A plan is a good thing.

Feeling much better this morning.  There are so many things that are hard about this - some of them maybe unique to me (the food diary thing) and some that I suspect are universal - asking for help, feeling good for a few days and then knowing that I will feel like hell and not know for how long it will last *this* time.  Watching the world go by on a down day and not being able to participate. 

Today, I'm awake.  This is especially good because this morning I have to clean because the cleaning lady is coming at noon.  I picked up around the bedroom before I came down for my coffee, and I'll be cleaning the kitchen while taking my next couple of phone calls. 


She always starts with the master bedroom (top floor) and then moves down.  I've never stayed home while she's here before, but I will today.  I'll grab the dog and the cats and camp out up there and work from bed.  Could be worse.  

Also, random symptom that I don't think I've documented yet - constant bloody nose.  It's not like a free flowing won't stop thing, it's just that the taxol is drying out my skin and things are cracking up in there.  It's pretty gross.  Right now if I feel like something's running and I reach for a tissue, there's a 50/50 chance it'll be blood.  Yuck. 

And finally, a plan to make a plan.  I am good at planning.  I mentioned it last night, but I'm going to do the spa thing with my sister this weekend.  And then I will come home and sit down with my calendar and Bob's calendar and figure out when and where we'll need help.  He's got a good chunk of his football schedule down now, so those are evenings when people could bring me dinner and/or hang out for a bit.  Then I will communicate that to Mo and we'll kick the lotsa helping hands site into gear. 

I think I'm also going to use the cash some of you have donated there to buy a Vitamix.  Lani loaned me hers, and I am a fan.  ;)   It is definitely the easiest way for me to get fruits and veggies in at this point, drinking is easier than eating on the bad days. 

And a reminder, if you want to sign up, or donate money (this is me asking for help! (cringe)) you can contact Mo at piegirl at gmail. 

Another zombie day.

Today was really the first day where I just couldn't care for myself.  Too tired.  I planned ahead, based on my experience last week - cancelled as many meetings as I could for work, brought my laptop and gear upstairs so I could take the ones I couldn't skip from bed, and did nothing else.  Bob brought me a raspberry smoothie (frozen raspberries, yogurt, protein powder) for breakfast, and I drank that down while listening to my 8am call with the guys in India.  I was already crashing hard by 9:15 and slept straight through until he brought me some soup at 2.  I got up around 5 and took a shower, and then spent another hour just staring at the ceiling before coming down for dinner, which I ate about 4 bites of.  The steroids were definitely supporting my appetite.  I dropped about five pounds this week.  

Feeling pretty down right now - exhausted, headachey, hard to take a deep breath. I know it will be better soon, and I know it will be worse next week.  I'm feeling whiney and lonely and sad.  Sad for me.  Sad for Bob.  He didn't deserve this.  He's handling it like a champ, but it's hard on him.  Hard on us.

I do have something to look forward to this weekend - swanky spa day with my sister and her boyfriend.  I think a massage and some ridiculous spa food will be a good thing.  And then I need to come home and spend the weekend actually asking for help for the next few months.  I am not good at that.   It is hard.  It is humiliating.  I've always been the strong just-get-it-done one.  Can't walk down one flight of stairs and use a freaking blender for five minutes to make your breakfast?  What the hell is wrong with you?  Oh yeah.  Cancer. 

I am good at being kind to myself in some ways.  Not in others. I need to learn those others.  

Taxol #5 today

So far, so good.  Took my meds on time.  Feel a little wonky tonight but not too bad. 

By now, the routine is totally familiar.  Bloodwork, wait, eat a small snack, get called in to the infusion room, and then wait some more (usually about an hour total) in my comfy recliner with my feet up and good wifi for my laptop, then they plug in my pre-meds, and then the taxol.  I was done around 6 and got home around 7:30. 

Going with the kaopectate plan again tonight.  We'll see how it goes. 

Boring is good.

Not much going on beyond hair loss.  I wish someone had explained the lint roller trick to me up front.  Would have saved a lot of itching.  I think the pace has slowed a bit, I suspect that it'll slow down again tomorrow and then speed back up again after my infusion on Tuesday. 

In the mean time, my scalp hurts.  Not like a headache, more like a bruise on a sunburn.  A lot of people say they have pain before it starts falling out, I think that might actually be the weight of the hair on the dying follicles - I didn't feel anything until the last couple of days, but now it's pretty constant, and the acne is pretty nasty.  I think it probably looks as gross as it's ever going to right now - some of the acne is scabby and it's noticeably thinner in places and totally gone in a few small patches, and of course the only thing that really hurts is actually putting something on it to cover it up, and I risk adding a real sunburn on it if I go outside without a hat.  I predict not a lot of public outings in the next week.  

Good day today.

I managed to stay mostly awake until around 9 last night, and then I slept straight through until about 3, and then stayed in bed dozing off and on until about 8 this morning.  Got up and was wide awake, like awake enough and energetic enough that I forgot to make coffee. 

I took my loaner vitamix out for a test spin to make a smoothie with yogurt and whole frozen strawberries for breakfast, it was perfect and now I get what all the fuss is about. 

The only other news is that my hair is officially jumping off of my head now.  So glad I buzzed it first, because even at 1/4 inch, this is disgusting.  It is everywhere, making me itch like crazy.  In my shirt, on my face, on the furniture.  And it's a little worse because they gave me this prescription ointment to help with the acne on my scalp.  The stuff is definitely helping, but it's also a little bit tacky to the touch, and of course is all over the hair itself.  So that's making it stick worse. 

It is unpleasant, but honestly, kind of funny too. 

Can't wake up

It's 6:48 pm and I've been staring at this blank page nodding off for several minutes now. 

The Kaopectate/Coconut water experiment worked, after I signed off last night I went to bed and wasn't sick - which was great. 

The problem is that they give you a ton of extra fluids, and when I had the runs those were on the express train out of my body.  This time, I had to get up and pee literally every 20-30 minutes all night.  So I didn't sleep well.  I got up at 8 and did my morning meetings until about 9:30.  Felt just stupid exhausted, talking like I was drunk (one ativan for nausea this morning, and one more I'm about to take, and that's it for today, which is not enough drugs to cause that kind of feeling).  If this is the future, then I'm taking every wednesday as a sick day until I'm done with the trial, and I need to start keeping extra snacks and bottled water upstairs too.

I thought maybe I'd sleep for a couple of hours and wake up again, but to make sure I set an alarm for 12:50 to I could be sure to make my 1pm meeting.  I felt just as exhausted.  Fortunately, I didn't have to do anything but introduce two people and listen.  I did it from bed.  I fell asleep as soon as it was done and didn't wake up again until pretty close to 5.

I could go right back to bed right now.  I've had zero appetite.  No real nausea, but no hunger.  I forced down some oatmeal this morning and then had a nutrigrain bar and some creamy corn soup from a box just now.  There is a slice of ham taunting me with it's brown sugar covered goodness.  I don't know if I can get it down, but I need the protein.  They say don't eat things you really like in the days immediately following chemo, because you can accidentally turn yourself off to your favorite foods.  I get it now.  Bland city until I wake back up again. 

All in all, I'll take the zombified feeling over being sick.  But if I can't shake this tomorrow, I'm going to have to seriously reconsider my stance on taking time off on disability.  Or beg for the steroids.  

changing it up, so far so good

Today was the official start of round 2.  I got there and checked in for my bloodwork at 12:45, and then waited for about 45 minutes while they did the labs and then spent close to an hour with Dr. M. 

We didn't do an ultrasound today, but in the manual exam he commented that it feels different to him, and went back to check his notes from the last two exams.  It's nice to know that it's not all in my head, the chemo is doing something.  I told him that I think right now it feels the way it did in the shower over Memorial Day weekend.  In the weeks following it got bigger and harder, rounder somehow - like the difference between a pecan and a ping pong ball.  It's back to being a pecan now. 

We talked a lot about meds and nutrition, and how to handle the massive attacks of diarrhea I've been having, followed by days of constipation.  Turns out, that glutamine supplement that I'm taking to prevent neuropathy?  Can give you the shits.   I haven't been overdoing it - they recommended 5 mg 2 or 3 times per day, and that's exactly what I've been doing.  Apparently, some women get the idea that more must be better and make themselves a lot sicker.  So that might be a contributing factor, but I'd rather have the runs every day for six months than permanently lose feeling in my hands and feet.  Choices.  Dr. M agreed. 

So next up was what to take for the runs and when to do it.  My instinct for years has been that if my body wants this shit out, there's probably a good reason for it and to let things run their course and stay hydrated for a day or two, but if things flip to where it seems to be just happening because my gut is irritated from being sick, then I take the Imodium. 

But that doesn't really translate here - there's nothing specific to get rid of.  It's already irritated from the taxol and the LCL161 just triggers the physical response.  So we decided that tonight I'd try something different - take Kaopectate (he specifically recommended it in this instance over anything else) when I get home, before I get sick.  So I did that, and then ate a very bland dinner.  My guts started rumbling at 8:30, and so now I'm taking a dose after every time I have to run for the toilet, and sipping on coconut water to stay hydrated.  It's now 10:30 and I haven't had to run for the bathroom in the last half hour, which is an improvement. 

The other thing is that today was the day we dropped steroids from the infusion - he said the study protocol calls for them and the benedryl during round 1, but not after that if I'm tolerating the taxol during the infusion.  So when I mentioned that I drove myself and wasn't sure how long it would take to be ready to drive home, he said we could just drop the benedryl and see what happens. So we did. 

They limit how much goes in the line per minute, so we stretched what should be an hour at full speed out to about 90 minutes, starting slow and ramping up the volume every five minutes as we tested the theory.  I did fine.  Next week we'll do it slow again without the extras and if that goes well, all future infusions will be just taxol, saline, and pepcid (for the reflux) at full speed. 

While I was plugged in the nutritionist came by to chat.  She agreed with the kaopectate and coconut water advice, and said the juice idea is a bad one.  Just skip the greens entirely for now.  Millions of people manage to survive without ever eating vegetables and I can get everything I need from other sources.  She said it might not be a bad idea when I'm recovering from surgery in the spring, but for now it's not just unnecessary, but could make things worse.  OK then.  She does approve of smoothies and other fruits and veggies, but wants me to limit them to 4 oz servings, and said that there will probably be a point later when I need to drop most fruit as well.  That'll be a bummer, but it will also be late fall by then and the main farmer's market options will be apples and squash, which should both be OK. We agreed that I'd keep my food diary for a week, and track how I'm feeling and when I'm taking meds as well, and then she'll come sit with me next week during my infusion and we can walk through it and look for places to improve. 

I felt perfectly fine walking out of there - a little tired, but not stoopid and tired, which is good.  I'm really glad I can continue to drive myself for a while longer - there's going to be a point where I can't.  But for now I'm good. 

And I'm tired, which is a good thing.  Even if I do end up with cramping and the runs all night like last week, overall today was a good day.  I felt better.  I'm definitely sick.  But I'm definitely better. 

week 4/cycle 2

Today's going to be another long one - I start cycle two which means I have to be there at 1pm for bloodwork, followed by a check-in with Dr. M.  I don't know if he's going to do an ultrasound to check on the tumor today or not.  Then I start the pre-meds and infusion at 3:30. 

It also means a change in what I'll be getting - this week we drop steroids, so I shouldn't have that insomnia tonight, but I don't know if that's going to make the cramping and runs worse.   

I've also got fresh prescriptions for a topical ointment to put on my sad, scabby scalp and a new anti-nausea med - reglan. 

We also don't know if I'm going to be able to drive myself home tonight.  I've been finE going by myself the last couple of weeks, but not sure how awake I'll be without the steroids.  If I'm too sleepy from the benedryl or zofran after the infusion (without the steroids to wake me back up), I can have a bed in the infusion room to sleep it off.  (They literally do have private rooms for exactly this purpose.)  Or Bob will come get me after class and we'll go back down to pick up my car tomorrow or Thursday.  And then I'll start asking for rides beginning next week.  

I never wanted to think this obsessively about food again.

Brief history for those of you who haven't known me long.  I am fat. Surprise!  I have been since I was about 19 .  I wasn't really fat before then, but like every American teenager I was convinced I was anyway, so while I don't recall exact dates, I'm pretty sure I started my first "diet" when I was 13 or 14, and like most people who have reached my size, for every pound I lost I gained two back over the years.  I went as far as having surgery a decade ago, which accomplished nothing except utterly destroying my metabolism and my esophagus, made me suicidally depressed, and cost me and my parents an obscene amount of money. 

I've mentioned it here once before, and I'll be happy to elaborate for anybody who has questions on the topic, but basically I walked away from the idea that I would ever attempt to lose weight again several years ago.  There are a lot of reasons for that.  A lot of science to back up my reasoning, and a lot of sanity followed.  Dieting makes you completely obsessed with food.  We've all done it, or know somebody who has done it, or otherwise intelligent people who are unable to have small talk (especially with women) that doesn't include some mention of diet or morality about food ("I was soooo bad today...").

Being that obsessed didn't make me thin.  It made me boring.  It made me crazy.  It made me keep insane diaries of everything I ate and every time I exercised.  It made me push myself too hard just to burn 10 more calories on the treadmill, causing multiple injuries over the years.  And then of course I couldn't exercise because I was injured and I gained anything I'd lost right back. 

Things have been a lot better over the last couple of years.  When I swore off dieting, I committed to eating a wide variety of healthy foods and exercising regularly.  Doesn't seem that different, but it really is.  As screwed up as my knee has been, this has been the longest stretch I've ever gone without an exercise related injury.  Since I don't weigh myself, I haven't been depressed about plateaus.  It is what it is.  I got stronger.  I found a great trainer who I can't wait to get back to when all this is over. I worked out regularly for two solid years, and I hope to get back to it in a more limited way in the coming weeks, now that all the testing is over and I have some time again and a predictable schedule.

But food is a problem.  Forcing myself back into that mindset - not the weight loss fantasy - but having to think about what I'm eating daily in terms of something more than "try to eat at least four servings of produce and not too many carbs" is a problem.

Those of you not on FB have missed some discussions about juicers and blenders and how I'm going to get all the nutrients I need.  It has triggered the old obsessive thinking again.  I have realized that I need to start keeping a food diary, and a much more detailed one than I used to.  I need to write down what's going in and when, and what's coming back out and when, and how I feel physically from hour to hour.  I need to track my medications and supplements.  I can't trust myself to keep it all in my head anymore.

I know I have to do that to stay as healthy as possible through this.  I get that intellectually.  Emotionally this actually makes me more upset than the cancer does.  It scares me more.  I don't want to be *that* person again.  With *those* obsessions.  The great irony of all of it is that of course a year from now I will likely weigh anywhere from 30 to 100 pounds less than I do now.  I haven't lost anything on chemo yet, but that's likely because the steroids stimulate appetite and I'm done with them for now.  Lowered appetite and more illness are coming as the toxicity builds in my body.  And then of course they are going to chop a couple of significant bits off of me, and reconfigure those bits using other parts of me.  I don't know where I'm going with this, except to say that it is hard and painful and there is a big black hole and I don't want to fall into it.

On the bright side, I realized that Stanford offers free nutrition counseling within the oncology department, and I requested an appointment for a consult.  I'm hoping they can get me in on Tuesday and help sort through my questions.  Imagine that, an actual professional who might be able to help me navigate the marketing bullshit around these machines and suggest alternatives?  Sometimes I am dense.  I'm hoping they'll be able to see me when I'm there on Tuesday.

And I'll start writing it all down tomorrow.  Not calories, but foods and times and whether or not I feel sick throughout the day.   Maybe I'll buy a new notebook for that, so I can ceremonially burn the thing when I'm done with this.    I hope the nutritionist appreciates the effort. 

rumaki and bacon wrapped figs with goat cheese, the ultimate cancer diet?

Awake a bit later than usual because I'm still coming off the steroids.  Still had the runs all day and so stayed close to home and  took a long long nap, but basically OK. Today was a day of tiredness, and maybe 3/4 of the work I needed to do, but not misery. 

Lessons learned on taking meds on time - alarms set on my phone to remind me.  In the first 48 hours if I wait to feel like I need more Zofran or Ativan, it's too late.  I expect that window to extend to 72 hours in the coming weeks as the toxicity builds in my body. 

Looking into nutritional stuff tonight.  There is so much woo bullshit out there on cancer and nutrition that it's impossible to wade through.  I'm already tired.  I don't need to chase down 15 competing theories about why blueberries are perfect for chemo and that they are going to kill me quick if I eat just one. 

The advice comes from all corners of the world, and is so general, and so contradictory, and so just-not scientific that I've been having a hard time doing research that way. 

So I turned it around tonight and looked at my bloodwork (which I have a major trended record of now over the past couple of months) and at what nutrients I either need more of to support chemo according to the doctors and documentation at NIH, and what nutrients the chemo causes to deplete in the body, either by using them up or blocking absorption.  And I can see it happening, I dropped below the bottom line for several or the first time this week . 

According to all of those sources I need to eat for magneisum, iron, calcium, and potassium (because they are needed for physical and mental health, and chemo depletes them, possibly eventually to the point where I'll get them via IV), but I can't do real supplements because of the study (it's a rule, and if you can't tell, I think most supplements are bullshit anyway in the western diet, even a really crappy western diet)  and most supplements just give you expensive pee anyway without the other ingredients in food to help you absorb them. 

My biggest problem is that I can't eat leafy greens, at all, unless they are pureed into soup, juice, or smoothies.  About 40% of the time even just iceberg lettuce does it to me. 

On my best days in the last 10 years your basic salad, kale, spinach dish would go right through me.  I just hoped I was getting some of the nutrients during the hour or two that it spent in my gut. Can't do it at all now, and things like nuts (a favorite protein snack) are off limits too.  Chemo causes you to basically shed all the fast-turnover cells in your body and nothing moves faster than your gut.  Too much fiber or structure in food during is going to start tearing me apart internally, literally.  I'm not eating anything harder than a table cracker right now and making sure to chew it thoroughly. 

I'm looking into juicing - I guess I fail as a California Liberal for never having a green juice in my life (and a fruity one only as a special treat or last resort) Mostly you can blame bananas.  Juicers like to put bananas in everything and I absolutely refuse to eat them.  So I figure this week I'll go in to a couple of juice places a couple of times and see if I can find flavor combos that work for me, and if I like it I'll invest in a real juicer.  If I don't really like it, there's no way in hell I'll ever actually do it at all at home. 

So I did a bunch of reading on the NIH sites and tried to figure out where I can shore myself up, either on top of, or instead of juicing.   The other thing is that as I'm able to eat less I'm going to need to get these things in as extreme concentrations as possible, just to make sure I get it in. 

Iron's a big one - I don't eat a lot of red meat and got very very out of the habit with the band.  I've been trying to order it more in restaurants now, and have it a few times a week at home (sirloin strogonoff for dinner tomorrow, FTW!).  According to the NIH the greatest source of iron isn't beef per ounce, it's chicken liver.  Can I start requesting rumaki for an appetizer every night as part of my treatment?  Actually, I'm pretty sure I've never had chicken liver outside of rumaki or pate.  Bob has convinced me that southern fried chicken livers are a thing and I should have them.  Experiments begin tomorrow. 

Magnesium I can get through nut butters - a run through the food processor and they should be perfectly safe for me one the sharp corners are gone.  I might follow Bob's lead and stir it into oatmeal in the morning.  Beans, chocolate, and dairy are also good sources already in my diet, although, surprisingly, it's the chocolate that I eat the least regularly. 

Calcium is easy because I like dairy.  You will pry it out of my cold, dead hands.  Morning coffee is a flat white with a full 8 ounces of milk and a doubleshot.  An hour later I have half a cup of yogurt with some sort of fruit in it.  Cheese is not in any way a requirement at every meal, but it does seem to show up in small doses all over the place. 

And then there is potassium, which is the domain of the banana.  WHY WHY WHY WHY!  These fruits are the bane of my existence.  No one will be happier than me when they finally go extinct. 

I actually saw one of the nutritionists at Stanford carrying bananas in her belt like you might a gun in a holster. WHY!  Anyway, this looks easy too - dried apricots are a good source and they are already a regular snack, also dried figs and dairy.  MORE DAIRY.   

And now that figs are in season, maybe I'll stuff them with goat cheese, wrap them in bacon, and serve them with rumaki.  The ultimate cancer diet? 

better than last week, but not great

I posted a little after 2am that I expected the stomach cramps to come, and they did.  from about 4-7am with a massive bout of the runs at the end of it that's still happening now, six hours later.  I puked once around 5:30, took the zofran a smidge early after that hapened, and went back to bed.

I haven't felt like I could eat anything yet today, but I'm going to start on that now.  Soup with extra cheese and glutamine, I think, and then back down for a nap,  I hope.   Been doing work stuff for the last three hours solid, and I can put in the rest of my time later, or take a sick day if I need it. 

week 3 begins

So, today was really boring and that is a GOOD THING.   I just had my third infusion of Paclitaxel and LCL161 today.  It's going much much better this time.  I changed two major variables and have also been using Protonix daily since last Tuesday to control the reflux. 

Last week I went in hungry.  I have to take the test meds (six pills, orally) at least two hours into a four hour window (at least) without food, and exactly five minutes after they finish the Taxol infusion.  I didn't understand the timing of the testing, waiting for results from the lab, pre-meds, and the drug itself, so I snacked thinking I'd be eating sooner, and ended up with nothing but a protein bar from noon to 8pm.  That was a bad idea, I was starving and I ate really fast, and probably 20% more than I would have on a regular night.  I also didn't take an Ativan when I got home, relying only on the Zofran. 

This time I took a big roast beef sandwich with me, and timed it so I finished at 2 hours.  (I ended up finishing late, but still only had a five hour gap between meals, and I took an Ativan along with my first meal after it.  (100% within prescription limits of one every four hours.)  I think having the protein in first really helped for a lot of reasons, and the extra Ativan has made me a bit dopey, but I'm otherwise fine.  I still expect some sort of stomach cramping in the night, but I'll set an alarm to take the next Zofran exactly on time for the next 24 hours, and the Ativan for the next 12.  

Hair is starting to give way now, I had my first experience of a larger than expected amount in my hand while in the shower last night.  When I pluck my mustache it doesn't hurt.  I do have acne under it on my scalp, as expected.  I'm treating it with tea trea oil for now, and expect Dr. M will have a prescription cream for it in the next 24 hours for me.  I think I'll have Bob clip me back down to 1/4 inch in the morning.  It's late, and I'm dopey enough that I might actually sleep for a bit tonight. 

Still mostly good.

I went back to physical therapy for my knee again today - had a couple of weeks off due to scheduling snafus and my therapist being out sick last week.  While I knew it to be a true fact that even though my knee has been feeling fine because of the steroids, that did not in fact make it actually better.  Saw proof of that today. 

I've been slacking on the stretching and exercises because it didn't hurt, and I really need to not do that.  I'm not beating myself up over it, there are only so many things I can handle at a time, but it also seems kind of dumb to not take advantage of this little moment where I could push for improvement and it wouldn't cost me much energy or pain-wise. 

Unless I have a bad reaction to the taxol (read - an allergy-type reaction like a major rash or anaphylaxis) next week, that will be the end of the steroids for me.  I don't think I'll be sorry to see them go.  The crazy energy boost the first week was fun.  Not being able to sleep this week when I was so sick and so physically wrecked was not.  The real tradeoff is that while it eases inflammation everywhere, it also weakens muscle across the board, so if I need to choose, at this point maintaining lean muscle mass is the absolute right choice.  Some of the drugs I'm on will damage my heart - it's not an if-thing, it's a how-much-thing.  I can live another fifty years with a busted knee.  Despite my size, my heart is perfectly healthy right now, I'd like to keep it that way as long as possible. 

In other news, the dreaded rash seems to have shown up in the last couple of days.  This is the other major side effect of LCL161 that I was warned about.  It's purely cosmetic - but everyone who takes it gets cystic acne on the scalp.  I haven't actually started to shed hair yet, but I can feel the acne starting on my temples and creeping up to the crown of my head.  They've got some steroid creams (yay, more steroids) that should help keep it under control, but it just feels kind of gross and tender.  And because I am human I cannot stop touching it.  Which is making it worse.  Blech.  That's really minor though.

Overall, feeling good going into the weekend.  I had a pretty productive day work-wise, got into PT, went to DMV to pick my disability placard (which I don't need now, but am happy to have for when I do), and then we had a friend over for dinner.  I have exactly two goals for the weekend - 1) get shopping and basic meal prep for Monday and Tuesday done and 2) find my wallet.  It's been missing for a couple of weeks now, and it is in my office or in the kitchen.  It has to be. 

Better day today.

Feeling human again.  The Protonix finally kicked in around 1am this morning, I woke up to a wave of nausea around 4am and took a Zofran and went right back to sleep. 

No other drugs today.  Got a ton of work done, got a nice nap in this afternoon, and then did even more work catch up tonight while Bob's off at another football meeting.  I just tracked my hours and realized that even though I took yesterday off mostly as a sick day, I'm ahead of the game hours-wise.  Whooops.  (I track my hours even though I work from home, helps me make sure I'm not working too much or too little.)  So, probably too much today, but still feels good to have something to do and feel productive. 

If last week can predict the rest of this week, I'll be tired tomorrow when I lose the last edge of the steroids, but should be feeling good through the weekend. 

It got worse before it got better. Yes, even more TMI.

If it isn't clear now, I'm really going to let this be a warts-and-all blog of my experiences, emotional and physical.  Writing this out is therapy for me.  I hope it's educational or helpful or entertaining or something for you.  My experience with cancer and these drugs is certainly unique in some ways, and pretty universal in others, I expect.  

So the nausea settled back down and the shits eventually stopped.  I took another Ativan and tried to go to bed.  That's when the reflux hit.  I had major problems around reflux for the first year or two after I had my band removed, and that had finally resolved itself a little over a year ago.  For a while now I've taken a tums or something once or twice a week if I ate something super-rich too late in the evening, but not had any other issues around it. 

Last night it was back, and was the worst episode I've ever had.  Tums wouldn't calm it down.  Chewing gum wouldn't calm it down.  It's been so long that I don't have any of the other OTC stuff any longer, and I wouldn't have taken it without express instructions from the doc in the first place - I'm on so much crap now that bad interactions are bound to happen if I'm not super careful. 

So it was after midnight and I was in this weird super bleary place where I was still amped up on the steroids, trying to temper that with Ativan, physically exhausted by the shits and dry heaves, and now getting reflux.  I hauled my old wedge pillow and that didn't help either.  So I start to fall asleep, wave of reflux hits, I start choking and wake myself back up, and then wake Bob up of course.  Lather, rinse, repeat.  At some point all that coughing turned into stress incontinence.  So yes, in the course of about 8 hours I puked in a cat box, pissed my pants, and got absolutely no sleep at all.  I gave up and got up around 5.

Somehow my 7am meeting went way better than expected, and we were on the road back down to Stanford by 7:45 for my biopsy (So this is now three sessions of core needle biopsies for a total of 8 wide gauge cores taken, and then two needle aspirated lymph node biopsies, for those who like to keep track.)  When I checked in I gave the nurse the rundown on what happened last night and she got me all checked in and then called over to Mollick's office on my behalf while I did the biopsy.

His nurse called before the biopsy was done, and he called himself 10 minutes later.  So the reflux is one of those more minor side effects of taxol that is massively amplified by the LCL161.  JOY.  He prescribed Protonix which is a time release proton pump inhibitor, and I'll take it daily along with the other giant pile of pills until the study is done (11 weeks to go).  

It seems to hit me later in the day.  I was good until about 6 (and had been taking my Zofran for nausesa) and then it started in again.  Bob picked up the script on his way home from football and I got my first dose about two hours ago.  I think it's kicking in.  Hard to tell.  Haven't been eating much - eating slowly can relieve the symptoms temporarily by forcing the acid back down by peristalsis (which is why chewing gum can help too by generating saliva to swallow - pro tip), but then more food in the stomach can make it worse. 

So now I'm going put on my Depends, take a Tums, a valium, sleep on a wedge, and hope for a better day tomorrow.  

In other news, Bob is being as awesome with all of this as he could possibly be.  I am very lucky.

Guess what! I feel like hell. Serious TMI ahead.

Second infusion today.  I went by myself and was fine.  Got there about 2, had my blood drawn, waited an hour while they did the labs, and then pre-meds and about 90 minutes to get all the taxol in.  I left at 6:30 and had no traffic getting home, which was really nice. 

Because I tolerated it well last time they upped the taxol a bit.   I'm not tolerating it as well this time.  I'm still well within the bounds of normal, but this is exceedingly unpleasant.  So the taxol gives me the shits.  The Zofran (anti-nausea) makes me constipated.  The LCL161 gives me massive cramping right below my diaphragm.  And a little while ago as I was running for the bathroom a massive wave of nausea came over me. It seems to have passed now, but was basically like the worst food poisoning ever - sitting on the toilet and dry heaving into a (clean and empty, thank gawd) cat box.  Note to self: cat box is actually a good bucket.  Large target.  Can't miss.  I'll buy another one to keep empty in the bedroom upstairs.  The cats will be really confused. 

And I'm still amped up on steroids so I can't actually sleep it off.  I think I'm going to try to get some work done until I can take another Zofran at midnight.

Have to get up early for a 7am meeting, walk out the door at 7:30 and drive back down to Stanford for the next biopsy, which means another 48 hours without taking a sports bra off and no showers.  And getting stabbed in the chest again, but that's really becoming the least annoying thing, honestly.

And I look really really butch with my hair cut off.  If I ever decided to switch teams, I'd have no trouble looking the part.  It's really kind of hilarious now that I'm settling into it.  There may be pictures at some point.  I dunno yet.  Ask me after another Ativan.

Vanity

There's no two ways about it, tomorrow is going to suck.  I don't think you can ever give a truly honest assessment of yourself, you see things in photographs that you never notice in a mirror, and vice versa. 

I'm 41 years old.  I'm told I "don't look my age", whatever the hell that actually means.  This is what 41 looks like on me, and I still happily accept the compliment when somebody assumes late 20s.  It happens a lot at work, mostly because of my resume, I think - they hear that I started as a grad student intern in 2005, but don't realize I was 34 at the time.   That makes the math come out wrong. 

I've been told I'm somewhere between pretty and beautiful.  I've been told I'm disgusting and not worth the price of my medical care because I'm so irretrievably, irresponsibly fat.  I've absorbed all of it, tried let the bad shit go and hold on to the good stuff.  To live a reasonably healthy active life and use the body I have to the best of my abilities.  It took 36 years for me to figure out that fighting what my body wants to be isn't worth my sanity or my health.  I've been comfortable with that for a while now, and weirdly I think that makes me more comfortable with the mastectomies and reconstructions to come.  Ovaries?  Mine haven't been working properly for decades.  It's been at least 25 years since my body has resembled anything remotely like what my culture thinks it ought to look like.  Surgery will be painful, and I know I'll lose something emotionally there too, but there's no perfection to be lost here.  There are lots of scars on my body, a few more won't make that big a difference to me now.   

Through all the crap I've dealt with around my size, I've always felt pretty confident about three things - my skin, my teeth, and my hair.   Good genes.  Good conditioner.   Good sunscreen. I really should floss more.  

Tomorrow one of those things is going away, and it's not coming back for a long long time.  I know it's the right choice for me to be proactive and get it done.  That's who I am, it's how I do things.  Control what I can, let the rest go.  I've got great hair, and I've got enough of it that a skilled person can probably make at least two wigs out of it for kids who will make better use of it than I will be able to.  I am happy with this choice. 

But this is hard.  Harder than anything else so far.  Tomorrow night the mirror is going to tell me an entirely different story, and I'm not sure I'm ready to see it.