - two months of allowing my tumors to grow without fighting back. At this point in time, I have to assume that the proton beam therapy is not going to happen, and we need to start a systemic treatment as an alternative. And, I had to work on my nausea, which had been getting worse by the day.
First, let's talk about treatments. When I was last at Sloan Kettering, the medical oncologist that I see there had suggested a drug called Eribulin. It is an older drug that's been around for a while and I think it's often used in breast cancer treatment. My local medical oncologist had suggested Trabectidin, which is a newer drug that is specific to sarcomas, if not just liposarcoma.
As the prospects for the proton beam therapy dropped, and my symptoms began to increase, I started to rely more and more on my local medical oncologist. She scheduled me for a CT scan on Wednesday of this week. That was followed by an appointment yesterday - Thursday. In the appointment, she said she was fine using either of the drugs, but that she'd gone along with the Sloan Kettering recommendation and scheduled me to start Eribulin immediately.
I had no qualms with that. I am concerned that Eribulin tends to have more side effects than Trabecticin, but that isn't the most important thing right now. Getting started with a treatment was the most important thing. So, I did have a treatment yesterday and I'm now on Eribulin. It's given in a 21 day cycle, with infusions on days 1 and 8 and a Neulasta injection on day 9. I will probably end up doing the Neulasta with their OnPro technology - a high-tech patch that goes on your arm at the end of chemo and does the injection automatically 24 hours later.
So, treatment is taken care of for now.
The nausea problem peaked last weekend. It got to the point where I vomited from the nausea 3 days in a row, and I was barely eating anything. I was resorting to milk shakes made with Ensure just to get some calories into my system. Most days, I was able to eat fewer than 1000 calories. At my appointment yesterday, I found out that my weight has dropped almost 20 pounds since August.
Early this week, the doctor had me greatly increase my dosage of Compazine, an anti-nausea drug that I have a prescription for during chemo. I was taking it once a day at 5mg. They had me start taking 10mg every six hours and the nausea now seems to be at bay. I had a bit of nausea this morning, the day after chemo, but not so bad that I vomited.
Hopefully, the chemo won't increase the nausea beyond manageable levels.
So, that's it. Pain is under control. Nausea is under control. And, I've started a new treatment. Now, we wait and hope the treatment works.
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