wound vac done, maybe

So it's off - now I've got "wet-to-dry" dressings on which is just gauze soaked in saline solution.  I'm supposed to let it be out in the air a couple of hours a day if I can, so tonight I took a shower after dinner and let it air dry while we watched TV.  It isn't all the way healed yet, but it's close.  I definitely need a break from the thing, I've got really itchy yeast all over my chest where the plastic dressings were and that needs to heal completely.  But, I've decided I may let them put the thing back on me on Friday for another week if it will wrap this up faster.

The approval for chemo came in from the insurance company late this afternoon, so tomorrow I have bloodwork in the morning, and then I start again on Wednesday.  Good news this time, the infusion is only going to take an hour instead of three or four. 

When it's all done it will be 32 weeks of chemo in 11 months.  I'm not nervous about it this time, I'm kind of a pro at this point. 

The end is in sight, maybe?

I am not hooked up to the wound vac today.  Reason?  Yeast.  What I thought was just plain skin irritation from the adhesive kept getting worse and worse.  I've been taking vicodin round the clock since Wednesday afternoon because it got so itchy it was actually painful and I accidentally scratched enough to break the vacuum seal on my dressings.  I didn't even have to tell the doc this morning when I saw her, she knew what it was when she pulled the dressing off and told me to take the weekend off from the vacuum.  So I've got a cream, a powder, and a pill to take for a few days, and then back to the vacuum on Monday. 

It is so weird to be untethered, I've gotten used to it.  Even better news, she thinks I'll only be using the vacuum for another week, and that I should be clear to start chemo a week from Tuesday.  I'm trying not to get my hopes up too high about that.  I don't need another big disappointment right now.  But for the moment, I'm happy to be free of the tubes and the plastic tape on my chest and the noise and weight of the vacuum for a couple of days. 

well, screw assumptions

Last week I posted some assumptions about timelines, but then I saw a nurse who finally said something other than "it'll just be a couple more weeks" which throws those assumptions off, possibly by as much as two months. 

Because I am tired and lazy, I shall now repurpose part of an email I wrote earlier today: 

Giant holes in my chest are shrinking.  They are now 14x2.5 cm on one side and 10x1 cm on the other. 

I still stink, but not nearly as bad.  The surgeon cut off a bunch of the necrotic tissue to allow the vac to work the last time I was in there, but I guess there is some more developing as the bottom of the hole in my chest fills in?  I don't know.  The nurse assures me it's normal, but the doc will have to cut it out again next time I see her (week from Friday) so the stink is creeping back. 

I saw the shrink for the first time yesterday and he thinks the Ativan is making the depression worse, so he wants to step me down off of it and start me on neurontin, starting tonight.  It's officially a seizure med for epileptics but off label it's good for insomnia apparently, and I was already going to have to take it at some point for the neuropathy in my feet.   Apparently it also helps with night sweats (yay instant menopause), so it could be the magic bullet.  It won't necessarily make me feel better in and of itself, but if I can sleep better and stop the benzos I might do better anyway.  We'll see.

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I just took the first neurontin and am going to head for bed.  I have to be up at 8 to start my new dressing change routine so I'm ready for the nurse at 9:

1. Take pain meds (tomorrow it will be 2 percocets).

2. Take a hot shower and let the water flow over the tape for about 20 minutes while I try to pick up the edges of the tape.

3. Dry off and lay back down in bed while Bob cuts the tubing from the vacuum and injects saline solution back up the line into the foam in my chest.

4. Hold a hot, damp towel over the tape on my chest until the nurse gets here.

The idea is to get as much of the tape loose before the nurse gets here as possible to reduce the pain I'm having when we rip it off and take the foam out.  My skin has always been super thin and sensitive - I break out in hives at the drop of a hat.  Applying and removing the tape required to make a vacuum seal three times a week is taking it's toll.  My skin is starting to chap, blister, and tear a little bit, and we can't put the tape someplace else, it has to be where it is for the vacuum to work.

So the goal is actually two things - reduce the trauma to my skin and reduce the amount of pain meds I need to take, so I can cut my opiate usage in half.

I really want my brain back.  I hope this works.  

Onward

We went to see the surgeon this morning.  She took the wound vac dressings off and cut off all the dead tissue that was on my chest.  The vacuum will work better without it there.  She thought it looked good and sent me home packed with gauze again.  The nurse came by this afternoon and spent an hour hooking me up to the vac again.  She also said it looked good.  "Beefy" was her word, and I am more than a bit grossed out by that, but if she's happy, I'm happy.   I'm also happy because with all that tissue debrided I don't stink nearly as bad.  I still don't smell great - I can't wear deodorant or shower right now, but that tissue was waking me up with the stench and there was nothing I could do about it.  Now cleaning up with baby wipes seems to be handling the job OK. 

The cats are completely obsessed with the tubing and the machine.  It makes funny, unpredictable noises (kind of like a coffee percolater) and as it pulls drops of liquid through the tubing the cats watch and chase them.  The tubing is strong and replaced completely every couple of days so I'm not worried about it.  It's just gross and funny to watch. 

We also drove into the city yesterday to see the plastic surgeon.  He said he agreed with everybody else that we just did the surgery too close after chemo and thinks it will be fine if we delay it for a few months after my next course.  So he wants to see me again a month after I'm done with it and then we'll look at a real schedule. 

So, making a couple of large assumptions about how long I have left on the vac and that I'll respond OK to chemo, if everything goes OK I'll probably be ready to start chemo the last week in March or early April and be done around the end of June.  I'll need a few weeks to recuperate from that but should be able to go back to work at the end of July, and then take a much shorter leave (probably 8-12 weeks) for reconstruction in the fall. I can live with that. 

I'm finally feeling able to start dealing with wedding stuff again.  I'll be putting some time in on that this weekend, I hope. 

Wound vac, day three

The nurse came over on Saturday to do the first installation.  It took about three hours.  At the surface of my skin there's a little more than two square inches that's open on the left side, and a little more than a square inch on the right, but under the skin the openings on each side are five or six times bigger.  The way she measured it was by sticking a q-tip in and measuring how far it was until she met resistance.  Then she cut the foam to size, pushed it into the cavity, and sealed it off.  Now I have a tube coming out of each side of my chest, then they are taped together on my stomach and meet with a y connector.  I have about six feet of play between me and the machine, so I set it on the floor to sleep and I have enough room to turn over.  Otherwise I carry it around with me or wear it around my waist.   

The suction is less comfortable than the gauze was, but overall this is more comfortable than the gauze stuffing and then wrapping myself up in an ace wrap to keep it all together that we were doing.  It's also nice to be dry - the gauze would soak through and my skin was getting really chafed from being constantly damp and rubbing on the ace wrap. 

We did the first dressing change yesterday.  This time three nurses came - the one from Saturday, a wound expert, and a trainee.  It's supposed to be really painful so I took two percocets about an hour before they got here.  It was painful.  This time it only took about an hour and then I slept for the rest of the afternoon. 

The good news is that although I still need them for the dressing changes a couple days a week, I've been able to get to sleep without taking pain meds for three nights now. 

They come back tomorrow for dressing change number two, and we should know if there's more progress.  Thursday we go meet with the plastic surgeon to talk about reconstruction again. 

It was supposed to happen yesterday.  I cannot imagine trying to go through with it feeling like I do.  I'm glad it was postponed.