Carbo, round two and a reboot at the gym.

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

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

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

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

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

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

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

Progress continues

File under good news:

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

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

File under not-terrible but not-great news:

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

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

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

Vanity, Part Two

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

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

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

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

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

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

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

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

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

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

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

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

Back on the vac...

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

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

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

Oh, FFS.

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

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

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

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

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

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

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

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

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

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

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

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

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