Monday already?

It'll be a week tomorrow.  I feel like I'm drowning.  Mostly just trying to get through thursday, when I have a follow up appointment with the surgeon and if it goes well she'll remove my drains and I'll be cleared to take a shower again.  At this point it wouldn't matter if I could take a shower, I don't feel like I want one.  I'm eating a couple times a day because I know I need to, but I have no appetite at all. 

I slept close to twenty hours on Saturday and Sunday.  I suspect that was to make up for the rest I didn't get at the hospital.  Today I was awake for several hours and got caught up on the random stuff I missed on the internets in the last week. 

I don't know what happens tomorrow.  I certainly don't have the attention span to read a book.  A day of TV?  Probably.  I can't tell if I'd do better with more pain meds right now or less - feeling dopey is making me depressed, taking less drugs and feeling more pain is making me depressed.  Looking in the mirror is making me depressed.  See a theme here?  Thursday.  Thursday things should be better. 

Physically, I look about like I expected to.  I've got three incisions across my abdomen - two small ones and one larger one where they pulled out my ovaries and fallopian tubes.  The incisions themselves don't particularly hurt.  I feel like I'm having the worst menstrual cramps of my life. 

My chest is a disaster zone.  There are two incisions where my breasts used to be, with dressings that the surgeon will remove/replace on Thursday.  There are also incisions in my armpits, with drains coming out of them.  If I let them hang free they drop to my waist.  They look like silicone hand grenades. We dump the contents out of them twice a day and track what's there.  When you dump them you give them a final squeeze before sealing them up again - the vacuum pulls the fluid out of the body.  My left side is producing more stuff than my right, I had a bigger bruise and more bleeding out on that side and it's definitely healing slower (that's also the side where the tumor was and where they did the lymph node dissection).  The drains are pinned to the inside of my shirt so they don't swing around so much and I don't accidentally roll over onto them when I sleep.  Because of the bruising I'm bound up with ace bandages to keep the pressure on and try to move more fluid out.  None of this is comfortable.  I feel bruised and sharp burning pain where the flesh has been removed, and then the skin that is left is chafed by the ace wrap.  I spend about 20 minutes every morning without the wrap and doing deep breathing exercises. 

I'll rewind and tell you about the hospital roommates from hell.  The first one was very sweet and I feel awful for her.  From her bearing and behavior I would have guessed she's a teenager, maybe 15 or 17 at most.  She's 37.  She didn't tell me any of this, I just picked it up from lying three feet from her for 24 hours and being unable to not hear what was happening (I was actually wearing earplugs the entire time). She's been in the hospital for months with sickle cell anemia.  The first seven or eight years she had it, she went entirely untreated because her mother refused to believe she was sick.  Shockingly, she turned to self medication and has been in and out of rehab and some level of prostitution to support the habit for some number of years.  Her primary meds were for pain, anxiety, and methadone.  I should not know all of this about her.  Why was she so annoying?  She's developed a habit of making constant whimpering/sobbing noises to comfort herself.  She doesn't know she's doing it, but she does it whenever she's not actively talking with someone or asleep.  It was loud enough that I could hear her clearly even though I was doped to the gills and wearing high quality earplugs.  Apparently I was her 7th or 8th roommate.  The second night I was there, a single opened up and they moved her into it so she wouldn't bug other patients so much.  There was a social worker with her for a couple of hours that afternoon, and I think they are trying to get her appropriate psych support.  I hope it works out, because she really was sweet and sharing that room felt like being locked up with a puppy somebody comes in every five minutes to kick around some more. 

They moved her out around 9pm Wednesday night.  I had about three hours of blissful peace (and no earplugs).  Around midnight they moved the second woman in.  She came in via the ER for extreme anemia, she's also diabetic and has hep C (again stuff I shouldn't know, but can't help when it's happening right in front of me).  LOUD talker, with a warbly Marge Simpson voice.  She turned the TV on before she even sat on the bed (despite the "quiet time" signs on the walls, which the nurses wouldn't enforce), complained about all the stinky homeless people in the ER.  She was constantly on the phone, and she wouldn't turn the TV down when she talked to people, just talked over it.  She also kept cranking the heat up to 76 in the room, even though I was roasting.  My nurse would turn it down for me, and leave blanket for her, but she'd throw the blankets off and turn the heat back up.  They set her up for release at 9am on Friday morning.  She didn't actually leave until noon because she wanted to take a shower, which ended up taking a full 90 minutes.  She literally flooded our room and the nurses station, and then she demanded lunch and wouldn't leave until it was brought in to her.  I can't imagine why, the food was shit and she complained about it the rest of the time.  I got up and turned off her TV as soon as she was around the corner to leave, and one of the nurses thanked me for it.  I'm still pissed about it.  I shouldn't have to be a bigger asshole to get basic rules (quiet time) and reasonable temperature in my room. 

They just did a huge layoff and are massively understaffed.  The individual nurses were all very professional and were clearly trying hard, but so overwhelmed that the asshole patients ended up ruling the ward and things that should be delivered on time just weren't - every morning I'd get a lecture about how important pain management was, but then they could never actually deliver my meds on time - they were consistently 30 to 90 minutes late.  And then I'd get a lecture about how I needed to get up and move more, but I couldn't move because I was in so much pain. 

Was I spoiled by Stanford?  Probably.  It'll be interesting to see where UCSF falls when I have my next surgery in March.  For now, Alta Bates is a massive failure as far as I'm concerned. 

Home.

I've been one cranky bitch for the last few days.  They put IVs in both of my hands which made typing impossible, and the way I'm bound up has made breathing hard again.  Thank goodness we kept all the oxygen equipment from October - I wouldn't have been able to come home without it.

More details later, but the surgery went well, the pathology report looks pretty good, but I think I'll need more chemo and Bob thinks I won't, so we'll talk to the oncologist next week.  Lymph nodes are clear and there is no evidence that it has spread, but the 1.8 cm mass was still definitely cancerous.  It doesn't really matter to me at this point, it's just more time. 

The real reason I've been such a basket case is my roommates at the hospital.  Just awful people to be forced to share space with.  I'm glad to be home.  Sleep now.  More later.

 

So...

Surgery went fine yesterday.  Initial pathology came back clean, they will take another look at the material they removed and that report will be back in a week or so.  there was a problem with one of the drains; it was clogged with a blood clot.  It appears to be functioning properly now.  I am in a room now, and the nurse made me get out of bed and into a chair.  I was able to do it, so that's a good thing.

SRB/rwl
not dictated, but read

Today was just a day to get through.

I gave in to TV the last couple of days.  I needed the distraction and figure if there's a time to let myself be depressed and wallow a bit, this is it.  I had breakfast with friends this morning and then spent the afternoon watching a marathon of The Good Wife and trying to do some last minute arranging of things around here.  Bob and I went out for dinner at my favorite local restaurant.  I've been crying off and on all day, whenever I let the distractions drop.  I don't feel like it's any one thing, it's all of it. 

My bag is packed, my clothes are laid out, everything's ready to go.  I just need to get up, get dressed, grab my phone and Kindle and go.  I'm supposed to check in at the surgical service at 6:30 am, they'll get me changed and start my IVs and stuff, and then I'm off to nuclear medicine for the dye injection for the node biopsy, and then back to surgery prep.  If all goes on time we'll start at 9:30.  I've never had a surgery or other inhouse procedure start on time, so I'm guessing 11ish, but will be happy to be surprised. 

Whole thing should take 4-5 hours, plus another couple of hours in recovery before they park me in a room at the hospital. 

My arms won't be working so great when I'm done, so I'll hand the blog off to Bob for a bit to keep you updated for the next couple of days.   And now I'm going to take some Ativan and head for bed.

A big thank you to everyone who has sent me a note in the last few days.  I haven't had the energy to respond to everyone, but I read everything and truly appreciate it.  

56 hours to go.

We just got back from Calistoga today.  We had a great couple of days at the spa.  I wish I had more energy, but the nausea from the last round of chemo has been gone for at least a week.  My bones are still achy but I can't take any Alleve now because we're so close to surgery, and I don't want to take any opiates because I don't want to do anything to raise my tolerance this close to surgery.  I also like being awake when I can be. 

I'm starting to be a little shakier around the edges.  I'm generally anxious and get frustrated really easily now.  I'm nervous about the test results.  I'm nervous about the surgery.  I'm nervous about the amount of pain I'll be in and for how long. 

I'm definitely thinking more about the mastectomy than losing my ovaries and fallopian tubes.  Parts I've never seen and never worked properly I won't miss.  Hormone replacement therapy is what it is and I'll take some pills to make up for them being gone.  Breasts are a different thing entirely.  It's not like losing a limb.  There's no functionality (that I've ever used) to lose here.  I know intellectually what's going to happen, but I'm completely incapable of wrapping my head around it.  

Maybe not done with chemo after all.

There must be a reason, but I cannot fathom it.  I have had an old Carpenters song stuck in my head all day.  It's not the kind of thing you hear in muzak mixes anymore, I have no idea what triggered it.  Here you go, and I'm sorry.  I have no idea why that one especially.  This one was better.

Today we went back to the oncologist for a followup.  My progress is good and the way I'm feeling is exactly on target.  She wants to see me again one more time after the mastectomy pathology is back.  If there's any tumor left (I can still feel the lump, but it could just be scar tissue at this point), she wants me to do a course of carboplatin ASAP. 

There's this big oncology thing every December in San Antonio and apparently this was (finally) the year for triple negative studies, and they had a massive one come back showing definitively that carboplatin prevents tumor spread in triple negative patients, so if there's any cancer left, she wants me to do it after the mastectomy.  So, yay, I guess?  It's nice to know they've got something that can help, but I'm really hoping I don't need it.  Doing it would also delay reconstruction.  So now I have two things to be nervous about with that pathology report. 

This is the last one, I promise.  

Chemo kicked my ass.

I started writing something last night, but it was mostly whiny and pointless.  As it's supposed to be, this weekend has been the worst post-chemo few days.  I only left the house once this weekend, and was pretty much in bed the rest of the time.  I had to skip my book club last night because I just felt so crappy.  This morning I got up and came downstairs mostly because I couldn't stand to be in the bedroom for a minute longer.  I expect I'll last a few hours before I need a nap again.  Tired of being tired.  I think there's something about the end being in sight that makes it worse, like that last day on a great vacation when you just want to be home again and then your vacation isn't fun anymore.  Not that any of this has been fun, but my patience has run out along with my energy.

Smells have been setting off my nausea like crazy for the last couple of days.  The most frustrating thing is that it's stuff I like - Thai red curry, pecan pie ice cream, coffee, garlic.  Ack. I just took another compazine.    I've probably got about another week of this before things start getting easier. 

The other thing is I keep expecting to feel something more than I'm feeling.  Like I should be more upset than I am, more stressed than I am, more depressed than I am, more...something.  I guess that's good?  Maybe I'm just too tired and sore to be stressed?  I don't know. 

Still feeling whiny and pointless.  Tomorrow I do need to leave the house for a followup with the oncologist.  I don't know if this will be the last time I see her or not. 

Final chemo day.

It was pretty uneventful.  I feel like crap but it's inline with what to expect - I'm a little worse off than I was last time, and I'm not over the last neulasta shot, but I get a fresh one tomorrow.  I'll be living on Alleve and anti-nausea meds for the next couple of weeks, but otherwise I should be OK.  My main thing that I failed at last time was staying hydrated.  I let myself get too dehydrated and the residual drugs in my system irritated my bladder to the point of bleeding a little bit.  Not a big deal according to the oncologist as long as I stay more hydrated this time.  Funny what isn't a big deal anymore.  I started going through my day with setting timers to go off every fifteen minutes to remind me to drink when I'm not thirsty since I can't drink when I'm feeling nauseated, which is how I got to bloody pee last week.  I really don't want to go there again. 

Tonight we're watching Top Gear and then I'm going to bed.  I've now got a followup scheduled with the oncologist for 1/7 and my pre-op day at the hospital on 1/14.  In more fun appointments I'm meeting with a florist/wedding planner who happens to be a blast from my personal, deep, dark, internet past on Saturday.  What serendipity to run into her after 10 years just when I need a florist and help planning a wedding.  Must be meant to be or something.  

Happy New Year!

As expected, this week was pretty uneventful.  Last night we drove up to Santa Rosa to spend the evening with friends and stayed overnight.  We ended up chatting all morning and into the afternoon and didn't get home until around 4:30.  We had a great time. 

Tomorrow is my last chemo.  Neulasta on Friday. Pre-op appointment at Alta Bates on January 14.  Surgery January 21. 

 I'll be spending a few days at a spa in Calistoga with my family the week before surgery.  I'm really looking forward to it.  Other than that, the next two weeks are about prepping to be unable to do much for the next several months.  Things like getting set up to move my skincare stuff to the bathroom on the kitchen level of the house, figuring out which clothes to bring downstairs.  A big purge on crap in my office.  I've got drawers full of tech stuff and books that are either obsolete, or still good for whatever they are used for, but I haven't used them in years.  Voice recorders, snowball microphone, extra cables for phones I no longer use, a bizillion thumb drives from conferences that seem to reproduce when I'm not looking.  Business cards for jobs or titles I no longer hold. 

There are two boxes of crap in our master bath that have been sitting on the platform by the bath tub since we moved.  It's been 18 months, it's time to chuck that stuff since I clearly haven't needed any of it.  I was playing around with my makeup a few nights ago and realized that my favorite eyeshadow (and this will tell you how often I actually wear makeup) was purchased when I was in college.  In the absolute best case scenario it is 20 years old.  Probably 22.  A bunch of that stuff has got to go.  

The other big one is nailing down stuff for the wedding party in June.  Bob's got his list of stuff to do, and I've got mine.  Invitations (electronic mostly) will be coming soon. 

I did end up doing some clothes shopping after all - for soft, button down shirts since I won't be able to raise my arms over my head.  I picked up a few on clearance a few days ago.  All of my button down shirts are of the really expensive, custom tailored type (which I'll have to have tailored again since they won't fit right post reconstruction) and I have a couple of zip front hoodies, but I'm pretty sure I won't want zippers rubbing on incisions.  So flannels and button front pajama tops it is. 

I am thrilled to be done with chemo.  Tomorrow and Friday are going to suck mightily, but it will be the last one and for that I am excited.