words words words

I've got too many words and have had no clue how to put them in the right order for the last few weeks. 

Surgery is scheduled for 7:30 Monday morning and I am terrified.  I've done the best that I can manage to get into shape for it.  My bloodwork looks good.  I'm a lot stronger than I was five months ago (but nowhere near what I was two years ago).

I'm scared that something will go wrong again.  I'm scared that I'll hate my new body as much as I hate the current iteration (it's about the scars and the weakness and the mutilation, not about the weight).   A lot of women who get reconstruction get something close to their original shape, profile, clothing size back.  That's not going to happen for me.  My proportions are changing drastically.  I'll look like a fat frankenbarbie - no nipples, no navel, new scars (although hopefully much neater looking scars than what I have now). 

Random trivia - since they are transplanting tissue including skin from my abdomen to my chest, some of those nerves will stay intact, so anything I feel on my chest will be registered as happening on my stomach for a while.  They say that within six months to a year my brain will remap itself and things should feel like they are in the general vicinity of where they actually are.  I'm kind of looking forward to that process in a weird science experiment way. 

The last six weeks or so have been unbelievably busy.  Our big annual conference at the beginning of October went well.  Bob and I stayed in a hotel in the city for a week.  I came home and studied an insane number of hours to take a professional certification exam (I passed on 10/13).  Then I went to Vegas for another conference.  I still haven't unpacked from that one.  Too tired.  Then I went to Healdsburg last week for a meeting.  I still haven't unpacked from that one either.  Too tired.  And I'm not going to need any of the clothes in either suitcase until sometime in February at the earliest, so maybe they'll just sit until then.  

My last day of work was Wednesday.  Now I'm just trying to get the house ready for me to be comfortable in recovery.  We thought we were prepared last time.  There are a lot of things I learned that we can do better.  And I know I won't really be prepared this time either.  But at least I'll make some things easier on us. 

One of the things that the surgeon wanted me to do last time was "take three 10 minute walks around the block every day", which is probably great advice if you happen to live in a flat neighborhood with blocks.  We don't.  We live in a four story house on a really steep hill.  There's no place to walk.  So on the advice of my physical therapist, we bought a really good quality recumbent exercise bike which should be taking up residence in the living room some time next week. 


Tomorrow and Sunday I'll be setting up my office as a bedroom.  It's where I slept last time (closer to the bathroom and kitchen than the master bedroom) but we did it in a really haphazard way last time.  This time I'll move all my clothes down, organize my meds, and make room for other random stuff I didn't think I'd want or need last time.

I spent yesterday and today doing paperwork.  I caught up on all the bills and got new tags for my car and finally filled out the advanced directive paperwork that I should have done a year and a half ago.  Everything in the house can basically exist on autopilot for the next couple of months if I'm not up for dealing with it.

Bob's going to be a bit busier this time with his life than he was last time, but I think it's going to be good.  I've got a few people lined up to babysit me so he can get out of the house to work a couple of playoff games and finish his last few classes of the semester.  He's scheduled to start classes at Cal State East Bay in January, but by then I should be pretty independent when he's not around. 

We were lucky in a lot of ways in the last year, his schedule was really light and he was able to go to every appointment with me and do all the caregiving/household stuff when I was unable to contribute.  That was great, but it was also bad because for so long we had nothing to talk about but cancer, and really not even much to say about that since he's been here for every second of it.  That's not healthy either.   I am so glad he's got his own things to do that have nothing to do with me right now.  It's better for both of us. 

In the last week I've given in to two of my major vices - streaming dumb television and playing (and even paying for) stupid games on my phone.  I did that intentionally, and I expect that's how I'll spend most of the weekend.  It's just better for my head right now to have these distractions in place.  It won't be fun breaking those habits again in a couple of months, but I'll jump off that bridge when I get there. 

So that's it.  No plans for the weekend except for low key dinner with friends the next couple of nights, finishing getting my temporary bedroom ready, and watching Netflix. 

We'll be up at 4:45 and heading out the door by 5:15 Monday morning.  Surgery is scheduled to start at 7:30, which based on experience means they'll actually start cutting around 9, and they have the O.R. booked for about 8 hours.  (Which is long, but a lot less than I originally thought.)  I'll be in the ICU for 48 hours afterward and then if everything goes well I'll be moved to a regular room at Mount Zion in San Francisco some time on Wednesday.

I've asked Bob to update my FB account for me on Monday night.  Some of you with his phone number might need to nudge him to actually do it.  :)

An update. Now, with hormones!

It's been about five weeks.  Things are good, I really settled into work and life again, started hanging out with friends and doing normal things like having dinner and having people over to watch movies and eat takeout.  I still don't have all my energy back (by a longshot) but settled in to something I could live with.

Of course, then the last couple of weeks I had to throw everything in the air and I'm exhausted again, but it's all good stuff.  I spent several days last week at a training, living in a hotel and attending marathon classes and then staying caught up with work stuff in the evenings. 

This week I hired a new person to join my team, which is great and I'm thrilled about, but also means I actually had to put pants on and go to the office several days this week.

And then tomorrow night I move into another hotel for JavaOne.  I think I'll be ready for a vacation when I get home next Friday. 

I finally seem to have found the right balance of hormones.  It's been about a week since I started the new levels and I'm not having hot flashes or night sweats anymore, but I am crying over kitten videos on the internet now.  Win some, lose some. 

I also finally got in to get my vision checked.  The doc said chemo wouldn't have had any impact on my vision, it just went to crap this year because I'm 42.  Yay.  I had to get progressive lenses for the first time.  The adjustment has actually been really easy after the first day of headaches, and it is really nice to be able to read things on the TV without squinting. 

PT is going well.  I need to be more on top of my exercises, but given how bonkers my life has been for the last couple of weeks, I'm not worried about it.  We definitely have recovered more mobility in my knee.  It's funny because I hadn't really noticed the change, but at pilates this week I was doing leg work - I lay flat on my back on the carriage of the reformer, and basically do a leg press against a bar at the end, pushing my weight away from the bar and straightening my legs.  Stef and I both realized at the same time during that series this week that my knee was bending enough that the carriage was sliding all the way home for the first time in the three years I've been doing it.  So I'm feeling pretty good about it.  We're cutting back my PT sessions to every other week until my surgery, and then will start up again in February if I feel like I need more. 

Two weeks to go before my next checkin with the oncologist, and seven weeks until surgery.  That doesn't feel real yet. 

back to reality

Seems like monthly checkins here are about my speed these days. 

I've been back at work for about a month now.  It's going well overall, but I'm exhausted.  It feels good to be useful, to have a reason to get up in the morning, to be engaged in things happening beyond my house. 

Chemo brain continues to be an issue.  Short term memory and multitasking are things I can't do well any longer.  It takes me longer to process things.  Outside of working I notice it when I try to read a map and navigate while Bob's driving somewhere, or calculate a tip at a restaurant.  While I'm working I notice that it takes me longer to take down coherent notes in meetings.  My writing has some atrocious errors in it.  Missing words, homonyms and homophones used improperly (I just started typing y-o-u for used and had to fix it, for example).  I get fried a little faster and need downtime, even if I'm not actually sleeping.  I'll spend an hour or two with my eyes closed most days just trying to stop taking in new information while the rest of the day sorts itself out. 

I think I'm probably at 80-90% of where I was before I started treatment.  But then I was also probably working closer to 50 hours a week on average, and I'm definitely holding the line at 40 now.  So maybe it all comes out in the wash. 

I'm at the point now where I don't need to take a nap during the day as long as I don't do anything physical, but if I do, I'm hosed for the day.  I've been sticking to pilates once a week and weights twice.  I start PT for my knee on 8/26 and hope I'll be able to start walking and doing short hikes again soon after.

The most frustrating thing is that it's always been easiest for me to exercise first thing in the morning.  Stuff always comes up throughout the day and it's just hard for me to be consistent in the afternoons, but if I work out in the morning now it feels good for an hour or two after and then I crash hard and spend the rest of the day doing a zombie imitation.  If I exercise around 4pm I can be a zombie at the TV for a couple of hours and go to bed, and I wake up fully recovered the next morning.

Given everything, it's kind of a silly thing to be frustrated about, but I really want my old routine back.  I do recognize that the only way to fight the fatigue long term is to exercise and get stronger, so it's my top priority.  Work can slide, the house can slide, the gym can't.   My hope is that I can maintain this routine by brute force until I have surgery again and that maybe I'll be far enough past chemo by the time I can resume exercise in February that I can also move back to morning workouts. 

Which reminds me - reconstruction is scheduled for the week of Nov 17.  I should know exactly the day in late October.  3 month recovery (assuming all goes well) means I'll be away from the gym again until mid-February. 

In other news, I'm still waiting to start hormone replacement.  The doctor I was referred to doesn't do HRT, and yet her staff booked me for it and made me wait 10 weeks, until two hours before my appointment, to tell me.  So I'm starting over, I've got phone calls in but no appointments yet.  In the meantime my GP upped the estrogen level in the birth control pills I'm taking, but I haven't seen a significant improvement yet. 

Maybe I'll have better news by this time next month.  :)

Lots of catching up to do

It's been a while.  I've mostly been without internet access and doing nothing, which has been awesome. 

The wedding was just about perfect.  The provigil worked, we enjoyed the day and all the ancillary events over the weekend.  The one big downer is that I seem to have jammed my knee badly, so it's definitely back to physical therapy for me.  I didn't fall down or twist it, but I think just walking on the cement floor for hours did me in. 

The last of our family and friends left on Monday and then we had another 72 hours of stress, trying to get our stuff together for an 11 day trip to see Bob's family, and wedging two doctor appointments in there as well. 

I saw the oncologist that Wednesday.  She said everything looks good, except I'm still definitely anemic so I'm on daily iron supplements for the summer.  We'll continue to do bloodwork every 90 days for the next couple of years to make sure everything stays in line and keep an eye out for cancer antigens in my blood.  I think it's every 90 days for two years, and then every six months until we hit year five, and then I just do it along with my annual physical. 

I also checked in with the plastic surgeon on that Thursday.  He thinks I'm healing well and we're good to go with reconstruction in early October.  We don't have it officially scheduled yet, but the paperwork is in the works. 

Friday morning (July 4) we got up ridiculously early and flew to Atlanta.  We spent the next 10 days visiting Bob's family all over South Carolina and Tennessee.  We also took a detour for an afternoon in Nashville with one of my best friends from high school.  It was a great trip overall, and the best thing was that it was totally stress free for me.  After all the planning for the wedding and the trip, there was nothing for me to do, nothing hanging over my head.  I brought my laptop but only used it for the two days we were in Greenville.  It was fantastic. 

I'm still tired, and I still have neuropathy in my feet, but overall I'm feeling pretty good, so the week after the wedding we also started the paperwork for me to go back to work.  I just got word this morning that it's all completed, so I'm officially back in the office on Monday, 7/21.  I mostly work from home so I can pause or take a nap if I need to, but I don't think it will be necessary.  Physical stuff still makes me really tired, but sitting at a keyboard and talking on the phone don't.

The one big thing left (beside reconstruction) is hormone replacement therapy.  Instant menopause sucks.  I'm getting hot flashes, night sweats, and my memory is a little funky.  It's impossible to tell what is the leftovers from chemo-brain and what is hormone related.  Either way, I see an endocrinologist in August to start straightening that bit out. 

Provigil

I started my Provigil test Friday morning.  I took one pill (200mg) around 8am.  I chose Friday specifically because it follows my Thursday pilates session and ever since I went back to the gym I've needed a 3-4 hour nap the next day.  So, I took the pill and I avoided caffeine all day to keep it honest.  Usually I feel the first crash of the day around 11.  I coasted right through that.  Bob and I went down to the garage and took an inventory of all the wedding supplies that have arrived (three more minor things to buy, and then I think we're done) and then repacked them so they will be easy to take up to the zoo next week. 

I came upstairs to work on some other wedding stuff and got so into it that I completely forgot to eat lunch.  I noticed that and decided to get up and eat something after I finished this one thing.... and looked up again and it was 90 minutes later.  I got a lot accomplished.

A friend came over to have dinner with us and watch some TV.  I usually go to bed when he leaves.  I did go to bed last night, but I read.  And read.  And read.  At midnight I started taking .5mg Ativan, and I ended up taking four of those (totally safe per my doctor, I sometimes take more than that on chemo days) before I fell asleep around 3:30 am.

Woke up at 8 this morning, felt bleary from lack of sleep, but I don't think it's a hangover effect from the drug, just that I didn't sleep enough.  So I took half a pill this morning and went out to breakfast and then did a bunch of shopping all by myself - Trader Joe's, Bed Bath and Beyond, Avenue, Walgreen's.  That's more than I've attempted in a long time. When I got home my body was exhausted, but I've spent the afternoon doing more wedding stuff online and reading and never felt like I needed a nap.   It's almost 7 now and I don't feel particularly tired.  We'll have dinner and I'll go to bed at the usual time and see what happens.  Experiment over.

The best way to describe what it feels like physically is that I feel like I drank too much coffee, but not jittery.  It's unpleasant enough that I wouldn't want to do this daily, but I think it will work fine at the wedding next week.  It did feel like it took a couple of hours to kick in, so I may get up and take it earlier - maybe 5 or 6 am and let it wake me up.  I could definitely see taking a half dose to do things like fight jet lag or handle marathon conference days.  

The hyperfocus thing is interesting.  I definitely got a lot of stuff done despite my usual distractions, but when I don't have something to focus on I feel kind of scattered. 

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In other news, I'm officially out of the last round of chemo on Tuesday.  My hand still hurts and is discolored from the infusions.  I plan to keep updating the blog, but those updates will be fewer and farther between as I shift into long term care - bloodwork every 90 days or so and then prep for surgery in the fall.  My next oncology appointment is July 2. 

Pretty boring, in a good way

Tomorrow will be two weeks since my last infusion.  My energy levels are still terrible, but otherwise I'm doing pretty well.  I think I've worked through the last of the bone pain from the neulasta shots, although I still feel a deep bruise in each arm where I got the last two.  I expect that will disappear in the next month or two. 

After several discussions with my psychiatrist and my oncologist we decided on a mix of dexamethasone (the steroid I took along with my taxol infusions) and ProVigil.  I tested the steroid last week and it came close to doing what I needed.  I haven't filled the ProVigil prescription yet, but I'll get it this week and try on Thursday or Friday.  In the mean time I'm taking iron supplements daily and trying to pace myself.

At this point I can sit on the computer all day and not need a nap, but any kind of physical expenditure is hard and I get tired fast.  Standing still is harder than moving.  We've been doing a bunch of prep work for drinks at the wedding and I have to take a break and sit down every few minutes.  Grocery shopping is exhausting, I think it might be the worst because it's walking for 15-20 minutes and then standing still in a line for five or ten.  Now Bob goes with me and I usually abandon him at the checkout and go sit in the car.  I have been keeping up with pilates but let weight training go for the last couple of weeks.  Doing the work itself isn't that bad but it's taking me a couple of days to recover from the effort and I have too much other stuff to do around the wedding to risk being too tired to accomplish it all.  I'll try again next month when we're back from our trip. 

I'll do another round of bloodwork and see the oncologist on July 2, which is when we'll figure out what my long term maintenance plan is going to be.  I expect it will be a mix of bloodwork every few months for the next year and a couple of PET scans to look for metastases.  If everything looks good on July 2 I expect that we'll start the paperwork so I can return to work

Done. Sort of.

My final chemo infusion was yesterday and it didn't go great, but that's been completely par for the course the last few months.  I think really what it comes down to is that while the nurse in the practice who manages infusions is great in all other respects, she's very used to dealing with ports and is just as good at setting up IVs.  After that first infiltration incident, each time she's tried both elbows (which the lab techs get every time now since I've been really conscientious about being hydrated) and fails and then goes into the back of my hand, and has to try multiple times to get that.  It is really painful and it continues to hurt through the entire infusion - burning and throbbing.  I started taking Ativan before going in to see her the last couple of times, and yesterday when we got to my hand again and I was crying in pain and frustration I said screw it and took some vicodin too.  It knocked me on my ass, which was awesome.  Those are two drugs you don't want to mix, but I knew the dose was safe because I'd been given more than that in a hospital setting before.  I hope I don't ever need to do that again though. 

So I went back today for my neulasta shot and did an abbreviated (no energy) pilates session and saw my shrink.  We talked about possible short term stimulants for me.  Not for daily use, just to help get me through the wedding.  I won't be recovered by then, and I am really worried that I'm going to shoot my wad at the rehearsal dinner and then be a zombie at the wedding itself. 

My anemia is bad, but not bad enough to trigger an automatic transfusion.  Shrink and I talked about adderall and provigil, but he wants my oncologists opinion before we move forward with either one of those, so I'll send her a note asking about that and also let her know that I think a transfusion would take me far enough to not need either one of those things and would be my preference anyway.  We'll see what she says. 

I expect to crash hard tomorrow and through the weekend. 

Tired of being tired.

I went for my check-in with the oncologist this morning.  My next (and final) chemo infusion is a week from today.  My bloodwork looks pretty good - I am definitely anemic, but managing to stay a hair above the cutoff for intervention.  Everything else is fine.  I am just so tired all the time now. 

I'm going to do pilates tomorrow, but I haven't been to the gym since pilates last week.  I dressed up and went and did something moderately social last Friday afternoon and spent the whole weekend in bed recovering from it.  I was going to go to the gym yesterday, but going to lunch with a friend and an hour of very low energy shopping (replacing underwear and t-shirts for the gym) just took it out of me.  I had to sit in the car and rest for a while before venturing in to Trader Joe's to pick up something lazy for dinner.

So basically it means I need to pick one or two small things to do in a day, and that's it.   It's really frustrating.  I'm bored, I want to do stuff,  but there is such a steep price to pay.  Today's things are the oncologist and making dinner tonight.  Tomorrow's things will be the gym and a phone call to stanford to settle some billing BS with them. 

I think it's worse right now because I'm so close to the end and I just want to be done and move on from this.   But there's also the knowledge that some of the chemo side effects can be permanent.  Some people get their energy back, and some people don't.  Just because I'm officially done with my last chemo cycle four weeks from today doesn't necessarily mean this will improve.  That's a little scary. 

Carbo Round Three

I am going to be so glad when I'm done with this crap.  She couldn't get into the vein in my elbow again and ended up going into the back of my right hand, which was just throbbing the whole time.  No infiltration (leaking out of the vein) this time, but it wasn't pleasant either.  And having a needle in the back of your hand makes it hard to do anything like type or play solitaire on my phone, so I was in pain and bored more than usual.   Wah. 

The rest of it is a mix of good and bad.  I got to the gym a couple more times, but not as much as I wanted because I've been having major back pain that felt like Neulasta, but it was lasting longer than anybody thought possible, so I had to go get it x-rayed.  Good thing:  I do not have new cancer in the bones in my lower back.  Bad thing: I do have a couple of degenerative discs.  Yay?  At least that means I can keep doing pilates - any core work that strengthens the back will help with the pain and should help slow down the damage, and for now the pain is probably from the Neulasta.  Which is a bummer because it basically means I'll be feeling it for the next couple of months and will need to spend most of the wedding day sitting down. 

I forgot to ask for my numbers today, but I think I'm slipping into anemia again - I've been taking my iron supplements regularly, but at some point chemo just takes out more than you can possibly get back in.  So now I'm back to feeling not-quite-awake for most of the day, which sucks.  I've got pilates tomorrow (steroid high should support that) and then I'll crash Friday and Saturday and try to get back to the gym Sunday evening. 

I've also decided to go off the neurontin.  I gained another 9 pounds in the last couple of weeks.  I am now terrified that the wedding dress I bought that fit fine a few weeks ago won't zip.  I stepped down to 300 mg (one pill) last Friday night and expect tonight to be the last one I take.  The neuropathy has come back a bit in my feet and hands.  I might reconsider neurontin again in the future, when I have a better handle on my workouts and have seen an endocrinologist, but really only for the neuropathy.  It doesn't seem to be working for any of the other stuff I was theoretically taking it for anyway. 

I think that's all of it.  Tomorrow is neulasta, pilates, and an appointment with the shrink to tell him the neurontin isn't working for me.  The weekend will be spent sleeping off the worst of all of it and reading in bed. 

My boobs are here!

That's not a sentence I ever thought I'd be excited to type, but things got delayed with my prosthetics order.  Everything is in now, so I'll head out to Nordstrom to pick them up later this afternoon. 

Otherwise my week has been pretty good.  No doctor appointments for me this week (could that be a first since last May?) but I did get out of the house quite a bit, including the gym on Sunday to do my new weight training circuit, Tuesday for a "gentle stretch" class and weights, and then yesterday for my first Pilates session. 

I am sore, but it's the good kind of sore - I worked hard and earned it.  I've been in a lot of different kinds of pain in the last year, but not this kind and I have missed it.  

I'm going to try to get back in for weights again tomorrow morning, and then my gym schedule will be Tuesday weights/stretch class, Thursday stretch class/pilates, Saturday weights going forward.  Eventually I want to switch back to Wednesdays for pilates and M/F for weights, which is what I was doing before, but my trainer doesn't have room for me on Wednesdays yet.  It'll happen.  It doesn't really matter to me until I go back to work anyway - for now one day is exactly like any other. 

Carbo, round two and a reboot at the gym.

All of my veins have gone into hiding.  It took an hour to find a good one yesterday and get me started, but once we had that poked properly the infusion was a breeze - pre-meds plus carbo infusion took about 75 minutes, and thanks to the massive amounts of ativan I took beforehand I slept through most of it.  :)   Since I'm working on being back at the gym, we agreed that next time I'll try going straight from weight training to chemo and see if that helps my veins pop at all. 

Since then, my experience of the drug has been wholly different than last time.  I was more nauseated when I got home and even being chock full of compazine and zofran didn't kill the feeling.  I ate a small dinner and was in bed by 9:30, and took more ativan to help me sleep through the nausea.  This morning I feel pretty good on one compazine and ate breakfast OK.  I'm definitely high on steroids for now, which is OK by me. 

I'm heading off to the gym at 2:30 to do my first real training session in 11 months.  We met on Tuesday and talked about my new limitations -I've been so sedentary that I'm significantly weaker than I was when I started two years ago, and my arms are in terrible shape post op - try borking up your pecs with surgical scalpels and then not lifting anything heavier than five pounds for three months and see how your biceps feel.  The various catabolic steroids I've been on for long periods eat your muscles.  That high, strong feeling is useful to get you through the day, but fake and destructive to the body overall.   (I've been on decadrone with every chemo infusion and several days after, prednisone for months following major histamine reactions and that pulmonary failure last fall.)

We also talked about my goals - gaining overall muscle strength, and working specifically on core and a huge one is being able to get out of a chair or off a toilet without bracing myself with my arms.  It wasn't a problem a year ago, but it is now.  I suspect my inability to do that may have lengthened the amount of time I was on the wound vac, and I need to bring my A game to the reconstructive surgery this fall. 

The other complete unknown here is how not having my ovaries any longer is going to impact me.  I'm taking estrogen and progesterone (via birth control pills at the moment) to replace what I lost, but not testosterone which is created in the ovaries.  Testosterone is also released by fat, which I've got in spades.  So maybe I'll have a more normal amount of testosterone?  Will that make it harder to build new muscle?  Easier for my body to let go of weight?   Harder to let go? 

I'm planning to go see an endocrinologist about all this stuff, but probably not until next spring, when I'm done and recovered from reconstruction.   I've just got too much on my plate right now, and the numbers are probably more screwed up than normal thanks to chemo and all the other lifestyle shifts I'm going through now. 

General plan for now:  Weight lift twice a week.  Private pilates session on the reformer once a week (twice if I can swing a way to afford it).  20-30 minute walks in the hills by my house once or twice a week with a goal of a longer hike with Bob every weekend once I'm done with chemo.  It's doable - this is what I was doing before I got sick.  The question is how long before I can really have the energy to get fully back into that routine.  I'm guessing August-ish between the time off I'll have to take for chemo and then travel weeks after the wedding. 

Progress continues

File under good news:

- The wound vac came off Monday morning.  I'm glad I volunteered to keep it on for that extra couple of weeks.  It's now done as much as it could do.  There's still an open area that totals maybe two square inches (some of that is long and skinny along the incision line) where there is no skin yet.  So it's behaving like an oozy skinned knee and I still have to keep gauze on it when I wear clothes or they stick in it which is pretty gross.  I saw the surgeon this morning and she went over the oozy bits with silver nitrate to try to get them to dry up quicker.  I've been instructed to be topless as much as possible to encourage it to dry out as well.  I'm really glad the weather is warm enough to support that behavior around the house. 

- For the first time since last September I've felt like I had extra energy over the last few days.  For months now I've been exhausted all the time, barely able to do the bare minimum of things I need to.  Whether it's been chemo, taking opiates for pain, recovering from surgery, being colossally depressed, or some combination of all of them, I haven't moved unless I absolutely had to.  This week I've been antsy and started walking for exercise again.  I saw the oncologist yesterday and the surgeon this morning and they both cleared me to go back to the gym and start weight training and pilates again.  It's going to be a long road back to where I was when I had to quit last May, between the steroids, the sitting, the poison, and the surgery I am most certainly weaker than I was when I started three years ago.  But I'm excited to be starting again.  I'm going back to the gym to reinstate my membership tomorrow and I've got an appointment with the trainer I'd been working with for the last couple of years on Tuesday.  My expectation is that I'll need to take a week off from working out after the next three rounds of chemo, but the two weeks following I should be able to be consistent about exercise. 

File under not-terrible but not-great news:

The neurontin experiment isn't going well.  One of the possible side effects is weight gain.  I started at 300 mg and that helped with sleep a bit but not enough, so we upped it to 600, and then upped it again to 900 about 10 days ago.  The idea being it would help me get to sleep/stay asleep and I could wean myself off of the Ativan I'd been using.  I had noticed that at 600 I was waking up hungrier than usual, but I would eat my usual breakfast and be OK until lunch time.  At 900, I wake up absolutely ravenous.  So hungry I could easily it double or triple what I usually do for breakfast and be hungry again an hour later.  I suspected I was gaining (we don't have a scale at home) and being that hungry is kind of miserable too, and it wasn't really improving my sleep more than the 600 dose was.  So a couple nights ago I dialed it back to 600 again.  The effect on my appetite was immediate.  This morning at the surgeon's office we confirmed that I've gained 10 pounds in the last two weeks. 

While I'm OK with weighing what I weigh, taking a medication that could make me gain like that for not a lot of benefit just isn't worth it.  The benefits I am getting are 1) no night sweats, 2) once I get to sleep I usually sleep better, and 3) some reduction in the neuropathy in my feet.  I'm hoping that some time at the gym and keeping that dose at 600 will keep my weight in check.  If it doesn't I'll have to stop taking it. 

Also not-great, the last couple of nights have been awful.  I was used to the higher dose and it's going to take a while to get used to the taper, apparently.  I'm now on my third (and last) cup of coffee for the day and trying to honor my commitment to myself not to nap today.  It's 2:52.  I might make it. 

Vanity, Part Two

I don't believe I have written at all about how I feel about my appearance since I buzzed my hair off last July.  Mirror avoidance has become a firmly entrenched habit now.  For a while, during the worst of the pre-wound-vac days accidentally catching a glimpse of myself as I got out of the shower would send me into an all-out panic attack.  The giant holes in my chest were big enough to stick my fist into (I didn't, but I could), and my brain just couldn't handle that. 

I'm having to confront mirrors again, and it is weird and really uncomfortable. 

As a very fat person I'm used to being utterly ignored in most anonymously public situations.  People don't make eye contact, it's exceedingly rare that strangers talk to me.  I can walk into a high end department store wearing $300 boots and be entirely ignored by the sales staff in the shoe department.  That happens more often than not. 

If you're not the same size as me, you may think your experience is similar, but I guarantee you, it is not.  I have plenty of slim-to-chunky friends, and they are noticed when we are out together, acknowledged in a way that I never am.  They interact with the world in a way that I just don't.  Honestly, that part is mostly OK.  It's nice to be invisible in a lot of contexts.  Except when I really want some new shoes. 

Right now, I'm not invisible.  Most of last fall I was bald like Kojak and a lot of people stared.  Now my hair has started to come back, but not having breasts has caused people to do double-takes in the grocery store, on the street, in restaurants.   Add the wound vac, which sounds like a coffee percolator and has tubing that runs out from underneath my shirt, and visible pink fluid running through it, and I'm a bonafide freakshow. 

Monday I took a first step back toward looking normal - I went and got fitted for a prosthetic bra.  Nordstrom does it, they carry the "forms", which I guess is the PC term for falsies.  They also carry bras and camisoles built with pockets to carry the forms and will add a pocket to any other bra they sell free of charge if I ask them to.  I decided to go a lot smaller than my old size - to aim for the approximate size I'll be after reconstruction.  Since I'm not going to use silicone I'm expecting that to be a C or D cup, so for now I'll be a 44C, down from a 46DDD.  I have to wait a couple of weeks for them to get a matched set for me. 

 It was really strange to try them on, look in a mirror again, see a female shape there, and a shape that is so different from what mine has been for the last 20 years.  My hair is almost an inch long now, and it's coming in curly (which is not surprising, that's a standard side effect of chemo, and in some people it comes in red too).  I have no clue what to do with it.  I'm holding out for a little more growth (which could stall out while I'm on chemo) before I get it cut.  For now it looks like I styled it with an egg beater. 

So, how do I feel now?  A little closer to normal.  I walked into Sephora and bought lipstick today.  I couldn't have done that two months ago. 

----------------------------

Things are bumping along otherwise - chemo is pretty much as expected.  My first carbo infusion was a week ago.  I was nauseated for the first couple of days but only needed compazine to take the edge off of it over the weekend.  I had my Neulasta shot to stimulate bone marrow on Friday and the real pain started Monday evening.  It's starting to taper now.  I take Alleve during the day and something a little stronger to help me get to sleep if I need it.  I'm hoping it's gone tomorrow.  It definitely is hurting worse as a whole this time than it was in the fall.  Bob's theory is that it's because my marrow is in better shape right now.  I have no idea, but I'm glad I've got a stash of the good drugs.  

The pain in my arm from the missed vein finally disappeared in the last 48 hours or so, or maybe I'm just not noticing it because I'm medicating the other. 

The wound vac is doing its job, I really noticed progress in the last couple of days, and there's about a square centimeter of entirely new skin that has appeared since Monday.  It's still annoying as hell but just knowing that I can take it off at any time and walk away makes it a lot easier to keep the thing on. 

Back on the vac...

I decided to go back on the wound vac for another week.  My right side seems to be healing up fine now, and my left is well on the way, but I'm worried about stalling out now that I'm back on chemo.  The surgeon thinks it's fine either way, but will be faster with the vac, so it's completely on my terms.  If I get too sick of it and want to take it off at any point I can.  That makes the whole thing easier, even if it is still a pain in the ass. 

The swelling in my arm is gone completely, but it still hurts quite a bit.  There's a pretty nasty bruise where the IV went in, I'm wondering if more will surface over time.  I'm just taking Alleve for it now and it's tolerable. 

Not much else going on.  The expected steroid crash happened this afternoon and I took a five hour nap despite having three cups of coffee this morning.  I'm off the nausea meds and feel OK, but I'm taking them with me everywhere I go, just in case, for the next few days. 

Oh, FFS.

Content Note - this is heavy on things going wrong with IVs/Needles.  Proceed with caution (Mo!).

I guess I don't need to establish at this point that if something could possibly go wrong, and probably something that never occurred to me in a million years could happen, it will.  Don't worry, I'm not down about this one, it just hurt like a bitch and I'm back on the opiate train, whole hog, for a day or two.

Thirst issues - I think I wrote about this?  Some time during the AC chemo (Nov-Dec) I lost my thirst cues - I don't get thirsty anymore.  I'm sure it's the primary reason I ended up back in the hospital with that kidney/bladder thing in January.  If I pick up a glass and take a sip, and I am dehydrated, I will instinctively chug the whole thing, but "thirst" is no longer the reason I pick up the glass.  I literally have to schedule it in my day or have it placed in front of me at a restaurant or need it for some other reason like taking pills.  It's really weird.

I'm also a really hard stick for blood draws.  I'm fat, my veins roll, blah blah.  My bloodwork was scheduled for 11am yesterday and I've been working really hard on being super hydrated to make that, and the IV I'd need today for chemo easier.  (My port/central line was on my sternum and was removed along with my mastectomy because we all thought I was done with chemo at that point.)  I've got a lot of good motivation - remember that blood transfusion?  They had to go into my wrist, they couldn't even find anything on the back of my hand.  It throbbed the entire time the infusion was happening (four hours, five?). 

So I've been setting timers and taking ten sips of water every 15 minutes while I sit at my computer.  That plus my morning coffee and smoothie are worth 60-80 oz a day.   Yesterday was a huge success.  Easiest stick I've had for a while on a blood draw - she only had to try twice. 

My bloodwork came back good - everything within normal limits now.  I'm not anemic for the first time in six months.

So today I went in for my infusion.  Ann (the nurse) apologized when I came in because she realized it would take longer than the 20 minutes she mentioned yesterday on the phone - typically carbo is given weekly with taxol - but I've already had taxol, so I get three times as much once every three weeks.  So she revised that time up to an hour plus pre-meds, but that's still shorter than anything else I've done by a long shot.

She found a vein inside the crook of my right arm and set up the IV for the pre-meds (steroid, benedryl, zofran to prevent nausea).  It hurt going in and when she started the drip it kept on hurting much like the transfusion in my wrist did.  We went over it and she determined that the drips were going where they were supposed to and that living with that pain for another 90 minutes or so was preferable to trying again on a different spot (my choice and she didn't argue), and that if any did leak out of the vein the drugs I was getting today wouldn't damage the surrounding tissue.

So she came back 20 minutes later and switched the pre-meds out for the carbo which goes into a pump to push the injection harder.  She set that up and walked away.  I was sitting in the infusion chair (like a big recliner with side tables) with my jacket over me because it was freezing in there.  I knew something was wrong about 30 seconds in, the pain was going up exponentially and my hand was throbbing too.  I told Bob to go get her and when I pulled my jacket off I had a tennis ball quickly growing to a baseball on my right forearm.  HOLY CRAP did that hurt.  Stupid, stunned me didn't think to pinch the line to stop the input, it just kept getting bigger and hurting more.  By the time Bob got her back in there (couldn't have been more than 90 seconds but it felt like forever) I was crying from the pain and my arm was just throbbing from wrist to elbow.

Short story - the pump plus the bad stick blew my vein out.  Fortunately I didn't have any kind of reaction to the drug at all beyond the physical response of all that fluid leaking out in one spot.  Another nurse came running and she brought me vicodin and an ice pack.  I sat with that for half an hour, watching some of the swelling go down and waiting for the meds to kick in, and then we went looking for another spot.  We did the rest of the infusion at one third the speed, straight into the back of my right hand.  And we'll start there for the next three as well.

The good news is that so far I'm barely feeling anything else from the carbo.  Maybe this thing is just a giant distraction.  I feel a little off but other than running upstairs to pee every half hour I was fine to sit on the couch and watch good-to-moderately-trashy TV for a few hours tonight and ate a reasonable dinner.  At the moment I'm on zofran (nausea), compazine (also nausea, I overlap the two for the first 48 hours), percocet, neurontin, and whatever's left of the steroid from the pre-meds.  It's enough that while I feel pretty loopy and wouldn't dare drive a car right now, I'm not tired.  My arm is still a bit swollen, but I think I'd probably have to point it out for someone to notice.  It's still throbbing from my elbow into my hand though.  And the anti-nausea meds, the pain meds, the daily iron supplement I have to take, and the carbo itself will all make me constipated.  But that is a bridge to jump off another day. 

While today has really sucked, it didn't trigger more depression for me.  This is a one-off.  I know what to do to prevent it next time, and I've got three weeks to get over this one.  I'll be fine.

Added bonus, my incisions have healed enough in the underarm area that I wore deodorant for the first time since January 20 today.  I am sure a lot more people than just me appreciate that. 
    

wound vac done, maybe

So it's off - now I've got "wet-to-dry" dressings on which is just gauze soaked in saline solution.  I'm supposed to let it be out in the air a couple of hours a day if I can, so tonight I took a shower after dinner and let it air dry while we watched TV.  It isn't all the way healed yet, but it's close.  I definitely need a break from the thing, I've got really itchy yeast all over my chest where the plastic dressings were and that needs to heal completely.  But, I've decided I may let them put the thing back on me on Friday for another week if it will wrap this up faster.

The approval for chemo came in from the insurance company late this afternoon, so tomorrow I have bloodwork in the morning, and then I start again on Wednesday.  Good news this time, the infusion is only going to take an hour instead of three or four. 

When it's all done it will be 32 weeks of chemo in 11 months.  I'm not nervous about it this time, I'm kind of a pro at this point. 

The end is in sight, maybe?

I am not hooked up to the wound vac today.  Reason?  Yeast.  What I thought was just plain skin irritation from the adhesive kept getting worse and worse.  I've been taking vicodin round the clock since Wednesday afternoon because it got so itchy it was actually painful and I accidentally scratched enough to break the vacuum seal on my dressings.  I didn't even have to tell the doc this morning when I saw her, she knew what it was when she pulled the dressing off and told me to take the weekend off from the vacuum.  So I've got a cream, a powder, and a pill to take for a few days, and then back to the vacuum on Monday. 

It is so weird to be untethered, I've gotten used to it.  Even better news, she thinks I'll only be using the vacuum for another week, and that I should be clear to start chemo a week from Tuesday.  I'm trying not to get my hopes up too high about that.  I don't need another big disappointment right now.  But for the moment, I'm happy to be free of the tubes and the plastic tape on my chest and the noise and weight of the vacuum for a couple of days. 

well, screw assumptions

Last week I posted some assumptions about timelines, but then I saw a nurse who finally said something other than "it'll just be a couple more weeks" which throws those assumptions off, possibly by as much as two months. 

Because I am tired and lazy, I shall now repurpose part of an email I wrote earlier today: 

Giant holes in my chest are shrinking.  They are now 14x2.5 cm on one side and 10x1 cm on the other. 

I still stink, but not nearly as bad.  The surgeon cut off a bunch of the necrotic tissue to allow the vac to work the last time I was in there, but I guess there is some more developing as the bottom of the hole in my chest fills in?  I don't know.  The nurse assures me it's normal, but the doc will have to cut it out again next time I see her (week from Friday) so the stink is creeping back. 

I saw the shrink for the first time yesterday and he thinks the Ativan is making the depression worse, so he wants to step me down off of it and start me on neurontin, starting tonight.  It's officially a seizure med for epileptics but off label it's good for insomnia apparently, and I was already going to have to take it at some point for the neuropathy in my feet.   Apparently it also helps with night sweats (yay instant menopause), so it could be the magic bullet.  It won't necessarily make me feel better in and of itself, but if I can sleep better and stop the benzos I might do better anyway.  We'll see.

-----

I just took the first neurontin and am going to head for bed.  I have to be up at 8 to start my new dressing change routine so I'm ready for the nurse at 9:

1. Take pain meds (tomorrow it will be 2 percocets).

2. Take a hot shower and let the water flow over the tape for about 20 minutes while I try to pick up the edges of the tape.

3. Dry off and lay back down in bed while Bob cuts the tubing from the vacuum and injects saline solution back up the line into the foam in my chest.

4. Hold a hot, damp towel over the tape on my chest until the nurse gets here.

The idea is to get as much of the tape loose before the nurse gets here as possible to reduce the pain I'm having when we rip it off and take the foam out.  My skin has always been super thin and sensitive - I break out in hives at the drop of a hat.  Applying and removing the tape required to make a vacuum seal three times a week is taking it's toll.  My skin is starting to chap, blister, and tear a little bit, and we can't put the tape someplace else, it has to be where it is for the vacuum to work.

So the goal is actually two things - reduce the trauma to my skin and reduce the amount of pain meds I need to take, so I can cut my opiate usage in half.

I really want my brain back.  I hope this works.  

Onward

We went to see the surgeon this morning.  She took the wound vac dressings off and cut off all the dead tissue that was on my chest.  The vacuum will work better without it there.  She thought it looked good and sent me home packed with gauze again.  The nurse came by this afternoon and spent an hour hooking me up to the vac again.  She also said it looked good.  "Beefy" was her word, and I am more than a bit grossed out by that, but if she's happy, I'm happy.   I'm also happy because with all that tissue debrided I don't stink nearly as bad.  I still don't smell great - I can't wear deodorant or shower right now, but that tissue was waking me up with the stench and there was nothing I could do about it.  Now cleaning up with baby wipes seems to be handling the job OK. 

The cats are completely obsessed with the tubing and the machine.  It makes funny, unpredictable noises (kind of like a coffee percolater) and as it pulls drops of liquid through the tubing the cats watch and chase them.  The tubing is strong and replaced completely every couple of days so I'm not worried about it.  It's just gross and funny to watch. 

We also drove into the city yesterday to see the plastic surgeon.  He said he agreed with everybody else that we just did the surgery too close after chemo and thinks it will be fine if we delay it for a few months after my next course.  So he wants to see me again a month after I'm done with it and then we'll look at a real schedule. 

So, making a couple of large assumptions about how long I have left on the vac and that I'll respond OK to chemo, if everything goes OK I'll probably be ready to start chemo the last week in March or early April and be done around the end of June.  I'll need a few weeks to recuperate from that but should be able to go back to work at the end of July, and then take a much shorter leave (probably 8-12 weeks) for reconstruction in the fall. I can live with that. 

I'm finally feeling able to start dealing with wedding stuff again.  I'll be putting some time in on that this weekend, I hope. 

Wound vac, day three

The nurse came over on Saturday to do the first installation.  It took about three hours.  At the surface of my skin there's a little more than two square inches that's open on the left side, and a little more than a square inch on the right, but under the skin the openings on each side are five or six times bigger.  The way she measured it was by sticking a q-tip in and measuring how far it was until she met resistance.  Then she cut the foam to size, pushed it into the cavity, and sealed it off.  Now I have a tube coming out of each side of my chest, then they are taped together on my stomach and meet with a y connector.  I have about six feet of play between me and the machine, so I set it on the floor to sleep and I have enough room to turn over.  Otherwise I carry it around with me or wear it around my waist.   

The suction is less comfortable than the gauze was, but overall this is more comfortable than the gauze stuffing and then wrapping myself up in an ace wrap to keep it all together that we were doing.  It's also nice to be dry - the gauze would soak through and my skin was getting really chafed from being constantly damp and rubbing on the ace wrap. 

We did the first dressing change yesterday.  This time three nurses came - the one from Saturday, a wound expert, and a trainee.  It's supposed to be really painful so I took two percocets about an hour before they got here.  It was painful.  This time it only took about an hour and then I slept for the rest of the afternoon. 

The good news is that although I still need them for the dressing changes a couple days a week, I've been able to get to sleep without taking pain meds for three nights now. 

They come back tomorrow for dressing change number two, and we should know if there's more progress.  Thursday we go meet with the plastic surgeon to talk about reconstruction again. 

It was supposed to happen yesterday.  I cannot imagine trying to go through with it feeling like I do.  I'm glad it was postponed. 

The saga of the wound vac.

Doctor ordered it Monday, said I should hear something Tuesday.  Nothing.  So I called her office and they didn't have a clue.  Wednesday morning the wound vac people called me and told me they couldn't do anything for me because my health insurance was canceled on February 17. 

I. Flipped. The. Fuck. Out.  I tried logging into the internal website at work to look for information, and my password doesn't work anymore.  I flipped out more.  It took five hours and I have no idea how many phone calls to finally get to an HR person who informed me that health care is only paid for the first month of long term disability, and that I needed to sign up for COBRA.  Nobody had ever mentioned this to me before. 

Then he said he'd send me the stuff and it would probably take a week to get reinstated.  I flipped out again.  He found a branch office of the company that manages COBRA for Oracle over by SFO, so I we drove over there and handed over the paperwork and a check for $2400 and magically I have health insurance again.  It's going to run us $1800 per month until I go back to work.  I had been thinking about going back for six months after I do this next batch of chemo, and then taking a few months off again for reconstruction.  Now I'm sure I'm going to do that, because I can flip back to short term disability and everything's covered again.   

So I was reinstated yesterday and the wound vac people said they would UPS the thing and somebody had to be here from 9 to 5 today to sign for it.  At 5:10 tonight I called the wound vac people to let them know it hadn't gotten here yet, only to discover they never actually shipped it.  Of course not.  And now there's no way they can ship it until Monday so I won't have it until Tuesday at the earliest. 

I flipped out again and described in extreme detail exactly what's going on with my chest (believe me, you haven't heard all of it, it's disgusting) and asked if we could drive to Fresno to pick the thing up.  And then he remembered that there's a distribution warehouse in San Leandro, and a night guy who comes in at 7.  So he worked it out and Bob drove out there and came back with a giant box of crap which includes the wound vac.  Yay!  The machine itself is not very big, maybe five inches square and three inches tall?  I can cram it in my purse when we leave the house.

This morning the home health care people called and did some initial screening and said that a nurse would call me later today to schedule a time to come over tomorrow.  Of course, the nurse never called.  My campaign of harassment will begin at 8am tomorrow.

I am so over this.  All of this.  I am so tired I don't have the words to express it.  I just want to be done and not hurt anymore.

------------------------

I have to say that it says something about the state of healthcare, insurance, and the fact of medical bankruptcy in this country that I felt an exponentially greater amount of panic when I was told that I had no insurance than I did on the day I was diagnosed with cancer.  Universal health care.  We need it.  Nobody should ever have a week like this.  Even with all the bullshit I've had to deal with, I am one of the extremely lucky ones, and that is horrifying.    I get to continue to be lucky for the low low price of $1800 per month. 

wound vacuums 101

Saw the surgeon today.  She wants me to try a wound vacuum to see if it speeds up healing.  She hasn't said so, but I can tell that at the rate it's moving right now, we'll be doing gauze changes for months. 

The way the vacuums work is that they fill the wound with a piece of foam cut to the right size, then seal the whole thing under plastic, then poke a hole for the hose that connects to the vacuum, and then seal it all up under another layer of plastic. 

The dressing changes are supposed to be excruciatingly painful because the new flesh around the edges can grow into the foam and it gets torn away when they remove it. 

On the upside the steady vacuum pressure should help, and it will pull all the liquid out.  I still soak through several layers of gauze, an ABD (thick pad), and three layers of ace wrap in about six hours.  It will be nice to be dry and not have to sleep on a towel anymore. 

The big downside is that I'll have to carry the vacuum with me everywhere I go for however many weeks or months this takes to heal.  Or maybe two vacuums.  The doc wasn't sure if they could hook up one machine to both wounds. 

They're going to send a nurse to the house to install it, probably sometime tomorrow or Wednesday. 

holding pattern

Not a whole lot to report.  Sunday night the incision on my right side started leaking.  The surgeon has been pulling out 320 ccs of liquid (about 10 fluid ounces) every 4-5 days for the last couple of weeks, but the incision gave way and I woke up in a puddle. 

So now we're doing wound packing on both sides.  The pressure hurts so I'm taking more pain meds.  surgeon thinks about three more weeks to go.  Bob says he can see progress, but I can't look.  I still pretty much burst into tears when we do the dressing change (twice a day, 9am and 9pm).  If it was somebody else's body I could probably stomach it, but it's too visceral right now (almost literally?).

Other than that I'm not doing much.  I have the attention span of a flea and am seeing double from the drugs.  I think I've probably got about two productive-ish hours per day, which get burned up on doctors appointments or phone calls to schedule more appointments or trying to return emails or making lunch.   Otherwise  I've been marathoning The Good Wife on my laptop from bed, napping, and reading YA novels. Seeing double makes TV more interesting - it's not a big shift, but it is sort of like watching with a picasso filter or something.  There's just an extra eye or chin every once in a while.  Brains are weird. 

We're still not scheduling chemo again until my chest heals up, so I just check in with the doctor and have bloodwork done to confirm that my hemoglobin levels are improving. 

slow week

I think the clot in my arm finally broke up yesterday - this morning was the first morning that I woke up without a swollen hand, and I can type comfortably and make a fist again.  My feet and lower legs have also been massively swollen (from all the IV fluid and lack of movement) since I got home from the hospital the last time.  They are starting to shrink down.  According to the scale at the surgeon's office I lost 11 pounds between Monday and Friday.  Pretty sure it was all water.  Gross. 

I had my followup with the gyno surgeon on Wednesday.  Everything there looks good and is healing right.  We started talking about HRT and how instant menopause could be contributing to my mental state.  She put me on an extremely low dose birth control pill that will supply estrogen and progesterone, which should help even things out a bit.  I'll try this for two months and then we'll reassess. 

The shrink referral finally came through on Friday but he can't see me until the 26th or so.  In the mean time I had a long talk with my sister (both a cancer survivor and a psychologist) about meds and I realized that I've been doing something kind of stupid - I've had a prescription for Ativan for months now, and have been using it to help with sleep and stressful situations during the day up until the surgery.  I stopped it cold turkey because I didn't want to mix it with percocet.  But now that I've stopped taking the percocet during the day there's no reason not to take the Ativan when I'm feeling upset, so I'm doing that again.  It's helping a little - less anxiety, more sleep.  Both things I need.  I'm nowhere near out of the woods yet, but it's a little better. 

This week I've got bloodwork and a progress check with the surgeon on Tuesday and then a followup with the oncologist on Wednesday.  I suspect the oncology followup is going to pretty much be about setting up another checkin in another two weeks to see if I'm healed enough to start chemo again.  Depending on the bloodwork, she may also order another transfusion.  I hope not. 

hitting the bottom

I hope I'm there.  Saturday I had to go back to the emergency room - my left hand started swelling and I had to get tested for a blood clot.  I do have one, but it's superficial in my left arm, so they sent me home with instructions to take a ton of NSAIDs and use hot compresses. 

In the mean time, the incision on my left side popped open at some point this weekend and it continues to leak fluid all over the place.  I finally gave up on gauze yesterday and taped an adult diaper up under my arm. 

This morning I got my first good news in a while - it's official now - I do not need radiation.  There's about 10% chance of recurrence on the chest wall given all of my other factors, but the doc said she thinks the risks of radiation outweigh the possible benefit at this time.

This afternoon we went back to check in with the surgeon.  She decided that despite the incision reopening (about an inch, pretty close to my armpit) she doesn't want to stitch it closed.  She showed Bob how to pack it with gauze and I'm to take two showers a day with him repacking and redressing the wound between now and Friday.  It is so disgusting I can't even tell you, and it smells awful.  I smell awful. 

I broke down again at both appointments today.  I'm just not doing well at all emotionally.  I took a referral to a psychiatrist at the cancer center from the radiation doc.  I don't know how long it will take to get in to see him, but I hope it's sooner than later.  I don't want to consider SSRIs or anything long term right now, especially because I'll be starting to play with hormone replacement therapy to some extent this week, but I need to do something.  If I could take a pill and sleep away the next month of recovery, I would.  I know that's not possible or reasonable, but it's the most appealing idea right now.  I just can't deal with anything else right now.  I feel like a zombie, and I'm pretty sure I smell like one too. 

more roller coaster

Wednesday proved to be another bad day.  I got home from the hospital Tuesday afternoon, and still felt like absolute crap. Almost couldn't make it up the stairs.  I felt like I gained a hundred pounds and couldn't lift my feet enough to clear the steps.  I also could not physically step into the bath tub.  Even at my worst, these had never been problems before. 

So Wednesday morning we got up early to go for my check in with the oncologist.  She wants me to do twelve more weeks of chemo - carboplatin, four rounds, once every three weeks.  She also noticed when I got there that I was bleeding through my shirt.  The incision on my left side started oozing again.  And she also noticed that my hemoglobin was at 7.1 when I left the hospital on Tuesday and was appalled they let me go.  So she ordered two units of blood for me.  That took the rest of the day to accomplish.  The infusion itself was five hours start to finish.  We got home around 10:15 that night. 

The transfusion did help me feel better - now I'm about at the same level of energy as I was around the pulmonary crash in october.  I cannot believe that I'm saying this is better, but it is and I'll take it. 

Yesterday I put on my clean pajamas and went to meet my folks for lunch - they're driving through on their way home for the summer.  I can't put real clothes on - still too many open wounds, scabs, stitches, leaky bits, so I'm parading around town in flannel pjs from lands end. 

This morning I woke around 2:30 to discover the enter left side of my body was wet.  I got up to look and there was fluid just freely running out of the incision on my left side.  This isn't the same stuff that was coming out of the drain - that was more fresh, dark blood.  This was watery brown used up blood.  So I called and woke my surgeon up and she told Bob how to redress it, and then we drove back down to the hospital at 7 this morning where she pulled a bunch more fluid out of the wound (nothing infected, thank goodness) and dressed it again.  And then we came home.

Assuming nothing goes wrong this weekend, my next trip outside the house will be Monday morning when we go see the radiation oncologist, and then in the afternoon we check in with the surgeon again.  Wednesday I check in with the gyno surgeon and start talking about hormone replacement options.

This week I have to cancel the reconstruction surgery.  We'll set it up again for after I'm done with chemo.  Everyone agrees that I'm not starting chemo again until I'm 100% recovered from where I am now, which should be 2-3 weeks at the least. 

For now, I am so goddamned tired.  I can't really sleep.  I'm not in enough pain to take anything for it and I'm tired of the opiate fog.  My eyes are constantly watering but I'm not crying. 

My goals for the next 72 hours are to stay hydrated and eat some small amount of animal protein at every meal.  That's it, and it's a pretty high bar at the moment.

Lessons in systems failures.

These last few months have really taught me how good my health used to be, and how easy it is to lose it entirely.  I just got home from another 3 night stint at Alta Bates.  I still had roommates, but they were much better this time around. 

So, to rewind a bit I spent a week at home recovering.  I felt like crap, barely left the second floor of hour house (we planned on that).  Many people kept us well supplied with food and things were improving.  I haven't had much of an appetite, but that's normal for the type of drugs I was on. 

Saturday morning I woke up and just didn't want breakfast.  I turned around at about 10 and went back to bed.  At two I started dry heaving.  At four my temperature hit 104 and Bob forced me to go the E.R.  Kidney and Urinary tract infection.  I was so dehydrated they couldn't find a vein for the IV.  They ended up having to use ultrasound and then put a picc line in.  So I've been IVs for a solid three days to get my fluids up and deliver antiobiotics.  I'm still barely eating, but I haven't thrown up yet today, so that's a good start. 

------------------

I never wrote about the meeting with my surgeon from last week.  It was a good news/bad news situation.  The good news is that the flaps of skin that now sit where my breasts were have attached firmly.  The bad news is that the seam where they join that goes into my armpit is necrotic - black, dead skin.  It's healing well underneath, but it looks and smells absolutely disgusting.  Doesn't help my appetite either.  There's still some discussion to be had, but this may put my DIEP flap in jeopardy since I didn't heal well from this one.

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.