For old time's sake?

So, because nothing can be easy, my final ileostomy takedown has left me with the ocassional partial bowel obstruction.  It's happened five times since that surgery in May with varying degrees of pain.  At my 3-month surgical followup I described my symptoms and my surgeon recommended an MRI to see if a "stricture" might be present.  If so, and symptoms become intolerable, then surgery is an option to try and remove, or maybe dilate the intestine in that spot, or something similar - all dependent on what the imaging shows.

I already know I don't want more surgery.  I think I've had enough for one lifetime, and I can chew my food well and avoid super-fibrous things to mitigate.  But the image would be good information.  When making the appointment they gave me the basic rundown - no solid food for 6 hours before, drink lots of contrast, about 30 minutes for the actual imaging.  I asked if an IV was necessary and was told no.  

That was bad information.  Arriving here today it was confirmed I do need one.  And now I'm anxious because I have to drink a bunch of noxious liquid and have a needle stuck in my arm and am dreading a repeat of the February pre-surgery vasovagal episode from hell.

So here I am this morning, shivering in the basement of BWH, drinking barium sulfate solution and stressing out.  There's also the added bonus of barium-induced diarrhea later on.  GOOD TIMES.

Motivation

Today I walked a half marathon.  I'm training for the Jimmy Fund Marathon Walk, and per a sample training plan they publish, today was the half.  In the end I walked a tad extra, a total of 14 miles.  It was not easy.  I kept up a good pace and didn't stop to rest, and by the last couple of miles I was struggling; my heart was working too hard and it felt like my belly scars were sagging, pulling me towards the ground.

I started to think about how many more miles would remain during the real walk - I'd have the same exact distance as I'd just walked still in front of me.  Was I being ridiculous to think I could make it the whole way?  My pace was slowing as I worried.  I needed some motivation.  At the very last mile, heading home from the far end of my street, I texted my husband to see if he and our son would start walking towards me and we could meet for the final stretch.

Around this same time last year, late August 2016, I registered for this walk for the first time.  I did it more or less on a whim, with just over a month to train.  Even though I signed up for the half marathon distance, and had never walked that far on purpose ever in my life,  I didn't really do any training.  I was about four months out from the end of radiation treatment and physical energy was still hard to come by.  I remember thinking about training - "I should go for a nice five or six mile walk today" - and then never summoned the physical power to do it.  I was walking every day on my commute to work and figured when the day came to walk 13.1 miles I would just dig deep and get it done.

Luckily that's what happened - I finished the half marathon distance, barely.  I was happy enough about it at the time.  It was a bigger accomplishment than the FitFest earlier that year, which happened only two weeks after radiation treatment, when I was still literally exhausted.  The outdoor FitFest is where I learned how much my body had atrophied.  It was a beautiful May day, and warmer than normal, with the perfect blue spring sky that is so rare in New England.  But even with the weather as motivation, I could not do more than one jumping jack at a time, needing at least five resting minutes between each one.  I tried to do some push-ups; for every push-up you completed, another dollar would be donated to the cause.  I could only do two half push-ups - I made it all the way down both times, but failed spectacularly trying to get back up.  I had no muscles.  My son, then four years old and way better at jumping jacks, had come to play the role of personal trainer; he provided just enough motivation for me to stick it out for the whole day without collapsing.

So walking that half marathon a few months later was a big deal when it happened.  I was more nervous about logistics.  For one, I had never emptied my ostomy bag, which I still had then, in a port-a-potty.  It was hard enough to do that in a public restroom, sitting askew, using hair clips to keep my clothes up and out of the way.  Doing the same in a small, dark space made me nervous.  Maybe my digestion will be slow, I thought the morning of, and I won't have to worry about it.  Even more worrisome was the thought of having some emergency and needing to change the bag entirely; that would not work out.  That would mean aborting the walk all together, wherever I was.  Finishing and getting to a safe, ostomy-appliance-supporting space as quickly as I could was my motivation that day.

Thankfully, there was no emergency, and I finished, feeling relatively victorious.  And in the months that followed my strength did return.  By January of this year I was nearly my old self.  With FitBit as my witness, I walked at least ten thousand steps every day in January.  I registered for this year's walk as soon as registration opened that same month, this time for the full marathon distance.  I also registered for the FitFest again and started my push-up training.  I made it up to six real push-ups before re-connection surgery in February ended that streak, and also my stepping, putting me out of commission for a while.  Surgery in May (to finally reverse my ostomy) was another hiccup.

In retrospect, none of that really got in the way.  The recovery I had to do this year is the last recovery I expect to ever have to do as a result of having cancer.  That's the strongest motivation I've ever known.  The finish line at the end of my upcoming marathon walk feels like the finish line - all my fingers crossed, knock on all the wood - and afterward, life will move along so normally, it will be like nothing ever happened.  Let's hope.

My texts today did in fact go unanswered.  Out of breath and shuffling, I glanced at my phone every several seconds, hoping to see a "Yes, we're on the way!", or to look up and see them skipping towards me.  As it happened my husband's phone wasn't nearby and he missed my pleas.  But knowing I might see them any second, and even if I didn't, knowing they were just up ahead at home was enough to keep me going.

I have a few slightly-more-than-half-marathon distance training walks to complete before the big day, each one longer than the next, until the penultimate week when the sample plan advises shorter walks and more rest days as the best preparation.  I have only made it this far thanks to my family and my friends, my community, my doctors and nurses and so many other caregivers.  I will not let you down; I will finish this walk.

The Cost of Cancer, updated (geez)

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.

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. 

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.

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.

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.

National Cancer Survivors Day

National Cancer Survivors Day is today.  And I am one.  That is all.