Once more unto the breach of practically indecipherable medical claims data. I discovered yet another undisclosed cost today: prescriptions! This latest adventure is after the fold. To avoid keeping you in suspense, please attempt to digest the updated grand total from 7/25/15 - 7/18/17:
Grand total: 932,206.32
Chemotherapy 112,638.30
Chemotherapy-related 146,856.91 (Neulasta)
Clinic/Consultation 19,352.55
Emergency Room 4,118.00
Inpatient 259,689.98
Labs/Scans 86,508.84
Medical Mileage 222.12
Medical Supplies 9,238.12
Prescriptions 5,582.53
Radiation 119,350.62
Surgery 167,175.16
---------------------------------------------
TOTAL 930,733.13
then add in the updated out-of-pocket breakdown:
Clothing/supplies 293.75
Copays- appts 375.00*
Copays- scrips 170.70*
Food 385.44
Parking 794.00
---------------------------------------------
TOTAL OOP 2,018.89
*For these two line items, since full costs are in the non-OOP groupings, I realized I was
double-counting them in the grand total; they are still listed to identify
amounts I actually paid (vs. what insurance covered) but I have removed
them from the grand total.
So, about another ~$55K since my last update. This is almost all surgery/inpatient; there are a couple different imaging procedures in there as well. If you can have cancer without having any surgery that is clearly the way to go.
As for the continuing saga -- this time around I tried again to review my claims on the BCBS member portal, and again I was unable to -- the one link I could find to "view your claims here" redirected me to a page where I could review my benefits. I requested another claims listing from member services, again reported this bug, and this time the person responding indicated that my account was never fully activated and this is why I couldn't view my claims. (The first time I reported this hyperlink bug it was dismissed with a "if it's still a problem let us know and we'll pass it on to our web services team." I didn't follow through that time.) I got the new .pdf claims listing and also got my PIN reset and instructions to activate it, and lo and behold, a new option to "Review Claims" showed up in the "My Account" menu, and I could actually review them.
Viewing claims online was about the same experience as looking at them on the EOBs or the .pdf listings that member services provided. The online experience felt more complete as you could drill-down from summary info to the specific claim detail; still the same info, just a different presentation. I could not export in any format, though I could print what was on the page (read: still manual entry to analyze). And there was still a bug: after drilling down into a claim's detail and then going back to the listing (via an easily identifiable button to do so), I could not drill down into a second claim. Instead I was brought to an error page that just said "ERROR:" and nothing else. I had to hit the back button a dozen times to get to the original log in page, and when I logged in again (thinking the portal had logged me out) I was again brought to the error page. Closing the individual browser window did not resolve; I had to clear cache / delete cookies or close the browser entirely to be able to log in again and view a single claim's detail per login session. Less than convenient.
A major difference from paper however is the search & reporting capability. Online I could choose a category of service and review just those claims for a custom date range (rolling two years' worth is available). As it happens, there is a category just for "Pharmacy" and these costs were not included in the EOBs or the .pdf listings from member services, or the print-out the pharmacy gives you with your medication (I checked the one I picked up most recently).
So, how hard can insurance companies make this, exactly? Portals that are buggy and error out, costs that aren't even available in the usual ways... I have found two bugs in as many hours trying to get my own medical claims information. Who is going to spend even that much time? And for the big data efforts out there, all the research and reporting on this subject in the last decade -- where are we even getting information on costs for medical services and prescription drugs? The providers themselves? Medical organizations like hospitals? Insurance companies? Pharmaceutical companies? Patients??
Because NONE of these sources, by themselves, appears to be meaningful or accurate. I don't know how we can expect to find a way to provide affordable medical care for every single citizen of our country without the RIGHT DATA. As of this blog, I have posted about this topic eight times:
8/28/15: https://eemthomas.blogspot.com/2015/08/everyone-needs-health-insurance.html
10/25/15: https://eemthomas.blogspot.com/2015/10/the-cost-of-cancer_25.html
1/3/16: https://eemthomas.blogspot.com/2016/01/the-cost-of-cancer-updated.html
2/7/16: https://eemthomas.blogspot.com/2016/02/the-cost-of-cancer-updated.html
8/28/16: https://eemthomas.blogspot.com/2016/08/the-cost-of-cancer-updated.html
1/8/17: https://eemthomas.blogspot.com/2017/01/the-cost-of-cancer-updated-also.html
4/9/17: https://eemthomas.blogspot.com/2017/04/the-cost-of-cancer-updated-hang-on-to.html
I've probably spent, at least, a full 40 hours on these 8 posts, between data entry and analysis and hunting down claims data when I realized I had to and trying to write something coherent about it all. I did that just for me and just for fun. Who in their right mind is gonna spend that time? We are all of us woefully misinformed.
Say it with me: SINGLE PAYER. But before then, as Cosmo in Sneakers so succinctly put it, "It's all about the information." Seriously. If anyone knows of real heavy duty medical claims or expense data whacking going on out there, let me know. Possible I should be looking into a career change.
Friday, August 4, 2017
Monday, July 31, 2017
Anniversaries
Two years ago on this day my cancer diagnosis was confirmed. I have lots of anniversaries now. I remember all the dates:
3/6 - the stomach bug I never had
7/26 - the day it all started
7/28 - surgery 1 of 4
7/31 - diagnosis confirmed
8/27 - surgery 2 of 4 (aka the big one)
9/28 - first chemo
10/5 - first day back in the office post-diagnosis
12/21 - allergic reaction to chemo
2/29 - last chemo
3/23 - first radiation
4/29 - last radiation *end of treatment*
6/15 - first post-treatment scan (of many)
2/24 - surgery 3 of 4
5/10 - surgery 4 of 4 *end of surgeries*
I did not look them up; they are etched in my gray matter. I have also named my summers:
2015 - Summer of Shock
2016 - Summer of Recuperation
2017 - Summer of Frankenbelly
I expect that 2018 will be the Summer of Not Thinking Much About This Anymore.
3/6 - the stomach bug I never had
7/26 - the day it all started
7/28 - surgery 1 of 4
7/31 - diagnosis confirmed
8/27 - surgery 2 of 4 (aka the big one)
9/28 - first chemo
10/5 - first day back in the office post-diagnosis
12/21 - allergic reaction to chemo
2/29 - last chemo
3/23 - first radiation
4/29 - last radiation *end of treatment*
6/15 - first post-treatment scan (of many)
2/24 - surgery 3 of 4
5/10 - surgery 4 of 4 *end of surgeries*
I did not look them up; they are etched in my gray matter. I have also named my summers:
2015 - Summer of Shock
2016 - Summer of Recuperation
2017 - Summer of Frankenbelly
I expect that 2018 will be the Summer of Not Thinking Much About This Anymore.
Tomorrow I'll request additional claims detail from Blue Cross, through today, and we'll see what two years of a stage IV colorectal cancer diagnosis gets us in total.
More news as events warrant. A happy summer to all.
Tuesday, July 4, 2017
July 4th, interrupted
This weekend was almost deja vu all over again.
I had a long 4-day holiday weekend to look forward to and it started well enough. On Saturday morning I walked the boy to martial arts, made a quick shoe shopping trip for him and Dad ahead of our vacation, and made plans for a trip to the Arlington reservoir after lunch. Driving home before lunch I started to get some abdominal cramping. It happened a couple of times on the twenty minute drive and I figured it was just indigestion.
I ate some lunch - more of the take-out I had the night before, which no one else had eaten - and started getting things together for the res. The cramps kept coming and were now annoying. My daughter had some friends over and they needed a ride somewhere, so we made a time. When that time came I was still able to drive but was nervous. It was a short drive; I had one hand on the wheel and another across my stomach the whole time. We had a plan for me to pick them up in a few hours.
I got home and told my son I didn't think we could go to the res after all, mommy was feeling sick. In another half hour the cramps were painful and I was scared. I texted my daughter that it might be her stepdad coming to pick her up and tried to distract Connor with other things to do. And then I was violently ill and lost (at least) my lunch. That provided a little relief.
So, what, food poisoning? Maybe. The next couple of hours were a little bit better and then it started again. I started to worry about bowel obstruction given my recent surgeries. I had my surgeon paged who said at this point it was hard to tell - symptoms could be attributed to food poisoning or an obstruction, but it's hot out and dehydration (in either case) is a concern. She said try to stick it out another couple of hours but if nothing improves just go to the emergency room. She was actually on call that weekend and would be around. If I went in they would likely admit me so I could get fluids, and they'd probably do a scan, and if it was an obstruction they would do "bowel rest" to see if it cleared on its own (which apparently happens in many cases). I really, really, really did not want to go back to the hospital, even for fluids and rest.
I was sick again after speaking with her. I was miserable with anxiety and cursed my bad luck. I had very painful cramps most of the night and was ill once more before the next morning. I tried to sip water throughout the day on Sunday and basically didn't move unless I had to. Connor still wanted a trip to the res - I told him we'd try. I felt a little better after trying to hydrate all morning so we went in the afternoon, just for a couple hours. Cramps still came but were less painful, a little less frequent, always in the same spot, right underneath my latest and greatest scar. I tried some broth for dinner and a couple crackers, couldn't get much down, but what I ate stayed down. I got a little more sleep but the pain woke me up three times that night.
This was all reminiscent of radiation treatment, when the cramps were so painful I basically stopped eating for two weeks. Lived off of mashed potatoes for a few days. But I was not going through radiation treatment so what in the world was happening, and why did it have to happen during my 4-day weekend??
Yesterday morning I was exhausted and weak. Still did not want to go to the hospital. I had toast and lots of water for breakfast and that stayed down, and it helped. I took a short walk. I had an egg for lunch. I went back to the res with Connor again (our original plan was to go every day this long weekend - had to catch up). I had mac & cheese for dinner. Everything stayed down. Cramps were much less frequent, still in the same place, and by now were very tolerable versus agonizing. I sent an email to my surgeon to let her know how I was doing and to see if I should try and make an appointment, or just see how things go from here.
Last night I was able to sleep without any cramps or pain and even had lots of weird and fun dreams. This morning I am drinking coffee again and haven't had a cramp since sometime early last night. My belly feels a bit sore but nothing hurts, even if I push all around. It never felt hard or looked distended and my GI function was otherwise normal the whole time. It just hurt like the dickens.
Food poisoning, then? Partial obstruction that cleared by itself? Who knows. What I do know is that every tiny twinge in my abdomen will always trigger huge anxiety and fear. I used to worry about traveling when I had the colostomy bag, should some unforeseen event happen and I wouldn't have enough supplies, things like that. Now I worry about where the closest major hospital is in case something like this happens and I do in fact need a scan or something more. I can never not worry.
That, and I will probably never eat boneless honey bbq chicken wings with blue cheese ever again.
I had a long 4-day holiday weekend to look forward to and it started well enough. On Saturday morning I walked the boy to martial arts, made a quick shoe shopping trip for him and Dad ahead of our vacation, and made plans for a trip to the Arlington reservoir after lunch. Driving home before lunch I started to get some abdominal cramping. It happened a couple of times on the twenty minute drive and I figured it was just indigestion.
I ate some lunch - more of the take-out I had the night before, which no one else had eaten - and started getting things together for the res. The cramps kept coming and were now annoying. My daughter had some friends over and they needed a ride somewhere, so we made a time. When that time came I was still able to drive but was nervous. It was a short drive; I had one hand on the wheel and another across my stomach the whole time. We had a plan for me to pick them up in a few hours.
I got home and told my son I didn't think we could go to the res after all, mommy was feeling sick. In another half hour the cramps were painful and I was scared. I texted my daughter that it might be her stepdad coming to pick her up and tried to distract Connor with other things to do. And then I was violently ill and lost (at least) my lunch. That provided a little relief.
So, what, food poisoning? Maybe. The next couple of hours were a little bit better and then it started again. I started to worry about bowel obstruction given my recent surgeries. I had my surgeon paged who said at this point it was hard to tell - symptoms could be attributed to food poisoning or an obstruction, but it's hot out and dehydration (in either case) is a concern. She said try to stick it out another couple of hours but if nothing improves just go to the emergency room. She was actually on call that weekend and would be around. If I went in they would likely admit me so I could get fluids, and they'd probably do a scan, and if it was an obstruction they would do "bowel rest" to see if it cleared on its own (which apparently happens in many cases). I really, really, really did not want to go back to the hospital, even for fluids and rest.
I was sick again after speaking with her. I was miserable with anxiety and cursed my bad luck. I had very painful cramps most of the night and was ill once more before the next morning. I tried to sip water throughout the day on Sunday and basically didn't move unless I had to. Connor still wanted a trip to the res - I told him we'd try. I felt a little better after trying to hydrate all morning so we went in the afternoon, just for a couple hours. Cramps still came but were less painful, a little less frequent, always in the same spot, right underneath my latest and greatest scar. I tried some broth for dinner and a couple crackers, couldn't get much down, but what I ate stayed down. I got a little more sleep but the pain woke me up three times that night.
This was all reminiscent of radiation treatment, when the cramps were so painful I basically stopped eating for two weeks. Lived off of mashed potatoes for a few days. But I was not going through radiation treatment so what in the world was happening, and why did it have to happen during my 4-day weekend??
Yesterday morning I was exhausted and weak. Still did not want to go to the hospital. I had toast and lots of water for breakfast and that stayed down, and it helped. I took a short walk. I had an egg for lunch. I went back to the res with Connor again (our original plan was to go every day this long weekend - had to catch up). I had mac & cheese for dinner. Everything stayed down. Cramps were much less frequent, still in the same place, and by now were very tolerable versus agonizing. I sent an email to my surgeon to let her know how I was doing and to see if I should try and make an appointment, or just see how things go from here.
Last night I was able to sleep without any cramps or pain and even had lots of weird and fun dreams. This morning I am drinking coffee again and haven't had a cramp since sometime early last night. My belly feels a bit sore but nothing hurts, even if I push all around. It never felt hard or looked distended and my GI function was otherwise normal the whole time. It just hurt like the dickens.
Food poisoning, then? Partial obstruction that cleared by itself? Who knows. What I do know is that every tiny twinge in my abdomen will always trigger huge anxiety and fear. I used to worry about traveling when I had the colostomy bag, should some unforeseen event happen and I wouldn't have enough supplies, things like that. Now I worry about where the closest major hospital is in case something like this happens and I do in fact need a scan or something more. I can never not worry.
That, and I will probably never eat boneless honey bbq chicken wings with blue cheese ever again.
Thursday, June 15, 2017
Scans & Shirts
I had my every-six-months CT scan yesterday. I almost pulled a vasovagal with the IV. I was proactively reclined and adequately distracted; a minute after it was in I felt the now familiar sinking of my blood pressure. Deep breaths and a cool cloth pulled me back from the edge. Typically I see my oncologist on Fridays for the results, but this time we had to reschedule for Monday. A whole weekend of scanxiety.
2 out of 3 bloodwork results came in last night. My glucose is high. It was high during my last hospital stay too; they tested me three times for that. Now I'm convinced I have diabetes. My daughter's advice: "Put the phone down, Mom. Google does not have a medical degree."
I am still waiting for the CEA result (tumor marker).
Today I'm wearing a shirt that is tucked into my pants. I haven't been able to do that for almost two years. I still have a hole in my belly but it's the size of a mouse nibble now instead of... something maybe fifty times the size of a mouse nibble. Pretty amazing, this body healing itself stuff.
So, a pretty good day so far.
Sunday, June 4, 2017
Monday, May 29, 2017
In appreciation - end of an era
Today I am going through all my unused ostomy supplies so I can donate them to Friends of Ostomates Worldwide. For nearly two years I carried extra supplies with me wherever I went. I even took them to the hospital when I went in for my last surgery, just in case. It is strange to think that just like that I no longer need them.
It is hard to understand the great wide world of necessary medical supplies until you need them. I did not know what an ostomy was until I was told I was going to have one, way back when. I did not know what its maintenance would entail until I watched the nurses at Mt. Auburn Hospital take care of mine and then try and teach me how to do the same. In the early days, I would spend at least an hour with the visiting nurse when I had to change my appliance. My first stoma had the awful plastic bridge under it which made it nearly impossible to do, and quite painful, too. The supplies I used were absolutely necessary and made life as I knew it before cancer possible. The only thing I could not do was lie on my stomach - and there are supplies that can even make that possible and comfortable, too. (I was not comfortable with the idea of it; when I had to for radiation treatment, there was a special donut thing I rested on, and it was all very weird. Still weird thinking about it.)
This is just to say that without these supplies I would not have been able to go back to work, ride my bike, even leave my house. To think that there are ostomates who do not have access to supplies or cannot afford what they need breaks my heart. With the right supplies and knowledgeable support, ostomates can do everything anyone else can. Well done, FOW, well done.
It is hard to understand the great wide world of necessary medical supplies until you need them. I did not know what an ostomy was until I was told I was going to have one, way back when. I did not know what its maintenance would entail until I watched the nurses at Mt. Auburn Hospital take care of mine and then try and teach me how to do the same. In the early days, I would spend at least an hour with the visiting nurse when I had to change my appliance. My first stoma had the awful plastic bridge under it which made it nearly impossible to do, and quite painful, too. The supplies I used were absolutely necessary and made life as I knew it before cancer possible. The only thing I could not do was lie on my stomach - and there are supplies that can even make that possible and comfortable, too. (I was not comfortable with the idea of it; when I had to for radiation treatment, there was a special donut thing I rested on, and it was all very weird. Still weird thinking about it.)
This is just to say that without these supplies I would not have been able to go back to work, ride my bike, even leave my house. To think that there are ostomates who do not have access to supplies or cannot afford what they need breaks my heart. With the right supplies and knowledgeable support, ostomates can do everything anyone else can. Well done, FOW, well done.
Saturday, May 20, 2017
Post-op -- unpacked & immersible
On Thursday I saw my surgeon for my post-op appointment. Everything is perfectly awesomely fine. My GI system is woke a.f., if I may use the parlance of the day. Also, there is no bag on my belly. There is still a hole on my belly; it is more shallow by the day and no longer needs to be packed at all. I don't need any pain medication any more, not even Tylenol.
I even got the okay to shower without said hole covered. It is okay to let water run over it, around it, into it. This is a Big Deal. Do you know how long it's been since I took a normal shower? By normal I mean a shower in which I didn't have to think about which part of my body or my body's accessories I should try to keep dry. It has been A VERY LONG TIME. It has been since July 28, 2015. It was always okay to get the ostomy bag wet but if I did it would have to dry before I could get dressed. (They have various accessories to help with this but I never invested in them; this was me being optimistic about my long-term prospects. Glad that worked out.) It was not okay to get incisions wet until they had healed to a certain extent. It was never okay to shower when the chemo pump was accessing my port. I am grateful for gymnastics early in life and yoga later in life: these allowed me to take oh so many showers with my belly away from the water, back arched so I could still wash my hair, or with the detached shower head in one hand, balancing as necessary to wash the rest of me, all without getting things wet that should not be wet.
I'll also repeat one thing from above: there is no bag on my belly. This is also a Big Deal. I have neglected half my wardrobe since July 28, 2015 because I had to. I have not done things like run, or swim, or lie on my stomach since July 28, 2015. I have tried not to eat gas-inducing foods because the ultimate release of that gas could not be controlled. With the end colostomy that would prolapse at some point each and every day, my insides would get tired and achy trying to keep everything in. With the ileostomy I was in the bathroom 8 times a day. All of this no longer applies.
Let the Summer of Belly Rebirth begin.
I even got the okay to shower without said hole covered. It is okay to let water run over it, around it, into it. This is a Big Deal. Do you know how long it's been since I took a normal shower? By normal I mean a shower in which I didn't have to think about which part of my body or my body's accessories I should try to keep dry. It has been A VERY LONG TIME. It has been since July 28, 2015. It was always okay to get the ostomy bag wet but if I did it would have to dry before I could get dressed. (They have various accessories to help with this but I never invested in them; this was me being optimistic about my long-term prospects. Glad that worked out.) It was not okay to get incisions wet until they had healed to a certain extent. It was never okay to shower when the chemo pump was accessing my port. I am grateful for gymnastics early in life and yoga later in life: these allowed me to take oh so many showers with my belly away from the water, back arched so I could still wash my hair, or with the detached shower head in one hand, balancing as necessary to wash the rest of me, all without getting things wet that should not be wet.
I'll also repeat one thing from above: there is no bag on my belly. This is also a Big Deal. I have neglected half my wardrobe since July 28, 2015 because I had to. I have not done things like run, or swim, or lie on my stomach since July 28, 2015. I have tried not to eat gas-inducing foods because the ultimate release of that gas could not be controlled. With the end colostomy that would prolapse at some point each and every day, my insides would get tired and achy trying to keep everything in. With the ileostomy I was in the bathroom 8 times a day. All of this no longer applies.
Let the Summer of Belly Rebirth begin.
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