Week 7

I went in early to meet with Arati for my mid-trial checkin.  She's a Nurse Practitioner who worked for Dr. M before he left.  My case has been reassigned to a different managing oncologist, and I'm free to meet with them at any time, but I'm very comfortable with her - she's been the front line responder to Dr. M's email from day one (he often responded directly as well, but she always responded), she knows the trial drug well and has handled all my prescriptions. 

Apparently they had a little mini tumor board about me yesterday and decided that the itching was most likely a delayed response to the taxol and wasn't accompanied by the typical rash because I've been taking Claritin daily since a week before I started treatment.  So I'm back on the steroid (decadron) on IV, they doubled the amount of IV benedryl they give me as a pre-med, and I'm taking decadron in the mornings on Wednesdays and Thursdays for the remainder of the trial.  That should keep it under control. 

Also, Anne, one of my favorite nurses since before today, but definitely my favorite as of today figured out something about the port.  She thinks the altaplase was necessary last week, but that due to the placement the port needs to be in two different positions to be accessed and then to be used - the best access position is kinking the line up inside me and slowing down blood supply, which is why they had to go into my arm on Saturday at the ER.  If we turn the thing sideways after it's accessed and tape it down that way, the thing flows fine.  No pain.  Anne is awesome.  And she has the cutest little Irish accent.  And she's working every Tuesday for the next five weeks so she told me to send for her immediately if anybody else has any trouble.  If I was the type to type little pink hearts for Anne I would do so. 

In addition to the extra decadron, Arati gave me a prescription anti-diarrhea med and said that some of the other trial patients are having luck with pepto for the stomach cramping.  And all of them have had bathroom destroying bouts like I did last week - good to know that I'm not the only one who has lost control in that way.  So I'm wide awake and going to take a last dose of the zofran (which should make me sleepy), the anti-diarrhea (which should make me sleepy), and some ativan (which helps with nausea and should make me sleepy) around 12:30 and then get in bed with a book.

Wish me (and my bathroom floor) luck.  I have new barf bags.  I have towels.  (Chux should be delivered tomorrow, natch).  Bob is under orders on pain of death to leave the seat down and the lid up. 

BTW, I still haven't lost all my hair and I wish it would just go away already.  This is ridiculous.  (I can't shave it because of the infection risk if I cut myself, so it sits at 1/8 inch until it decides to fall out on its own.)

No news is good news.

Yesterday was really exhausting, but pretty uneventful.  The itching continued all day and into last night, but it was tolerable and seems to be gone entirely today. 

I hosted my book club for dinner and and getting the house ready for that took it out of me, but it was fun and I was glad to do it. I was in bed at 9 and asleep by 10 despite the steroids. 

Haven't gotten sick again, but tomorrow is infusion day so I'll be expecting the worst on all fronts.

Today I'm trying to take it easy, do some work from home, and waiting for our new washer and dryer to arrive in the next couple of hours.  So there's some excitement - laundry! 

First trip to the ER today.

Guess who's getting more steroids?  ME. 

Rewind to earlier this week.  Day from hell Tuesday, they punched a hole in the back of my left hand to do some bloodwork while we were waiting to get the clog in my port completely clear.  Tuesday night the back of my left hand was a little itchy.  I didn't think anything about it.  It had been abused, and I'd been out in the sun quite a bit over the weekend and am super sensitive to it right now.  I'm really careful about sunscreen but when you have to wash your hands a million times a day it's easy to slip. 

Wednesday night my right hand was a little itchy too.  Didn't think anything about it.  I burned the back of my hand maybe a week ago in a minor falafel incident (pulling the pan out of the oven), so of course, it's blistering and healing up (sooo much more slowly than I am used to) and a little itchy. 

Thursday night the soles of my feet started itching.  Friday morning my ankles and shins were itching.  Last night at dinner I had one of those oh-shit moments - what if this is the beginning of peripheral neuropathy?  Totally normal symptom of taxol, and it's why I've been taking the glutamine supplenents.  So after dinner I got online and scared myself stupid, and around 10pm called the cancer center at Stanford for advice (after also scratching my left foot bloody).  The doc talked me down about the neuropathy (still could be, but it's rare to present as itching in chemo patients, but I'm also on a trial drug that could trigger it too), told me to take a bunch of benedryl, go to my closest ER if my breathing got weird in any way, and call her around 10 pm tonight if it hadn't gotten better.  I took 3 benedryl and 1 mg of ativan and went to bed.  Never really got to sleep.  Around 2, the itching was worse, I took a fourth benedryl and another ativan. 

At 4:30 I still hadn't slept for more than 20 minutes at a stretch, the itching was worse and I took a 3rd ativan and two more bendryl and decided I was being a moron and called her back. She asked about my breathing, and confirmed several times that my lungs were OK, and told me to get my ass in the car and drive to the stanford ER.  So I woke Bob up and we drove down there.   Only takes 47 minutes at 5am on a Saturday.  

So we got there, were the only people in triage and went straight in to see a nurse.  They tried to access my port to draw some bloodwork and of course, it's partially blocked again.  They did get some blood after I did a few contortions, but it took five minutes to fill the first of several vials, so they clipped it off and went into my arm.  Yay.  They came back and gave me 3 prednisone pills (60mg, total, I think, I was waaaay out of at that point) and just let me sleep in a quiet room with Bob to see if they would help.  I'd say they knocked the itching down by about 90%.  It's never gone entirely away. 

Got a script for a weeks worth of prednisone, orders that I get both benedryl and decadron again in my pre-meds before infusion from now on, and a heavier duty antihistime (hydroxyzine HCL).  Came home, took more ativan, slept until about 3pm.  So here we are.  Prednisone is keeping me up.  I'm waiting for the antihistamine and ativan to knock me back out.  Everything still itches but not as much as it was a 4:30 this morning, and I'll need to go in two hours early for my bloodwork on Tuesday so we have enough time for the altaplase to really do its thing. 

And of course, I've just arranged my life to have what I've been calling "coma Wednesdays" but now I'm back on the steroids and will be crashing Thursdays and Fridays, so a lot of my work stuff is totally borked again, even though I'll be awake enough to do most of it.  Just not on the days I thought.  Yay.  Knowing that this is the "easy" part is screwing with my head a little bit too.  At least a the moment I've got so many benzos in my system that I pretty much DNGAF anymore.  At least for tonight. 

Tomorrow, another big whammy of prednisone and I'm hosting book club.  What could possibly go wrong?  :)

This post will be full of things you really didn't want to know.

It involves what it's really like to be disgustingly sick and unable to do anything about it. Spend several hours getting a chemo infusion.  Come home and eat the small, bland, sensible meal they recommend and take a large swig of kayopectate.  Take the anti-nausea meds which make you sleepy. 

Go to bed.  Wake up every 15 - 30 minutes or so for the first few hours to pee.  Totally normal, they push a lot of saline along with the treatment, and there's no way out but through.  This makes you more and more exhausted and stupid. 

Go back to bed.  Again.  The stomach cramps that you're expecting kick in.  Go sit on the toilet again for a fairly obscene amount of time while nothing happens.  Be exhausted.  Go back to bed.  Wake up out of a dead REM sleep about an hour later realizing that if you move you're going to shit yourself, and if you don't move you're going to puke on your husband's head.  (Fortunately, thanks to previous experience, had laid a towel down on the bed before getting into it.)

Make a run down the hallway while regretting that you bought such a ridiculous house and have a moment of indecision - do you sit or do you kneel.  And in that indecision everything breaks loose anyway.  8 feet of vomit (we have twelve inch tiles, not hard to count) and a square or two of the otherstuff.  Round two is coming fast, I opted to sit.  And then having no other receptacle nearby, puked on my feet.  Twice.  Bland tortellini with mushroom sauce, if you must know. 

People, I DESTROYED that bathroom.  The throw rug is still in the wash and may go straight to the trash if it doesn't recover.  I killed two rolls of paper towels and two rolls of TP attempting to clean it up.  Two hefty bags. Someone managed to "sleep" through all of this, even with me cursing and flipping the lights on.

Barf bags should be here tomorrow and will be kept in multiple locations.  I'm exploring the adult diaper options and they do not come in my size at a price I am willing to pay, yet.  There is now a rubber sheet on the bed, as well as extra towels under the sheet on my side of it.  This weekend I will be procuring a duplicate set of our housecleaner's supplies to keep upstairs (two floors above where they are normally stored), including gloves, mop, bucket.

25% done, but it's going to get progressively worse, every week.  I will be prepared.

Yesterday I did sleep all but about three hours.  I ate 2/3 of a smoothie that Bob made me, and about three conservative bites of soup and oatmeal.  I didn't drink enough, which I think may be slowing my recovery.  It seems that only cold things appeal, and cold things are down a floor and I can't get out of bed or get down the stairs in that state.  So I'm going to borrow Bob's insulated lunch box and keep several different cold things to drink by the bed all day.  I hope it helps knock me out of it sooner.

Today I had a bunch of meetings and didn't dare try real food until they were done.  Cafe au lait for breakfast, 1/2 a chocolate shake for lunch, and then finally, half a plain hamburger for dinner.  I think all is well.  We'll see how it goes when I lie down.  

I've managed to be awake for about three hours today.

Bad news, last night was worse.  Although I'm pretty sure I set a new personal record for projectile vomit - 8 feet or so. 

I just bought a case of barf bags from Amazon.  They will be stationed in strategic locations around the house and in the car. 

Good news, the tumor is most definitely smaller now. 

And with that, I'm heading for bed. 

A case of Why Me?

I'll start with what I wrote earlier on Facebook -

This day has been absolute shit. My oncologist left Stanford. My port completely failed to do a blood return for a solid two hours. Apparently I had a massive clot completely blocking the entry to the vein. They put in a drug that is supposed to clear it out within an hour, and it didn't, so they ran a line into my left hand. Super painful, but they finally got my blood drawn. Not 5 minutes after that, the clot started clearing up and we got blood return from the port. But they want to leave the painful thing in my hand just in case they can't use the port for my infusion. Waiting for the bloodwork to clear so they can start the infusion. It'll probably be another hour.

And it was.  I didn't get out of there until after 7.  Terminology for the uninitiated - "blood return" is when they pull blood back out - so they have these syringes preloaded with saline, and they set up a needle and short bit of tubing in the port so they theoretically only have to stick me once.  They push the saline in, and then pull the plunger back, and ideally you get blood back in the vacuum.  They tried 3 different access needles into my port.  They tried 18 syringes of saline.  Four different people.  It's the first time I've really had any pain associated with an infusion, and it sucked.  After about an hour they brought out the clot busting stuff and injected that.  We checked it every 15 minutes for an hour, and they suggested at the end of the hour that I go walk laps around the floor to see if increasing my circulation would help. 

That's pretty much when I broke.  I don't spend a lot of time feeling sorry for myself, but I did today.  My usual response is "Why not me?"  I've been incredibly lucky in my life, and I try to keep that in mind.  I'm still lucky, even with the cancer.  I have access to some of the best doctors in the world and good enough insurance that it probably won't bankrupt us.  I found it as soon as I possibly could have and got treatment before it spread. 

I don't necessarily believe in the power of positive thinking, but I do think that if you put a smile on your face and act with kindness and generosity, eventually you'll feel that kindness and generosity even if you have to fake it at first.  So that is my habit when I go in for infusions.  There are a lot of incredibly miserable people there.  It's not surprising, I feel for them, and I'll be where they are in another few months.  But I'm in no pain now.  I tolerate the drugs reasonably well so far.  I'm prepared for long delays - I bring my toys and those years of travel have left me able to amuse myself for hours and hours without a problem. 

But today, the dam broke.  Apparently when you flip from the rolling-with-it person they know you as to the silently crying as you do laps around the building person, they pull out the stops.  They cleared out a private room for me, which is where I was when they did the IV into my hand, and they let me wait there for an hour instead of going back out to the public waiting area while we waited for my labs.  I'm sure it was as much to keep me from upsetting the other patients as it was for me, but it was still nice of them.  I don't think I've just let myself break down for more than a few minutes since this started.

So it's done now.  I'm nervous for next week, but at least we know the anti clot stuff works and I'm not going to let them poke me for an hour before asking for it next time.

Feeling the usual sickness coming, and I'm pretty tired.  I expect to sleep the day away tomorrow no matter what happens tonight.  

Starting week 6

Been up and down.  Good days, bad nights.  Not sure yet what kind of night tonight is going to be.   In new things I learned this week, there are two kinds of nausea and puking.  There's the normal kind you do when you have food poisoning or drink too much or are seasick.  That's pretty much what I've expected with chemo, and that's happened once, a few weeks back.  Then there's another kind, which I think is what's been happening to me.  Food goes in your stomach and just stops there.  That's the kind of thing the Reglan is for, and it's happened to me a couple of times now.  I haven't taken that drug yet, and I suspect I won't until/unless this starts happening earlier in the day.  I've had a couple friends tell me some nasty stories about it, and I won't go there unless I'm really feeling like my nutritional needs are not being met. 

Most days I spend the morning ticking off the various nutrition boxes every couple hours or so, and then all I need to worry about for the rest of the day is supplements and getting enough protein, and I've long been in the habit of trying to have larger meals earlier in the day and smaller ones later.  So losing my dinner because it has been sitting there for several hours and not doing thing?  Not my preference, but not a big thing either.  Hell, that's basically what I paid for when I had the gastric band for all those years. 

But it happened last night, and I was up all night with a case of the runs that just would not stop.  I realized today that yesterday I ate a burger, and there was lettuce on it.  "Salad" is easy to skip.  It's hard when I don't really think about it being a component of what I'm eating.  I'll be paying more attention from now on. 

So today ended up being a nothing day - too tired to concentrate and still running to the bathroom off and on into the afternoon.  I had myself a Breaking Bad marathon and we bought a new washing machine online.  I made a bland pasta and mushrooms thing for dinner that will be good for tomorrow after my infusion.  So even though my nights have kinda sucked, the days this weekend were good.

Saturday was great.  We got up and out of the house by 9 and met my sister and her boyfriend at the Carneros Inn up in Napa.  It is this ridiculously expensive resort thing.  They were there as guests of a friend and invited us up to spend part of the day.  We parked Bob in a comfortable spot on the patio for an hour while the rest of us got massages, and then we had a fantastic lunch and hung out by the pool until around 3.  Then Bob and I drove out toward Bodega Bay to meet up with some friends who were camping out there for the weekend.  We had a great time and ended up staying a bit later than we expected, because I managed to be awake longer than expected. 

Tomorrow is infusion number six, and with that I'll be half done with the study.  I don't expect any real surprises.