I'm now about 3 weeks into Proton Beam Therapy at Penn with two more to go. After my insurance rejected the therapy three times, my company (ConocoPhillips) actually stepped in the day before I was schedule to start the more harmful treatment and overruled Aetna, somehow forcing them to approve and cover the proton therapy. The doctor and billing manager at Penn were amazed as they had never witnessed an insurance company get manhandled like that before. Obviously I now owe more to Big Oil than I could ever repay. The effectiveness of the proton treatment isn't any better but long-term it should be less damaging to my heart and lungs which are right in the treatment area. Kind of important to keep those in "good" shape.
So far the physical side effects of treatment haven't been to bad, just a minor rash on my chest and some difficulty swallowing. The mental side effects however...there's a lot of waiting around and driving into Philly every day is taking it's toll. The proton machines operate within a very fine level of tolerance and if anything is a little off, it won't deliver treatment. Thinks are off pretty frequently and the delays really add up for the appointments later in the day. Even today when my treatment was slotted for 9:30, just 1.5 hours after they start, I didn't get treated until 11:30. As for the driving, some of these other idiots on the road around me aren't going to make it through this experience. It only took me one week of driving to treatment before I rediscovered my aggressive driving talents and I now own I-76 within a three exit radius of Penn.
Other than that, the fatigue of all the treatment over the past year and a half is really adding up and taking it's toll. I have a much better understanding of how defeating it can be to start exercising when seemingly low levels of activity induce huffing and puffing. I'll be heading back into the the thick of Alaska summer though so I can't afford to let myself go too far. I plan to hit the ground running/riding/climbing when I get back, even if it's more like crawling.
Julie started the long drive back to Anchorage with her sister Angie (and Niko the Dog) on Saturday so she is already on her way home. I hope to join her in a couple of weeks. I'm not putting a date out there because something always comes up and then I'm a liar. They won't do a follow up scan until 2-4 weeks after I'm done getting treatment though so there is nothing for me to stick around for once I'm done. The results of the scan will dictate what I do in September. Cancer can do what it wants for awhile after this radiation, I'm taking the rest of the summer.
Tuesday, May 27, 2014
Saturday, April 19, 2014
Treatment - Round 5
Yes, this is really the 5th round of treatment. This was originally going to be a negative post about how every time we set a date to get back to Alaska, we are forced to change it, but I think we've had enough negative posts for a bit. We got some mixed news this past week but overall I'd call it "good" in the grand scheme of things because we finally have a plan to move forward.
Bad 1: Insurance denied three requests to get Proton Beam Therapy at Penn so that's not happening. While no more effective than regular radiation, it is supposed to do significantly less collateral damage to the non-cancerous tissues and organs, ie my heart and lungs. This is key because this time around they'll be irradiating my chest. They refused to cover it because it is not an approved treatment for Hodgkins lymphoma on my plan. No amount of evidence that is is being used many places to successfully treat Hodgkins would sway them. Not approved for that usage under my plan...end of story. A month of waiting for insurance, completely wasted.
Good 1: After briefly considering paying for the PBT out-of-pocket, the doctor said the cost would not be commensurate with the value received, so we've moved onto a more "traditional" radiation plan. They'll still be doing a study where they'll be applying the radiation while I hold my breath so that my lungs are not moving while treating. I guess they can design the radiation fields so precisely that as long as things don't move, they can really minimize the exposure to my lungs as much as possible.
Bad 2: 27 more days of radiation treatment, significantly more than the 18 days for the first round of radiation.
Good 2: They needed to do a PET scan before starting this next round of treatment to see if the cancer had spread to any new areas. Given the speed with which it came back after the transplant and the 2+ months it's had to grow since it was first detected, we were very apprehensive about the results of the scan. The results came in and it had only spread to the node immediately adjacent to the one it was detected in before in my chest so it has not run rampant in the past 2 months.
The Plan: 27 days of radiation at Penn starting (hopefully) this coming Tuesday. They'll do partial radiation to any site that has had disease in the past and has not been treated by radiation yet, followed by more extensive radiation to the sites in my chest where it is currently active. Then we leave? I'm not even going to set a date on that because then I'll just be proven a liar again.
Bad 1: Insurance denied three requests to get Proton Beam Therapy at Penn so that's not happening. While no more effective than regular radiation, it is supposed to do significantly less collateral damage to the non-cancerous tissues and organs, ie my heart and lungs. This is key because this time around they'll be irradiating my chest. They refused to cover it because it is not an approved treatment for Hodgkins lymphoma on my plan. No amount of evidence that is is being used many places to successfully treat Hodgkins would sway them. Not approved for that usage under my plan...end of story. A month of waiting for insurance, completely wasted.
Good 1: After briefly considering paying for the PBT out-of-pocket, the doctor said the cost would not be commensurate with the value received, so we've moved onto a more "traditional" radiation plan. They'll still be doing a study where they'll be applying the radiation while I hold my breath so that my lungs are not moving while treating. I guess they can design the radiation fields so precisely that as long as things don't move, they can really minimize the exposure to my lungs as much as possible.
Bad 2: 27 more days of radiation treatment, significantly more than the 18 days for the first round of radiation.
Good 2: They needed to do a PET scan before starting this next round of treatment to see if the cancer had spread to any new areas. Given the speed with which it came back after the transplant and the 2+ months it's had to grow since it was first detected, we were very apprehensive about the results of the scan. The results came in and it had only spread to the node immediately adjacent to the one it was detected in before in my chest so it has not run rampant in the past 2 months.
The Plan: 27 days of radiation at Penn starting (hopefully) this coming Tuesday. They'll do partial radiation to any site that has had disease in the past and has not been treated by radiation yet, followed by more extensive radiation to the sites in my chest where it is currently active. Then we leave? I'm not even going to set a date on that because then I'll just be proven a liar again.
Monday, April 14, 2014
Got Ink?
Got any tattoos? Who's your favorite artist? When I get a craving for some new ink, I just go to my radiation oncologist. Check it out!
They use these little guys to position me within their radiation dealing machines. With the 6 new markers I got today, the total permanent tattoo count is now up to 11. Maybe one of these days I'll get one of my own choosing. Better yet, as a charity event, you bid on the right to tattoo a connector between any 2 markers. Movember/Manuary is looking pretty lame in comparison. You can't quite Connect 4® in a line yet, but that's a different game.
 |
| Please disregard the somewhat blumpy torso...it's been a tough year. |
They use these little guys to position me within their radiation dealing machines. With the 6 new markers I got today, the total permanent tattoo count is now up to 11. Maybe one of these days I'll get one of my own choosing. Better yet, as a charity event, you bid on the right to tattoo a connector between any 2 markers. Movember/Manuary is looking pretty lame in comparison. You can't quite Connect 4® in a line yet, but that's a different game.
Friday, March 28, 2014
How Many Oncologists Does it Take to...
Seriously! How many oncologists does it take to figure out a course of treatment? As soon as you go beyond 1, the question becomes impossible to answer because there's no way any 2 oncologists can come to a consensus on how to treat cancer that doesn't follow "the script." The sad fact is that despite billions of dollars spent on "research", when you don't react as expected/hoped to the standard treatment protocol, they just don't know. There is no right option so I'm left with a handful of different opinions on how to proceed. Every time discuss treatment with one doctor, they take the suggestions of the others to task: "While I respect Dr So-and-so, that just doesn't make any sense" or "Dr So-and-so is an idiot. Why would you do that?" So helpful. So I just have to pick one and hope I choose wisely? Wow
We had it narrowed down to a clinical trial at Columbia combining a newer drug (Brentuximab) with more chemo or Proton Beam Therapy (focused radiation) at Penn. We eventually decided on radiation because that offered the only chance (outside of another transplant) to possibly cure this permanently. Not much of a chance (10%) but still better then the other options which would just put it into remission for n months and then we'd have to do more treatment when it inevitably comes back. The only issue with the proton radiation is that it has not been widely used for Hodgkins and insurance companies don't like to cover it...naturally.
While waiting for a determination from the insurance company on what treatment they will cover for me at this point, I'm just sitting around growing out my cancer...doesn't it look pretty? Maybe it's for the best, we're just making sure it will be in full blossom when we finally do get around to treatment so we'll have big targets to aim at. I swear we'll be back in AK by June 1. That's when the trails will be ready to ride, right?
This week, all doctors seem to have stopped communicating with me so I have no idea where I stand. At least I'm getting a lot of work done or something.
...and so it goes.
We had it narrowed down to a clinical trial at Columbia combining a newer drug (Brentuximab) with more chemo or Proton Beam Therapy (focused radiation) at Penn. We eventually decided on radiation because that offered the only chance (outside of another transplant) to possibly cure this permanently. Not much of a chance (10%) but still better then the other options which would just put it into remission for n months and then we'd have to do more treatment when it inevitably comes back. The only issue with the proton radiation is that it has not been widely used for Hodgkins and insurance companies don't like to cover it...naturally.
While waiting for a determination from the insurance company on what treatment they will cover for me at this point, I'm just sitting around growing out my cancer...doesn't it look pretty? Maybe it's for the best, we're just making sure it will be in full blossom when we finally do get around to treatment so we'll have big targets to aim at. I swear we'll be back in AK by June 1. That's when the trails will be ready to ride, right?
This week, all doctors seem to have stopped communicating with me so I have no idea where I stand. At least I'm getting a lot of work done or something.
...and so it goes.
Friday, March 7, 2014
What Does Remission Mean to You?
What does the word remission mean to you? I'll tell you what it means to me: jackshit. Remission is a fucking lie. Nothing but a big fat lie. LIE LIE LIE LIE BIG FUCKING LIE. Sorry, I've made it point not to curse on this blog because I know family members and such read it, but at times it is appropriate and now is absolutely one of those times.
Remission is just a word the medical community uses when they can no longer see the cancer in the PET scan images. The problem with that is the fact that there is LOT those scans cannot detect. 1 billion cells (1,000,000,000) is the smallest tumor that is detectable by feel. 100 million cells (100,000,000) is the smallest tumor that is detectable in the PET scans. Below that number, they have no freaking clue what goes on, totally blind. You could have 99 million cancer cells and it wouldn't show in the scan and they'd call that complete remission, treatment stopped. Remission is a lie.
By now, I'm sure you can tell where this is going. Transplant didn't work, some cancer lived through it, I have another sizable tumor in my chest...yadda yadda yadda. We were so close to going back to Alaska. One last scan and then we're outta....whoops. Slow down their cowboy, you're not going anywhere. Not unless you want to take your little friend(s) there with you. Still Hodgkins, still Stage I or II (of 4) so I'm not in imminent danger of dying (yay) but it does not want to be killed and it does come back FAST. Not a great combo.
What comes next: We don't know yet. We're still trying to get back to Alaska but the treatment we select will drive that. Lots of choices, pretty much none of them guaranteed to cure it. Looks like I'll be "managing" this for some time until they do come up with something. The main thing is I'm trying to avoid another transplant, this time with a donor. That's the only full cure available but I think the success rate is too low to justify the risks/awesome side effects at this point. Plus the first one worked so well!!!
So that's my story, have a great weekend! Clinical trials, here we come!
...and please, easy with the questions. Like I said, at this point we don't have the answer and every doctor we talk to has a different answer.
Remission is just a word the medical community uses when they can no longer see the cancer in the PET scan images. The problem with that is the fact that there is LOT those scans cannot detect. 1 billion cells (1,000,000,000) is the smallest tumor that is detectable by feel. 100 million cells (100,000,000) is the smallest tumor that is detectable in the PET scans. Below that number, they have no freaking clue what goes on, totally blind. You could have 99 million cancer cells and it wouldn't show in the scan and they'd call that complete remission, treatment stopped. Remission is a lie.
By now, I'm sure you can tell where this is going. Transplant didn't work, some cancer lived through it, I have another sizable tumor in my chest...yadda yadda yadda. We were so close to going back to Alaska. One last scan and then we're outta....whoops. Slow down their cowboy, you're not going anywhere. Not unless you want to take your little friend(s) there with you. Still Hodgkins, still Stage I or II (of 4) so I'm not in imminent danger of dying (yay) but it does not want to be killed and it does come back FAST. Not a great combo.
What comes next: We don't know yet. We're still trying to get back to Alaska but the treatment we select will drive that. Lots of choices, pretty much none of them guaranteed to cure it. Looks like I'll be "managing" this for some time until they do come up with something. The main thing is I'm trying to avoid another transplant, this time with a donor. That's the only full cure available but I think the success rate is too low to justify the risks/awesome side effects at this point. Plus the first one worked so well!!!
So that's my story, have a great weekend! Clinical trials, here we come!
...and please, easy with the questions. Like I said, at this point we don't have the answer and every doctor we talk to has a different answer.
Wednesday, January 15, 2014
Going Home!
It's been pointed out to me by several people that it has been quite awhile since my last update. I guess it has, but there hasn't been a whole lot exciting going on around here. I made it home for the holidays which was good because we got to spend it with family but other than that, I've pretty much been under house arrest. I can go outside to walk around and stuff, I just can't be in public places.
I'm mostly out of the post-transplant danger zone at this point, I am just more susceptible to getting sick and when/if I do get sick it's going to hit me much harder and for much longer than usual. Best to be avoided but going a little nuts. I've been working out at home but it's not the same as hiking and skiing in the mountains.
Originally I we were supposed to stick around until the end of March for 100-days-post-transplant PET scan. However, since there is no monitoring before then and you can get a PET scan just as easily in AK as in PA/NJ, I was wondering what was the point of sitting around the house here all day when I've got stuff to do up there. We've got water damage in the house and I'm running out of the short term disability. Once I made it clear to my doctor that we had no intentions permanently returning to the east coast (sorry Moms) and that we wanted to get back to Alaska, she had no problem with us going a bit earlier. So, that's the big news. We're heading back to Alaska on Feb 18th. It's been great spending so much time with the family but at the same time I'm not able to enjoy many of the other perks that come with being back on the east coast: visiting friends, restaurants, concerts, etc. It's time to get back to our regular lives...whatever that may be at this point. Monkee is OUT OF SHAPE!
I'm mostly out of the post-transplant danger zone at this point, I am just more susceptible to getting sick and when/if I do get sick it's going to hit me much harder and for much longer than usual. Best to be avoided but going a little nuts. I've been working out at home but it's not the same as hiking and skiing in the mountains.
Originally I we were supposed to stick around until the end of March for 100-days-post-transplant PET scan. However, since there is no monitoring before then and you can get a PET scan just as easily in AK as in PA/NJ, I was wondering what was the point of sitting around the house here all day when I've got stuff to do up there. We've got water damage in the house and I'm running out of the short term disability. Once I made it clear to my doctor that we had no intentions permanently returning to the east coast (sorry Moms) and that we wanted to get back to Alaska, she had no problem with us going a bit earlier. So, that's the big news. We're heading back to Alaska on Feb 18th. It's been great spending so much time with the family but at the same time I'm not able to enjoy many of the other perks that come with being back on the east coast: visiting friends, restaurants, concerts, etc. It's time to get back to our regular lives...whatever that may be at this point. Monkee is OUT OF SHAPE!
Wednesday, December 18, 2013
Home from Transplant, What Now?
I got out of the transplant unit Monday afternoon and returned to my parent's in NJ where I'll remain until I am cleared to go back to Alaska which will at least be until March 13th, 100 days from transplant. From the day of transplant, it took my white blood cells 13 days to recover to the point that I could leave. I was shooting for the record of 10 days but went over, mostly because the radiation burns were peaking right as my counts went to 0. The weight is still dropping (not sure why) and at this point I'm down about 20 lbs from when I went in. The last time I saw 163 was probably early in college.
In all, I think I fared pretty well as far as side effects experienced vs expected. There was nausea but no vomiting, no explosive diarrhea, not a hint of a mouth sore or pain. Just a lot of fatigue. The most discomfort came from the lack of sleep due to people constantly checking on me and the constant itching/burning of my radiation burns when they were at their peak.
Now that I'm out, everyone has all sorts of "what now?" questions. I'll see if I can address them here:
Q: Are you cured?
A: Can't say at this point. They do another PET scan 100 days after the transplant (3/13) to make sure there is no evidence of cancer. If there isn't, I think I can go home. If there is...there won't be. Even if there isn't any cancer, they don't consider you "cured" until you've gone 5 years without a relapse, which is still a concern for me given the nature of the cancer I had.
Q: Are you allowed out?
A: At this point, no. I'm restricted from public places so I'm pretty much on lock-down at my parent's until my blood counts get up to a certain level which I need to find out from my doctor. The estimates for when these levels will be reached vary greatly depending on the person but we're thinking at least 30 days of "house arrest". Could be longer but hopefully not.
Q: Can you have visitors?
A: Yes, as long as no one in the household is sick and no young children. They may not be sick but they tend to be "carriers" from school/day care. E-mail, call, or text me if you're thinking about stopping by and we'll see what the schedule looks like. I'll be here for awhile though so no need to rush, especially since I'm not real "dynamic" right now.
Q: How do you feel?
A: Totally run down but making the best of it. I'm not sure if it's all the chemo I got, the low blood counts, or some combination therein but it's going to take me awhile to get back to my normal physical self. How long...again it varies greatly but I'm going to push to get back in shape as hard as allowable. I'm already making a point of walking at least a mile a day but after that, nap is required. I'm eating fine and sleeping a lot to make up for all the sleep deprivation while in the transplant unit.
In all, I think I fared pretty well as far as side effects experienced vs expected. There was nausea but no vomiting, no explosive diarrhea, not a hint of a mouth sore or pain. Just a lot of fatigue. The most discomfort came from the lack of sleep due to people constantly checking on me and the constant itching/burning of my radiation burns when they were at their peak.
Now that I'm out, everyone has all sorts of "what now?" questions. I'll see if I can address them here:
Q: Are you cured?
A: Can't say at this point. They do another PET scan 100 days after the transplant (3/13) to make sure there is no evidence of cancer. If there isn't, I think I can go home. If there is...there won't be. Even if there isn't any cancer, they don't consider you "cured" until you've gone 5 years without a relapse, which is still a concern for me given the nature of the cancer I had.
Q: Are you allowed out?
A: At this point, no. I'm restricted from public places so I'm pretty much on lock-down at my parent's until my blood counts get up to a certain level which I need to find out from my doctor. The estimates for when these levels will be reached vary greatly depending on the person but we're thinking at least 30 days of "house arrest". Could be longer but hopefully not.
Q: Can you have visitors?
A: Yes, as long as no one in the household is sick and no young children. They may not be sick but they tend to be "carriers" from school/day care. E-mail, call, or text me if you're thinking about stopping by and we'll see what the schedule looks like. I'll be here for awhile though so no need to rush, especially since I'm not real "dynamic" right now.
Q: How do you feel?
A: Totally run down but making the best of it. I'm not sure if it's all the chemo I got, the low blood counts, or some combination therein but it's going to take me awhile to get back to my normal physical self. How long...again it varies greatly but I'm going to push to get back in shape as hard as allowable. I'm already making a point of walking at least a mile a day but after that, nap is required. I'm eating fine and sleeping a lot to make up for all the sleep deprivation while in the transplant unit.
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