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.

Test result (NAC:6)

I received the official pre-op x-ray test result, which concluded thusly:

"Both the proximal and distal colonic anastomoses appear intact without leak or obstruction."

Sweeter words have never been written.  6 more days.

Pre-op makes it real (NAC:13)

I've started the Normal Anatomy Countdown - we're at 13 days.  I was at NAC:11 until I met with my surgeon today, when she requested I change to BWH's Faulkner location, which meant pushing it a couple days. 

Today was pre-op appointment day.  It started off with an x-ray of my colon.  This is a weird thing.  Maybe not as weird as the portacath but still up there.  This was necessary to confirm the anastomosis from my last surgery (fun word meaning "communication between two tubular organs").  They use barium sulfate as a contrast.  It's a relatively short, relatively uncomfortable procedure.  I got to do it twice.  After reviewing the images, they took another x-ray (sans contrast) and then she recognized that I had another anastomosis, the original one from when they took down the very first transverse loop ostomy, and she didn't get good enough images of that one.  Just as I was about to get dressed and leave, she asked me if we could do it all over again.  Better safe than sorry.

The second time around was slightly less unpleasant.  I craned my neck so I could see the imaging monitor - you maybe don't want to do that if you don't want to know exactly how your insides look.  It's pretty freaky.  And mind-blowing.  Imaging technology is unbelievable.

Then I met with my awesome surgeon who said everything looked just fine and we could proceed with the reversal.  (I peeked at the images again on  her monitor, too.)  Such good news.  The request to switch surgery days was unexpected but not a big deal.  Also, at the Faulkner, apparently I will get a private room.  I never thought that was a big deal until I didn't have one.  It's a big deal, especially with GI recovery.

And then finally there was the appointment actually called pre-op, or "pre-operative screening."  I just did that two months ago so wasn't sure what else they'd need.  As it happened, since I had switched to the Faulkner only moments before, the BWH staff was no longer allowed to do the pre-op.  But they didn't want to make me come in again so now I'm waiting for a phone screen to be scheduled with Faulkner staff.  Or something like that.  We were glad to be done early and grab a Penguin Pizza lunch.

And now I can start freaking out!  Pre-op makes it so very real.  And even though this time I don't need an epidural, and won't have a giant incision, and shouldn't have that much pain, and know what the outcome will be instead of not knowing until I wake up, and know that it's the outcome I want, it's still terrifying.

The Cost of Cancer, updated (hang on to your hats)

Recently I came to the realization that I only get estimate of benefit ("EOB") statements if Blue Cross believed I was responsible for a remaining balance.  This explained a few things, such as why I had only seen charges for one round of chemo and seen nothing at all for radiation and seemed to be missing charges for one of my Neulasta injections.  After inquiring with BCBS I received a summary of all claims from 7/26/15 through early March.  It is jaw-dropping. I'll give you the numbers up front, followed by some thoughts:

Grand total:                    876,358.46

Chemotherapy                  112,638.30
Chemotherapy-related      146,856.91 (Neulasta)
Clinic/Consultation            18,676.55
Emergency Room                 4,118.00
Inpatient                           233,622.67
Labs/Scans                         76,635.84
Medical Mileage                     182.34
Medical Supplies                 8,906.07
Radiation                          119,350.62
Surgery                             153,506.89
---------------------------------------------
TOTAL                             874,494.19

then add in the updated out-of-pocket breakdown:

Clothing/supplies                    261.86
Copays- appts                         375.00
Copays- scrips                        121.23
Food                                       360.18
Parking                                   746.00
---------------------------------------------
TOTAL OOP                       1,864.27

First of all.. what?!?!  Yes.  Cancer is expense.  Surgery is, too.  I noticed that sometimes items aren't billed for nearly six months after the date of service.  I'll ask for another summary towards the end of the summer, after my next & last surgery (May) and next scan (June).  And I will keep doing that until I'm on a less frequent post-treatment scan schedule; I was told to expect one every six months for possibly three years, since my case was particularly nasty.  I'll take bets on when the total hits a cool million.

I am fascinated by a number of things:

 - Neulasta is no longer the most expensive thing on the list.  The BCBS summary was not as categorical as the EOBs so I had to guess where to put some things.  I think this is pretty close though.  Staying in the hospital now looks like a big chunk of my overall treatment, given how critical that was when I was first diagnosed, and my desire to return to anatomic normalcy.

- BCBS only sends an EOB if I might owe something; it's almost like they don't want me to know how much things cost.

- BCBS sent the summary in a .pdf file.  I'm a data head so I entered all the gory detail into the excel I've been maintaining.  I think someone with lesser analytic curiosity and data entry skills would not have bothered.  Again, it's almost like they don't want you know how much it all costs.

- Medical professionals and insurance companies make administrative mistakes.  I do not know how they keep their records, but I think I found a couple of duplicate charges, and given how the information is presented (at least to me via this summary), those charges were paid each time.  I wonder how many mistakes are out there and how much they contribute to inflated medical costs because we're reporting and analyzing the wrong data. 

-  I understand that before the ACA, there were lifetime caps on how much insurance would spend on you.  I'm thinking I might have hit that cap.  And I'm only 44.  And have no family history of or genetic disposition for the disease I got.  And am otherwise perfectly healthy.  Sobering.

- The insurance "discount" given for everything makes no sense at all.  If a service provider is okay with not getting paid what they say a service costs, why do they bother charging that price at all?  So that people without insurance have to cough up the full, arbitrary cost?  And insurance companies don't?

- I think I hate insurance companies, despite the fact that without my insurance I'd probably be dead.  Or at least destitute.

- Say it with me: SINGLE PAYER.

I'm just flabbergasted.  Once upon a time when I worked as a fund accountant at Investors Bank & Trust, I worked on a fund with around ~$10 billion in assets.  For whatever reason this amount didn't phase me.  One day the amount of cash assets hit $1 billion, just for that one day.  For whatever reason, because it represented cash -- like money in my pocket, and not some bizarro mythological representation of a (sometimes made-up) financial instrument's worth -- that number phased me.  I could not imagine such a vast sum of money.  Inconceivable. 

Now that I'm sort of grown up and have a mortgage, I can mostly digest the cost of my cancer treatment, even though it's much, much more than my mortgage.  What I can't digest is that there are people without insurance, because a majority of politicians running our country don't believe that taking care of our citizens' health is a right, and that those lacking insurance will live if they are immensely wealthy or die if they are not.  Inconceivable.  Sadly, in this case, it means what I think it means.