Eighth time is the charm?

I got more information from the surgeon today.  It's a lot worse than they were letting on when I was in the office, which I suspected, but am still upset at having the confirmation today.  I understand why medical people try to minimize stuff, but it really drives me insane when the message goes from "it's just a hernia" and I do all my research on that phrasing and recovery, and then get the information from my doctor today to expect to be in the hospital for a solid week post-op.  It's definitely open.  Just as invasive as the first surgery, if not more so (but in my abdomen only this time, no impact on my chest or arms).  I need to look into filing disability paperwork again, tomorrow. 

And that's where I hit the wall.  I'm still not afraid of the surgery itself, and not the hospital stay either.  This will be my 8th.  EIGHT.  Three of those have been outpatient.  The other five included stays of 2-7 days.  And I've had two other week long hospitalizations too.  This is old territory. 

So here's how it goes:  I drink as much water as I possibly can hold until midnight on Sunday the 20th.  I take some ativan and pretend to sleep for five hours.  We get up at 5am and drive into the city so we can check in at UCSF (Parnassus this time) by 6, I get to have a meltdown about the IV.  I freeze my ass off in the gown that doesn't fit right and the air blanket that doesn't quite cover my feet while the cold saline and pre-meds go in.    Somebody delays something because nothing ever happens on time.  Sometime between 8 and 9 they roll me in for the surgery that was supposed to start at 7.  I wake up in pain, not quite enough pain meds, in recovery and won't really recall anything that happens over the coming week because I'll be in a drugged stupor the entire time.  They'll send me home once I've pooped and climbed three stairs in the occupational therapists office.  And they'll do it despite the fact that I'm unstable and have to climb two full flights to get in my house.  And then I'll sit in the bed in my office for weeks?  Months?  It was about six months last time before I was done with the wound vac and ready to move upstairs again. 

And the fucking wound vac.  Nobody's mentioned it yet, but the last two surgeries I had I needed one, so might as well expect it this time and enjoy being pleasantly surprised if it doesn't happen. 

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This life that I have now.  Working and sleeping and seeing the light at the end of the tunnel disappear again.  Being unable to do the physical things that would make me feel better - can't exercise, can't go get a massage or sit in a hot tub (still an open spot on my stomach from over a year ago),  can't even comfortably hug my husband because my body is so fucked up. 

This is what scares me.  Makes me depressed and want to throw things.  Makes me wonder why I keep bothering.  This is not the life I wanted.  I try to do the best with what I've got, but today that's nowhere near good enough.  I have so been looking forward to trips to Yosemite with my family at the end of January and to Puerto Rico in February with Bob.  Not anymore.  We still haven't had our honeymoon. 

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Still here?  I've realized that I should clarify a couple of things because of questions people have asked over the last few days.  This is definitely a result of the last surgery a year ago.  Not a common side effect, but a possible one.  When they transplanted the tissue from my abdomen to my chest they peeled off the outer edge of my ab muscles to get the blood supply to support the transplanted tissue.  So my abs were already super weak and damaged, and then I took longer to heal than anybody expected and it all atrophied more than it should have.  There's no way to know now if I actually had the beginnings of the hernia when I started physical therapy, but the weakness was definitely there, my physical therapist called it out on my first or second session - the beginnings of the alien.  She was super cautious about it.  The surgeon specifically told me to exercise with no restrictions, even when I pointed it out, and said that if it's still a problem we could "address it surgically".  And here we are.  

hernia update, now with more lung stuff!

Just got off the phone with Emily, the NP In my surgeon's office.  They got the report back from the scans.  So, my hernia is pretty effing complicated - apparently ileum, cecum, and appendix are all not where they are supposed to be.  According to wikipedia those things are all neighbors.  According to Emily, that's a lot of stuff all at once.

Also, turns out they are glad they accidentally took the chest CT because they saw some stuff there too.  Yay.  The node they tried to biopsy two years ago (that would be the one where I hallucinated I was being eaten by a cylon) is apparently still there, and now it has a friend in my left lung.  The old one is 7mm, and the new one is 3mm.  I'm not concerned about it - the only thing we knew for sure about the old one is that it isn't cancer.  I had no tumor markers in my bloodwork a couple weeks ago when I checked in with the oncologist, and shit happens in your lungs as you get older.

So, next steps for me - get on the phone with Stanford and order up copies of everything to be sent to UCSF.  Realistically, that means hand delivering everything. 

Next steps for them - surgeon is supposed to consult with GI surgeons on a surgical plan to put all my bits back where they're supposed to be.  I asked about wait times for an OR and mentioned that the last couple of times it took 4-5 weeks to get me in.  She laughed and said no, they're going to move somebody else to get me in sooner.  MUCH sooner.  I don't know if I'll have a date by this time tomorrow, but it sure would be nice.   

Note - since people tend to assume I'm really upset by all of this - I'm really not upset by all of this.  I'm happy and relieved to have answers and a way forward.  I have anxiety about it - right now it's 90% about getting to a scheduled surgery date without having an emergency beforehand, and 10% about getting the IV on surgery day, whenever it happens. Surgery itself and recovery?  Not concerned at all.  Been there.  Done that.  I know the terrain and how to prepare myself.  I'll be fine.  I also started trying to meditate a week ago (unrelated to all of this) and I think it's helping me here too.   

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I do think it's kind of funny that a couple months ago when this started I described it as "feeling like all my guts fell out."  I was not intending to be accurate.  Also, I think it's kind of funny how I've been relating to the TV show The Walking Dead.  A long time ago there was a comment in the show about zombie smell, and I watched that episode while my chest was rotting off after the mastectomy, and yes, it really didn't smell good.  And now, with all this the image that keeps popping into my head is the end of Nicholas a couple weeks ago.  

Hernia?

This day has been so fucked up, on so many levels.  I had an 11am appointment to see the surgeon.  The other two doctors (my psychiatrist and my oncologist) who have seen what I've been calling the alien pregnancy both thought it was fluid build up, and given everything I knew about the wound vac and how this thing has grown over the last couple of months, I assumed that too.  I also was assuming that I'd probably need surgery and maybe another wound vac to correct it long term. 

So I went in and saw Emily, the nurse practitioner in the office, and showed her the giant lump.  She agreed with the fluid buildup theory and said that it happens some times, hardly ever requires surgery, and sent me off to interventional radiology to get an ultrasound and install the drain.  YAY.  No surgery!  Relief today!  I was THRILLED. 

The most handsome doctor I have ever seen, quite possibly one of the most handsome men I have ever seen, like movie star handsome, took me into the little room to explain procedure.  He was very nice.  I changed into a gown and we went down to the room for the ultrasound.  There were two other docs there (it's a teaching hospital, there are always multiples), and the ultrasound dude.  I laid on the table, they set me up with a warm blanket, they're all chattering about their holiday plans.  They put the goop on me and start the machine, and about five seconds later, all at once, dead silence. 

I've had enough medical crap happen in the last couple of years that I recognize immediately when they're all trying not to telegraph exactly how bad it is.  Handsome doctor pointed at the screen and mumbled "peristalsis", and one of the others mumbled "ten centimeters?".  Everybody else left the room and handsome doc told me that I have a very large hernia, bowel is right under my skin, and that he would call ahead so the surgeon would know what was happening when I got back to the office. 

So I got back there, Emily said she'd sent the orders through for the CT I would need so they get an idea of how bad it is, said it's not an emergency today, but that if I have any new or bad pain, constipation, fever, or vomiting, to come into the ER immediately.  The girl at the front desk was looking up appointments for next week and I asked if there was prep for the scan I needed and said if there's a way to do it today I'd rather wait and get it done.  I had breakfast around 8, so I'd be safe to do the scan by 2pm.  They had an opening at 3:15.  Perfect.  So I went down to the other radiology department for the scan and camped out in their waiting room to wait for a couple of hours.

If you've never had a CT with an IV before, what they do is set up an IV ahead of time, and then when you get into the machine they push a contrast fluid in while they take the pictures.  There's a very disturbing warm sensation when they push it, it really feels like you just wet your pants.   I am a really hard stick - the last three surgeries they've tried both elbows and ended up having to go into my hand to set the initial line for anesthesia, and then they switched it to my foot once I was under and they could dig around with impunity.  

Left arm, she actually got the vein, but it hurt like hell, and an IV there shouldn't hurt after the initial stick.  I told her, and she tried the right arm.  And that's where I started to lose my shit.  A couple years ago, the second time we had to do the hand thing for chemo, the nurse didn't set the needle right, and I told her it hurt (like my left arm did today), and she told me it was fine, turned the chemo machine on and left the room.  And my hand immediately blew up to baseball size as poison was pumped straight in with nowhere access to my bloodstream. 

I basically have a PTSD response to IVs ever since then.  I also (stupidly, naively) didn't think to bring some ativan with me today (anti-anxiety med).  So she tries my right arm, and I'm starting to cry.  She can't get the vein and I start having a panic attack.  The nurse was very good, very professional in response to me, but I completely lost my shit.  By the time we got the thing set in my hand (basically in the joint at the base of my right index finger), I was hyperventilating and sobbing.  They could hear me in the waiting room. 

That experience is so strange.  It's not about pain.  Don't get me wrong, having somebody dig around in your arms and then your hand with a needle hurts like hell, but I've been in a lot worse pain many many many times in my life.  I know it doesn't hurt that badly, but my brain just cannot register it and I completely lose control of myself.  I think knowing that it's kind of ridiculous makes it worse. 

Finally got the thing in my hand.  They came to get me for the scan.  The woman administering it asked what the issue is and I told her about the hernia.  She mentioned that it was odd that they wanted a chest CT for a hernia, and I shrugged and showed her the swelling.  She said that maybe they are looking for issues with my diaphragm and went ahead and did the scan. 

When I last spoke to Emily she had assumed I wouldn't have the scan until next week, and I figured that since I was still there I would check in with her about this one, and confirm I had the right one. 

And then I had my second moment of dead silence in a room full of medical professionals today. 

Wrong scan.  I still hadn't eaten anything and asked if we could do the right one today.  There was a bunch of back and forth.  Apparently you can't do an IV contrast again within 48 hours.  More back and forth between the surgeon's office and radiology, and Emily recommended that I go home and do it next week.  I thought about and said that I would rather get everything that I could done today. 

So they decided they could do one with oral contrast only.  They gave me the stuff to drink and had me sit there for 45 minutes, and we got the abdominal CT done right before the hospital closed at 5:00.  It took me 97 minutes to drive home in traffic. 

And now I wait until some time next week for them to get a date for surgery on the calendar. 

physical therapy is done

I graduated from physical therapy yesterday.  It's not perfect, for sure, but I'm at the point where I can undress myself (this has actually been the hardest thing, getting a tighter t-shirt or sports bra off over my head), and I can comfortably do my old routine at the gym.  I do still have some major issues with my abs, so I'm not quite ready for pilates yet, but my physical therapist, Katie, has left me with a bunch of things I can do to continue to integrate my abs and core back together.  So, for the next couple of weeks, back to the  gym on my old schedule, MWF.  Then I'll be spending a week in San Francisco for Oracle Open World and JavaOne and will be taking a week off. I'm going to try to book an hour with my old trainer, who I haven't seen in a year for the first week in November, and then we'll see how long it takes to get back to pilates. 

I do still have at least one, maybe two surgeries left that I'd like to do early next year.  One is to fix a bit about my reconstruction.  Just a surface tweak.  That one for sure will be outpatient and probably won't keep me out of work for more than a couple of days.  The other one may be on my abs.  Something there might not be connected right, and if I can get there by doing the integration exercises (a whole lot of lifting weights while balancing on a foam roller), groovy, but if I can't, they'll go in an tweak that.  This one will be much less invasve than the surgery was a year ago, but it might involve a wound vac again.  JOY.

Either way there is actually light at the end of the tunnel now.  Could I possibly have my (new) normal life back by May 2016?  That would make this cancer nonsense a three year endeavor.  I'd like to be done soon. 

Back to the gym

I went back to the gym today for the first time since the surgery.  I've been doing physical therapy for a couple of months now and while I'm not done there, she cleared me to go back and lift weights (well, cybex weights) again, now that I'm strong enough to do the minimal weight on any of the machines I use.  It was really really good.  I keep track of my progress on a big clipboard like a dork so I have my records from October and December.  I went in and started a new card today.  We'll see how sore I am tomorrow, but I think I only lost a little ground on my legs (leg press, curl, hip adductor, hip abductor), which I'll chalk up to living in the house of stairs, and that I've been riding the stationary bike at home for a while, which I wasn't doing last fall because we didn't own it yet. 

My arms, as expected, were pretty weak, but I was comfortable.  Katie suggested that I add two more machines to my routine (tricep and bicep), which previously I was doing with free weights or with extra work in pilates.  The worst is actually my abs and low back, which is why I'm not starting pilates again yet.  I did the crunch machine at about half the weight I was pre-op, and that felt weird, but OK.  I started at about 60% of my old routine for the low back and that felt OK too. 

But, that kind of work doesn't really carry over into real life movement, and I basically got stuck on the leg press because I didn't have enough ab strength to execute the crunch and the twist to get off the thing.  I'm sure I looked ridiculous trying to figure my way out of it.  I would have yelled for help, but I figured it out after about 30 seconds. 

So for now I'll be continuing with physical therapy once or twice a week to work on integrative exercises - doing crunches, leg lifts, and bench presses on a foam roller to help everything knit back together, and then more flexibility for my arms and shoulders.  I'm doing fine day to day - hauling groceries and laundry again, but I still cannot get a tighter shirt or a sports bra off over my head.  So that's the next hill to climb. 

As for the surgical wounds, I think the one on my side finally closed for good, but I won't be surprised if it opened up again either.  There's three open spots, varying in size from a nickel to a quarter across my belly still.  They were sort of open divots for a while and have been filling in so they are almost level with the surface.  I think once they get there they will finally scab over for good.  

Pain comes and goes.  I still take gabapentin twice a day for nerve pain, and I can definitely tell by 10am if I miss my morning dose.  I get this weird burning sensation too, right across and through the middle of my abdomen.  It's worse in the afternoons.  Most of the time I just live with it.  It's bad enough to take Alleve maybe twice a week to get to sleep.

A visit with the surgeon.

I had a check up appointment with the plastic surgeon on Friday.  For those playing along at home, I could have gestated a baby in the time since I had my surgery (November 10, 2014).  My surgical wounds are thisclose to being healed. I'm down to a few scabs and one raw area about the size of a 50 cent piece on my belly and an open/irritated spot on my left side where there was a surgical drain (it was pulled in December), but it's in a new fold of skin created by this surgery, and it gets irritated every time I wear a bra.  I may literally have it until we do the next surgery.  And now there might be two surgeries.

I'm running around with bandages off whenever I'm home, to encourage that last bit to scab over, but then I bandage it at night or if I'm wearing clothes.  I am grateful for the current heatwave, when I was trying to dry stuff out six months ago I was freezing my ass off and our heating bills were insane.

Physical therapy continues to roll along.  I'm making good progress on strength, balance, and overall core stuff.  We still need to work on flexibility so I can get my shirts off without wrecking them.

I don't remember if I've mentioned this here, but I pretty much cannot wear pants anymore except sweats to the gym.  There's some goofiness with my abs where if I contract my lower body (like finishing a crunch or lifting both legs in the air) my belly poofs out - Bob and I started calling it my "alien".  When I'm standing up, some of that hangs a little lower than we thought it would, and is a little more centered than we thought it would be, and I basically look pregnant.

So if I wear pants I either have to yoink them up to my boobs for them to stay in place over the bulge, or they sag down below the bulge, making the alien look even more like a pregnancy. So I wear dresses or skirts I can wear up high all the time now. 

My physical therapist was worried about working that area without a specific green light from my surgeon, so I've been doing modified crunches on a foam roll and a lot of work on a balance ball, but haven't really started with the full core engagement stuff I want to do to get back to pilates. 

The surgeon said no restrictions, don't worry if it's ballooning up, as I get stronger it may resolve itself, or we may want to "address it surgically" in a few months. 

So that's where I am.  I still have a pretty significant amount of pain through my middle, but gabapentin (quiets down the busted nerve chatter) mostly keeps it under control. 

Expect another surgery to address my flappy sides and maybe my alien at some date TBD, I'd expect early 2016, realistically.  My side flaps would probably be an outpatient thing, the alien might be more than that.  We'll see. 

Still with the bandages!

Overall I'm doing pretty well, except I had a small setback a couple weeks ago.  I strongly suggest that you not google images for wound maceration.  It ain't pretty, and I've got the evidence across about 4x6 inches of my belly.  Basically if you don't get bandages changed fast enough the skin around the wound can stay wet and start breaking down.  I've been using this super fancy Mepilex bandages that are about $20 each because they are super absorbent, stay on really well, but don't hurt at all to remove.  For a few weeks we were down to only changing them once a week.  So Bob went out of town for a long weekend for work and I thought I'd be fine for four days.

I was wrong.    I can't change these bandages myself. It started burning the night before he came back, and I we removed it as soon as he was in the house, but the damage was done and it's ugly.  I would guess that it has lengthened the amount of time I'll spend with this thing by about a month. 

For the last couple of weeks it's been consistently warm enough to just not wear clothes, so I've been doing that during the day to keep it open to the air and it's starting to dry out, but it's still too goopy to sleep unbandaged at night. 

There's also a hole in my left side where there was a surgical drain, and that's never healed.  At this point I think that's mostly because it's exactly under the bottom band of my bra.  So I've been instructed not to wear one for a few weeks until it heals over.  So I'm leaving the house for physical therapy and grocery shopping and that's about it until it has some stable skin over it. 

I'm into my fourth week of physical therapy.  Today I bench pressed 8 pounds.  Seriously.  It was work.  Four weeks ago I couldn't hold one pound weights over my head without legitimate fear that I would lose control and drop them.  Today I did it with a four pound weight in each hand, while laying down on a foam roller that ran down the length of my spine (doing that opens up the chest more than I can do on my own yet, and forces me to engage more muscles in my back to balance).  When I can do ten pounds in another few weeks I'll be ready to go back and get on the Cybex at the gym.  When I can do five sets of ten crunches and my skin is healed on my belly,  I'll be ready to start pilates again.  I'm still not sure when that will be. 

My physical therapist is great.  I met her a year ago when I was looking for help with my knee and she was fantastic then, so I requested her this time around.  It was really nice to just step back into that relationship even though we're doing a totally different thing this time.  She knows me and what motivates me, and we talk books when I'm resting between sets.  I expect I'll be seeing her for several more months, even beyond when I start pilates.  I'm gaining strength but still can't do really basic things like get a tight t-shirt off over my head.  On is no problem, but I can't stretch my arms and shoulders enough to get it back off without pulling an arm in through the armhole, which is destructive to shirts and sports bras.  But I'm a lot closer now than I've been since the original mastectomy in 2013. 

My oncology checkin was a few weeks ago.  I'm all good there, except my liver numbers were a little off because I've been taking such high doses of NSAIDs for so long.  She wanted me off of them for a while, so I took a break.  I think I've taken four in the last three weeks when the wound pain got to be too much to bear.  I'm taking gabapentin (technically a seizure med) for the nerve pain associated with healing and that has helped. I don't want to take it forever though - it's one of those meds that could give me seizures if I don't step down carefully when it's time to go off.  I don't like being that reliant on something that could hurt me if I miss a pill. 

So, mostly good.  Wish it was happening faster.  Honestly though, the relief at being able to walk around the house without a bandage during the day is phenomenal.  It is a very small thing in the face of everything else that is happened, but having some sort of tape or bandage stuck in your pubes 24x7 for eight solid months is an annoying slog all its own.  Glad that bit's over.