Good stuff, bad stuff.

As promised, I didn't overdo it.  I did just enough and what I wanted to, and I took a lot of cabs.  We dropped John off at the airport around 10pm Thursday night and came straight home from there.  I didn't leave the house yesterday, did a little bit of work, took a long nap, and let other people bring me dinner. 

I went out and met Cait for breakfast and did some grocery shopping this morning.  That's my big outing.  I do need to deal with a massive pile of unopened mail that I've basically been ignoring since mid-May.  I've been a little bit distracted.  The basic bills are automated and they haven't turned the lights off yet, but I suspect there are going to be some unhappy surprises in there.

Other unhappy things that are not surprises are happening.  The steroids are really taking a toll.  I can feel my legs getting weaker, and I know I've lost all the gains I made in physical therapy this year.  I'll get it back, but it sucks to feel so physically unstable again.  Bob's been bugging me to pull my cane out of storage, and as much as I hate to, I think it's time. 

The other one that I knew was coming is swelling in my legs and feet.  It's normal.  Part of chemo.  Part of not being able to exercise regularly.  Part of being fat and over 40.  Part water retention from the steroids.  It's uncomfortable, and while it's been happening and I've been recovering overnight up until now.  Not last night.  Time for compression stockings.  At least it's not so hot that I'll be roasting in them for the next few weeks. 

Blah.  I'm not as miserable as I sound.  A little down I guess.  I'll get into bed with a book and deal with the bills later. 

Learned a lesson, but mostly a good day.

I guess I'm blogging more this week because everybody is worried about me overdoing it at the show.  :)

Also, a note on the title for my non-native English speaking friends now that I realized a bunch of you are reading this, and you may have no idea what it means.  It's a bad pun.  "Crabby" means grumpy and ill-tempered in English. Also, "cancer" is an astrological sign, and the symbol is the crab.  Ta-da. 

The day did not start out well.  I ativan'd myself to sleep last night (which I am working on again tonight) because of the steroids.   But I set an alarm for 7:30 so I could meet T for breakfast at 8.  I woke up and realized the room was pretty bright and looked at my phone - 8:40.

So apparently the alarm went off and I didn't hear it.  Bob turned it off and didn't wake me because "one day earlier this week the alarm went off and you didn't get up".  Ummmm.  Let's just say every marriage has it's ups and downs and leave it there.

So I call T in a panic - she texted me but didn't call because she assumed I wasn't feeling well.  I still feel terrible.

So I ended up throwing  yogurt and pudding in my bag for breakfast and grabbing a cab down to Moscone for my morning booth duty. Booth duty involves standing behind a desk and handing out t-shirts that are sitting on shelves all around you at knee and floor level to people who stand in line.  It's not hard, but it is a lot of bending over.

So I discovered that zofran (the anti-nausea med) works great for me, unless I lean over and try to pick through piles of shirts at floor level trying to find the right size.  I can tie my shoes.  I can pick up a single thing off the floor.  But this activity was a no go.

I'd bend over, and unless I found the right size first, I'd start feeling like throwing up, and by the time I talked myself down from that, I could no longer remember the size the person had asked for.  NOT FUN. And I looked like a giant bald moron.  M came back and rescued me, and then I felt terrible because the shirts had been organized well and I basically left them in messy piles for other people to pick up.  That's actually the first time I've felt completely incompetent and like I'm a drag on the team.   I will not be doing t-shirts again tomorrow.  (I was fine doing t-shirts pre-chemo on Monday.  No problem.  6 hours of it.)

I did sit down at a table near the booth and it turned out to be a good thing.  I'm actually kind of famous in my world, and didn't realize how much that had seeped out from the Java community into the larger OTN community.  For two hours I had people who recognized me either by face from a presentation I did on Friday at HQ, or by name on my badge because they'd seen me on the message boards I've taken over, and they sat down to chat and talk about what we're doing.  So, I'll take more of that tomorrow. 

M and I were off duty at 11:30 and needed to go back up to JavaOne to pick up Bob's suitcase from the booth (it was used to transport our last bag of stuff to give away this morning), and we weren't on duty there at all.  But we ended up staying for another two hours basically because I kept getting flagged down by people who wanted to talk to me personally.  Got in another few intros for M and T out of that at least.  M and I finally got out for lunch, where tragically they delivered my (totally delicious) sandwich late and therefore felt compelled to comp apple cobbler for dessert.

M went home, and I came back to my room.  No napping on decadron, but I did get into bed with my laptop and did some mellow stuff with my feet up.  I even laid down and closed my eyes for a bit.  Felt good to be de-stressed enough to just be here and not do anything for several hours.

Leasha called and I got to ask her a bunch of questions about how we should configure the house while I'm post-op and we think we've got it figured out.  Turns out doing the guest bed in my office will be great for me during chemo, but pointless for surgical recovery. I basically will not have use of my abs AND my arms for several weeks, which will make getting out of bed impossible, and I'll probably need one of those extra tall toilet seats too.  So we're going to move our dining room table down to the living room (there's room against one wall for it.  We'll continue to build the guest room so people who have offered to come for a few days to care for me will have a comfortable place to stay, and we'll get a hospital bed in the dining room.  I'll still be central to the house, close to the kitchen and accessible bathroom, Bob will have privacy upstairs, and guests/caretakers will be close by but not right on top of me all the time.  We think it will work well.  And I've had so many people who are local volunteer to help too that I think we'll be in pretty good shape.  There will be a few weeks where I just need somebody around to make sure I eat and take my meds, but otherwise they could be working from my house, and enough of my friends are techie that this is totally possible.

Anyway, back to life here at the con.  It ends tomorrow.  The big concert (Maroon Five and Black Keys) was tonight.  Bob and I had no interest, so we just headed down to the mission and got burritos with our friends Ben and Anna who are here from London, and then sat in a quiet bar and chatted until around 9:30.  Nice low key evening.  Bob's back out with the boys.  I'm here goofing around and trying to start packing up this total wreck of a hotel room.  It's been so bad between us being colossal slobs, the giant boxes of swag that I'm giving away, the other giant boxes of swag that John was having us save for him to ship back to Greenville, that we just didn't want to bother.  They couldn't do anything but make the beds, and we don't even bother with that at home anyway.   Plus, I'm pretty sure one of my bottles of Ativan went missing the first day.  I forgot to lock the bag of drugs in the safe.   Whooops.  Didn't make that mistake again. 

I may have make-up breakfast with T in the morning if she's up for it and then she's flying back to Chicago.  I've got booth duty from 10-noon with M at Moscone but no t-shirts (and it will be dead dead dead because it's the last day), and then I invited a bunch of my friends to join me for lunch tomorrow.  I haven't seen them enough because I have been being good, and also because of the food thing - everybody eats dinner at the buffet events, and I can't, so I go eat by myself.  Seriously cuts down on the hanging out time, even when I had the energy to be out of the room.

I'm not sure who's still in town, but it should be somewhere between 5 and 20 of us and I am very much looking forward to it.  I will confess to crying when I sent the email out.  This is hard.  Big changes.  Letting go.  It's more than the cancer.  It's the fallout from my promotion - I had to stop traveling with these people because of it, and now only see them once a year.  That plus the great unknowns of this year make it hard. 

That's it for me tomorrow.  Packing up, checking out and having dinner with John (and maybe one other friend) before we drop them off at SFO on our way home.  We should be back in our own bed by 11 tomorrow night.  Looking forward to it. 

I'm glad I came for the week.  I am sad it's over.  While I did push to the limit, I didn't walk past that limit at any point and I'm pretty proud of myself. 

Week 9

We did everything different today, but so far so good.  M and T came with me down to Stanford.  We had time for a quick lunch at Umami Burger - I had a burger topped with a short rib, gruyere, and garlic aioli.  Wow, was that fantastic.  I usually have a beefy sandwich of some kind going in - having a lot of protein beforehand seems to keep everything else stable through the treatment. 

So then we went in and I explained Nurse Anne's instructions to the nurse who did my blood draw and it worked (slooowly again, but I got return on the first try).  I also requested a private room so M, T, and I could talk work stuff without disrupting the other patients.  It went OK, and they said it was interesting to them to see how they do things in person.  I was a little zoned out for most of it, honestly, but they were able to talk and ask me questions and I think it was worth doing for all of us. 

We were out the door at six but had heinous traffic getting back into the city.  We dropped M off near BART, and then went back to the marketing party, which was more like a large group panic attack.  I am very fortunate that I do not have to care about this:  Oh no, he didn't!

But just about everybody else in that room does.  They have to spin it, and they have to plan to change signage tomorrow based on the outcome of the race, so they all have to have two totally different plans to execute on for PR, social media, our websites, keynote content, everything.  Marketing nerd panic.  Glad I don't have to deal.  But the main goal in attending the party was to get T introduced to our boss's boss so he has a face and a name as she takes on my old position. 

Mission accomplished in about 15 minutes, and then she went off to a VIP party she was invited to, and I went off to have dinner with my friend Michelle at this really nice place (25 Lusk) down the street.  We had a fantastic time catching up and an amazing meal.  I dropped her at her hotel and then came back to mine and called Bob.  I did get my second round of meds a little later than the last few weeks, but everything's OK so far, and I am wide awake.   Bob and a bunch of our friends are at a bar about a mile from here, so I asked if they would mind moving back up here to the hotel so I can join them for a while.  I'm definitely awake enough to see everybody, but I don't want to tempt fate and be away from a clean bathroom tonight.  Waiting to hear back on that one.  I won't be offended if they don't make it back here before closing, but I will be able to join them earlier tomorrow at least, so I'm looking forward to that. 

The party continues...

I think I've spent all of five minutes with Bob since Saturday night, which is good.  He's hanging out with people he never gets to see (that I've spent a lot more time with at the international versions of these conferences).  I think I've seen everybody I wanted to and a few bonus faces.  I miss him, but I'm glad he's having fun, and I'm sleeping so much I wouldn't be good company anyway. 

Today was my longest day on the show floor - I worked our booth from 9:30-12:30, and then came back for a couple hours in the afternoon.  I got in two naps, and then went out to a party (on the 46th floor of the Hilton, unbelievable view from up there) and to a session I wanted to see, and then had dinner on my own at the restaurant.  Food continues to be a frustration - the party had a fantastic buffet, but I can't guess at how long it had been sitting out, or sitting prepped in the kitchen ready to go, so I went down to the restaurant and had a good risotto and some tea and read up on the interwebs for a bit. 

Tomorrow I don't have to be anywhere until I leave for chemo at 12:30.  I've got yogurt in the fridge and that'll be breakfast, I think.  I'll probably go up to the expo hall just to say hi to people and drop off the rest of the swag we're giving away.  But otherwise my plan is to stay in bed, get caught up on some non-conference work stuff, and just generally take it easy. 

I'm bringing T and M with me to chemo tomorrow.  It's really the only time the three of us will have to spend together alone before T goes back to Chicago, and I feel like it's important that they get to know each other better and we all have a united plan for how we're going to deal with work stuff. 

I'll get my big dose of steroids tomorrow after chemo and will have magic energy again, although even that is getting more and more short lived.  I can tell you I am not looking forward to the get-up-and-pee-every-20-minutes thing tomorrow night.  Usually I try to maintain a bedtime closer to Bob's, but all bets are off now - he'll be out until after the bars close, so maybe I'll stay up late with a book or something. 

Wednesday and Thursday will be the easy days.  Two hours of booth duty before noon, and that's it.  I'm looking forward to hanging out with T & M tomorrow (even if it is at chemo), but I'm ready to go home beyond that. 

I've got some other crazy travel stuff coming up in October.  I think it will be good.  A friend was offered a vacation house for free for a long weekend, and it happens to be the weekend before my last chemo and testing on the trial.  Just a few girls out in the country for a few days.  It's only a two hour drive, and I expect to do nothing but hang out and chat and take naps and read on a couch somewhere.  The weekend after the trial ends we're going to a family reunion thing, and then the next week I have a 48 hour work trip to Vegas.  I would have said no to Vegas, except it's going to be in the middle of the couple weeks I'll have off while we figure out if I'm doing chemo or surgery next, so I'll actually be in pretty good shape for it.

Somewhere in the middle of all of that I've got a birthday, and then we've got to figure out what - if anything - we're doing for the holidays. 

Big job done.

So this one's not so much about cancer.  But maybe it is.   I didn't sleep well at all last night.  Had a bunch of those weird dreams where you know you're dreaming but you're not really asleep either.  Seems to be a benzo thing.  It's been happening a lot lately.  I am completely stressed out about the cats.  I have no idea why.  My fears about food did come to fruition - it wasn't too terrible, but the rich and/or unpredictable food is taking a toll. 

My big meeting went pretty well.  Last year was crazy - people were really fighting about the site that I manage for work.  It was uncomfortable, but incredibly productive.  When I step back and look at it, even though I got spanked pretty hard it was a really good thing to know that thirty incredibly smart people that I respect deeply truly care about the thing I do enough to fight over it.  That's kind of huge.

This year was much more polite.  I'm not sure how much of it was that we're doing better, or that people were being nice to the cancer lady.  Dunno.  It wound up and down much more quickly than I expected it to.  But it felt like a good conversation. 

Now I'm back in my room.  I am exhausted.  Much more emotionally drained than I expected to be, I think.  A little sad.  I got to see most of the people I wanted to see.  I even stopped in at another party before coming back to the hotel. 

My big goals for this week were:

1. Get through this meeting tonight.  Even though it's technically the job I've been promoted out of, it's been my baby since 2005, and this meeting has been the most important day of my work year since then.  And even though Tonya's fully ready to take over the job, she doesn't have all the keys to the kingdom yet (corporate bureaucratic bullshit), so we're in this weird middle place for a couple of months. 

2. See my friends.  Got a good start on it, much more to come. 

3. Make all the introductions I can to ensure a graceful exit in the next couple of months.  This is both easy and hard. 

It's weird.  Even though I've been running this website for several years, and have a team of 4-6 people who work for me (depending on how you count), they aren't O employees - everybody is a contractor of some flavor.  And I am the most non--micromanagey person ever.  I don't think of myself as a manager in a traditional way - maybe because there's no framework for HR or any of the stuff that goes with it.  But these people do work for me.  I tell them what to do, they get paid for doing it.  I have had an amazing run of luck in hiring or inheriting people who are just plain awesome to work with. 

So now here I am, in this mental place where I have to think about this in a deeper way.  There has always been the possibility that I could get hit by a bus, right? But now the bus is hitting me in slow motion.  My general thinking about how to be a good manager has evolved over the years.  I think my number one job is to make it possible for the people who work for me to do their jobs in the most comfortable way for them.  If they are productive and happy, I am productive and happy, so it is in my best interest to keep them that way.  But flip that coin and the other side looks good too - I think that in a lot of ways the best leaders plan for their eventual obsolescence.  It makes sense as a management philosophy - especially in a field like community management.  I want to build a team that can operate independently. That's a good thing.  It's not so different than good parenting - the idea that you need to prepare your child to not need you. 

Putting that in practice is hard.  Graceful exit?  Graceful exit to what?  6 weeks off for a bilateral mastectomy?  6 months off for surgery and the really brutal chemo still to come?  Just going ahead and dying at some point in the next year?  I like none of these options.  All of these options are extremely real. 

How did I get this far and not really talk about death?  Not really think about it?  Don't worry (more than you are) this is not some great depressive cry for help.  It's just the reality of the situation.  I'm an idiot and and asshole if I don't address that. 

So, back to the parties tonight.  Goal number 3 - make all the introductions I can to ensure a graceful exit in the next few months.  Easy and hard.  Hi person X, who is probably surprised by my baldness and cancer-havingness, please meet M and T, who will be taking over in my future absence. 

So many mixed feelings there.  Pride (I guess?) that I know they can handle it without me.  Sad that I know it's going to be hard for them to handle it without me.  They are perfectly capable, but just don't have the institutional knowledge that I do.  A real kick in the gut - is this the last time I do this thing?
If it's the last time I do this thing is it because I was promoted away from it, got a new job, or died?  All of those things are possibilities.  And so is everything being pretty much the same except I have better hair and boobs this time next year.  

I don't know.  I do know that I am several steps farther down the path of letting go tonight than I was this morning.  The open question is still - what exactly am I letting go of?

The chemo/hotel experiment begins.

JavaOne/OracleOpenWorld officially start on Sunday, but for me they start tonight.  I've spent the last couple of days packing and prepping like a crazy person and then drove down to do a presentation at corporate HQ and then back up to check into my hotel for the week.  Bob's on his way in now (he had a football game tonight). 

I am paying extra $$$ (Larry can afford it) to rent a refrigerator for our room, and I'll go hit the grocery store for yogurt, coconut water, and a few other things that have become necessities in the last couple of months. 

The weirdest thing about packing is the total change in my toiletry kit.  No hair products, brushes, combs, anything.  Lightens the load considerably.  I've basically abandoned the scarves at this point.  I'll wear them or a hat if my head gets cold, and for sun protection but mostly it's just too fussy.  I end up pulling at them, or they fly off in the breeze or I turn my head and the scarf turns and gets stuck on the fabric on my shirt and then when I turn my head again the scarf stays where it was.  I tried wig tape, and it helped a little bit, but still kept getting stuck in weird places or in the last three hairs that are still firmly attached to my head.  So I'm going out bald and wearing bright lipstick and calling it done.  I intend to go find some giant earrings at Macy's tomorrow to complete the look. 

But to make up for the lack of hair crap, there are two gallon size ziplocs full of prescription bottles, plus my giant 4x7 pillbox, plus my extra barf bags (still haven't needed them, keeping them around just in case). 

My biggest fear about this week is really just about eating out at every single meal.  It's always a worry when you travel anyway, it's a bigger worry now because if something throws my system out of whack it could be way worse than usual.  So I'm back on my old school travel protocol - take a pepto bismol pill before every meal and bed. 

The doc at the travel clinic who did my immunizations for my first India trip recommended that - she said that the "coating" action of the pepto helps keep some of the minor bugs you might pick up from sticking in your gut, and while most of my travel companions got sick at some point, I never did (except in Belgium, where I didn't take the damned pepto).  So back to that and trying to be careful.  The hardest thing is going to be avoiding the buffets - it's the way food is served at conferences this size, but it's a risk for me now, so I need to go out and order every meal off a menu all week, which is not tragic by any means, but will be more time consuming and means I'll probably miss some of the group meal events. 

More port trouble, but I'm doing fine.

I didn't have to get altaplase today, but there's still something funky going on with my port.  The only position in which we could get any blood return this time was with me sitting in a chair, squeezing my boobs together with my hands, leaned all the way forward with my head basically in the nurse's lap, and it was slooooooow.  It took about 30 minutes to get enough out to run my labs.  There was nothing to do but laugh about it at that point. 

Infusion went OK, I'm kind of bouncing off the walls now because of the decadron, but I started taking the series of drugs to help me sleep at 10 and we'll see how it goes.  I'm starting to feel a little bit looped but not really sleepy (clarkly).  Here's my doc approved routine for the curious -

8pm - lomotil (stops the runs, makes you sleepy), pepto bismol, regular supplements, and dinner.

10pm - zofran (stops the nausea, makes you sleepy)

11pm - .5 mg ativan (stops the nausea, makes you sleepy)

11:30pm - .5mg ativan

midnight - lomotil

1am if I'm still awake, another 1mg of ativan

6am-ish lomotil and decadron, ativan if I have any nausea.  

Chances are, I'll be wide awake and ready for more steroids between 5 and 6am. 

Met my new oncologist today - she dropped in to see me while I was getting my infusion.  She's actually the triple negative expert at Stanford and very well known nationally.  Really liked her, happy I'm staying.  Since Dr. M left Arati the NP has been reassigned to work for a different oncologist, but Dr. T said she'll bring Arati in to work with her on my case for the remaining four weeks, and I'll meet with Dr. T personally again at least two more times before the end of the study. 

She wants me to call Dr. C (the surgeon at Alta Bates who will do the mastectomy part) and start getting referrals to plastic surgeons this week, and get the mastectomy/oophorectomy/reconstruction scheduled for early November.  Depending on what reconstruction route I choose there could be one or multiple surgeries there.  Lots of decisions to make - silicone?  My own tissue?  Silicone/spacers is in many ways the easiest - it's the standard.  I can choose a size (I'll probably downsize a cup), but from conversations with other people (including my sister) who have gone that route, it actually drastically changes the musculature in your chest to have the spacers in there.  Like possibly to the point where I couldn't do pilates anymore.   That would SUCK.  I miss it so much I don't have the words to explain it.  

Harvesting my own tissue is a much bigger surgery - essentially I'd have to have lipo in multiple places along with the regular tissue removal and skin grafts associated with bilateral mastectomy.  It's much more dangerous in terms of risk of bleeding out on the table, it's probably multiple surgeries over time to do more lipo and shift fat around in my body to get it to look right over time.  But I do have plenty of spare materials hanging around.   I don't know what the musculature changes will be with that one.

Lots of questions.  Hopefully answers I can understand in the next couple of weeks.  I'm going to try to bring Cait and Bob to the consults to have more ears belonging to people who know me well and who can ask questions and take notes. 

The timer is dinging for my lomotil.  And I'm off to read in bed until I fall asleep or the alarm goes off, whichever comes first. 

Week 8

My weekend was good.  We spent Saturday evening at a pig roast with old friends and then had Paul over for dinner last night. 

It's now time for my weekly case of I-don't-wanna.  It's scary to be confident about going into an infusion, because who knows what the hell else could go wrong.  Hello pretzel logic.  I called in refills for a couple of my prescriptions today, because on Friday I'm moving into a hotel for a week and don't want to have to come back to my pharmacy if I run out of stuff.  Next week I'll be going straight from chemo to a party for the marketing team.  Kind of surreal. 

If I need altaplase tomorrow, I'm OK with that.  If the drugs work as well as last week, I'll be OK with that too.  More than OK.  I'm going to need the steroids to get through this week for sure though.  In a lot of ways I've been mentally prepping myself for next week, not the end of the trial, or the end of chemo altogether, or surgery.  JavaOne.  Oracle Open World.  The week of my life that is so busy I don't have time to come home so I live in a hotel, which if our room is on the right side of it, probably has a view of my house across the bay.  

Dexter is going to go live with Rita's family for the week.  Natalia will come feed the cats.  I can come home if I need to.  I've cut way back on my obligations this year, but I can't imagine missing it.  JavaOne is where I met Bob in 2009.  It's a chance to see so many friends from around the world that I haven't seen since I stopped traveling earlier this year.  I am incredibly lucky to work with a group of people who I really care about, and who I genuinely look forward to spending this time with.  It's a lot more to me than just my job, so I'm doing what I can to be there and do it right.

Once it's done, I can let go of everything else.  Be sick.  Take time off.  Read a book.  I don't know if I will.  But I can.  

I woke up this morning and saw Drew Carey in the mirror.

My hair is just wispy little blonde fuzzies now, black rimmed glasses, and yes, I look like Drew Carey.  You're welcome for that visual. 

The new drug regimen worked like a charm.  I haven't been sick.  Is it sad that I'm a little disappointed I haven't gotten to try out my fancy new barf bags yet? 

Wednesday and Thursday I took the decadron (steroids) in the morning with breakfast like I was supposed to, and they kept me awake but not too hyperactive during the day.  I do need heavier drugs to get to sleep with on those nights.  This morning no steroids, and I only had one phone call to do today for work at 11, so I decided to go without coffee and see how I did. 

I made it through my meeting, but I was completely out of gas - like took several minutes to climb the stairs to get into bed.  Pretty sure I had my earplugs in and eye shade on by 11:30 and was pretty much unconscious until after 3. 

Somebody asked about the stairs a while back on FB, I think, and I don't think I ever answered the question.  Our house is a split level townhouse perched on a hill.  It's essentially four stories - the ground floor has the garage, laundry, living room, and no bathroom.  The "basement" is a full bed and bathroom (Bob's office), but is bright and sunny because we're on the hill.  Second floor is the kitchen/dining area, my office and a full bath, and then the entire top floor is the master bed/bath.  Bob's working on building a murphy bed for my office, and when I'm sicker I expect to sleep on this floor regularly - it's much easier to take care of myself if I'm on the same level as the kitchen, and the bathroom is closer too.  But it will be a few weeks before that's done, so for now I take the stairs, and I am always careful.  Unless we actually get a portapotty in the living room, I'll always be at least one flight up from the ground floor here. 

Elise brought me dinner and I introduced her to Top Gear, and now she's gone and I'm headed back for bed.  Bob's working a double header tonight and I expect I'll probably be sound asleep by the time he gets home in an hour, and I expect to spend a good chunk of tomorrow in bed too.  That's OK.  I'll take sleepy over sick for as long as I can.

Some big decisions coming up that I'll write about more when I'm a bit more awake - short version is that things are looking good enough that they might recommend that I do the mastectomy in October rather than waiting until spring.  There are reasons for and against, and it comes down to whether or not the tumor disappears entirely by October 15.

I'm really starting to believe it might.  I had a hard time finding it this morning.  

Good day.

The new meds worked great last night, despite the decadron, I slept for about five hours.  I was up ever 45 minutes or so peeing, but otherwise no illness or cramping.   And I was awake all day today (decadron, it's what's for breakfast).  I took a nap from 4-6, but it was more because I wanted to than because I needed to. I expect I'll crash a little earlier and need some coffee to get through tomorrow, and then Friday will be sleep day. 

Dropping the anti-diarrhea meds tonight to see what happens.  I should be in the clear now. 

Also brought home my new baby Vitamix from CostCo today.  HUGE thanks to Lani for letting me play with hers before I decided to spend the money (which I decided within the first five minutes). 

Smoothies and soups coming up.  Bob is excited by a hummus recipe, and I can see a whole bunch of drinks I'll be playing around with once I'm off all these drugs.  :)

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.