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. 

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. 

Two Years Now

The dates aren't exact, but it was the Saturday of Memorial Day weekend two years ago that I knew I had cancer.  Not when I was diagnosed, but when I knew.  On Memorial Day I posted this in another online space:

I've been debating about writing this for a while a couple of days now, because it will be days or weeks before I know anything, and it feels stupid to fly into a panic now, but that's where I am.

Early last week I found a lump.  A ghost of a thing in my left breast that is different than anything that's been there before.  I worried a bit and made Bob feel around for it.  He said he didn't feel anything substantial but that I should make an appointment with the doc to check it out.  I have my mammogram scheduled for the week after next anyway.

Saturday morning in the shower I wasn't even feeling around for it, it was just there.  Right at the surface, in my breast, next to my armpit.  Feels like a golf ball, hard and a little bumpy, about half an inch below the surface of my skin.  Of course my doctor's office is closed for the long weekend.  I called the paging service and talked to a doc who said there's nothing anybody can do before Tuesday because of the holiday, and this is not the sort of thing that can be rushed along by a trip to the E.R.  So I'm going in for an urgent care appointment in the morning, and I expect she'll order a biopsy immediately.

I haven't told my parents.  If it's nothing I don't want them to worry.  If it's something I want to have some answers before I talk to them.

Bob's being great.  I'm not doing so well.  I can handle stress.  I can handle pain.  I can handle things going catastrophically wrong.  I can't handle not knowing, and this is the worst not-knowing I've ever experienced.  

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

I stand by that original assessment.  Through everything, waiting was the worst part.  It still is.  Every 90 days I get bloodwork and go see the oncologist to check on my tumor markers and she taps around my body looking for new bone pain, since that is where it's most likely to recur if it comes back.  

Since then I've had eight or nine biopsies on my breast, surgery to install a port on my sternum, surgery to remove my breasts and ovaries and fallopian tubes and lymph nodes, surgery to reconstruct my breasts, surgery to revise the original reconstruction when it didn't heal right, and I have one more to tweak the final result, some time next year.  32 weeks of chemo. 

I've had a complete failure of my lungs processing oxygen which resulted in a week long stay in the pulmonary ICU at Stanford, which included a lung biopsy and pneumothorax (and massive hallucinations from fentanyl), and another test where they kept me awake and shoved a camera down my throat so we could see inside my lungs.  I was coughing so much it sounded like bronchitis but they think it was only to get oxygen.  Watching my lungs squeeze on camera was one of the coolest things I've ever seen.  But I never want to do it again and generally don't recommend it as an entertainment.  The coughing was so bad I became incontinent and pissed myself on the table.  Not fun.  I ended up with oxygen tanks at home for almost a year.  And I also had a different bad reaction to taxol that landed me in the E.R. after I scratched myself bloody and had hives all over my body.  

I've had two kidney infections, including a week hospitalization for one of them.  Seven months total with a wound vacuum attached to my chest or stomach. Watched (and smelled) the flesh on my chest die and fall off.  Prescriptions for every kind of drug under the sun.  It still looks like a pharmacy in my office.  A bloodclot in my arm. I've lost count of the number of MRIs at this point.  I've also had a PET scan and a CAT scan, at least once each.  

I also got married (twice!), adopted a wonderful dog, studied for a major professional certification (PMP) and passed the test on the first try, and was able to work for 11 out of the last 24 months.  

Now I've got one open wound that's about 2x4 cm, and I'm having some bad nerve pain as all the internal damage starts to heal.  I'm taking Neurontin for that instead of opiates and it seems to be helping.  When it comes on it feels like a crazy itch that evolves into throbbing pain over a couple of hours.  It's not constant, it's happened maybe 3 or 4 times in the last week.  Starting today I'm on Neurontin 24/7 for a month and it should prevent most of that from happening. 

I've been back at work for a couple of months now and feel like most of it is back to normal.  Whatever that is.  It's been a completely crazy couple of years.  I feel very lucky to be here on this side of it, basically intact mentally and emotionally, if not physically.  I am lucky to be here at all. 

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. 

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.