Thankful

Two years ago, when Thanksgiving was during a treatment week and I was strapped to a chemo pump and too tired and blah to travel to see family, we had our first no-travel p.j. T-day at home.  Last year we chose to do it again, just because.  P.j. T-day is now our tradition.

On this turkey day eve, I am thankful that my life is now so boring, I have nothing to post.

I have eleven scars to remind me when life wasn't boring and weird folds on my belly that make it look like it's frowning, and my son and I laugh about that, a lot.  One of these days I may work my disfigurement into a tattoo.

Gobble gobble, everyone - remember to chew your food!!

Going the Distance

On the eve of my first marathon walk attempt, I offer up this personal essay.  This evolved from an earlier blog post turned short essay, originally written on the actual day of my half-marathon-length training walk on 8/19/17, during which I contemplated distance and motivation and bodies and walking and how much this one writer's body and mind has endured the last two years.  I wrote it mostly for myself.  Perhaps, you will find something in it that speaks to you.  Peace to all.

Going the Distance

About a month ago I tried to walk a half marathon.  I've been training to walk an entire marathon for a Jimmy Fund fundraising event, following a sample 3-month training plan they publish, and about midway through that plan is the half.  I started strong, fueled by the tunes on my iPhone – XTC, Tony Bennett, Steely Dan, Violent Femmes, lots of collegiate a cappella from the ‘90s and ‘00s, and, inexplicably, a rousing Kidz Bop rendition of “Fire Burning.”  My turquoise blue and orange Asics, bought especially for this event, kept the spring in my step.  I maintained a decent pace at first.  About ten miles in I was struggling; my heart was working too hard and 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 was walking today still in front of me.  Was I being ridiculous to think I could make it the whole way?  I noticed my pace slowing as I worried.  I needed some motivation.  Upon reaching the last couple of miles, headed home from the far end of my street, I texted my husband to see if he and our son would walk towards me.  We could meet in the middle and walk the final stretch together.

This same time last year, late August 2016, I had registered for this event for the first time, almost on a whim.  I signed up for the half marathon distance then, and though I had never walked that far on purpose ever in my life, I didn't really do any training.  A few months earlier I had finished a seven-month stretch of treatment for stage IV colorectal cancer: twelve rounds of chemotherapy, one every other week, followed by 28 days of radiation to my pelvis and lower abdomen.  Physical energy was still hard to come by.  I remember thinking about training, but never summoning the physical power to do it.

And a year before that, I could hardly walk at all.  In August 2015 I’d recovered from an emergency colostomy necessitated by my unexpected diagnosis, and my digestive tract now had two egresses, the new one needing all kinds of supplies and maintenance and mental fortitude.  I had just had a port-a-cath placed, a weird plastic receptacle stashed under the skin of my upper right chest wall, plastic tubing ascending internally over my collarbone and terminating near some major artery, intended to ease the delivery of destructive yet lifesaving chemicals.  I was scheduled to start chemo in a couple of days but the disease had other plans.  A mass on my ovary, metastasized from the tumor on my colon, had gotten angry, abscessed and infected.  After days in the hospital spiking fevers, my team of doctors decided surgery was necessary, surgery I was maybe not well enough to tolerate, surgery that might leave me in the ICU for some unknown amount of time.

The morning of The Big Surgery I remember speaking to an anesthesiologist.  He told me about the nerve blocks they’d use for pain control since I couldn’t have an epidural.  He told me about the stents they would place in my ureters so they would be visible during surgery (accidentally slicing those would be bad).  He told me about the Foley catheter they’d put in.  Every time he mentioned something they’d do, I would ask, “While I’m asleep?” and he would answer, “Yes, while you’re asleep.”  Even in my morphine haze I was anxious about pain.  I signed whatever paper he put in front of me and was wheeled away.

And then I woke up, miraculously not in the ICU.  It was evening by then.  I remember grimacing at the fresh incision, eight inches of redness and staples from my bellybutton downward, radiating pain.  The day after, though, was the real wake-up call.

            “You have a beautiful stoma,” a surgical resident said early that morning upon examining my latest colostomy site, as her colleagues peered over her shoulder.  The ostomy bag they had affixed was transparent for easy peeking by doctors and nurses.

“Really?” I countered.  Not the adjective I was expecting for the round, beef-red end of large intestine now poking through a hole in my abdomen. 

“Yes.  It’s perfect.  And it’s on the right side where it belongs,” she said, using “right” to mean correct, since this one was on the left side of my abdomen.  I hoped my still fledgling ostomy maintenance routine would translate to the opposite side, and that the original emergency egress – now sutured at the level of the fascia but otherwise an open wound – would heal properly while I figured that out.

But her next words startled me most: “Today we’re going to get you up and walking.”  I was sure she was mistaken.  I had just had major abdominal surgery.  They removed the tumor, some bowel to go with it, lymph nodes, both ovaries, my uterus, and my appendix (not affected by the cancer; just in case).  It took almost nine hours, far longer than expected; so long that there was no time to reconnect my colon and my rectum, leaving me with the end ostomy and my beautiful stoma.  My first post-surgical night had been exhausting, any hope of sleep hijacked by Dilaudid-incuded hallucinations and nurses interrupting to deal with my port-a-cath, which suddenly and stubbornly would not return blood for the every-six-hour tests. I didn’t know how I’d get out of bed let alone walk.

Yet walk I did, thanks to the “Cadillac of walkers,” to quote my nurse, a giant thing with forearm rests and a fold-out seat should you get winded, a beast normally reserved for thoracic surgery patients.  With a nurse on either side I managed a few dozen tentative steps, declared victory, struggled back into bed and took a nap.  It was a start.

I didn’t know it then, but ambulation would become my physical and mental therapy over the next two years.  I had been active my entire life – gymnastics, soccer, track, high jump, and field hockey growing up, then biking and yoga throughout my adult life.  I took walking completely for granted.  It was not exercise, not inspiring or ambitious.  It was just a thing I did to get from one place to another.  Surgery took that freedom away.  I could no longer just get up and go, due not only to physical limits, but to the ostomy variable as well.  Simply leaving the house required an intense period of mulling over whether I was up for it or not. 

Very gradually, milestones were achieved: walking three blocks to the corner, with cane; making it on the bus and subway, with cane; taking stairs instead of escalators, with cane, and eventually without.  I had become that annoying slow person on the sidewalk I used to despise, and vowed to never again be impatient, with myself or anyone else.  Once recovery from surgery was behind me, my pace waxed and waned with each round of chemotherapy and the dreadful exhaustion it incurred.  Taking more time physically also meant more time to think – what had happened, what was happening.  Some walks left me crying, not from pain, but from uncertainty.

Given that progression, my 2016 attempt to walk a half marathon with no preparation now seems insane, but I was curious.  I needed to know if my strength and stamina had limits, and if my new normal was really something I could live with.  On the day of that event I was less worried about finishing and more nervous about logistics.  For one, I had never emptied my ostomy bag in a port-a-potty.  It was hard enough to do that at home, sitting askew, using hair clips to keep my clothes up and out of the way.  Doing the same in a small, strange, dark place 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 distressing was the possibility of 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 that day my radiation-stiffened hips made it to the end.  And in the months that followed my strength did return.  By the start of 2017 I was nearly my old self.  With FitBit as my witness, I walked at least ten thousand steps every day in January.  I signed up for this year's marathon walk event as soon as registration opened, this time for the full 26.2 mile distance.  I did as much yoga and strength training as I could before being sidelined by another major surgery in February (planned this time) to get reconnected and to replace the colostomy with an ileostomy while the connection healed.  In May, that third and final ostomy was reversed.  

Somehow these more recent medical events were merely inconvenient, not devastating, and come July I was ready to start training. I was confident.  But the weekend before my first training walk I was revisited by the same kind of abdominal pain that had brought me to the emergency room two years earlier.  Waves of nausea and cramping went from that’s-a-little-uncomfortable to something-is-very-wrong in a matter of hours.  A frantic page to my surgeon was returned and I described my symptoms.  Was it food poisoning?  Some kind of blockage?

“Try to wait it out another couple hours,” my surgeon advised.  “If there’s no improvement, just go to the ER – you’ll be admitted, we’ll do IV fluids and bowel rest and figure out what’s going on.”

I hung up the call and burst into tears.  Hearing my anguish, my husband Ryan came into the bedroom, found me curled up and sweating on the bed, and laid a reassuring hand on my knees, drawn close to my chest in an attempt to squash the agony in my belly.

“I can’t go through this again,” I sobbed.

“It’s okay, you’ll be fine, you just had a scan,” Ryan said.  “It was clear – it can’t be the same problem.”

“It’s some new awful problem!!” I cried.  I did not want to go to the hospital.  I did not want an IV.  I did not want another devastating diagnosis.  I wanted to walk.  I shuddered and shook my head.  “I can’t do it again.  I cannot do it.”

Some limits, I’ve learned, are more absolute than others.  I can no longer tolerate any pain of unknown origin.  I have hit the cap on the unnatural invasion of my physical self – no more needles, no more tubes, no more cutting me open or steeping me in toxic chemicals.  My psyche cannot handle the vast, massive universe of unknowns, of the unknown, that opens up in the single life-altering second it takes to hear the word “cancer.”  Stress, anxiety and depression nearly unraveled my family, and still lie in wait, pouncing from the shadows with every unexpected twinge or unusual ache.  And while the emotions are more easily corralled now, and less crippling, we cannot take any more unpleasant surprises.

I didn’t go to the hospital; in two days, whatever it was had passed, and my training started on time.  It’s happened again a half dozen more times since, twice with debilitating pain, and each time I learn what not to eat or what I need to chew exceedingly, ridiculously well.  And now, on-again-off-again partial bowel obstructions notwithstanding, I am through it.  I was literally taken apart, turned inside out, and put back together again.  The recovery I went through this year was the last recovery I expect to ever have to do as a result of surviving cancer.  That's the strongest motivation I've ever known.  The finish line at the end of this 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. 

On that recent half marathon training walk, my texted pleas for companionship did in fact go unanswered.  Out of breath and shuffling, I glanced at my phone every several seconds, hoping to see “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 request.  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.  In the end I even managed an extra mile – fourteen all told.  I’ve completed a few more slightly-more-than-half-marathon distance training walks since, each one longer than the next, and am now resting up for the big day.  I haven’t yet reached my limit.

***********

 

Erin E.M. Thomas is a musician, mom, wife, nerd, project manager, evolving political activist, wannabe philanthropist, cancer survivor, and atheist with Buddhist tendencies.  B.S. degrees in Music and Cognitive Science from the Massachusetts Institute of Technology and an M.S. in Arts Administration from Boston University somehow prepared her for a successful career in Information Technology within the financial services industry.  The excruciating minutiae of her cancer story can be found on her blog at eemthomas.blogspot.com.  She currently lives in Arlington, MA with her husband Ryan, daughter Ava, son Connor, and cats Daschle and Tarrus.

What not to eat

I had another partial obstruction today.  Well, I'm deciding that that's what these are, even though the MRI said there was no evidence.  There is some kind of thickening of the intestinal wall, or passage narrowing, or both, at the site of my ileostomy takedown.  My surgeon is sure it is not an enterocutanious fistula because there is no clinical evidence of one (thank goodness; I'm done with extra holes in  my belly).

So instead I get to figure out what things bug my intestines.  I now think the very first episode was mushrooms, because it was the only food in common with the second episode, even though the second was far less debilitating.  I must also chew tortilla chips really, really well, and not drink margaritas that might have fruit pulp in them (episode 3).  Arugula must be without stems (episode 4).  Beef brisket needs extreme mastication, as does all red meat in fact (episode 5).  I can't figure out what caused episode 6.  But I'll never eat a link of sausage again (today's episode); the casings are worse than any fruit or vegetable skin, with which I have no problem whatsoever, at least not so far.

Today's was bad; today was painful.  I recognize them now.  Today I knew within a couple hours, and after a total of eleven, it was finally mostly gone.  Recovery goes like this: stop eating; sometimes lose the food you've already eaten; walk around if you can manage; then lie down; heating pad; belly massage & hot tea on repeat; wait to hear the gurgles that signal it's receding.  Sometimes this happens when you are at work, or when you're about to go on a marathon training walk, or when you're asleep... you just never know.

I know there are others out there with far worse GI issues than mine.  I'm glad these don't happen all the time.  I'm glad the cramping isn't worse than labor pains, most of the time.  I will consider it an opportunity to fully savor every bite, for the rest of my life.

MRI Enterography says...

My MRI results were posted this morning.  I have come to love medical terminology and its detached, matter-of-fact presentation of analyses and conclusions, benign and horrid alike.  And not just because it makes those four years of high school Latin totally worth it.

So - what I think is the relevant bit under "findings:"

BOWEL: Mild restricted diffusion (14:61) and enhancement (10:31)

associated with a short linear track at the prior ileostomy site.

Nondilated bowel. Surgically absent appendix. No signs of bowel

wall edema. No extraluminal intra-abdominal collections.

 

(I've never seen my appendix described as surgically absent before; I'm gonna steal that.)

And a bit later, under "impressions:"

1. Findings raise the possibility of an enterocutaneous fistula

at the ileostomy site. Alternatively, these changes simply may

reflect postsurgical changes.

2. No evidence of small bowel obstruction...

 

"Enterocutanious fistula" is especially fun to google; go ahead, give it a whirl. I'd very much prefer to not have that.  I don't know why whatever I experienced was so painful.  I'll need to wait for my surgeon's interpretation of these results.  

 

In the meantime I'm going to go with the stated alternative of "postsurgical changes."  All my insides are just settling in.  I'm okay with that, so long as it doesn't hurt.  And it still hasn't recurred, so maybe I'm out of the woods.  I do have a really long walk to finish in the not too distant future - no whammies, no whammies...

Walking, Writing, and Waiting

I am still training for the Jimmy Fund Walk at the end of this month.  I am walking.  I am walking a lot, to which the picture at the end attests.  I am getting better at pushing through the wall that I hit around mile 11.  After this morning's adventure I am feeling pretty confident that I'll do fine for the whole marathon on event day.  And now that I've jinxed it, please be prepared to radiate mega positive vibes for me on 9/24!

I am also writing about walking, and recovering, and other things.  I'm taking a short and most helpful personal essay writing course.  Attending to this blog has been immensely therapeutic and I found myself wanting to write more formally about it.  (Also, Lauren Brissette is waiting for my book, so...)  I'm adapting my blog post from a couple weeks ago (the day of my training half) for an assignment.  We'll see how that turns out.  I shall of course post it here when it's ready.

I am also waiting for my MRI results.  I have not yet gotten a call or seen any results posted on the patient portal.  The blockage has not recurred in the last 10 days or so; maybe it was a sign of my body readjusting to normal life and it won't ever come back.  Or maybe, now I just know how to chew my food really, really well.  Either way.

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.

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.

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.

Home again

Time between the first trip to the ER and the last trip home from the hospital, courtesy of this disease: 1 year 9 months 17 days.  At least let's hope it's the last trip.

And now a month's respite before the next wave of scanxiety.  

Unpacking

This morning the senior resident, accompanied by his gaggle of more junior residents, changed the dressing on my wound.  To quote him, I have "a little cave" in my belly, and like other similar wounds, having it heal from the inside out is the best way to prevent infection.

In my little cave, left over from surgery, was a whole lotta packing material.  He didn't warn me ahead of time that it would HURT LIKE THE DEVIL coming out of the cave.  It was never ending.  I may have broken a resident's hand, I was squeezing it so hard.  There must have been five feet of that stuff.  Putting fresh material back in was better - did not hurt and he didn't put as much in.  My visiting nurse will have to do this unpacking and re-packing every day until the skin closes.

I was also instructed in the proper colors of discharge from the wound, and those that signify Something Bad.  I won't ruin your breakfast with those.

My thighs are bruised from the heparin shots I get three times a day.  I am actually looking forward to Lovanox now; one needle stick a day is enough for me.

And now we wait... for proof that my bowels are awake... they only accept one form of absolute proof.  I must break wind, undeniably and emphatically.  And then I can go home!  I shall now peruse the room service menu for  gaseous foods...

The Final Takedown (Surgery 4 of 4)

Yesterday's last surgery was successful; takedown complete.  I pulled another vasavagol after the IV was placed, though managed not to throw up this time.  I wonder if I'll suffer the same with the next IV - I get one for each CT scan so they can inject the contrast at the end before final imaging.  It could be anxiety more than the IV in and of itself.  Surgery is terrifying, after all.

I am not used to having my belly back yet.  I don't recognize it, with all its scars and asymmetrical little bulges from being opened and closed so many times.  There is still a bandage covering this last wound, however I tried to take a good look when they changed it this morning.  One last bizarre hole to close up.

I used to put my hand over my stoma, sometimes to hide it, or hide the bag, sometimes to push on the bag's adhesive, or to muffle it a bit.  I am still doing that even though there is no bag, nothing that needs support.  The wound hurts; I need to walk and move to recover but that makes it hurt more.  So I keep cradling it thinking that will help, and out of habit.

I thought I might make it through without narcotics this time, but walking put me over the pain edge, so back to my old friend oxy.  Much less of it though. Only 2.5 mg at a time - more than that puts me to sleep, so I know 2.5 is enough.  Especially with a Tylenol chaser.  

Still have to get my GI tract to completely wake up before they'll let me go home.  It's partially awake.  I'm sleepy though.  Signing off from my private room, with a view even, at the Faulkner.

Hunger, anatomy, and antibiotics, oh my (NAC:1)

We are at NAC:1. 

Earlier today I got the call from BWF (Faulker) and now know that surgery is scheduled for 2:45pm tomorrow afternoon.  I can have clear liquids up until 11:45am tomorrow morning.  I have only been able to have clear liquids all day today as well.  I am hungry.  I have reminders in all my calendars and a note on the fridge telling me not to eat anything.  Ginger ale and Gatorade do not a meal make.

As this surgery approaches I find myself contemplating my anatomy more than usual.  Or, more than the new usual, since I never contemplated it much at all before my diagnosis.  I think I know way too much about my insides.  Every scan since The Big Surgery has been fine; all the blood work has been fine; colonoscopy was fine; the most recent bizarre x-ray came out totally fine.  What my surgeon saw with her very own eyes during the last surgery was perfectly fine.  Still, every stray digestive gurgle or minute abdominal discomfort sends me into a differential diagnosis tailspin.  Which of my (three! as of tomorrow) anastomoses is damaged and leaking bacteria across my gut?  Does that heartburn mean I have stomach cancer now?  Is the weird tiny pain a result of a slowly developing bladder cancer, thanks to radiation?  Are my intestines getting twisted?  Blocked?  Are fistulas forming in unnatural places?  Am I hungry, or is one part of my body gnawing at another part??

And I can picture all those things in my mind.  It doesn't help that I've had various temporary endpoints of my anatomy clearly visible (to me) for the last 21 months.  You can't help but picture it.  I still remember the first surgery, the first time I peeked under the hospital gown to see what the heck this thing was, and was so completely horrified.  This was just a few hours afterwards, when I was still distended from blockage and attempted bowel prep, and so many things were aggravated and swollen.  I only had that diverting transverse loop colostomy for a month but it was by far the worst one of them all.

But tomorrow, no more!  At least no more clearly visible anatomy that shouldn't be clearly visible.  I'll probably never stop wondering what might be going wrong with my insides.

Onward and upward.  A few minutes ago I started the pre-op antibiotics.  Last time around these made me sick to my stomach; I expect the same this time.  The pharmacy inserts advise that you "take with crackers, bread or a small meal" to avoid this.  Such a very cruel joke right about now.  I'm having coffee for a late afternoon snack, more ginger ale for dinner, and perhaps some different flavor of Gatorade for dessert and to swallow the last antibiotics before bedtime. 

More news when humpty dumpty is back together again.