Crash day

As expected, today I crashed.  The steroids must have cleared my system overnight.  I slept like a log for about 7 hours and could have stayed in bed longer if that whole job thing didn't get in the way.  And I also got my first taste of what forgetting to care for myself properly will cost now. 

I forgot to eat breakfast.  By 11 when I remembered to eat breakfast I was shaking so bad that I actually dropped it as I was pulling it out of the microwave, shattering the dish on the floor and making one very very happy dog.  I locked myself in my office (with the dog) while Bob cleaned it up and made me a fresh plate.  I cried and felt ridiculous.  I need to start setting alarm clocks to remind me to eat every couple of hours.  The recommendation is to go for six snacky meals a day rather than three big ones, and it made sense when I heard it.  It made a hell of a lot more sense after experiencing it. 

Anyway, I'm glad I had the warning that today would be bad, and really it was fine beyond that.  I arranged my work schedule to avoid big meetings jut in case, and it was fine.  I just feel really really tired again.  I didn't take any anti-nausea meds today and don't expect to need them again until next Monday. 

Next cancer related update - the big shave on Saturday. 

The day after.

So I got home last night and wrote this on FB -

OMG steroids. I definitely need the zofran for nausea. I thought it would knock me out. We got home earlier than expected. I haven't done All The Things, but I have done more Things since we got home than I have in the last month. And my knee doesn't hurt at all. I know it won't last and there will be a price to pay. But at this moment I actually feel physically better than I have in the last year. No pain pills. Steroids. WOW. I did not see that coming. Don't worry, I'm not doing anything insane. Just actually cleaning the kitchen and stuff like that.

 

So here's the rest of the afternoon - actually they let me go at 5:30 - apparently they pad the times in case of delays (since it's a hospital and delays happen all the time) but I was all done and they let me go!  We carpool-laned our way through the 880/92 interchange and got home in an hour flat.  (For the locals, we've figured out that 92-280-Sand Hill and in the back way is consistently more sane than going ten miles shorter and trying to drive through downtown PA, the mall, and half the school.) 

And then after that FB post I did some other stuff cleaning up my office.  I have managed to lose a phone again.  It's in here, I called it, Bob heard it. It vibrated, and then the battery died.  This is now the third time I've entirely lost a phone in a place where I know exactly where it is.  There is still a perfectly good Droid under one of the seats in my car somewhere (with all the electronics to screw around with to pull the seat out without deploying air bags, it was just cheaper to replace the phone - it is most definitely under a seat in my car.  No question), and there is probably still a perfectly good iPhone 4 stuck somewhere in the vicinity of my side table at the Marriot we stayed at for JavaOne last year.  The alarm went off.  I turned it off, set it on the side table and went to take a shower.  Bob was still asleep when I came back from my shower and I couldn't find the phone.  Hadn't left the room.   It wasn't in the bathroom.   Nobody else had been in or out of the room.  Just vanished.  Never saw it again.  According to AT&T nobody ever tried to use it again. 

Anyway, I'm occasionally an idiot.  Back to cancer.  I cleaned some more, we watched some trashy tv.  I took an Ativan at 9, thinking it would knock me out.  It did not. (Steroids).  I got into bed and read, and read, and read and did not fall asleep.  Bottle says one every four hours.  At midnight I took my phone into the bathroom to determine interactions and things because I really don't need to Heath Ledger my way out of this one.  I risked essentially nothing by taking another one at 12:30, and it finally did knock me out around 2am.  I got up at 5:30, shook it off and left for work at 6 and felt fine. (Steroids!)  Note: I cannot think the last time I actually left for work at six in the morning, but I stupidly set up an in office meeting (that I was hosting) at 8, and an hour long by phone meeting (that I was hosting) at 7.  And since I was hosting I couldn't very well drive, take notes on the call, and talk on the call.  So I left at 6 and ended up doing the call from my car in the parking lot in front of Oracle because I was just late enough to not have time to walk in the building and find an office to use.

Anyway, I'm occasionally an idiot.  Back to cancer.  Meetings meetings meetings.  I took a Zofran for nausea at 9am, which kicked it into submission nicely.  Attempting to drink five liters of water a day yesterday, today, and tomorrow to flush all the crap out of my system (yes, on doctors orders), trying to stay on top of the supplements and eat enough protein and eat some actual fruit and vegetables.  I got home around 1 and felt like the steroids were wearing off, but that didn't really happen.  I didn't spend hours doing all the things in the kitchen again (because they were done), but I did spend a couple more hours working on stuff I didn't really need to because I was bored and not tired, but not really together enough to trust myself to take on some serious work-work.  

Zofran wore off at 5 on the nose.  The nausea didn't get too bad though, more like heartburn and I ate a small dinner.  Took an Ativan at 7.  I'll take another one in 30 minutes, and probably head up to bed around midnight.  

So far the only side effect I've seen beyond (well controlled) nausea is major stomach cramping.  The doc warned me about that - he said about half the people feel it in the gut, right under the diaphragm at some point after an LCL161 dose, and he wasn't wrong.  Next time I'll pick my meds more carefully and try to sleep through that part if I can.  If the timing is the same it'll hit between 3 and 4 am next week.  It wasn't any more hellacious than a really bad case of gas or something, but that can still be pretty hellacious especially when there isn't a damn thing you can do about it.  My face was also pretty flushed all afternoon today.  Which could be a side effect, or could just be summer.  Meh. 

Anyway, today was pretty good, no nap, didn't need one.  The Things I Did (that I had no energy to do over the weekend) were a trip to Smart and Final, leaving for work at 6am, not taking a nap, and further fussing around the kitchen and cleaning my office.  Natalia (house cleaner) comes tomorrow and she might have a heart attack over how organized my office is.  

I am starting to feel actual tiredness.  This is good. 

And we're off...

Greetings from Stanford.  I got the order of events wrong for the day.  Got here at 9, did a blood draw (where they set a line into my port so they don't have to re-poke me throughout the day) to confirm my blood counts and that I'm not pregnant.  I'll do this every time I have a treatment.  Then we met with Mollick and he spent a solid half hour with us answering questions and explaining what to expect. 

Next we walked across the street to the trial infusion center - it's actually nicer than the main one - more privacy, a little quieter.  I do today and then my last day on the trial here.  The rest there (which is still perfectly nice). 

So I've got a mass of plastic tubes coming out of my chest and plugged into a machine with three bags hanging off of it that regulates the speed of the IV drip.  I feel like they plugged me in to the Matrix.  Pre-meds took about thirty minutes (anti-nausea, benedryl, steroids), and they just started the taxol.  Exactly five minutes after they turn off the taxol I need to take the study drugs, and then we sit here while they do blood draws at regular intervals in the six hours following to see how fast my body is moving the study drug back out of my system.  So my taxol should wrap at 1:30, which means the absolute earliest we'll be out of here tonight is 7:30. 

Two studies for the price of one, and all the supplements I can possibly swallow.

We finally had good news yesterday.  I'm in the trial, I'm getting the drug, and I start on Monday.  To prep I've started taking all the recommended supplements, which is a new thing and quite a pain in the ass. 

Here's what I need to take daily for the next six months:

glutamine powder - 5g  2-3 times per day
alpha lipoic acid - pill once a day
l carnatine - pill twice a day
claritin - pill once a day
tea tree oil - apply to nail beds on fingers and toes at least twice a day

The glutamine is the hardest - it's a flavorless powder and so I need to stir it into things.  I tried smoothies, but something about it turned the smoothie into gloppy pudding.  The flavor was fine, but if I'm feeling nauseated there's no way I'm getting that texture down.  I played around with the other ingredients and it just got grosser every time.  I've found that it goes great stirred into creamy vegetable soups so I stocked up on a few of the boxed ones at Trader Joe's, and asked Elise to make some of her curried carrot soup which is an old favorite of mine for my freezer.  But I can't eat soup three times a day. 

So I've been experimenting with stirring it into yogurt.  Nonfat was disgusting.  Like eating sand.  Lowfat seems to be OK though, there's enough slip that it still feels gritty on my teeth, but not on my tongue.  It's livable. 

Tonight I'm going to try making a batch of sugar-free pudding using low fat milk with it mixed in.  I'm hoping that it will just disappear into that, and I can make little dessert cups for myself. 

Why all the glutamine? Neuropathy (loss of feeling and/or pins-and-needles sensation) in fingers and toes is a standard side effect of taxol.  And it can be permanent.  This is one of those they-don't-know-why-it-works, but they know it does kind of things.  Ideas for other things I can stir this stuff into would be greatly appreciated. 

The other two pills are supposed to help with digestive and nausea issues.  The claritin is because (shockingly, I know!) I'll be pumping poison directly into my body and am likely to have a histamine reaction to it.  They give you benedryl and steroids in the mix too, but advise staying on claritin to help keep reactions down across the board. 

Tea tree oil because I'm very likely to lose my finger and toe nails.  It's an antibacterial and antifungal oil.  I've actually been using it for years - waaaaaaay before anybody else I knew had heard of it we were using it in electrology school as an after treatment to prevent inflammation and infection, and it's the best zit killer I know.  It has a very strong, distinctive smell.  I've learned to like it over the years, but a lot of people don't.  Anyway, if it helps me keep my nails longer, I'm all in favor.  As the surgeon pointed out - it's going to be really difficult to do things like button up a shirt if I don't have them.  I suggest not googling taxol and fingernails. 

Other stuff I've been told to keep on hand - a thermometer (anything over 100 degrees is an extremely high fever for the next six months, and possible cause for hospitalization), a 10-day supply of antibiotics to be carried 24/7 in case I do get that fever.  Stuff to make you poop as well as stuff to make you stop, because apparently this is going to entirely change my system but there's no way to predict in which direction.  Two different anti-nausea medications, a light one if I want to try to stay awake, a heavier one if I just need to sleep it off.  And a numbing skin cream to put on top of my port before they stick me.  And valium.  And vicodin. 

I bought one of those days-of-the-week pill boxes that has multiple compartments for each day and a pill cutter to carry in my purse.  I am a walking pharmaceutical nightmare.

I've been told to expect to be at Stanford from 9am to at least 7pm on Monday.  I'm actually taking part in two different studies.  The first just consists of a blood draw that they will do along with everything else - they are trying to match protein markers in blood to different symptoms they can see in x-rays, PET scans, and MRIs, in the hopes that they can develop blood tests for cancer sooner.  Then there's this six hour thing I need to do as a one-off to start the study - which involves drawing blood several times over those six hours and I think another ultrasound.  Then I'll get my first actual chemo treatment, which should take about four hours.  And then they give me the magic pill and watch me take it.  And then I get to go home.

Mostly it's going to be time spent sitting in reasonably comfortable recliners while people push things in or pull things out through the port in my chest.  Note to self: wear a v-neck.  Bob's coming with me and we'll both bring our laptops.  They have good wi-fi throughout the hospital and clinics.  He's got essays to write for school, and I can work if I feel like it, or watch trashy television on itunes, or take a nap.  We'll see how it goes. 


 

Valium and ice cream. It's what's for dinner.

Today has been the worst day I've had in a very long time, and I'm including the day I got diagnosed in that list.  I woke up to some serious bullshit at work that just pissed me off, and I stayed pissed all morning.  At noon I heard back from Stanford, and Novartis hasn't finished their testing yet.  So, no-go on the study for tomorrow.  Again.  And they're sure they'll have it ready by Friday.  And they were really apologetic and blah blah blah blah.  So I called Wexler, and she said that in her opinion it's worth waiting one last week - she thinks there's zero risk of it getting worse in the next week and there are possible positives can make it worth the wait.  Me being in the study is of no benefit to her.

She did point out that the average time to enter a study like this is 90 days, and we're still at about 60.  She also said that since my lymph nodes came back clean and the tumor has stopped after the first major growth spurt, that there was no reason to believe it will metastasize in the next few weeks, and that it is normal for people to be moved back out of the trial pipeline if any of their markers come back as risky, and so far none of mine have.  

I talked to Bob and he was really angry.  And I've been talking to Leasha, and Simone, and Eric is helping out with some research he can access that the rest of us mere mortals cannot.  Long story short, I decided to give them one more week, but that's really absolutely my final offer.  If I don't have chemo dripping into my chest by noon on Monday I'm pretty sure Bob's going to beat somebody up, and I'm pretty sure I will have lost my mind entirely. 

That is the hardest thing in all of this, trying to figure out which advice to take, which to discard, how hard to push myself.  On the one hand I'm supposed to try to be as normal as possible but plan to skip things if I don't feel up to them.  On the other hand I'm supposed to "take care of myself" by shunning anything that may be physically difficult or emotionally trying.  I'm supposed to take all these ridiculous supplements but not change my eating habits in any significant way.  I'm supposed to push hard and try to exercise no matter how gross or sick I feel, but I'm not supposed to push myself too hard because healing will be harder. 

So I am angry.  Still angry about the work bullshit.  Angry about this.  Feeling manipulated and frustrated and like there are no good choices.  I am not emotionally capable of doing this roller coaster of prep and then nothing again.  It feels pretty unreal right now - like maybe I'm not really sick (still don't feel sick, still don't look sick) and maybe if we just delay it every week forever I'll never have to actually deal with the disease.  Intellectually, of course that's stupid.  Emotionally, I'm so used to the up and down and not moving to the next level now that it doesn't feel like anything else is possible.  

Still no clue where I'm starting chemo, but I'm starting on Tuesday.

The lab in Ireland got started on the new samples at noon local time on Thursday, and are working through the weekend on them.  I'll know by noon tomorrow which way this is going. 

In health-but-not-cancer-related news, I had a major breakthrough in physical therapy on my knee on Friday.  Brief backstory for the unfamiliar - basically I was walking on it while it was dislocated for about a year, and had lost an incredible amount of range of motion - an adult my age should be able to move from 0 degrees (leg sraight) to between 130 and 150 (kneeling with butt on ankles).  On the first day of PT I couldn't straighten my leg and didn't even know it - it felt straight to me.  My range of motion was about 5 degrees to 105 degrees, and that hurt like hell.  We got me to 123 on Friday.  And that hurt like hell, but it's progress and I'm really happy with that.  I'm going to continue with PT once a week while I'm in chemo and then transition back into light weight lifting and doing more walks in the hills as I'm capable of it. 

moderation note

I didn't realize until a couple days ago that people were trying to comment and were having trouble with the captcha process on the site.  So I just disabled that and allowed anonymous comments, but set everything to moderation.  So now you should be able to write with no restrictions, but you won't see it published on the page until after I see it in my email. 

And if somebody could actually test that theory, I'd appreciate it.  :)