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!