It has been a few days since my last post and I apologize for falling off the task wagon.  On Sunday I continued my steady path of screwing myself up on my medications and causing myself a lot more hassle and pain.  Since I got so behind on my pain medication on Saturday, I decided that on Sunday I would try to go completely without it.  I have to say that the day (and my pain) was manageable until about nap time.  Sleeping is such a problem these days.  I am a life long stomach sleeper and trying to sleep on my back on this crazy contour pillow (to help keep my weight evenly distributed) is weird.  The contour pillow is comfortable, but it is very narrow.  So, even though I cannot yet roll over on either side, every time I do try to roll over I feel like I am falling completely off of my bed.  I have one of those jarring, falling dreams, wake up, flail my arms (as far as they will flail), and then jerk my arms back to my sides.  It doesn’t sound like much, but it is exhausting.  Anyway, Sunday, no pain medication = mistake.  I feel that there are just too many perchance things in my life to be going pain medication free.  Such as my cats still jumping on me; one (or both) of the girls discovering my drainage tube hanging and giving it a tug; and, running into stuff around my house because I’m not used to walking around hunched over and with my arms close at my sides.

The discomfort of a medication free Sunday rolled over into Monday (because I didn’t sleep well and was up about every 3 hours), and I had a bit of a breakdown at my breast oncologist follow up.  As always, my surgeon (Dr. Javid) and her surgical resident were doing their intake and asked me how I was feeling.  And, I should’ve known I would, I just started crying.  I didn’t realize how frustrated I was with my current state.  I was hearing myself tell Dr. Javid how I’m so frustrated with being unable to do simple things, like walk into our neighborhood “village” without consequences and just being so lethargic.  I don’t know that I’ve actively thought about these things, so it was a surprise that I vocalized them so quickly.  But they are true.  I don’t like just sitting around the house all day.  I feel well enough to walk a mile, or more, but if I did so my drain output would go through the roof and my back would be killing me from walking like Quasimodo.  I hate not being able to care for my girls and myself.  It’s a drag.  However, it was good to vocalize these things, realize that I needed to work on my patience, and get on with life.  Because there is so much life.  And, now I know for certain, so much BREAST CANCER FREE LIFE. Dr. Javid gave me my pathology results from my prophylactic mastectomy and all of my tissue was free and clear of cancer.  So all of this wasn’t for naught.  Our goal of going through this whole process so that I wouldn’t get breast cancer has worked.  Because I no longer have breasts, I am no longer at a ridiculously elevated risk of having breast cancer.  And it is an amazing feeling!  I’ve been thinking a lot about what an arduous process this has been, and I’m not even a full two weeks into recovery.  I can’t imagine what months (if not longer) of treatment, surgery, and recovery would do to me.  Cancer survivors are totally warriors.  They’re made of much tougher stuff than I am; that’s for certain.

Today (Tuesday) I had my follow-up at the reconstructive surgeon’s office.  It was a brief meeting, but mostly because I bombarded Dr. Javid with me being me the day prior.  Since I’d already unloaded on her and asked a lot of questions during that appointment, I didn’t have a ton of questions for Dr. Daniel Liu.  I did ask for a surgical bra since the surgical camisole wasn’t cutting the mustard, which I received.  I have to say that the surgical bra beats the camisole for me.  It doesn’t have anywhere to put the JP Drains, but since mine are out that is a non-issue.  I can close the surgical bra, wear it to bed so my “flaps” aren’t falling to the way side and causing additional  pain in my ribs and sternum.  And I can wear it under my clothes for a little bit more protection for my tenderness.  I was surprised by Dr. Liu telling me that the swelling on my left “flap” and underarm wouldn’t resolve for anywhere from 2 to 4 months.  I was thinking it would be maybe 2 weeks; but, no such luck.  It is going to take a couple of months for my surgical sites to settle and my body to reabsorb and process the excess fluid that built up in that pocket.  It hasn’t gotten worse, but the discomfort from the swelling is really bothersome and the area is still very, very tender.  Dr. Liu did remove my left abdominal JP Drain so I only have one left to go.  Dr. Liu told me to expect that since I’m down to one drain I should expect the output on the remaining drain to go up for the first few days; but he believes I’ll be ready to have that drain out within two weeks.

One thing I discussed with both Drs. Javid and Liu was my fluid output.  I was frustrated by it this entire week.  My goal was to get all of my drains out as soon as possible; they’re an uncomfortable hassle.  However, I know that they serve an important function.  So, as discussed, I was trying to decrease my physical activity in order to keep my fluid output low; but it didn’t work.  Both doctors agreed that any fluid produced is fluid that should come out via the drains.  So even if my activity created a large upswing in my output, that was a good thing.  Dr. Javid (I think) equated it to wringing out a sponge.  Sometimes you have to move the sponge around in every direction to get all of the liquid out of it.  So I’m going to just deal with the hassle of this lone drain, walk as much as I feel is healthy for me, and see how long it takes for my excess fluid to work its way out and, eventually, for me to get this bad boy out.

Before posting my update photos I wanted to post about trying to mother our girls while going through this process.  It is hard; every second of not being able to pick up our girls, hold them, play with them is just as challenging (if not more so) than I thought it would be.  I cannot wait for that part of this to be over.  I can’t even do so much as change a diaper (because I can’t lift their legs/bottoms up) or walk them down the stairs.  Heaven forbid the girls were to slip on the stairs but, if they did, I don’t have the strength right now to effectively hold on to them and stop them from falling further.  I have been cheating a bit and sitting down on the floor cross legged so they can sit on my lap and we can cuddle.  But this comes at a price.  We’re used to big, cozy, bear hugs and snuggling.  We try to remind the girls that they need to be gentle with me and that I have an “owie”, but it is just the nature of having a child in your lap that they will want to rest their head on your chest.  I will take the hit and let them do it; it hurts my sternum and my ribs quite a bit.  But I’m like a cuddle junkie getting a fix.  It’s totally worth it.  It hurts.  But it’s totally worth it.  I can still do story time, sing nursery rhymes, help out a little with meals, but I truly am limited in my ability to mother.  It’s been great having my sisters and our nanny to help care for the girls and keep them happy.  But I can’t wait for the day when me and the little ladies fly solo.

Finally, I found a good bedtime workaround for my abdominal JP Drains.  Figures that it would occur to me when I’m down to 1 drain.  I’m sleeping with my bathrobe on (instead of pajamas because they’re another complication) and decided to turn my pockets inside out.  I then put my drains in my out turned pockets so that they stay inside the robe with me and tucked away.  I have also put a little pill case in my robe pocket for my middle of the night medication dosages.  I set my phone alarm for every 6 hours for my pain medication.  If it goes off when I’m in bed, I just reach in my robe pocket and take out a pill.  They’re small enough that I don’t even need a sip of water to take it.  I was just feeling smart for thinking of these things and thought I would share them with anyone that may find it useful in the future.

Scary stuff below…

Abdominal incision day 13

Left side, day 13

Right side, day 13, last remaining JP Drain!

Full frontal, Black Dahlia-esque

Nifty bathrobe drain pocket

Close up of tissue transfer for future nipple reconstruction