No magic bullets

I met with the Infectious Disease doctor that my surgeon referred me to.  Officially, what I have is a Staphylococcus aureus infection.  Apparently it likes to stick to surgical mesh. 

I really liked her, and she and the surgeon have worked together on several cases identical to mine.  Each patient they've worked with has been on oral antibiotics for a few months to a year or two before doing the surgery, and then she prescribes 2-3 weeks of IV antibiotics post op.  Every patient has been cured. 

Things I don't know yet - if this is going to be one surgery to do it all or multiple surgeries to do the removal plus reconstruction, and also what material they would reconstruct with.  Also, if the IV antibiotics are inpatient or outpatient. 

Also, everybody agrees that the surgery would be safer and the outcome would be better if I did a sleeve gastrectomy and lost 50-100 pounds prior to removing the mesh.  But also that nobody is going to do that surgery while I have an active infection. 

One further thing I'm looking into is doing one of those crazy managed liquid diets (like Oprah did 30 years ago) and then doing a gastrectomy after the mesh removal.  The problem isn't losing weight.  the problem is maintaining the loss.  (See also, what Oprah did 30 years ago.)  So I'm going to talk to somebody in bariatrics about the sensibility of doing something like that given all the other factors here. 

So now I'm on doxycycline hyclate.  It's making me mildly nauseated, but I can live with that for a few months if I need to.  It's buying me time to plan when we do the surgery and to talk to the bariatrics people.  

Bob and I agreed that overall there's no point in delaying this significantly.  After I spend a week or two on these meds I'll decide if I feel well enough to travel - I'd like to go see my parents for a week in August or September, and then Bob and I have a trip planned with his family in October.   I think we'll either try to schedule surgery for early November or January.  

Not cancer, but the adjacent nightmare continues.

I thought I was done.  It's been three and a half years since the last time I wrote here.  Since then I've changed jobs twice, moved once.  Lost an old friend.  Gained some new ones.  Lost some pets, gained some new ones.  Life has been mostly good. Still fatigued a lot of the time, and it seemed to be worse lately.  Now we know why. 

On May 28 something really weird happened - the weakest part of my big scar from the reconstruction and hernia operations blew out.  I didn't know that could happen.  It's been healed for over three years.  The skin looked stretched out like a popped blister, I might not have known there was a hole there at all except that it leaked enough fluid to completely soak through my pants and my shirt.  No blood, just clear, slightly yellow fluid.  No new pain.  It was Tuesday night and I felt fine, so we decided to go to urgent care in the morning.  It continued leaking all night. 

We spent the whole day there and they did a CT scan that indicated cellulitis in my abdominal wall, but no big pockets of fluid, just small amounts scattered around my abdomen.  Since I seemed to be fine they gave me Keflex (antibiotic) and said that it should clear up the cellulitis and that might stop the fluid buildup.  The hope was that it would heal over and that would be the end of it.  They also referred me to one of the surgery clinics at Highland in case it didn't.  

I took the antibiotics, it did slow down and then heal over.  72 hours after I finished the antibiotics the fluid built up again and the new scar blew out.  This time there was some blood in the fluid and the hole was about the size of a pencil eraser.  I went to the urgent clinic at my GPs office and one of the docs there poked around, literally, with one of those giant q-tip things.   She didn't know what to make of it, but I had already made the appointment at Highland for July 9 and she didn't want to give me more antibiotics if we weren't sure I needed them. 

Nine days later, the fluid turned cloudy and viscous, and I went back, but there's still nothing she could pinpoint.  She did a culture and it came back with "scant" amounts of all the normal stuff she expected to see.  So I just kept changing bandages and waiting for July 9. 

Bob took the day off work so he could go with me.  The surgeons there looked at my scan and said they think the mesh that was used in the hernia repair is infected and it needs to come out, and that this would be a "multi-stage" procedure.  They put me back on Keflex to help keep it under control. 

I mentioned that I'd also been thinking about doing a bariatric procedure (sleeve gastrectomy) and they said if I could get that done first, it would would help my recovery from the mesh procedure, which makes sense.  Less weight would mean less pressure on the reconstruction, and also less risk in the bigger surgery overall.  But they don't do that there.  (And while they were lovely and professional, no way in hell would I want to be a patient there unless I had a bullet or ten in me.) 

We all agreed that going to UCSF or Stanford would be the best choice.  Both managed to squeeze me in this week, via their breast cancer and reconstruction clinics since I've been a patient at both. 

Stanford was Tuesday.  I really liked the surgeon.  (https://profiles.stanford.edu/rahim-nazerali)

I really didn't like what he had to say - they have to cut the mesh out with wide margins to make sure they get it all.  Since the muscle grows into it (by design, that's why you use it) it doesn't show up on scans.  Also, there are two pieces, not just one.  Apparently Sbitany used it to close main incision after the hernia repair as well.  It all has to come out, which means most of the right side of my abdominal wall has to come out. 

He said that due to how extreme the surgery is, he wants me to see the Infectious Disease clinic first, to see if there's anything they want to try.  He also said that the first thing they'll tell me is to get the mesh out.  Overall it's a long shot but better to be thorough. 

Thursday I went to UCSF.  That's where the original surgery and reconstruction was, but the surgeon who did those is no longer there, he's in New York now. 

I've never had the experience of doing an apples to apples comparison of two doctors before - for the same specific problem in the same week.  When I had the cancer diagnosis I talked to an oncologist (Wexler) and then went to the tumor board at Stanford for my second opinion.  Same problem, but tumor board is very intentionally a different experience. 

So, UCSF.  I didn't like her at all.  (https://plastic.surgery.ucsf.edu/faculty/faculty/esther-a-kim,-md.aspx) She had a student take my history.  That's fine in general, to be expected at a teaching hospital, but then she clearly didn't actually read or talk through it.  Her take is that it's probably just a suture left behind that needs to come out and that she'd want to just open up the scar as an outpatient exploratory procedure.  But then she also said something about antibiotics and healing that told me she hadn't paid attention to what I'd told the student.  And she was was just rude. 

Bob was on the phone on speaker because he couldn't take the day off to be there in person, and she didn't acknowledge him, at all.  It was weird. 

I know it's dumb to pick a surgeon (or a lawyer, or a politician) based on who you'd want to have a beer with and I wanted to check that impression against what Bob thought.  He pointed out that Sbitany (the original plastic surgeon) was a jackass, but he was thorough and he paid attention.  I didn't like the guy either, but I felt he took me and my concerns seriously.  She didn't. 

So waste of a day, but an easy choice.  I'm doing this at Stanford, and I expect to see somone in Infectious Disease this week, hopefully Tuesday. 

I feel like crap, and I'm still oozing pus out of that scar even though I've been back on the antibiotics for 10 days now. 

New Year, New Tummy

It has been a while.  My surgery was December 21.  My plastic surgeon worked with the GI team at UCSF.  They went in using the same incision across my pelvis (sort of top of hip bone to the top of the other hip bone) as they made a year ago for the reconstruction.  I should have Bob measure it again, but I think it's about 10-12 inches.  They put all my internals back where they are supposed to be and then sewed in a bit piece of mesh to keep it all in place behind the abdominal wall.

When they closed, the plastic surgeon basically gave me a tummy tuck.  I wasn't expecting that - but I'm really happy he did it.  He took out about four inches of skin and tissue that was above my old incision, which includes the massive wad of scar tissue from the wound vac, and my belly button (which had migrated a couple inches to the left of center with the wound vac and hernia damage).  I don't care about the belly button, but losing that scar tissue is amazing.  It looks so much better. 

They also did the surgery with an epidural (and general anesthesia), which was new for me.  It didn't make a difference to me until I slept off the general.  I was still pretty loopy in recovery and when they moved me to my room (HA.  Shared space with four other patients).  I told Bob to go home because I kept dozing off.  But when I woke up I was AWAKE.  No pain meds.  The worst pain I had was from the IVs in both hands.  I was easily walking the next day. 

Late Tuesday night they moved me to a different room, shared with one elderly woman, which is when things started to go downhill.  She had to have the TV on loud (I could clearly hear dialog even though I was wearing my earplugs), and she talked back to it and herself constantly.  Because I didn't have pain meds to knock me out, I couldn't sleep at all, and basically lost my shit around 2am.  They gave me some ativan which helped.  They decided to try to pull the epidural on Thursday morning (Christmas Eve if you're keeping track).  They had a big plan to start dosing me with oxycodone on a schedule and turn the drip off.  Only they decided to do this during shift change and while the docs were doing rounds and everything fell apart.  They turned off the epidural 45 minutes before they delivered the oxycodone.  By the time it got there I was in so much pain I couldn't move.  It took the max doses they would give me of both oxycodone and dilaudid for about five hours before it got under control.  I was pissed and used that to get into a private room when one opened up. 

The pain docs decided to turn the epidural back on since I still had the line in and then ease me off slowly through the day on Friday (Christmas Day).  OK.  Except once again they didn't communicate that with the night nurse and so she started delivering dilaudid and turning the epidural down overnight.  At that point it didn't really matter to me from a pain perspective, because at least the dialudid was on time, but it's really irritating that they cannot get their shit together and communicate clearly to each other. 

They finally pulled the epidural out around noon on Friday.  They pulled the foley around the same time and the only thing left for me was to poop and to climb stairs (so I could come home safely, there's a full flight between my front door and a bathroom).  Stairs went fine.  The other, not so much.  Laxatives, prune juice, softeners, two suppositories and an enema before anything happened.  And then not much happened.  But it was enough for me to go home on Saturday afternoon. 

So now I've been home for six days.  Things are going well.  I can spend six or seven hours a day out of bed, sitting in my recliner or on the couch.  Once the constipation cleared up a lot of my pain did too, so I've been dialing back on the pain meds.  I was taking 20 mg oxycodone every three hours when I came home.  Now I'm down to 10 mg every 2:40 with no problem.  I'm going to go through another cycle at that dose to be sure and then bump it to 2:50.  If that's all good I'll be at 3 hours again at bed time tonight.  I don't expect to be able to halve it again over the next week, but I'm glad I didn't have to stay at that dose for long. 

I have one surgical drain and I'm wearing a belly binder for six weeks.  My next check up with the surgeon is a week  from today, January 8.  I expect him to pull the drain out at that time. 

So, overall things are really good now.  I'm hoping this means that 2016 is when I leave all the cancer related stuff behind and really move on with my life.  It's time.

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.