Out with the new, in with the old

Today marks 1 year and 5 months since the official confirmation of my cancer diagnosis.  I am still cancer-free; the most recent scan on 12/9 was clear.  The longer I live without a recurrence the better the chances that it won't come back.

In 2017 I'm (hopefully) getting rid of the new, anatomically speaking, and getting back to my old self.  If all goes well I'll be almost all the way there on Friday, February 24th.  That is when I'll have the surgery to reconnect.  It's also my son's 5th birthday, so, auspicious. 

There is no guarantee of success.  It could go a few different ways:

1) they open me up and can't see what they need to see, thanks to scarring, adhesions, etc. - they'd close me back up and that's that; or

2) they can see what they need to but there isn't enough length left to reconnect - in this case they'll remove my colon all together and reconnect using my small intestine instead; or

3) they can see what they need to, there's enough length, they reconnect, reversing the existing colostomy in the process, and give me an ileostomy for a few weeks while everything heals.  The ileostomy would be reversed 8-12 weeks later.

#3 is ideal.  #2 would be different but doable.  I wouldn't be happy with #1, but if it happens, I'd accept it in time.  Since scheduling the surgery I've become more frustrated with having an ostomy.  I think that means attempting the reversal is the right decision.  My surgeon gives me a 90% chance of success.  I would have done it for 50%.

Giving Thanks

Today I woke up, not in pain, without cancer, in a warm bed in a warm house full of my family. 

Last year we had a small, almost-no-cooking Thanksgiving as I couldn't travel due to fatigue from treatment (it was day 4).  This year we are all healthy and we opted for a stay-thanksgiving anyway, because it was so relaxing.

Last year I had to invest in a super-thick, super-warm pair of mittens so my fingers wouldn't get all weird during my walk to the office (evil drug side effect).  This year there is no cold sensitivity and the peripheral neuropathy I experienced in the aftermath of treatment has left my fingers entirely. It's still in my toes but I can tell that's going away too.

Last year I didn't really know how I would get through it.  This year, I'm through it.

Today I woke up, not in pain, without cancer, in a warm bed in a warm house full of my family.  The end.

Planning for Normal

At the risk of jinxing myself, I made an appointment with my original surgeon for mid-December.  My next scan is the week prior; I'll have reviewed results with my oncologist and will know if anything has come back or if there are any other concerns that would require additional treatment, and thus delay surgery.  If all is well I hope I'll be able to schedule surgery.  My scan mid-June was fine; blood work in mid-September was fine; additional blood work last week was also totally normal.  All signs point to... normal.

It has been bliss not having any treatment this fall.  I cannot forget the dread of chemo, or the pain of radiation, and every day I don't have to do either one is marvelous.  It was the right decision to wait a bit for surgery.  I have all my energy back.  I even catch myself walking fast and getting annoyed with the slow sidewalk people again.  If I'm lucky, I'll be perfectly healthy going into this next and hopefully (second to) last procedure before we can pretend this never happened.

I manage projects for a living and managing this hasn't been all that different - managing both at once has proven to be quite ordinary.  I've already planned work around an ideal date for surgery and another short medical leave.  And I planned that assuming a successful surgical outcome, which would mean one (really) last procedure 2-3 months later, which would mean I'm fully recovered before a great big summer road trip to visit lots of family in the south.  Priorities are in order; all systems go.

Back to work, revisited

One year ago yesterday, I went back to work, post cancer diagnosis and post great big surgery.  I found this note on my phone from that time as I was about to start chemo, posted here without further comment:

Eat before infusion today... since running late...? YES

Infusion late b/c labs late? MAYBE, still get food

Is overall plan still the same? Yes 12 courses, radiation towards end maybe, typically daily for 5.5

Will treatment affect remaining healing from surgery? NO

What are the drugs?

Folfox- 5fu, leucovorin, oxaliplatin

Anti-nausea first - zofran 72hrs dose

Compazine - any time needed

Can be constipated first few days (zofran)

Diarrhea after that 

Side effects?

Fatigue

Cold sensitivity- from oxali

Hair loss , less common

Blood counts

Mouth sores- bioteen, water & baking soda

Skin - sun sensitivity, chapped hands/feet

Weight loss - concern? Minimum for chemo?

Fine with current

Activity- what I can tolerate?

No specific restrictions 

Driving ok?

Ok but not from chemo

Flu shot?

Right before chemo is ideal

Tylenol, Advil still ok?

Next appts- de-accessing, next course...

Showering with pump??? NO says nurse who accessed port;  

Sleeping with pump???

Clothes with pump???

What else re: pump...

The Cost of Cancer, updated

It has been one year since my post-surgery pain- & insomnia-induced rant about health insurance.  I continue to tabulate all my cancer-related expenses; it's been a good six months since my last financial update.  Since then, the Neulasta billing problem was remedied (finally), I finished chemo, I had radiation and a scan and a procedure, but I haven't seen that many benefit statements.  I haven't seen anything related to the radiation, and still only saw the one set of charges last fall that appeared to be for chemotherapy.  I won't pretend to understand how any of it works.

In support of continued transparency, here are the numbers as of the last EOB I received, as of 8/19/16:

Chemotherapy                  6,645.22
Chemotherapy-related  126,589.98 (Neulasta)
Clinic/Consultation          1,076.00
Emergency Room            1,949.00
Inpatient                           6,687.34
Labs/Scans                    31,457.00
Medical Supplies             2,059.57
Surgery                          16,516.50

TOTAL                        193,159.53

And an updated out-of-pocket breakdown:

Clothing/supplies          169.82
Copays- appts               275.00
Copays- scrips                41.47
Food                             418.57
Parking                         620.00

TOTAL OOP             1,524.86

Wicked-sobering grand total:     194,684.39

Notice that the Neulasta is a solid 65% of the grand total.  I found that especially striking in light of the recent controversy surrounding the Epipen price hike.  I'll bet a significant percentage of patients undergoing any chemotherapy regimen end up needing Neulasta to support their immune systems.  I'll bet a not significant percentage of those patients have the miraculous health insurance that I do.  It boggles the mind.

More walking - support my Jimmy Fund Walk!

I'm doing it again -- exercising and raising money for the fight against cancer!  This time I've registered for the Boston Marathon Jimmy Fund Walk.  I've upped my goal since the FitFest back in May.  Now I'm including an "allocation" for my two surgeries as well.  My new default goal is $2,000: $100 for each surgery (2), round of chemotherapy (12), and week of radiation therapy (6).  Please visit my fundraising page here:

http://www.jimmyfundwalk.org/2016/eemthomas

I opted for the half-marathon 13.1 mile route from Wellesley to Boston.  I've been doing a lot of walking since ending treatment at the end of April, but 26.2 miles felt like it would be too much all at once.  I'll work up to the full route next year... baby steps.

I am also trying to get back into a biking routine.  I did about 4 miles yesterday and that was plenty.  It was only my 2nd time back on the bike since diagnosis.  Hard to believe I used to ride 18 miles a day, 2-3 times a week, from May - October for my commute to work.  I'm still not sure I'll do a commute by bike this year.  I would like to, but I might talk myself out of it... the streets of downtown Boston will surely be as challenging as they ever were.

And next year, my goal is the Pan-Mass Challenge.  I've always wanted to do it and know many people who have done it multiple times.  We'll see - baby pedals!

Test results from afar

You might recall that way back in June I had my first post-treatment CT scan.  You may also recall that the results were excellent: no indication of any recurrence, anywhere.  That was a good day.

I have also been due for another diagnostic, a colonoscopy, which I finally had about a week ago.  I never had one when all the nonsense started.  They tried the day after I was first diagnosed, but the tumor made it impossible (early blog post on that, tons of fun).  I had a sigmoidoscopy but it was primarily to get a tumor sample for pathology.

And so, there I was, post-treatment, cancer-free, talking about when I could have surgery to get me back to normal anatomically, and lo and behold I've never had a colonoscopy!  So I had one.  They can do this via the ostomy and it's actually much simpler.  However I got really lucky and they checked me out from both directions.  I am now a master of conscious sedation, by which I mean no safe amount of "sleepy medicine" puts me to sleep anymore.  I was a bit out of it, but pretty aware of everything, for better or worse.

Thankfully everything was for the better.  My prep was good, everything looked fine, except for one slightly suspicious area in the hepatic flexure, where the ascending colon turns right and becomes the transverse colon (by the liver).  The surgeon doing my procedure took a sample but told me she wasn't overly concerned.

I wasn't overly concerned 17 months ago when my stomach issues started, so I wasn't all warm and fuzzy with this.  I wasn't overly anxious either but was leaving for vacation (where I am now), knowing I wouldn't get results for a few days, and it was hard not to think about it.  Here on vacation the wifi is spotty.  I can get email usually - and got the "you have a new test result" from the patient portal this morning - but websites and such are hit or miss.  We were busy vacationing all day so I didn't try logging into the portal until a few minutes ago, but it was a miss, over and over again.  Luckily the resort has one public computer for guest use and I was able to connect there.  The result:

"Colonic mucosa within normal limits."

Great big sigh of relief.  Back to vacation!

Pretty Good Year

One year ago today I was diagnosed with cancer.  Today, one year later, I am cancer-free.

My friends who know where I got the title... well, it's not perfectly fitting, the whole feeling of that song, but it was inevitable I'd reference it.  The diagnosis and all that followed was completely unexpected, kind of unbelievable (still), devastating, and yet it could have been so much worse.  In fact only recently have I understood just how dire the situation actually was.  I don't really remember the 2-3 days leading up to the 2nd surgery; I read my posts from that time and try to recall, but it's all quite hazy.  I remember being told to expect waking up in the ICU and that's about it. Ryan recently told me my surgeon said to him, as they were about to move me to the OR, "We don't want to do this."  But there really wasn't any other option.  I was sick, poisoned from the inside, only getting worse and the fight was draining me.  He was told to prepare to be a single parent for a while, maybe for months, maybe forever. I don't remember this at all - I can only imagine I wasn't lucid, or maybe I just blocked it out.  To hear him tell it, I was as good as dead.  Maybe that's what it looked like, to him.

In any case we know how that worked out.  I woke up, not in the ICU, and went home 4 days later, a few organs lighter and essentially cancer-free.  The five months of treatment that followed was other than delightful, to say the least, but it did not destroy me.  It tried really, really hard - especially right there at the end - but did not succeed.

Some days I do feel like I'm back from the dead.  Raising my arms above my head still feels like a miracle.  I celebrate staircases now, the steeper the better.  I get to do all the things that felt burdensome before, as eagerly as I do all the things that aren't.  I have never appreciated an uninterrupted night's sleep more than I do now, after 1am vitals and blood draws in the hospital, steroid-induced night sweats during chemo, insomnia after being woken up by thousands of hot flashes, cramps from radiation, and alarms set for midnight, 3am, 6am painkillers so I wouldn't wake up a basket case.

Some days it's like it never happened.  That blissful state only ever lasts a few seconds before it's replaced by another, equally blissful state of triumph and amazement: it did happen and I survived.  And I recognize I feel normal because of how hard many people worked to get me back to that place, and how hard they continue to work to keep me there.

It's an odd thing, this consciousness, in this life.  I never felt my days were numbered.  I feel this fact keenly now, sitting with my kids, embracing my husband, moving with time as it passes.  I don't know the number of days, but I sense now that this is what will end me, this cancer or something related to it, and I expect to see it coming and have the morbid opportunity to prepare. 

Not yet, though.  I'm up for a few more pretty good years.

Surgeon Says

I had a followup with GI surgery today.  The doctor who performed my surgery last August is on maternity leave, so I met with her colleague, who just returned from maternity leave.  I had met her back in August also - I think I met all the GI surgeons on rounds, I was there so long.  Anyway.  After reviewing my history and such she felt that fixing me back up was possible but it would be difficult (same thing my original surgeon had said last December).  It would be another long surgery with another very long scar and a 6-week recovery.  Given the big mess that was the second surgery, the infection that required it, radiation treatment and so forth, she is sure there will be adhesions and scar tissue, the extent of which is the known unknown.  She can't promise the surgery would be successful - they have to just get in there and see what's what.  All that peppered with the usual "but you're young and healthy" so I'd have a relatively easy time dealing with it.  And this time, I wouldn't be wicked sick going into it.

So... what to do?

I don't know yet.  I'm gonna have a summer first, complete with vacation, and then probably a fall and a winter too, before I think too hard on it.  I would rather get all the way back to normal, but had hoped I wouldn't need the giant incision, because 1) I already had one, 2) they don't have to take a million things out of my body, and 3) it totally sucked.  Remember how long it took me to raise my arms above my head??  And not walk like a hunchback?  Ugh.  I don't wanna.  But also don't wanna deal with the alternative for the rest of my life if there's a chance I don't have to.  Because, you know, I'm young and healthy.  At least that's what they tell me.

I was going to wait for at least one more scan anyway, in case something comes back and I need more treatment, and that won't be til early December.  Once again then... more news as events warrant.

Boo.

Scanxiety, interrupted

All clear.  Take that, stupid disease!!

Next scan in 6 months.  Big sigh of relief til then.

Scanxiety

I have a scan today.  First one since the end of treatment.  Appointment with my oncologist on Friday to review results.  I am not freaking out, yet.

Just like riding a bike

Yes, I did in fact ride my bike today.  I rode maybe three miles.  I survived.  My old knee issues - the ones that distracted my doctor from my GI troubles, way back when - have resurfaced.  First time I've had a problem in over a year.  I've been walking more, but haven't biked at all, so I no longer think biking has anything to do with it.  I just have bum knees.

I won't be biking the full commute to work anytime soon, but may start biking to Alewife station, about a third of the full route.  Baby steps... Or in this case, pedals.

I also participated in Arlington's Relay for Life last night as part of my daughter's team.  I didn't stay all night this time.  Just long enough for the luminaria ceremony.  Weird to be there as a survivor this time; never would have imagined it a year ago.  Sometimes things happen.

Traveling with my new... situation

I am in the airport.  I'm going to a conference for work.  I got here at 5:40am and it was packed.  

I was so anxious about remembering to pack my scissors in my checked bag and not my carry-on that I didn't think about any potential issues with security due to my abnormal anatomy and its necessary accessories.  The full body scan showed an "ananomoly" and I had to get pat down and explain the business under my shirt.  As it happens they were training a new TSA agent, and the trainer was explaining the play by play to the trainee.  In these cases they are not allowed to touch anything or ask you to lift your shirt.  They have you smooth your hands over and around it, on top of your clothing, and then they test your hands for residue.  I passed.  All things considered the agents were exceedingly professional; I was very glad, given this is the first time I've been on a plane since my cancer adventure, and by myself to boot.  

The real tragedy is the line for Starbucks was far longer than the line to get through security.  I skipped it and got some cheap self-serve coffee instead.  It is decidedly not Starbucks.

Progress

Ten months ago today I was having my first emergency surgery.  Today I was able to go to a birthday party, clean out a corner of our basement, take a drive to Amherst and back, and take part in various playground antics with my son.  Without pain and without cancer.  I still have abnormal anatomy.  And I'm still tired, but today I really earned it.

As always - onward and upward.

Jimmy Fund FitFest!

Today was awesome and exhausting!  I wasn't sure I was going to be able to do anything at all at the FitFest today.  Amazing what a little sunshine can do for your motivation.  That and the best personal trainer a girl could ask for:

He may have to work on his plank a little, but Connor can definitely jump way higher than I can these days.  I can hardly do a single jumping jack.  I did do two half push-ups (I got all the way down, but could only get about an inch back up... baby steps).  All in all it was really, really fun.  If any of you Boston area peeps are gym rats or looking for a cool class to take, I highly recommend checking out the instructors who were at the event today. 

I was also honored to speak at the event.  They had five survivors tell their stories, and also a woman who lost her mom to cancer at a young age.  Very moving and inspirational.  After I spoke, a lot of different people came up to me throughout the day to offer congratulations and comment on what an inspiration I am to them.  I was even asked to have my photo taken by one of the instructors (cool!).  It's strange to think you can inspire people just by virtue of having gotten some awful disease.  I understand it's the conquering of the disease, and not the contracting, that is the inspiration, but still - did I really do anything special?  I just hung in there.  And I got lucky.  I think any one of us would do the same if faced with a similar predicament, and I know a lot of us have.  What else can you do, but fight as best you can?  We are all inspiration, all together.

I did have to rest a bit more than the folks around me but I think I held my own okay considering I could barely get out of bed a week ago.  I probably won't be able to move tomorrow.  Thankfully the stomach cramps are farther and farther between and less painful every day.  I'm trying to eat a wider variety of food again, especially fresh fruits and vegetables (never thought I'd miss them as much as I have), and get my 10,000 steps a day in at least.  It's easier now that the weather is warming up.  And I made it back to the office this past week too, at least on three days.

My next scan is in a month - the beginning of post-treatment surveillance.  I expect I'll have a whole other set of emotions about that.  Another post for another day.  For now, I need a nap, and then a picnic on this beautiful day.

I miss food

Things haven't gotten much better.  For the last ten days or so I've just sat around watching bad movies, or sleeping, and moaning when the cramps come around.  I had already planned to take this past week off for leave, to rest and recover - I had no idea I'd need it as much as I have.  Given other associated digestive issues I was advised to stick to a non-dairy low fiber diet until things resolve some more.  It's the most boring food in the universe.  I'm living off of english muffins, bananas, and mashed potatoes.  I have been dreaming about a big cheesy brick of meat lasagna from Jack's in Malden and giant bowls of vanilla ice cream.  I couldn't have any of my daughter's birthday cake last week (we saved some in the freezer for when I'm better).  I did sneak a donut hole the other day.  It was good.  I couldn't tell if it made the cramps any worse.

On the bright side, I've found the ultimate fail-proof diet scheme: 5-6 weeks of radiation to your lower abdomen and you won't want to eat anything!  I've lost 15 pounds in the last 2 weeks.  I have no strength left.  It's post-surgery all over again.  I'm walking with my cane, all hunched over, can barely make it around the corner before I have to sit down, or end up doubled over waiting for a cramp to pass.  My radiation oncologist said it would be a rough couple of weeks once treatments finished but I was not expecting this.  And it started before it was even over! 

Oh well.  This too shall pass.

28 treatments later....

I'm done.  I cried uncle this morning on the radiation team's voicemail.  I was prepared to go today anyway but my radiation oncologist just called and said he was okay with dropping the last two.  And then I burst into tears, literally.

Apparently they just don't have good enough data about how much is the "right" amount.  They could have had me do these last two and the cancer could come back, I can skip them and it could come back, I could have stopped five treatments ago and it won't... there isn't any way to know for sure.  Originally I was only supposed to have 28, and I did that, and I'm done, and I still have the cramps, and they still hurt, and I've lost ten pounds, and I'm exhausted.

I'm going back to sleep.

Radiation - 28 (of 30)

Three treatments left, including the one this afternoon.  Taking Xeloda out of the equation helped with nausea but not much else.  The radiation oncologist is not keen to reduce the number of treatments given my particular case (I'm young, I had a nasty tumor) but he said if I did cry uncle he would listen.  Things went pretty much downhill since Monday and the pain got really terrible so I was given the okay to take oxycodone again.  I had some left over from surgery.  It didn't help a ton with the pain of the cramps themselves, but it is helping me get some rest otherwise.  It pretty much knocks me out for an hour or two every time I take it, so I'm getting a bit more sleep.  I had to start my leave yesterday as I can't work well when I'm on it (given the sleeping thing).

Last night was actually the first night I didn't wake up from pain.  I was all excited that maybe it was behind me, but as soon as I ate something, it was back.  It's been every so slightly better.  Maybe because I've eaten next to nothing all week.

Treatment today, tiny break with the weekend, then two more next week and I'm done... finally... now to let the oxy put me to sleep for a while...

Radiation - 24 (of 30)

Stupid side affects.  Ended up needing an infusion of fluids and magnesium as I'm wicked dehydrated, apparently.  I lost 4 pounds in the last week.  I have no appetite.  These cramps are awful.  I won't get home til maybe 8pm.  Boooooooo.

Thankfully I was told I could cease and desist my intake of Xeloda, chemo drug warrior princess, until Wednesday morning so I can try and recover somewhat from the side affects.  I meet my radiation oncologist that day also and I'm going to ask if I absolutely positively must have the "extra" 2 days of radiation, given how much this sucks.  It's all wait and see, all the time.

I guess as long as I'm not back in the ER with surgery the only option for relief, I'm ahead.  That's what I'll tell myself...

Nice days

Took a walk up the big hill with my boy.  Had to use the cane.  But I made it.  I'll collapse when I get home.  It was good to get out.

Radiation - 21 (of 30)

I am officially over this.  Gastrointestinal distress is totally for the birds.  I'm taking my cane to work again so I can lean on it if a cramping fit hits when I'm walking.  And also because I'm wicked tired by noon and probably wouldn't make it home without it.  And, it usually guarantees me a seat on the train, without which I also probably wouldn't make it home.  Whoever said radiation would be easier than chemo obviously didn't get awful stomach cramps.

2 more weeks, 9 more treatments.  I do have a week of leave at the end to rest and hopefully recover somewhat.  Still.  Even kittens aren't working now...

Radiation - 15 (of 30) - Halfway

Today marks the halfway point in my radiation treatment.  15 down, 15 to go.  Fatigue is starting to rear its ugly head.  The skin on my palms and soles of my feet is getting very dry and tight and starting to peel, thanks to chemo.  I'm also starting to have cramp-like pains in my belly; physically tolerable but they trigger flashbacks of how it all began, not cool.  Oh, and nausea.  I get that now too.  Luckily, all things considered, I have a stomach of steel, and haven't needed to take any of my (three) medications to address it.  I'm taking enough pills now as it is.

Neuropathy is also getting worse - tips of my fingers are numb now, matching my toes and the balls of my feet.

But you know- kittens make everything better, so here's a picture of ours.  15 down, 15 to go...

Radiation - 10 (of 30) - Jimmy Fund!

Here is a link to the blog post for the FitFest I signed up for:

http://www.jimmyfundfitfest.org/faf/donorReg/donorPledge.asp?ievent=1144910&supid=427430824

So that's cool.  Thanks to my universe of supporters I've crushed my fundraising goal - but if you're late to the party, donations still accepted :)

Today was the 10th treatment.  So far, mostly so good.  There are indeed side affects but it wouldn't be polite to discuss them here.  Fatigue of some kind does seem to be settling in already though.  That could be from the oral chemo as well.  Or from hustling to and from BWH every freaking weekday.  All the rest of my treatments are scheduled for 4:30pm; it takes me about 40 minutes to get there from work (subway), then anywhere from 60-90 to get home (bus-subway-bus).  All for a 15 minute treatment.

I also have bona fide neuropathy now.  My fingers tingle all the time and the tips of my toes are numb.  It didn't start until a few days after my last chemo.  My oncologist's assistant let me know it could take months to fade.  Thanks a bunch, evil drug oxaliplatin!  At least it isn't painful.  Just super weird and annoying.

Onward... and upward... sigh.

Radiation - 3 (of 30) - The Blue Machine

3 down, 27 to go.  I took some photos of my linear accelerator, aka the Blue Machine: TrueBeam by Varian.  You can consult the googles to learn more.  Or you can visit BWH - they'll let anyone back there to check it out if they want (just not when it's actually running!).  The front part spins 360 degrees so they can zap you from all sides.  I'm facedown so I don't get to see it in action, but it makes fun whirring and beeping noises, and I can tell when it's done by the movement of the table.  The table is raised high for treatment, right under the beaming part.  I'm getting better at positioning and staying still.  Good for me.

Radiation - 1 (of 30)

Don't worry, I won't post every day - no excruciating minutae for radiation treatments.  Today was the first one.  It was scheduled super-early as that was the only time available (7:20am).  And just like my first chemo, they were running way, way behind.  I'm on the "blue machine" and the blue machine was having issues.  I met with my radiation oncologist while waiting for those issues to be resolved, so at least that was out of the way.  It wasn't until about 8:15 that I got into the room.  Apparently I'm really not good at relaxing... they had to come in about three times before we got going to re-position me and tell me to really go limp and heavy, and press my pelvis into the table - which I really don't get, because if I'm trying to actively press some part of my body into something, I'm not relaxed, limp and heavy like they want.  It was confusing.

But it happened.  I have officially been irradiated.  We'll see what comes of this.  Hoping at least the first couple weeks are smooth and side-affect free, as they have assured me they will most likely be.

On the up side, the media relations folks for the Jimmy Fund FitFest I signed up for want to talk with me.  I was singled out from my commentary on my fund-raising page, and they are supposed to do a blog post soon, and then there might be some other media coverage as promotions for the event continue.  It's on 5/14 - more to come, but if you haven't already, check out my page and if you are so moved, make a donation!  I'm the top non-team fundraiser - keep me there!

http://www.jimmyfundfitfest.org/2016/erinemthomas

Radiation Verification - Start the Insanity

I had a verification appointment today.  A lot like the mapping appointment - same weird holey table, face-down for 20 minutes while the machine beeps and whirs.  They took additional x-rays to confirm the alignment of my tattoos with the mapping they created.  Nifty laser-guided stuff.  But I wasn't a good patient... apparently I was moving ever so slightly toward the end.  I was reminded not to move anything.  Just relax and hang out, perfectly still.  They put Steely Dan on Pandora for me.  Maybe they should tune in to Enya or ocean waves or something instead, so I don't inadvertently tap my toes.

I also finally made all the appointments for the next 30 treatments.  Oh yes, forgot to mention my radiation oncologist upped the days from the usual 28 to 30 so they can focus on "problem areas" as identified during my second surgery.  The only time they had for the first two days is 7:20 in the ante meridiem.  In the ANTE MERIDIEM.  Boo hiss.  Otherwise, managed to make most of the rest for late in the day so I can just go home after.  Still, it's a burden, especially on my husband - daycare pickup is all him for the next six weeks.

So tomorrow I start my oral chemo - 3 in the morning, 2 at night - and also a larger than usual dose of vitamin D for good measure.  I'll get up at some hideous hour to be irradiated.  And then we wait to see what side affects hit, and hope the late-breaking neuropathy goes away, and start the countdown.  I am not looking forward to it.  Something about passing the damn emergency room on my way in really bothers me, every time.

Alas.  Onward and upward.

Radiation Mapping

Today was not a good day.  Really, I just don't want to do this anymore.  I was really enjoying being DONE with something.  I was stressed all day about starting the radiation process.  This treatment will be at Brigham & Women's, and walking to the building and past the emergency entrance triggered a flood of memories from August, and the awfulness of the pain that brought me there, that resulted in days of fevers and then the giant second surgery.  That didn't help my state of mind.

Treatment is in the basement where they keep the fun toys.  I'll be irradiated by what is essentially a linear accelerator.  They prefer to have you lie on your stomach when the pelvis and lower abdomen are involved.  The table has a "face cushion" like you see on massage tables.  (Ah, if only this were a massage....). It also has a big hole in the middle, so when you lie down, as much of the small bowel as possible kind of falls into the hole and out of the way of the beams.  Having an ostomy makes this a little harder but not impossible.  Luckily mine is pretty small.

They got me all lined up, face down in this odd position, and did the scan for the mapping.  I had to drink a cup full of a barium solution first; not tasty.  Then I lay there a while so they could check the positioning and give me three permanent, freckle-sized tattoos with a small needle - one on each hip and a third near the base of my spine.  So yeah, now when I'm asked if I have any tattoos, I can say yes.

And that was it, for now.  I picked up my chemo pills -- all 140 of them -- and go back next Tuesday for a dry run.  They give you a special card to check in (because you are there EVERY WEEKDAY for six weeks or so) and go through all the motions to validate the mapping, alignment, etc., but don't actually zap you.  That starts next Wednesday...

To top it all off, the day started with me ordering a breakfast sandwich with my coffee and then forgetting to wait for it.  I didn't even realize it til I was already at my desk.  Thanks chemo brain.  And it ended with me running into a sign pole with my face when picking up my son from daycare.  I was smiling at the kids in the playground as I walked up and bam.  Now I have a welt on my cheekbone the size of a walnut.

But now we are going for Chinese food, and hopefully some good dumplings will make it all better.  I still don't want to do this anymore - but I'll save the rest of my tears for another day.

I'm not at chemo

It's an every other Monday and I'm not at chemo.  Score.

Party Girl

I had a late night out last Wednesday for the first time in months.  An after-work hang with some colleagues and vendor friends.  I had more alcohol than I've had since before my diagnosis.  I haven't dared drink more than a smidgen of wine - only on one day, only during off weeks - since early last summer.  I forgot what it felt like to get kinda drunk.  And I survived!  I felt a little worse for wear the next day but nothing a whole lot of water wouldn't take care of (which it did).  Plus it was awesome fun. 

We're celebrating the end of chemo in every way possible until radiation starts (in 10 days).  We had an awesome dinner out last night, and have another one planned tonight, and at least one more next week already on the calendar.  I have a few days in between projects at work so have time to eat lunch away from my desk.  It's a nice weekend so I can spend time outside cleaning up the garden without worrying about my hands getting all tingly from the cold.  I'll probably take the kids to a movie tomorrow.  Oh, and I am SINGING for the first time in a million years, for a fundraising event for a chamber vocal group in which one of my close friends sings; we have a rehearsal tomorrow.  I haven't been to a rehearsal for anything in at least 5 years.

And finally: a few minutes ago I started to put my steroid doses on the calendar so I wouldn't forget to take them - and then remembered I don't have to do that anymore!  Bonus.

In Between Days

Today I cleaned out the tote bag I brought to every chemo.  It felt good to know I wouldn't need it anymore.  At the same time, in doing so, I feel like I have no idea what I'm supposed to do next.  I've spent five months working at home one week, in the office another; half-expecting an allergic reaction with every infusion; not eating ice cream every other week to avoid the cold sensitivity frog in my throat; not planning on being able to do much of anything from late on day two through day four; enjoying the week "off" as much as I could until the anxiety of the next infusion set in.  It wasn't anything I wanted to do but at least it was some kind of schedule; a known, relatively predictable structure I adapted to and could navigate.

Now it's just unknown.  I've heard lots of stories from nurses, doctors, and friends about what I can expect from radiation.  I'm expecting it will be physically easier and logistically horrible.  I wish I could just schedule all the appointments - the known scheduling unknown really eats at me.  I'm nothing if not efficient.  Not scratching that itch is making me anxious.

I won't have another scan until after radiation.  For all intents and purposes I have been cancer-free since the second surgery.  Of course there is no way to know if this cancer will ever come back, but somehow, the idea of not fighting it anymore once radiation is over also makes me anxious.  I guess the answer to that is to keep fighting somehow - eat right, exercise, love my family, do my best at everything, and appreciate each day I wake up.  Live in the moment.  There are no guarantees.

Course 12 - I'M FREE

The final pump disconnect is complete.  I am free.  It's day 3 so I still feel like crap but at least no more pumps are in my future!!!

Course 12 - ding, dong, the drug is dead!!

No more oxaliplatin!  Made it through with no reaction, again.  Was told to still watch out for numbness in my fingertips. Learned that the oral chemo equivalent to the other drug, the 5 eff you drug, can trigger nausea more readily.  But I don't have to worry about that for about three more weeks.

Now I have four outings before radiation starts!  I promise not to party too hard.

Course 12 (of 12) - finally

Welcome to the last chemotherapy bash!!  Today I again have a bed, this time in a room with a great big wall of window, which makes all the difference.  I have dressed for infusion success.  We were on time - so, early, given appointments are scheduled about an hour apart - and was able to get into the infusion room an entire hour early.  Pre-meds are done and the infusion of the evil drug has commenced.  I'm keeping an eye on the clock to ensure I get past the point-of-first-reaction without incident.  I did get a bit of a head cold over the weekend but all my numbers were good.  No one expects any issues. Knock on all the wood.

I did learn today that neuropathy can be a delayed reaction.  I could get numbness and tingling in my fingers a month or two after chemo is done; just works that way.  If I do get it it is supposed to fade within the next month or so.  The evil drug just hangs on.

I also got my prescription for the oral chemo I'll have to take during radiation: capecitabine, aka XELODA, the warrior princess of chemo drugs.  It's recommended I also take vitamin D supplement and possibly also baby aspirin.  All the pills all the time.

My first radiation appointment is apparently not an actual treatment - they walk me through everything that has to happen but I won't get zapped.  That's just accordingly to my oncologist so I'll verify when I get mapped on 3/16.

Flashback photo from my first infusion way back on 9/28.  Thanks to all for your positive thoughts and energy throughout this crazy ordeal.  We've come a long way, baby. 

Last chemo eve

Tomorrow begins the last infusion.  I'm very excited to soon be through with chemo.  Another part of me is terrified that the cancer will come back and I'll have to do it all over again at some point.  I don't want to jinx anything; I can't be too happy about it.  At least that is how it feels, at once awesome and terrible.  It is also leap day tomorrow.  I'll only be able to celebrate the beginning of the end once every four years!

Once I'm disconnected for the (hopefully) last time, I am looking forward to two weeks of recovery and rejoicing.  I have planned three dinners out and expect to end up with a few more.  I'll have my radiation mapping and can test my commute from work to Brigham & Women's basement level, which I'll have to do every weekday until the end of April.  I'll have an occupational therapy appointment and will keep trying to regain my strength.  I'll be very busy at work.  I'll hug my husband and my kids. 

Everything will be okay.

Early spring

It's day 4 and day 4 sucks, but it's too nice not to come to the playground.  I brought my cane just in case.

Course 11 (of 12)

The penultimate course; just one more to go.  Today was completely uneventful - very good news, as that means the last course should also go that way, or if I had another reaction they'd just stop that drug and I'd be done!  I cannot WAIT to be done.

I spoke with my oncologist's assistant today and she was confident that radiation would go a lot more smoothly for me, as it has for many other similar patients.  I will take an oral form of the 5FU on treatment days but it is a apparently a very low dose.  Though, what wouldn't be, compared to the 46-hour infusion I get now... oh, and I also have to make an appointment with my oncologist at least once a week so they can continue to monitor blood counts, levels of vitamins/minerals, etc.  More of a logistical nightmare - but I'll wait and deal at my first radiation treatment.

And so I worked a very full day again.  My husband went to pick up our son early from daycare and he is on his way to see me now (since I'm not done til ~7, over an hour from this posting).  Dinner at Dana-Farber for us.

ONWARD and UPWARD.

Happy Freezing Valentine's Day!

At the urging of my daughter (who was low on funds and wanted some babysitting money...), my husband and I had plans for a nice romantic dinner for two this evening.  Sadly, my son got some kind of stomach virus that reared it's very, very ugly head when we were out for a non-romantic dinner last night, and continues to make its presence known in messy, laundry-inducing ways.  So we had to cancel; didn't seem fair to my daughter in the event he has another episode.  Though things are looking up - he has kept down one saltine, a piece of toast, and some vitamin water since mid-morning.  He's napping now and I've no plans to wake him up... he can sleep all he likes today.

And anyways it's 12 degrees outside, in the sun, so we are not totally bummed to avoid freezing on the way to and from said canceled dinner.  We have to keep an eye on our partially frozen pipes as well as the boy.  We'll take a sick-check and maybe do it as an end of chemo celebration instead!  Only two rounds left.

I have also made my initial radiation appointment for 3/16 and my first radiation treatment for 3/22.  At the initial appointment they take some "films" (not sure what kind of scan, or maybe it's just x-rays) and I also get some tattoos on my hips.  They make a mapping to ensure they point the radiation in the right place - location, location, location.  Unfortunately they don't let you schedule the remaining 27 days of treatment until you are there for the first one.  Logistics will be hellish.  However the scheduler I spoke to said many people have treatment and then go straight on to work, no issues, until  maybe the last week or two when fatigue can get oppressive.  I'll just have to play it all by ear.

And then... treatment will be over.  By end of April.  And then, some recovery, and maybe surgery at the end of the year.  I'm not really thinking that far ahead yet.  Focused on getting through the last two rounds reaction-free.  Booyeah.

The Cost of Cancer, updated

We are still figuring out the Neulasta problem.  I have yet to get an actual bill from Dana-Farber so am not worrying about it (per their advice).  I have also seen a commercial for Neulasta on TV - I forget which cable channel - which mentions all kinds of concerning side affects that my oncologist never mentioned.  If I had seen the commercial before I had the injection the first time, I might have questioned it.  Or, I would have questioned the commercial... I've had no side affects at all from it, not even the joint achiness that is most common.  Now, thanks to the commercial, I'm waiting for my spleen to rupture...

Anyway.  I've gotten EOBs for three of the injections so far, all saying I'm responsible.  DFCI basically said they need to re-code that service.  I'm splitting out the cost now, because it blows my  mind that a teeny tiny injection would cost anybody $20K.  Of course I know nothing about the cost involved in developing, manufacturing, or distributing it - maybe it's cheap when all is said and done.

For your accounting pleasure, here's where we stand as of the last EOB I've received (1/22):

Chemotherapy              6,645.22
Chemotherapy-related  60,800.79 (Neulasta)
Clinic/Consultation        1,076.00
Emergency Room         1,949.00
Inpatient                      6,687.34
Labs/Scans                22,257.00
Medical Supplies             591.03
Surgery                     16,516.50

TOTAL                    116,522.88

And an updated out-of-pocket breakdown:
Clothing/supplies             125.68
Copays- appts                  75.00
Copays- scrips                 38.46
Food                             359.51
Parking                         520.00

TOTAL OOP               1,118.65

Happy grand total:     117,641.53

Sobering, it is.  My health insurance is life-saving.

Genetically in the clear... as far as we know

I recently received the results of the genetic testing of my tumor, via phone, and learned everything was negative (normal).  Today I got the hard copy report in the mail.  The report has much more interesting words for normal, such as "microsatellite stable (MSS)."  In any case, this testing did not identify any underlying genetic cause for my cancer.  In other words I just got lucky.  Or, it could have been caused by a combination of mutations this testing cannot detect, involving genes we don't yet suspect, etc.

Good news for my kids I suppose, but not terribly satisfying.  And so I commend all those commencing the moonshot to eradicate this disease once and for all, on World Cancer Day no less, and hope there are more satisfying answers in our future.

Course 10 (of 12) - Dress for Infusion Success

Here we are again at DFCI for a full day of steeping.  My full pre-med dose of dexamethasone is "on board" (as they say here) and I'm waiting for my port access and blood draw.  As I wait I am thinking of the struggle I had deciding what to wear today.  I think it's an often overlooked fact of life for chemo patients, certainly ones with ports and pumps like mine.  And now it starts with the pre-med steroids I take at home, believe it or not.  Let's have a look at dressing for infusion success.

A side affect of the dexamethasone is sweating.  Especially at night.  I have to say I'm glad this pre-med requirement happened during the winter; otherwise I'd be a shriveled up, dessicated lump of person by now.  Between my first and second dose (~11pm and ~5am) I lose what seems like half my body weight in water.  Luckily I'm able to sleep in between doses, though I tend to wake up for a few minutes once or twice.  Since I also get hot flashes nowadays sometimes it isn't always obvious what the difference is and I don't spend tons of time trying to figure it out during those few minutes.  But when I got up at 5:30am this morning for the second dose I was drenched through and through.  Which leads me to rule number one:

Rule No. 1: steroids at night, dress very light!

Every other week the first thing I do is go to the lab to have blood drawn.  They primarily check blood counts and levels of certain vitamins.  As I have a port, and will utilize it for the infusion, I also have blood drawn via it.  It's located at the top right side of my chest.  The nurses need clear access to it to properly sterilize and place the needle.  It's winter, but cozy turtlenecks are out (can't pull them down far enough) and many crew necks also can't be stretched far enough.  V-necks or button down shirts are best.  I'm short-waisted and don't find button-downs all that comfortable, so when I can I opt for v-neck shirts and sweaters.

Rule No. 2: v-neck shirts for port access to work!

The second thing I do is head to my oncologist's office. I have vitals taken before the appointment - blood pressure, O2 saturation, temperature.  For the blood pressure they need my arm, usually  my left.  So I think about how thick my shirt is if it has long sleeves (the pressure cuff is fine with thinner shirts), or wear a short-sleeve if it's not too freezing, and if I'm wearing a sweater can I take it off and put it back on easily, those kinds of things.  What works best is a short-sleeve with a cardigan.  Then my big head doesn't get in the way at all.  And I have a couple of super-cozy ones that I got from work and from my sister - like wearing a blanket.  Perfect.

Rule No. 3: cardigans for warmth and easy removal - even big heads give their approval!

After the oncologist appointment I head over to the infusion room.  At the lab, the needle tubing extends a few inches and it's fine to leave it under my shirt until it's needed (they sterilize before attaching anything).  I'll pull it out and over my shirt as soon as they need it.  Even crew shirts are okay for this part - there are what seem to be miles of tubing once they get going.  What matters most here is comfort.  I considered this when my infusions were only 2 hours.  Now that they are anywhere between 6-8 hours, it becomes super important.  I might get a bed but usually it's a chair.  A bigger, cushier, reclining chair to be fair, but still, sitting anywhere for 6-8 hours is a drag.  I don't worry so much now about anything in my belly needing to heal, or interfering with my many scars, but still prefer no buttons or buckles if possible.  Fuzzy fleece yoga pants or my super-light Under Armour training pants (also a gift from work) are the best.

Rule No. 4: a smooth waist and long infusions feel great!

During the two days of eff you home infusion, frump is king.  I can't shower with the pump but still try to change clothes before I get to work (remotely).  That said there have been several days of all jammies all the time.  It's cool - no video conferences for me.  I usually leave the tubing under my shirt, with enough slack for moving around, and have the pump strap across my body.  (I used to not wear the strap and just keep the pump near me, but then it's too easy to forget it's attached and get up too quickly and risk pulling the whole shebang out of my chest - I've had a couple close calls...)

Rule No. 5: Working from home?  Embrace the frump zone!

And finally, after those two days, I go back to DCFI for the disconnect and my Neulasta injection.  Same deal with port access here - best if they can get to it easily.  Pulling the dressing off is sometimes like playing Operation, trying to get the pesky corner to lift up so they can peel it all away, one thing at a time, before finally freeing the needle and pulling it out.  Then they need access to my skin for the injection.  I usually do left arm for this too, so again, short-sleeves work best.

Rule No. 6: short-sleeves for injection, that's perfection!

And then I go home and take an extra long shower to counter the accumulation of two solid days of cozy, frumpy infusing.  I find no clothes are best in that situation.

Rule No. 7: au naturel is the solution for thorough ablutions!

Snow is cold

Snowzilla 2016 missed us for the most part - we got maybe 4-5 inches of very fluffy, easily shoveled snow.  Nothing compared to last winter.  Nonetheless we hunkered down yesterday and watched movies all day long in our jammies.  I taught Connor how to use the pause and play buttons on the remote so he could pause his Netflix movie himself when he had to get up for whatever (snack, potty, bother Mom with some tiny detail about something). 

I rented and watched, appropriately, Everest.  I had read the book based on the same events some time ago.  As I thought then, it boggles my mind that anyone would want to climb that mountain and pay thousands of dollars to risk their life getting to the top of the world.  I get it in theory I guess; I'm just not that person.  And nowadays, more so than ever before, I find I am quite risk-averse.  Even getting on a plane seems unnecessary to me now (but I'll still get on one - I'm not done traveling yet).  If I'm going to survive this cancer and the treatment to (hopefully) ensure it doesn't come back, it seems irresponsible to risk anything.  I've never been skiing; I won't ever go at this point, except maybe cross-country.  I don't need to sky dive, or rock climb, or zip line even.  And it's okay.  I'm not missing out.  My kids are the top of my world - as long as I get to watch them grow, I'm good.

Today is sunny so Connor and I went on a snow walk to the store for a few groceries.  I don't get nearly enough exercise these days; the fatigue has built up, and day 4 is now almost as bad as day 3.  I still feel much better on day 5 but the fatigue lingers.  Today is day 5.  The store is not quite a half mile away.  Not all the sidewalks were shoveled.  Connor had a blast walking on all the "flat" snow (anything not yet shoveled).  I barely made it home with three not-very-heavy bags of groceries.  That walk was my Everest.  And getting Connor out of his snowpants and boots was a little bit excruciating - snow is cold, and it was all over him!  That side affect lingers too, unfortunately. 

But just three more to go.  Onward and upward.

Course 9 (of 12) - no whammies!

I am about a half hour away from being done here today... and so far, no allergic reaction!  Hooray!  I had one tiny tickle in my throat about 1.5 hours in, but I coughed once, took a few deep breaths, and it passed.  It looks like this particular pre-med cocktail will work for the longer infusion period.  So happy.  I really don't want to deal with the whole de-sensitization thing.  I think at this point my oncologist would sooner just cut out the drug entirely than put me through it.

Hopefully, lack of allergic reaction also means a better treatment week experience.  I'm trying to stay super-hydrated to prevent any weird headache again and eat well to keep fatigue to a minimum.

And the Benadryl again did not put me to sleep, though I was a good bit drowsy for about 15 minutes right after they administered it.  That meant I got a full day of remote working in, and also started on the process to refinance our house (fun!).

I also got confirmation that Neulasta injections are wicked expensive!!!  That $20K is indeed just for that single injection.  I will have 5 injections in total, I believe, maybe 6 if they give me one after the last course.  That is INSANITY for a tiny amount of liquid pushed into my arm.  That said - my oncologist's assistant (who gave me this info) said the idea is if they can bolster my immune system with the injection, it could save me thousands more in hospital bills if I were to get an infection and needed additional treatment and supervision.  Fair point.  Still, wow.  I'd love to see a cost breakdown for that 20K.  More important though is making sure it's coded correctly so my insurance covers it!

Course 9 (of 12)

Here we go again.  Back at DFCI for a long day.  I haven't started the chemo yet - so we'll be  here til at least 6pm (arrived just after 9am).  I am getting my pre-meds.  We are going with the "after the reaction" treatment.  I still took dexamethadose (steroid) at 12 hours and 6  hours before, but didn't have any more of it here.  I am getting Solu-Medrol (steroid), Benadryl (whopping 50 mg), and Pepcid.  And then we'll start.  I think they want it those meds to sit with me a bit before they start... at least that's how it worked last time.

And, this time I got to pick my spot - I took a corner space with a window and a bed.  Just in case.  the Benadryl did make me a bit sleepy but I didn't fall asleep.  The steroid is fighting with it and I suspect it will win again.  Plus, I'm working remote.  I do take a half PTO day for the week, since I can't be completely available when I'm here, and I usually need a nap on day 3 or 4 at lunchtime.

But my nurse got it right: the first thing she said was "Today is going to be a good day!"  I am choosing to believe her entirely.

Bad dreams

This was a long week.  I guess the fatigue is finally adding up.  I decided to drive to work yesterday; I felt I wasn't up for the walk from South Station to the office, at least I was worried I wouldn't be by the end of the day.  I also have little bags under my eyes all the time now, which I've never had.  I sleep okay once I get to sleep but sometimes I do wake up in the night and it takes a while to fall back asleep.  That also hasn't really happened to me before - I'm a champion sleeper.

Last night though I had a bad dream. I was at an appointment and my husband was there with me.  A nurse walks in and starts talking about this and that, and I asked about side affects of something, and she said not to worry about it since I was dying.  I told her I wasn't but she insisted I was, and I started crying and couldn't stop, and woke up that way, thinking I was dying.  But I am not dying.  Well, not right this minute.  It'll happen eventually.  I'd like another 42 years first.  42 years that don't involve any more cancer.

Next round starts Wednesday - pushed out since Monday is a holiday that Dana-Farber recognizes and neither my oncologist nor his assistant are available on Tuesdays.  It means less recovery time before the round after that but none of us want to delay treatment if we don't have to.  Only consideration otherwise is my Neulasta injection; apparently it's supposed to be administered only every 12-14 days, but my oncologist says this is really an insurance consideration and most of the time, after the first injection insurance claim is approved, they don't care about the timing.  I did get a second explanation of benefits from Blue Cross, same as before saying I'm responsible for $20K for hospital services, but no actual bill from Dana-Farber.  So I'm not worrying about it.  Onward and upward.

Course 8 (of 12) - I forgot....

... how evil the evil drug is.  Today is day 4.  Usually I've perked up a bit by now, but still dragging.  Either the longer infusion extended the blah period, or the fatigue is piling up now, or both.  I think I'm also dehydrated; eating salty foods to make sure I keep drinking water.

At least I had a small break from it - it was nice to see that the future post-treatment might be totally normal again, at some point.  I still haven't called my oncologist about the plan for the next treatment.  I am in denial of having to do 4 more 6- to 8-hour stints.  And then radiation!  Agh.

Not the best day.  At least it's not snowing :)

Course 8 (of 12) - longest. day. ever.

If you didn't see the comment on my last post here it is again, for context:

This drug hates me. The feeling is mutual.

At about the same point as last time (volume-wise) I get red palms, a small rash on back of my hands near my thumbs (neither one was itchy at all), and a very tiny wheeze when I breathed extra deep. Chemo is now at a full stop. My oncologist is less optimistic than when we spoke before treatment started re: my body's ability to handle this drug. Nonetheless we are going to try and muddle through. Another steroid (different one), more Benadryl, and an antihistamine that they didn't give me last time. Now I'm waiting about 20 minutes for these things to settle and they'll start it up again. Might work, might not. I didn't fall asleep from the first Benadryl, but I'll bet this second dose knocks me out. Unexpected surprise all over again. But we'll see if this works.

We are finally HOME, twelve hours later.  The second round of "pre-meds" did the trick.  The nurse I had today believes the different steroid (Solu-Medrol) and the antihistamine (Pepcid injection - it's not just an antacid!) did the trick.  I didn't have any other signs of an allergic reaction once we started up again.  Also this time the reaction was much more mild, due to the very slow rate of infusion.  We'll have a slightly different plan of attack for next time though what that is I won't know til next week probably.

And despite 100mg of Benadryl today, I NEVER FELL ASLEEP.  I got sleepy for a bit but it passed. The steroids were waging war with Benadryl all afternoon and apparently the steroids won by a landslide.  I was actually quite worried about this yesterday, as I had to start the other steroid 12 hours before my scheduled appointment time, and take another does 6 hours before.  I figured I'd be up all night but I managed to sleep ok in between.  Not a full night's sleep to be sure - Atavan is on my agenda before bed tonight so I can catch up. Right now I'm totally hopped up on the Solu-Medrol.

The best news is we don't have to go the de-sensitization route!  At least we don't have to yet.  Apparently that involves being at DFCI literally all day so they can spoon feed the evil drug and watch you incredibly closely - you have a dedicated nurse the whole time - and hopefully get it all in you. And then you have to come back the NEXT day to get the other drug.  If it has to happen, it has to happen, but my fingers are crossed...

According to my oncologist, many people don't make it all 12 courses with the oxaliplatin, but usually it is due to neuropathy.  I still haven't gotten to that point but they might cut it out of my regimen early for my hypersensitivity.  One course at a time.

Only other hiccup might be timing of the neulasta injection, as my next Monday treatment falls on a holiday so it's pushed to Wednesday, putting the injection on a Friday.  That only leaves 10 days between the injection and the next infusion which is technically not enough days... but it's up to my doctor.

Anyway.  In closing, I'm just glad the reaction wasn't as bad as last time and that it waited this long into the treatment to happen at all.  Some people get it the first time!  That would be a serious drag.  Now I'm 2/3 finished - 4 more super-slow infusions to go.

Course 8 (of 12)

This time is different!  Thanks to the allergic reaction I am full of steroids (dexamethasone), awaiting one final dose of those, a dose of Benadryl, and six fabulous hours of a carefully-monitored oxaliplatin infusion.  They ran out of chairs so I have a bed this time - and thanks to the Benadryl I might actually need it.  Here we go.

The Cost of Cancer, updated

Dana-Farber is extremely slow with their billing... and also not terribly specific all the time.  My latest explanation of benefits ("EOB") statements show that I'm responsible for a cool 20K in "medical services."  There is only one breakout for "IV Therapy" but the rest is lumped together for a service date on which I had no appointments.  I can only figure they are lumping all the chemo charges together.  The primary EOB declares "benefits are not available for routine services" and the supplemental insurance says something similar.  I know it's an error of some kind, as I know my primary insurance covers 80% of the costs of chemotherapy and radiation, and the supplemental plan should pick up the other 20%.  I've already written to Dana-Farber's billing department to see what the lump sum is actually related to; it can only be chemo, I'm sure.

It is a reminder of how fortunate I am to have great health insurance.  I feel for anybody who doesn't.  It shouldn't matter who you work for - single-payer all the way, I say.

So here's an update - these are costs through maybe November chemo.  I'm not sure since the last billing was so vague.  But here is the current per statements received through 12/18/15:

Chemotherapy       26,912.15
Clinic/Consultation   1,076.00
Emergency Room    1,949.00
Inpatient                 6,687.34
Labs/Scans           22,257.00
Medical Supplies        591.03 (these are specific to my ostomy)
Surgery                16,516.50

TOTAL                75,989.02

For a grand total of 

Basically the existing categories had no change and the chemotherapy category is added.  Out of pocket is currently just over $1,000, still mostly spent on parking, followed by food (from when I was in the hospital or when we're at Dana-Farber all day).  Here is that breakdown:

Clothing/supplies         95.13 (again specific to ostomy)
Copays- appts             75.00
Copays- scrips            35.45
Food                        315.01
Parking                    484.00

TOTAL OOP         1,004.59

Only the copays are part of the first total, everything else is additional.  I'm predicting we end up with $150K-$180K in the end, if I go forward with the next round of surgeries.  That's... a lot of money.  Insanity.  But I'm alive, and according to my radiation oncologist whom I met the day of the allergic reaction (and thus have not absorbed much of what he told me), I'm essentially "cured" and all this treatment is insurance to make sure it's eradicated and doesn't come back. 

Priceless, right?