It's been a very crabby Christmas.

Things have been pretty quiet around here.  We celebrated Christmas with some friends at the Franciscan on Fisherman's Wharf and ate a ton of crab.  It was the right amount of celebrating for me - something special with friends, but not a lot of effort required on my part. 

I went in yesterday for my pre-op pelvic ultrasound that the gyno surgeon wanted.  She wasn't looking for anything in particular, but wanted to get the lay of the land before going in.  To prep for it I was supposed to drink 32 ounces of water been 2:15 and 2:45 to be ready for a 3:15 appointment.  The idea is that a full bladder makes everything else easier to see. 

I couldn't do it.  I took some zofran ahead of time because I was worried about getting sick, and I got about 26 ounce of water in and just couldn't.  I was too full and could feel the water sloshing around.  I couldn't bend over to take my shoes off and undress to put the gown on and had to ask the nurse to do it for me.  That was embarrassing, but necessary.  So my bladder wasn't as full as they wanted, and she wasn't sure about the quality of picture she got, I might have to go do it again.  If I do, I'll start drinking 90 minutes ahead and pace myself a little more, but I really hope this is good enough. 

The first surgery is now confirmed for January 21 and the second is penciled in for March 3, and they expect to confirm that in the next week or two. 

I'm starting to freak out a little bit about it.  I'm not much of a clotheshorse but my habit is to shop for new t-shirts and gym stuff online after the holidays, and I keep having to stop myself because I have no idea what's going to fit, since I have no idea what size or shape I'm going to be.  Great sale on bras!  Not going to need them for a while or maybe ever.  It's just weird.  I'm not particularly sad about the changes coming, but that could change.  I'm nervous about the surgeries and recovery.  I'm scared of the pain more than anything.  I've had three laproscopic abdominal surgeries in the last decade and I remember what recovering from them was like.  Recovering from the oopherectomy half of the surgery in January will be similar, but add the mastectomies to that and I can't quite comprehend it.  And then the flap surgery will be another level altogether.  People do it and I know I'll be fine, but I'd really just like to go to sleep now and wake up in May with it all done. 

Up until the last couple of weeks (with the major exception of the lung biopsy from hell) I haven't really had to deal with pain at all.  I've been uncomfortable,  and I had some stomach cramps the first couple of weeks on taxol before we got my meds straightened out.  Now I hurt.  Bone pain from the neulasta is pretty close to daily, and the tumor site has started hurting as well.  I'm choosing to believe it's a positive thing as the meds duke it out with with the tumor.  The doctor said it's not anything to worry about.  I'm mostly dealing with it by takine Alleve, but have taken a couple of percocets in the last week when it was bad enough I couldn't sleep. 

In happier news, my hair seems to be back and wanting to stick around.  I've got about a quarter inch of fuzz and my eyebrows came back enough that I had to go them waxed last week.  The individual hairs are still really short, but at least I have a template to color in now.  I felt like a clown for the last few weeks when I tried to put makeup on.  I could still lose it again after the last round of chemo, but it's seeming less and less likely. 

I'm not expecting anything to happen between now and the final chemo on January 3, so things will probably be pretty quiet here.  If I don't get back here before then, I hope you all have a happy new year and we will try to do the same.  :)

Good news today.

We left at 9am this morning and just got home a couple of minutes after 6.  I has been a crazy long day of two giant doctor appointments, and then I missed my window for my neulasta shot so I have to go back out and do it tomorrow.  Not a problem, as long as it happens within 72 hours we're good. 

The radiation oncologist was very nice, and basically said that we won't know for sure until we get the pathology back from the mastectomy, which is exactly what I expected.  Basically if the tumor is over five cm (it's never been bigger than three, with all the ups and downs) OR if there's lymph node involvement I'll need radiation.  She was suggesting radiation before reconstruction, if I need it.  My sister didn't, and I'm hoping to follow her path.  I am worried about the month off between chemo though, if it was going to run wild, that was it's opportunity.   

I realized I can't remember if explained a sentinel node biopsy, so I'll do that here.  When they do a lumpectomy or a mastectomy, before they start cutting they will inject some radioactive and colored dye around the tumor site, then they look for the first lymph nodes to pick it up, and have them biopsied right there while I'm on the table.  If they are clear, then my lymph nodes are predictably good across the board.  If they are cancerous, they start climbing the chain a few nodes to see if it's still contained within the near part of the system.  If they can get to a clean node, we're still good.  If they can't, then I'll need radiation. 

Insert random new side effect here.  I went to the restroom on the way out of the oncologist's office and happened to glance in mirror.  I looked like I had smeared lipstick all over my face and up the right side of my nose almost to my eye.  I wasn't wearing lipstick.  Adriamyacin can do that.  And it did.  Fortunately I had some good makeup in my bag and was able to tone it down a bit, it seems to mostly be gone now and I just look really flushed. 

Anyway, we were there until 11:30 and didn't get out in time to go back to the oncologist's office to get my neulasta shot before the office closes for lunch, So we ended up heading to UCSF.  So we got lunch and were there about an hour early since we were super lucky with parking.  And then we waited, and waited, and waited.  This was the meeting where there was an intern taking notes and going over the questions I had asked ahead of time.  I liked the doc, he's a little cocky but comes highly recommended across the board.  We talked about the other surgeon's concerns about my weight, and the fact that one of them referred me anyway because she thought I'd be a good candidate because of how I carry it.  He did an examination and decided that he thinks I'm good, my skin barely scars and I don't have a history of blood clots.  So, I get the reconstruction I wanted!  YAYYAYYAYYAYYY.  No silicone for me.  No muscles will be moved around, just shifting fat, skin, and blood supplies. 

He also said he'd prefer to do radiation after reconstruction if it's necessary, and said he's got a doc there he'd like me to talk to about it.  

I'm very happy.  I'm looking forward to this heinously painful surgery where they will cut me in half and put me back together. 

So here is the tentative schedule, as of today.  Mastectomy/Oopherectomy penciled in for Janaury 21.  The gyno surgeon's scheduler said her calendar is clear for that day and we just need the surgeon herself to rubber stamp it.  If not the 21st, it will be later that week.

Diep flap reconstruction scheduled for early March, I should have a real date for that by the end of the week. 

For both surgeries I expect to be in the hospital for at least four days to recover. When I get home they said the only personal care I'll need is help with the drains (I'll probably have four for the mastectomy, six for the diep), which means Bob will have to drain the bulbs and measure my output before flushing the contents down the toilet. 

If I do need radiation, we'll start that about six weeks after the diep flap. 

We will definitely be needing lots of help with meal deliveries and maybe some midweek housecleaning/laundry especially with the second surgery.  Bob's out of school until April 1, so he'll be here and able to care for me for the first one.  During the second one (we're hoping) he'll be enrolled in the Electrical Engineering/CS program at Cal State East Bay (about 20 minutes from our house) and taking a full load.  I'll post the actual dates for surgery as soon as I have them. 

I am very happy, and very tired, and on a ton of Zofran and Compazine, so I'm feeling OK, just really tired.  Paul's on his way over with burritos from our favorite taqueria for dinner, and then I expect to be in bed around 9. 

AC Round 3

It's only been a few hours, I haven't puked, but I feel like hell.  Infusion went normally, and I dozed off a bit for the last hour of it.  We came home and planted ourselves on the couch and watched a bunch of fluff on TV (if you must know: Arrow, Continuum, White Collar, BBC Top Gear).  Random trivia about our household - we don't have cable, just a broadband connection and a Mac mini and AppleTV  hooked up to a TV.  Fluff recommendations are welcome, especially if we can get them via Netflix, Hulu, or iTunes! That's pretty much what my brain can handle these days.  We don't watch any "reality" shows because they make my teeth hurt. 

A friend brought us dinner and I was able to eat a Caesar salad, some chicken and a slice of bread after I took a Zofran and let it sit for a while.  Now I'm not so much nauseated, just weird and wrong.  Nothing feels right.  I'm twitchy, I'm tired, my brain starts zipping along at a million miles an hour if I close my eyes for a second (steroids in the IV!).  The bone pain in my pelvis from the Neulasta never really left from the last injection and I get a fresh injection tomorrow.  My legs and knees just feel weak, like I climbed a mountain and forgot to eat to replenish my energy.  The side effects of one or two of the meds I'm on now (honestly, I can't remember which at the moment) include increased risk for ACL and tendon tears in the legs.  So between that, the weak feeling, and the neuropathy in my feet, I'm not doing a whole lot of walking. 

I've now been off the Prednisone for 12 days, and they gave me a low dose of decadron in the infusions mix this time, but we're going to see if I can handle it without adding back the major steroids tomorrow.  Since the mix of side effects for AC is totally different from Taxol, there's not a concern of relapsing with any of the issues I had with that, but I'm keeping an eye out just in case, and the oncologist's number with me.  The steroids directly contribute to the muscle weakness which is why I'm not just taking them.  This is one of those times when I have to balance the side effects with the benefits of a treatment.  

Tomorrow's the marathon day of appointments.  The way I feel now, I fully expect to be sleeping in the car while Bob chauffeurs me all around the bay area (Berkeley, Oakland, San Francisco, Alameda, back home to Oakland).  I'm hoping to have a final decision on the plastic surgery and some educated guesses about radiation by tomorrow night. 

Still no schedule for the mastectomy/oopherectomy.  I called the mastectomy scheduler and she said the oopherectomy scheduler hadn't returned her calls (it's been three weeks now), so I called the oopherectomy scheduler and left a message today.  I'll try harassing from that end for a bit and see if it helps.  It is doubly confusing since the scheduler for each office is named Kim. 

That's it for now.  I'm going to take an Ativan with ginger ale, crawl into bed and hope for the best.  

Long time, no blog.

It has been brought to my attention that I haven't posted anything in a week, and somebody was worried it might be because I've been really sick.  Sorry if anybody got that impression.  I've just been extraordinarily boring. 

It's been pretty constant, low level ick with increasing tiredness.  I'm handling the bone pain from the Neulasta with Alleve and it's been a few days since I needed to take anything for nausea.  Mostly, I'm just tired.  I expect that this is the kind of tired I was supposed to be at the end of the taxol treatment, instead of the half dead that I was.  I'm definitely not healthy, but I'm not a giant bucket of misery either.  I'm reading a bunch, mostly stuff I've read before.  I don't really have the energy for anything new or deep right now. 

I've been trying to stay in since it's been cold and I definitely don't want to be in crowds of people, but I have been out a few times.  Last Wednesday I had dinner with my friends from work - it was the team holiday dinner and they made a point to invite me, which I greatly appreciated and I had a good time. 

Saturday I did my usual breakfast and shopping routine, but was pretty well exhausted by the time I got home at 10:30 in the morning.  I've been doing all the shopping (because I want to), but I'll start handing that off to Bob for the next few weeks.  He's done with finals and football now, and won't be back in school again until April 1, so he's got plenty of free time. 

Tonight we went out to dinner with Paul and saw Frozen.  It's become a habit to do movies on Monday nights because the theaters are relatively empty.  I enjoyed it. 

Tomorrow I've got bloodwork in the morning and then some errands to run.  Wednesday will be round three of AC, and Thursday is going to be crazypants.  We're meeting with the radiation oncologist in the morning to start the conversation about whether or not I'll need radiation.  (I'm really hoping no.)  I expect that the real determination will be based on sentinel node biospies during my mastectomy and maybe another PET scan. 

After that we go back and get my Neulasta shot again.  These things hurt worse than tetanus shots.  I can still feel the ache in my right arm from the first one almost four weeks ago, and I really feel it in my left arm from last time too. 

And then we drive into the city to consult with the final plastic surgeon.  UCSF has this program where they offer an in intern to work with me to develop questions for the doctor and then the intern can sit with us in our consultation and make an audio recording of it.  I said yes, and spent an hour on the phone with Elizabeth this afternoon.  I think we covered everything that's been running around in my head, she's going to type everything up and send it back to me tomorrow, and I can change or add things.  Then she'll pass it to the doctor to read through before he meets me. 

And then we come home and collapse in a heap.  That day would be exhausting if I were perfectly healthy.  Good thing Bob is, and he can do all the driving. 

Mastectomy still isn't scheduled.  I was annoyed when she didn't call back on Friday.  I left another message this morning and didn't hear back (it's been over two weeks now, total) and I'm going to call again first thing tomorrow.  I'm sliding into angry now, and I really don't want to be.  I just want it on the calendar so I can plan the rest of my life around it.

In tumor news, it started shrinking again, finally.  It had basically blown back up to the size it was when I started at Stanford.  Friday it felt really tender and then softened up a bit.  It's still there, but it's definitely smaller again. 

That's all the news from here. 

Weekend Update

This time has definitely been easier.  I'm sleepier faster, and taking a lot more meds, but I know what to expect and how to respond to it now, which is a huge part of the battle. 

Jen was here this weekend and we managed a couple of trips out of the house, followed by long naps for me.  We went out and I spent way too much money on a new recliner for me.  It'll be where I sleep when I'm in recovery and where I sit to work and screw around on the internets for the foreseeable future.  We got this one in a distressed brown leather with a little bit of red in it.  I think it will look nice with our existing furniture and my moroccan rugs. 

We also managed to get me out to breakfast and shopping yesterday, but I was DONE after that, and ended up spending the rest of the day watching too much television and napping. 

This week I have  bunch of phone calls to make but no doctor stuff scheduled, and I plan to stick pretty close to home.  Bob will be here for most of it too - his football season is done now and he's got to study for finals this week. 

AC, Round Two

We had a bit of a late start today.  LabCorp apparently decided they didn't need to actually do the CBC  on the blood sample I left with them yesterday.  So we had to redo that in the office.  Other than that, everything went fine. 

I told the nurse about the pain I had last week on Wednesday and Thursday that I was worried might be my kidneys and she said that it was the neulasta working its magic in my pelvis.  And apparently that's a good thing because it meant all my bloodwork looked really good.  So yay, and this time I know to take some pain meds for it and call it a day. 

There seems to have been a bit of a snafu with getting my appointment set with the DIEP flap guy at UCSF tomorrow (long dumb story, partially my fault for procrastinating about asking the other doc for my records, which aren't there yet).  I'm actually totally fine with that.  Now that I've decided that I'm not going to attempt to have any reconstruction done in the same surgery as the mastectomy, I don't need to make a decision for a while.  I'd like to do it soon, but it doesn't have to be tomorrow.  And Bob couldn't come with me tomorrow because of school, so if we can reschedule for a time when he's on winter break, I'll be perfectly happy. 

Tomorrow is my last day on prednisone and then I'll take the antibiotics for another 48 hours, and then I'm done with the pulmonary nonsense officially.  I've been on daily antibiotics since October 21.  My digestive tract is so borked between that and the chemo.  It's not been that bad because the other major side effect of the anti-nausea meds is constipation.  Mix that with the antibiotic runs and it's not really terrible, but not anything close to normal (for me) either.  I've got a nice big bottle of probiotics that I'll start taking on Sunday morning. 

I need to do one more follow up with them in the next couple of week so they can order the end of oxygen support - it's not costing me anything, but having the equipment here is treated like a prescription, so they need paperwork from the doc saying I'm clear before they come to pick it up.

My energy levels were a bit better than I was expecting the last couple of days, but I'm definitely feeling the infusion tonight, and the anti-nausea stuff makes you sleepy too.  I'm covered from the IV meds from today through tonight at least.  I started feeling it last time in the late afternoon on Thursday, so I'll take a zofran with lunch tomorrow and just keep taking them every 8 hours for the next couple of days, which should get me through the worst of it.  

That's about it for the cancer update.  As I type this, our friend Paul has come over and is helping Bob carry the pieces of the murphy bed that he's been building up from the garage to my office, and now they are trying to put it together and get it installed so Jen can sleep on it tomorrow.  It won't be finished - literally it needs paint and some trim pieces still, but it will be operational, and that is good enough for now. 

My part in this project has been minor, but it has forced me to clean out my office entirely so they can install it.  I've been working on that slowly but surely over the last week or so.  Now my working chair is in the dining room - it's a big futon style armchair and ottoman.  Ugly as sin, but is comfortable and cat proof.  This is where I confess to the world that I hate working at a desk, so I sit in this chair with my feet up, put my laptop on top of an old hospital bed table so it's at the right height for my neck, and type on a keyboard in my lap.  Ergonomically it's just about perfect.    But it's a really ugly set up.  And now it's in the dining room for a few days. 

It's another crazy week of medical stuff!

I need to rewind a bit since I forgot to post on Wednesday, after I saw the gyno surgeon.  She's on board with the remove-everything-in-one-go plan and is going to work on scheduling the surgery this week with Dr. C, and we're aiming to do it in the third or fourth week of January.  She wants me to do a pelvic ultrasound at some point in the next month just so she has a preview of what we're getting into.  Because of the cancer they do this "washing" thing while they're in there, look for other signs of tumors, growths, random weirdness.  I've got weirdness galore because of 20 years of Polcystic Ovarian Syndrome (PCOS).  The pelvic ultrasound isn't painful at all, but is really uncomfortable while they do it, because they make you drink a ton of water and then wait an hour and you need to pee BADLY the entire time, and they're pressing on your abdomen while you're trying not to let go.  It's been a few years since I had one, and the last time I hadn't recently been suffering from stress incontinence.  In the larger scheme of things, this is extremely small potatoes, but I'm not looking forward to it. 

The days are really blurring together for me now, so my holiday weekend was pretty much like any other day except there was excellent turkey and stuffing with friends one night.   Friday we stayed home.  Saturday I was feeling pretty good so I went out for breakfast and grocery shopping.   Last night we had a friend over for dinner and watched the Doctor Who anniversary thing. 

It was nice to have a relatively slow week, because this week is busy again.  This morning I had to go stand in line at the DMV to renew my disabled parking placard.  Tomorrow I have to go do my bloodwork.  Wednesday is infusion day.  Thursday I'm supposed to be going to UCSF to meet with the surgeon that does DIEP flaps (they haven't confirmed yet) and then back to my oncologist for neulasta.  Friday I get to sleep. 

Symptoms have been funny - fairly mild but not what I expected.  I never got the fabled red pee, although it does smell noticeably strange.  The nausea has been coming and going but I only dry heaved once.  I'm now carrying both zofran and compazine with me at all times.  I'll be taking them at regular intervals for the first 72 hours post infusion, and then using them as I need them throughout the week.  This week things that set me off were making cranberry sauce (even though it smelled good), and chinese food we had last night.  It's not bad, it's like that first wave of seasickness so far.  I feel it, I sit down with a ginger ale and take a pill, and its usually gone within 30 minutes or so.  My general appetite seems to be fine, and I no longer have problems with greens (yay salad!).

I'm finding that this whole process is turning me into a hypochondriac.   I now question every random weird feeling in my body.  Last week on Wednesday and Thursday I had something going on in my lower back.  So is it back pain from sitting on my ass all day, every day, for months now with no real exercise?  Or have I done something horrible to my kidneys?  I don't know.  It's fine now.  I'll mention it to the doc on Wednesday when I get my infusion.  The thing is that I can't really tell when I'm being unreasonable - I thought the level of exhaustion I was feeling at the end of the taxol was to be expected, so I didn't complain and wouldn't have gone to the E.R. about it.   So now I'm a little paranoid.  But I'm right to be paranoid.  But I don't really know about which things. 

Something that is amusing me, but also a little annoying - the month off between taxol and AC gave my hair follicles enough time to wake up and grow a little bit.  My scalp looks darker and feels kind of velvety.  (Bob cannot stop petting it, and it's driving me bonkers.)  But it will probably all fall out again starting next week.  In the mean time, My eyebrows and lashes stayed put for most of the taxol run, but then started falling out a couple of weeks ago.  In the last couple of days what was left seems to have spontaneously decided to jump out of my face.  All afternoon for the last several days I've had the sensation of bugs crawling around on my cheeks, and it's more eyebrows gone.