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.  :)

The oncologist from Stanford called me first this morning to apologize for what happened with my tests, and I got the full explanation for it.  When Alta Bates took the original core biopsies they set them up in a block of paraffin.  Totally normal.  When Stanford requested access to the biopsy, Alta Bates took 10 thin slices off the paraffin, set them up on slides and sent them to Stanford.  Again, totally normal.  But those samples weren't good enough for the kind of testing they needed to do in Ireland.  Alta Bates won't release the full block to be shipped to Ireland (which is annoying, but also standard - due to legal stuff, Stanford wouldn't have released it either if it was going the other way). 

So they tried 5 times with the samples from the slides and couldn't get what they needed, and of course completely destroyed the samples in the process.  Mollick (Stanford oncologist) said that he totally understands if I want to drop out, but that if I want to stay in we could do a new biopsy tomorrow, overnight it to Ireland, and that team has committed to working through the weekend if they have to in order to get it done on time for me to start on Tuesday. 

So I thought about it.  We're still well within the window that everybody said I'm safe to delay, so I asked him if he wanted me to come in today we could do the biopsy and get another 24 hours of a buffer on the testing.  I have basically cleared my calendar this week so it wasn't a big deal, he was really surprised and said he'd see what he could do.  Called me back ten minutes later and said that Wapnir (the surgeon from the tumor board) would do it on her lunch break if I could get there around noon.  So we did that. 

And it was pretty much the same as the other biopsies I've had - lidocaine, wide gauge needle in from the side, weird pushing sensation as they tried to punch into the tumor, now it feels like a deep bruise and I can't take my bra off or shower for 48 hours. 

The whole thing was kind of nuts in its own way - Wapnir is a well respected surgeon and certainly qualified to do this, but she hasn't done a biopsy like that in forever because these are typically handled by the clinics.  And she brought another surgeon with her to assist, which was pretty much the same situation, so they were both running around the room, pawing through cabinets looking for supplies.  PeiGen (study coordinator) was there with all the shipping materials in hand, and had it packed up and ready to ship before I was even dressed all the way.  Bob was sitting in the corner watching what was going on. 

So, next Tuesday.  Mollick offered to go talk to Wexler today to explain the situation, and ensure that both Alta Bates and Stanford will have the right thing ready for me Tuesday morning, whether I'm on the study or not. 

Weird good outcome, next Tuesday evening and Wednesday are a dinner and all day working meeting (I don't have to present, thank goodness) for a high level group I've been invited to join at work around M&A.  It could be a big thing career wise and it's the last thing that has really worried me.  I checked in with my sister and asked her what she thought and she said that taxol, especially the very first dose, won't hit me hard until Thursday, so I should be good to go to dinner and attend the meeting.  I am pleased with that, at least.  And vanity-wise, I'll still have all my hair firmly attached to my head.   But I'm also impatient about the rest.  The thing isn't growing at nearly the speed it was a few weeks ago, but it is getting bigger.  Still doesn't hurt.  Still mostly just tired.  

I don't think I've mentioned it here yet, so a quick note about why I really want to continue with this study even with the delays and even if I end up in the control arm.  Leasha and I are relatively rare in being white women with this type of cancer.  The "normal" patient is of Latino, African, or Afro-Caribbean descent.  When Leasha had it five years ago there had literally been no studies done on it, even though it had been known for several years.  Nobody has said so, but it seems like there's a great neglect in the research due to racism and the demographics there - the majority of patients who are triple negative don't have money or good insurance and have been left behind.  That sucks, and I want to help reverse that if I can do it without damaging my own health further. 

I expect it to be a quiet week.  PT on my knee on Friday, and otherwise just waiting for email updates from PeiGen on how the testing is going. 

No news is kind of annoying news, and a little more on how and when to help.

Not much to report right now, still waiting for the people in Ireland to finish mapping my genes and I'll start chemo either Tuesday or Thursday next week.  If Stanford/Novartis/the people in Ireland can't get it together by Thursday, I'm dropping out of the study and going back to Alta Bates.  Which will be incredibly annoying if it happens, but I'll deal with it.  Not incidentially, for the first time in a couple of weeks I started taking low doses of valium again today. 

In the mean time, a bunch of people have asked how they can help, and what we need right now.  The answer at the moment is that we're fine. We are incredibly lucky that I have a job that allows me to work from home 100% if I choose to, and I've never really kept traditional 9-5 hours on this job anyway, so I'm still working and intend to do so for as long as I feel well enough to answer emails and sit on conference calls.  I expect I'll go on disability for a few months when it's time to do surgery early next year.

Right now Bob is working one part time job and taking a summer class.  He had been looking for another job but we decided that it's more important that he finish school ASAP so he'll be taking a full load again starting in September in hopes of transferring to Cal State East Bay in January.  So for the moment, finances are a little tight, but he's able to take care of the vast majority of the driving duties and our at home cooking and cleaning habits haven't changed significantly. 

This fall and winter is when we're really going to need help - when he's in school and working football games (if you're not aware, he referees high school games here in Alameda County) and I'll be a lot sicker and more tired from the cumulative effects of chemo.  He'll drop some games if he needs to, but I'm hoping he can do as many as possible since he loves it so much.

A bunch of people have already signed up with lotsa helping hands (talk to Mo - piegirl at gmail) and a few have donated some money, which we hugely appreciate.  When the time comes we expect to use the money to go towards purchasing a few meals a week from http://www.threestonehearth.com/ - which is a service that has gotten rave reviews from a few of our friends who use it regularly anyway.  They have a rotating menu of freshly cooked organic meals available for pick up or delivery and I'm feeling like this will be a healthier choice than generic takeout.  If there is extra money we may use it to hire our housecleaner to come every week (she's been coming every other week for several years now) and possibly for massage therapy. 

When I start with the surgeries we'll need more help with driving, cooking, grocery shopping because I'll be under orders not to lift anything heavier than five or ten pounds for several months. 

So, again a HUGE thank you to everyone who has offered to help and I promise we will take you up on it in another couple of months when we need to. 





 

...and then there's more testing.

I went back down to Stanford today to do the final testing the study requires before I start.  They wanted an EKG, a chest x-ray, some blood draws and I had to pee in a cup.  So the study coordinator said she would meet me at the curb at valet parking. 

She greeted me with an enthusiastic hug, EVERYBODY at the cancer center who I saw at tumor board asked how the wedding went and several wanted to see pictures.   Apparently I am a little famous for that one. 

She ushered me through all the different departments, no real waiting time for anything until the very end of the two hours I was there.  Instead of sending me to the lab for bloodwork, they sent me to the chemo infusion rooms, which was cool - a nice preview of what it will be like when I start for real next week. 

They did the blood draw through the port.  That was really strange.  First, the thing is exactly between my breasts, and I wasn't thinking when I got dressed this morning, and wore a bra that squishes the girls together today along with a white tank top.  So I'm sitting there, holding my boobs apart with a napkin draped over my top and tucked in my bra so I don't accidentally bleed on it, and the nurse was trying to poke a needle in it. 

He finally got it in, and then did something I've never experienced before - they pushed saline before they did the draw to keep my blood pressure up.  I could taste it about a second after he did it, and I could feel the pressure climb in my ears.  I've had IVs before, but always in the arm or the back of my hand, and it never felt like that.  Don't know if this was different because of the location of the port, or because he pushed it so fast.  He definitely put more in than he took out, and I still feel it a little bit. Then I had to pee in a cup and I was done. 

Apparently my pathology slides are now in Ireland getting the full genetic workup.  They expect that to be finished in the next couple of days, and once that is complete they will randomize me and I'll know which arm of the study I'm on.  We're expecting that I'll start next Tuesday, July 16. 

In the mean time I've got another check-in with Consorti on Thursday to confirm that my port incision is healing right, and physical therapy for my knee on Wednesday. 

I've had just about enough of hospitals.  Ha. 

In other news I bought a bunch of "chemo caps" (four of the solid color ones, if you scroll down here) and Buffs yesterday, which I think will be my default headwear for the next six months.  I can wrap scarves around the caps, or just wear the Buffs like a do-rag.  Only two of the caps are neutral colors, so they won't show through the scarves as much.  Everything else is bright colors so Simone won't yell at me. ;) 

Big decisions this week.

I got up early Monday morning to do my PET scan.   It was still disgusting, but the barium "milkshake" they gave me wasn't nearly as awful as the last time I had to drink one.  The scan went fine.   I got the results back from Consorti on Monday afternoon. 

My lymph nodes are negative for cancer, but are still lighting up all over the place, which they think means my body is aggressively fighting it, and the two that were biopsied aren't too happy about it. 

They said the lymph nodes in my neck looked a little weird, but that sometimes happens if you talk yourself hoarse, which I did over the weekend. 

In between the PET scan and Consorti I spent a bunch of time on the phone, asking different people for their opinion on if it's OK to delay chemo to do the Stanford trial.  Across the board they said yes, which really surprised me.  They weren't hedging at all - apparently they've proven in the last couple of years that tumors don't start throwing off cells that metastasize until much later than they originally thought.  Every oncologist, oncology nurse, and breast surgeon I talked to said the same thing - two weeks won't make a difference. 

So I agreed to do the trial at Stanford.  I go in for more tests on Monday and should start chemo around 7/16.  I'm not sure at what point I'll find out which arm of the study I'm on.  I'll either be at Stanford once a week, or at Alta Bates once a week, with a visit every 3rd week to Stanford to measure my progress. 

I'm still feeling really tired, so I guess this is the new normal.  That draggy feeling you get the day before you get the flu?  That's me, all the time.  I can push through it and get things done, I just know that the minute I stop I'm going to fall asleep.  Which makes sense, my body is trying to fight this, and it is costing me in energy.  I'm grateful for the four day weekend.  I have no plans beyond a movie this afternoon and breakfast on Saturday. 

Bob's going camping with some friends on Sunday.  I was never going to go on this trip - I have exactly zero interest in carrying a backpack up to the top of Angel Island - but since I'm not in treatment yet I told him he should go.  I expect to spend most of the weekend in bed with a book.