Course 3 - DIY success!

We did it - disconnected that nasty pump all by ourselves!  Fifteen minutes at home versus three hours to and from DFCI.  I'll call that a win.  Still weird.  And now I'm officially 25% through chemo treatment.  This round has been almost identical to round 2, except for the cold sensitivity bit - that is definitely more pronounced and super annoying.  Fatigue is there but not totally overwhelming (that may happen tonight and last through tomorrow... it's usually darkest before day 5).  Onward and upward...

Fruits and Foils are Evil

This time around the sensitivity to cold side affect is rearing its ugly head.  Yesterday after we got home I felt like having some grapes.  I took them out of the fridge (hmm, cold) and rinsed them off (water is also cold) and started to pull some off the vine into a bowl.  About two grapes in I had to stop - grapes are really cold!  I also had some tingling that would get more and more intense the longer I held the grape.  After another minute of this I gave up and my husband got me my grapes.

I also wanted a small bit of cheese to go with my grapes.  I had an unopened package of sharp Vermont white, also in the fridge.  I took it out and tried to open the foil wrapping.  Foil in the fridge is freaking cold!!  I ended up having to hold it in a paper towel to get it open and to hold it while I cut it.

I also took a sip of just-a-little-bit-too-cold water and got the frog in the throat feeling.  But not everything is awful.  Different cold materials give me different reactions.  Fruits and foils are EVIL.  Glass and ceramic are almost as bad.  Plastics and papers, not so much.  Walking barefoot on a cold floor is tingly.  Outside door handles aren't too bad but I did take a walk on the very cold day a couple weeks ago, I think it was day 4 of course 2, and felt weirdness in my ears and sinus that stopped once I was inside.    I'll be wearing my hat pulled down and my scarf wrapped all around my face this winter.  Either that or I won't leave the house til March.

It's supposed to wear off after a couple days, but it's one of the cumulative side affects.  My oncologist said if it gets terrible they can dial back the oxaliplatin, the drug that causes it, and that usually helps.  For some patients they cut it out all together towards the end.  I guess I have a ways to go before I can cry uncle in good conscience.

Course 3 (of 12)

Just another day at the office... lotsa tubes, my laptop, and the difficult purple nitrile gloves behind me on the wall.  Let the steeping begin.

The Cost of Cancer

Catching up on the financial aspect of this ordeal.  I only got the BCBS summaries for the 2nd surgery a couple of weeks ago; maybe Brigham & Women's is a lot slower with their billing than Mount Auburn.  I tried categorizing all the service costs on the summaries I have gotten so far.  Some of the service descriptions are vague, e.g. "Clinic."  Good enough to give an idea though.  Here's where we stand as of the last summary I received, dated 10/9:

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                49,076.87

Tests are apparently wicked expensive.  If I weren't reading Mr. Brill's book, I would have been surprised they were the highest cost (but I am, so I'm not).  Otherwise, we've spent just under $800 out of pocket on things related to the above - copays, prescriptions, parking, and meals while at the hospital or during treatment.  Only the copays are included in that 49K total and there haven't been that many of them, maybe $100 worth.  Have I mentioned how fortunate I am to have amazing health insurance coverage?

I'm wondering what the cost of chemo is specifically, but haven't seen that treatment listed yet.  Dana-Farber could be even slower than BWH with their billing.  If that gets backed up anything like their laboratory does, it could be months!

Tomorrow begins the third round.  Having a relaxing Sunday to prepare.

Working! Work work work

The working full-time thing really interferes with the blog thing!  

I made it four days in a row in the office this week. I did opt to drive in one of those days, but I made up for it by climbing what felt like 500 flights of stairs going around to all my daughter's teachers for parent/teacher conferences.  Tomorrow I opt to work from home so I don't completely overdo it before the next course.

And tonight, I opt to have a very tiny glass of wine.  I think I can handle it if I drink it over a couple hours leading up to bedtime.  It's been a long, long week.  

Course 2 - DIY fail

"Thanks for pulling the needle out of my chest."  That's a phrase I wasn't expecting to say to my husband, ever.

I don't think I've gone into the weirdness of having a port.  Mine is implanted in my upper right chest wall.  Having lost that bit of weight, it's pretty obvious unless my clothes are covering it.  Mine is a dual-lumen power port.  It has two round receptacles that make a decent little bulge under my skin.  The tubing attached to the receptacles goes up over my collarbone towards my neck and the catheter ends somewhere near a major vein.  I don't know exactly because I didn't want to know when they offered to tell me back when I gave my consent to the procedure.  When they flush the port with saline - which they do whenever they access it, or de-access it, and before and after administering anything through it - I can usually taste it.  I can taste some of the other medicines as well, like the heparin that is used before de-accessing to prevent clotting.  It's way in the back of my throat and feels pretty weird. When it is accessed the needle mechanism protrudes about another half inch and is secured with some steri strips and a clear dressing that covers the whole apparatus, with just a small opening at the bottom for the external tubing that is attached to the needle.

A nurse has to access the port, but patients are often taught how to de-access it themselves, especially those undergoing my regimen who are at home with a pump.  It saves you a trip to DFCI for what is essentially a 5-min appointment.  We're not terribly far away, but accounting for traffic, we'd get 2-3 hours back in our day, every other week.  So it sounded like a thing to try.

For the first course we had to come back since we didn't know how to do it.  My oncology nurse did the de-accessing but she described the steps as she did them, and gave us the written procedures with pictures and a link to a video on the DFCI website.  It isn't all that complicated: turn off the pump, clamp the tubing, disconnect the pump, sterilize the end of the needle tubing, un-clamp, flush with saline, flush with heparin, clamp, remove the dressing and steri strips, remove the needle, discard in sharps box, put the pump into a plastic hazardous materials bag, seal it, return it next time.  The nurses do this in maybe three minutes and make it look incredibly easy.

For this second course I was not convinced I could do this myself so we came back again for the disconnect.  My intention was to do it myself but with the nurse supervising.  I thought that if I could do it once in a safe place, I'd be comfortable enough to do it at home.  Lots of things were not as I expected:

• wearing purple nitrile gloves inhibits your ability to grasp things securely, like syringes of saline and heparin that fall on the ground and have to be replaced...
• you can't hold the end of the sterilized tubing and take the cap off a syringe at the same time, even with two hands, especially when wearing purple nitrile gloves
• pushing a syringe full of liquid into the already weird port is even weirder when you are doing it to yourself
•  my neck isn't long enough for me to bend my head to see well the dressing I have to remove from the needle, carefully and slowly, so I don't pull it out all at once
• not only can I not push a needle into my body, I lack the will to pull one out, too.

You have to hold this base part of the mechanism down and then pull this plastic bit straight out to remove the needle from the receptacle and have it in the safety position in the mechanism.  I did try.  I sat there and inhaled courage and exhaled fear and tried to pull it out but I just couldn't do it.  After I cried about it a little bit, my superman husband did it for me, just like that.

And so next time we'll do it together and hopefully it will all go well.

Otherwise, it's day 4 and I'm tired, but overall this course was better than the first.  It probably helps that I'm more recovered from the surgery now and am getting some strength back with my walks and commuting to work and all.  I was able to work from home without too much trouble and without any naps!  Ativan is my new best friend; I took one the first night, actually slept, and had basically no nausea.  I did have sensitivity to cold in my fingertips this time, just once when I took some strawberries out of the fridge, and that was annoying but not terrible.  I get a weird sensation in my mouth when I take a first bite of food after not eating for a while, or a first sip of anything but water, like I'm dehydrated (which I might be a little, this regimen is dessicating).  The fatigue hits me when the pump is about halfway through on day 2 and doesn't really let up til day 5.  My hair is thinner but it's not falling out all together (not expecting it to).

I know it could be a lot worse.  It could be something that isn't treatable or operable. 10 more courses still seems overwhelming but at least there is a light at the end of my tunnel.  Tomorrow is day 5 and I'll feel normal, hopefully, for the week in between.

Course 2 (of 12)

I'm back at Dana-Farber for the second course of treatment.  This place is great but not terribly timely; lab was nearly an hour behind and that delays all the other appointments by about that much.  We hadn't planned for daycare pickup as we thought we'd be out of here early enough today - we'll have to see when the pharmacy can get my custom-made drugs up here.

I do have the corner infusion room view today at least:

I am hopefully a little bit better prepared for this round.  Being back at work is an excellent distraction; I wasn't nearly as anxious about today as I was for the first treatment.  My port behaved fine for the blood draw.  I got a prescription for Lorazepam (Ativan) for nausea and anxiety, though really it is to help me sleep the first night.  While waiting for my infusion appointment I had an excellent discussion with a nutritionist here, who also gave me the name of an exercise physiologist that I'll hopefully meet the next time around.  I'm hoping with my newfound nutrition tips and some advice from the physiologist I can get some of my muscle tissue back, or at least not lose any more.

And so I wait for my infusion to begin.  I've been thinking about this word a lot the last couple of days: infusion.  It's a word I typically associate with oils and vinegars and vodkas, not humans.  Wikipedia does as well apparently:

Infusion is the process of extracting chemical compounds or flavors from plant material in a solvent such as water, oil or alcohol, by allowing the material to remain suspended in the solvent over time (a process often called steeping). An infusion is also the name for the resultant liquid. The process of infusion is distinct from decoction, which involves boiling the plant material, or percolation, in which the water passes through the material (as in a coffeemaker).

I'm allowing toxic chemicals to remain suspended in my body for two days.  I'm steeped in chemo.  What a thing this is.

Normal, except for that cancer thing

Last week was the start of getting back to normal.  I made it through an entire week of work; three days I was actually in the office.  This weekend I drove my daughter to ballet; did the grocery shopping; caught up on the finances; played with the little guy; had lovely visits from friends; went out to dinner with the family; finally weeded the flowers in front of the house and started cleaning up the garden.  I could do all these things without getting totally exhausted.  I still need to rest more than I used to and I still catch myself tensed up and hunched over from time to time.  But aside from the appointment on my calendar for the next course of chemotherapy, I almost, *almost* for one second forgot about that pesky cancer diagnosis.  Unless I take more than a glance at my belly and it's snazzy new decorations, I almost, *almost* forget about the surgeries that stole my summer.  Almost.

It's there though, that appointment, and I'm already feeling anxious about it.  It's on a Wednesday this time since tomorrow is a holiday that Dana-Farber recognizes.  All that really means is one of my blah days will be on the weekend.  Because of that there's a chance I won't get to see my daughter's next play.  Fingers crossed the pattern is the same as the first and the side effects fade by day five so I can catch her Sunday matinee.

Until then, I'm going to try not to think about it.  Here's a silly picture of my kids to distract us.

Back to work, from home...

I did make it to the office yesterday - progress!  I was wicked anxious before I left the house; arriving at my office gave me a pretty huge mental and emotional boost.  Nice to not feel like a recluse and see some friendly faces and take back some of the work my excellent colleagues had taken up for me in my absence. 

Making it home was something of an ordeal though.  It never occurred to me that I might be fairly active at work; I have a desk job after all.  I guess I am up and about for meetings and whatnot more often than I realize.  I also noticed I sit on the edge of my chair at work almost all the time, leaning forward or sitting straight up, while at home I mostly sit back and put my feet up on the windowsill under my desk.  And of course, I've spent a whole lot of time just lying down the last six weeks.  These things - and the fact that I clearly have not regained a lot of my strength quite yet - made for a long afternoon.  I definitely got achy and sore.  Even sitting back wasn't comfortable by the time I left.  I have a decent walk to the subway from my office, and making it back at the end of the day was a struggle.  I was definitely walking very slow, and got all tensed up and hunched like I used to when I first started walking after the second surgery.  I became the annoying slow person I used to despise!!

But I survived and made it home and basically didn't move the rest of the evening.  I decided before I fell asleep that I should work from home today instead of making the trek downtown.  I woke up this morning feeling like a small truck had hit me so I think I made the right decision.  Working from home was all good today.  The afternoon still brought a little aching and soreness.  Who would have thought sitting in a chair for a few hours would be so exhausting.

Tomorrow will be another work from home day.  And then maybe a drive to work day.  And then maybe I'll try the usual commute again.  All in good time.

Back to work

I'm on my way into the office for the first time in two months.  I am slightly terrified.

Day 5 #WINNING

Today is day 5 of the first course of treatment, and man oh man is it way better than the last three days... especially yesterday, when I felt the most tired of all.  Taking the Compazine (anti-nausea) helped the green feeling a little bit but it also made me so very sleepy.  I took at least three naps, one basically in the middle of eating lunch; spilled chicken soup all over the place.  The struggle is real.

But today!  So far today is really stellar in comparison.  No nausea yet, and not feeling overly tired or anything.  I actually wanted to eat breakfast, which is awesome as I seem to have lost another couple of pounds, so need to start making up for the green days.  The sensitivity to cold didn't seem to ever materialize for me - maybe I can eat a few ice cream sandwiches to bulk up.

I also called in to a meeting at work, and will do that one more time this afternoon.  I have to say, clearing off my desk -- which has been completely covered in amazing get well cards from all over -- and hooking my home office back up was actually invigorating.  I'm officially scheduled to start back this coming Monday 10/5.  Not sure where my energy will be exactly, and I haven't gotten on a bus or a subway since before all this started, so may still be working from home to start.  I'm hopeful that I'll make it downtown one or two times though - we'll see how it goes.

At first I envisioned coming into the office even when I had the pump connected, but now I don't think that will be feasible.  Lots of things are awkward with it attached, and I can't get the pump wet, or the dressing over the port (read: cannot really shower normally), and if I don't have the strap around me sometimes I forget it's there.  I only had one close call on day 2, when I had set it down on my desk while I checked some email, and when I got up I basically forgot it was there.  Luckily the tug on the tubing reminded me before it came crashing down or pulled anything apart.  Seems like just one thing too many to have to deal with in addition to a commute and everything else that's normal for an in-the-office day.  Plus, if I'm taking my Compazine on those days like a good girl, I'm likely to need a nap at some unexpected time.  I don't need any chicken soup spills in the office.