Alaska Update

That's right, if you hadn't heard, we're back in Alaska!  Sorry, I realize that some people rely on this for status updates and I've definitely been lax in that department but we've been busy...in a good way!

I finished my radiation treatment on June 6th and by the 8th, I was back in Alaska. No messing around. Took a week to get oriented but since then I've been back to work full time and we've been attacking the summer with reckless abandon. The radiation really hit my blood counts harder then I was expecting so it's been a bit of an uphill battle getting back into shape but I've been pushing it as much as possible. I'm not on any restrictions so I've just been going as hard as I can.  I compare it to training at altitude. When my counts do come back, I'll really be kicking ass.

I have no idea how the radiation went but it was never really a question of if it would work, just how long it's going to keep it at bay (permanently hopefully!). I'm not getting a follow up PET scan until the beginning of Sept because there's no way I'm risking more bad news while I'm enjoying the summer. Screw that. As long as I'm feeling good, no point in rocking the boat prematurely.

If you didn't see it on Facebook, this happened when I got back.

There'll be a third when the scan in September confirms the latest kill.

This also happened at the 2014 Single Speed World Championships here in Anchorage.

Yes, it was a bike event and no, no you can't unsee that. Somebody had to dance for the band and I told you I was going hard, now stop worrying.

Cancer Treatment Centers of America is a Scam

You've all seen the commercials or the billboards or the Google Ads when you search for anything cancer related. You can't spell the word "cancer" these days without coming across the Cancer Treatment Centers of America, CTCA for short.  For those of you how don't know about them: they are a for-profit corporation that specializes in cancer treatment. Obviously the "for-profit corporation" is where the trouble comes in.

Before I get into the reasoning here is my plea to you. If you or someone you know is diagnosed with cancer, do NOT, under any circumstance, send them to CTCA. They are a total scam and a fraud. Stick with the reputable cancer facilities that are associated with a university like MD Anderson (UTexas), Hutchinson (UWash), Penn, Temple, Hopkins, etc. I can't speak for CTCA's level of care but I can guarantee they will try to take you for all the money they possibly can. They are trying to stick me with a bill for $2800 for what amounts to a very fancy a second opinion visit. Can you imagine what an actual treatment bill would look like??? They pride themselves on the "mother standard of  care" but my mother never tried to steal from me like this. Cancer treatment doesn't have to cost tens of thousands of dollars...unless you go to CTCA (or have no insurance).

My Story
I suffered a relapse of Hodgkins lymphoma (my second), just two months after going through an autologous stem cell transplant. While there was 30-40% chance I would relapse within two years of the transplant, within two months is extremely rare so there was obviously a high level of concern. Since I was on the east coast, I decided I was going to solicit as many second opinions as possible for continuing my treatment. At the time, I was getting my care from Temple University and I immediately added Penn and Columbia with it's center specifically for lymphomas to my list. Since it was just 25 minutes from where I was staying, I figured it couldn't hurt to check out the CTCA facility in Philly to see if there was anything worthwhile behind the advertising machine.

I did a bit of research before my visit and determined that they had a reputation for cherry-picking patients with good insurance that would improve their survivability statistics. They were also not highly thought of amongst oncologists at the university-based centers. A final red flag was that they were known for billing a LOT to insurance.

Still, I figured it couldn't hurt to just go there for an opinion. I do have good insurance and I've received care in so many places at this point that I don't factor into any one institution's survivability statistics. It seemed like I'd be the goldmine patient to them.

They didn't make it easy. They first had to do a thorough insurance review and get pre-authorization from my insurance for the visit. That's fine, I actually prefer it that way as it assures my visit will be covered. Then you can't just go see an oncologist, oh no. You have to go through a 3-day new patient orientation that includes visits with the oncologist, naturopath, dietician, financial counselor, chaplain, psychologist, and a bunch of other crap you don't care about. The most interesting meeting was with the financial counselor where I informed them of their reputation and they assured me that I would be taken care of and that out-of-network differences and things not covered by insurance would simply be written off by CTCA. No expense to me.

My take away from this 3-day session was that 1) they didn't have anything different to offer as far as treatment options from the other facilities, 2) I did like their idea of incorporating diet, naturopath, and mental services into the core treatment, 3) they had a REALLY nice facility.  The lead oncologist agreed that the next step of my care could be accomplished at any facility and after speaking with me acknowledged that there was no reason I couldn't do it in Alaska and that would actually probably be better for me from a mental perspective. I left there knowing I wouldn't be going there for the next step of my treatment but considering it if I needed a second transplant because their transplant facilities were superior to anything I'd seen so far.

Fast forward two months, and I get my CTCA bill.  What would you expect to pay for a second opinion if you had good insurance?
$65? That's what it cost me at Temple.
$74? That's what it cost me to see the preeminent expert in the field of lyphomas at Columbia
$115? That's the combined cost to see the head of the lymphoma program at Penn as well as their proton radiation oncologist

NOPE, not even close. At this point, the bill for my 3-day orientation is at $2800.  That's right, $2800 for a second opinion.  How the hell did it get to that level you ask? Pretty quickly when you figure in the CTCA math. Of that $2800, I acknowledge $450 as "valid" co-insurance charges (insurance pays 80%, you pay 20%).  The rest comes from CTCA's particular brand of accounting.

Here's the basics: All facilities charge insurance way more for their services than they will ever get. You may remember the $15,000 shots I was getting at one point. Insurance set the rate for those shots at $5000 so that's what the facility got and they accepted it as such. I no way, shape, or form was I responsible for the $10,000 that was written off. This was consistent at all 8+ of the facilities I've been to across the US. In network, out of network, it didn't matter...until CTCA. In addition to the standard co-insurance, CTCA is billing me for 100% of the difference between what they billed insurance and what insurance set as the acceptable rate. For comparisons sake: In 2013 alone, my insurance was billed for $1.2 MILLION of which their combined allowable rate was 525K. If all facilities followed CTCA's accounting practices

This includes:
- $1300 in mostly unnecessary lab work. Despite the fact they had the results from labs taken at Temple just 2 weeks earlier, they insisted the consultation could not proceed without the lab work. SCAM
- Analysis of tumor tissue samples that 1) I did not authorize them to have (FRAUD), 2) was from tumors that had already been treated to remission (FRAUD), and 3) they never told me they were going to do it
- Administering of sedatives a week after my visit. I suppose since it was sedatives they could have come to my home and sedated me and I would never remember it. Was I roofied?

I have been battling them since receiving the bill and they are insisting that the difference in bill vs insurance rate is my responsibility. They will never see one cent of it. They don't know what they started. I can't believe how many people they must be screwing right now. It won't be easy to overcome that level of advertising but I am making it my new mission to expose CTCA for the FRAUD that they are. Stay tuned.....

Proton Therapy Update

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.

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.

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!

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.

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.

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.

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!