Back to work!

I was scheduled for surgery last Monday to close my wound and get off the vacuum.  It didn't happen.  We waited too long, and I healed faster than they expected (nice, for a change), and now the thing is the wrong configuration to close neatly.  It was about 16 cm long, 5 cm wide, and 5 cm deep, with a major "undermining" - another 40 square cm (sort of between my navel and my ribcage) where internal tissue was sandwiched together as it should be, but hadn't actually grown together and showed no signs of doing so.  Now the undermining has grown together, and the wound is 14x4x1 cm.  Big progress.  But now, because the depth has filled in so much, he'd basically have to recut that undermining and install a drain again to close it, which really feels like a giant step backward. 

So I'm still on the vacuum.  There's one retention suture from the original surgery that is still visible at the bottom of the hole.  The bad spots are all gone, all the tissue is healthy, but new tissue doesn't like to grow over a foreign object, so there's no telling how long this will take.  The nurse could still see it when it was open a couple of hours ago.  It could be done by Saturday, or it could take three more weeks. 

In the last couple of weeks I've been able to get off the opiates on most days we don't change the dressing out (so TThSS).  We also figured out that we can reduce the pain on dressing change days by cutting off the machine (literally, scissors to tubing) about an hour before the nurse is scheduled to get here, mixing some lidocaine gel with saline solution, and injecting it (with a syringe for pressure, but no needle) into the tubing and soaking the sponge with it.  This doesn't kill the pain entirely, but it takes it from a me-screaming-and-crying 10 on the pain scale down to about a 3 (with percocet).  So now I'm stoned for a few hours in the middle of the day MWF and otherwise just taking Alleve.  I still feel it all the time, but the balance of pain against having my brain back most of the time has tipped.  I had a pretty miserable weekend the first time I cut it off -super twitchy and couldn't sleep at all, and there's still a bit of that happening on the off days, but it's better overall. 

Before all the cancer stuff happened I pretty much worked from home full time.  I checked with my manager and he's cool with being flexible around my dressing changes, so I've decided to go back to work on Monday.  I'll be working some funky hours for a few weeks while this finishes, but I'm really happy to be able to get back into it. 

Filling in the blanks

It's February.  Time flies when you're stoned off your ass on opiates and can barely move.  I've been doing short updates on FB but I think they are lacking in some major details.  So here goes, as best as I can remember it:

I had the big surgery on November 10 and spent a week in the hospital recovering.  Overall that went fine, but I think they gave me the boot a day or two too early.  I was taking 10 mg of oxycodone every 2 hours and 45 minutes, plus a bunch of other stuff and I barely made it up the stairs.

For the next several weeks I recovered as expected.  A physical therapist came by and confirmed that I wasn't safe on the stairs (I fell while she was here) and we all agreed that I shouldn't try to go up or down without Bob there to catch me.  I didn't fall again, but I really didn't leave my bedroom for another month.  Fortunately, we've been super careful and I haven't fallen again.

When they sent me home, there were no stitches on my incisions, just surgical glue and scabs.  Several weeks in the glue started falling off (as expected), but some of the incisions started opening up again and we started having to dress them, several on each "breast" (technical term now is "flap") and one big one on my abdomen, and my new navel was leaking too.

Around christmas the doc suggested that I come in "next week" and go into the OR and they'd just stitch up those spots.  We agreed and I was feeling pretty good.  But then there were no slots available in the OR until January 21.  So I continued to ooze, some of the incisions did heal, some got worse.

At some point I sneezed while I was lying in bed, and there was this huge wave of pain through my abdomen.  When I got up the next morning blood just fell out of the opening on my waist.  It looked like we slaughtered a pig in here.  It wasn't a new tear, it was a compartment that had opened up.  That changed how we addressed the wounds a little bit.  (More gauze, more packing.)

January 21 came (which, incidentally, is the anniversary of the mastectomy.  The surgery went fine, except for that mess on my abdomen.  The doctor said it was "dirty" but not infected.  Basically some areas of adipose tissue were just dying off in there.  UGH.  So they installed the a temp wound vac while I was under.  This is a routine I thought I knew.  The major pieces are the same.  What is different this time is it hurts like hell.  Last year when I had one, the skin was necrotic and so the only thing that really hurt was pulling the drape off for a dressing change.

(To review if you forgot or missed it - a wound vacuum system consists of black foam that they pack into the wound, a sticky piece of plastic film they put over it to create an airtight seal, and a tube that runs through the plastic film into a machine that keeps a low but steady vacuum pressure.  Any liquid produced is sucked into the canister of the vacuum, and the pressure encourages new tissue to form in the cavity.  The catch is that the new tissue grows into the foam, and so when they rip that foam out three days a week to change the dressing, they are ripping out tissue.)

So last time, the nerves around where the tissue was coming back were dead.  This time they are not.  Out of everything I've been through in the last two years I still think that the pneumothorax (slightly collapsed lung) was the most painful thing I've experienced.  This is number two.  And it hurts ALL THE TIME.  I actually screamed the first couple of times they pulled the foam out.  It's getting easier now - we're remembering stuff from last time, like taking a shower and using coconut oil to get the plastic off before the nurse gets here and letting some saline soak into the foam with the vacuum off to help it expand and let go easier.  Still hurts like hell though.

The surgeon wants me to keep the wound vac until all the bad spots are gone and the tissue is fully granulated (which just means actively growing), and then it's back to the OR for one more surgery to stitch that hole up for good.  I had planned to go back to work a week from this Monday.  There's no way that's  happening.  It's going to be another month at least.  The wound vac wouldn't prevent me from working, it's the pain meds that make it a bad/impossible idea. The opening in my skin is 16cm by 12cm right now, and I think about 6cm deep. 

I am making an effort to get out more.  I went and got my nails done and my face maintenance (waxing some hair, tinting other hair) yesterday.  I usually do those things every 3-4 weeks.  I hadn't done it since October.  I feel better now that those things are back in shape.

Today wasn't so great.  I went bra shopping for the first time and really learned how different my body is now.  I completely lost it in the dressing room and on the way home.  I realized that I've been containing everything by concentrating on whatever the next hoop is that I need to jump through.  I'm on the last one or two now.  Trying to figure out what "normal" will be for me given everything that has happened might be the hardest thing of all of it for me. 

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.