Archives for posts with tag: Stage 1/Week 2

Am I the only person that thinks of this movie scene when I hear/say/read/write “two weeks”?

There’s really no breaking news to report when you’re blogging everyday about surgery recovery.  I’d offer to really ramp things up in the sake of maintaining interest, but that would be a complete disservice to my target audience (other women preparing for this surgery) and would probably involve some sort of self-inflicted wound.  I’m not into that kind of thing.  I’ve aged out of Emo.

Today I decided to walk as much as I wanted, which turned out to not be very much walking.  My sister, Angie, has replaced my sister, Alyssa, as my caretaker and walking companion.  Writing that sentence makes me feel about 65 years older than I am.  But taking stool softener and eating bran cereal two times a day makes me feel 70 years old.  Back to the story; Angie and I walked from my house to the pharmacy because I have a hot (temperature hot, not sexy hot) rash on my abdomen driving me crazy.  We then walked to Starbucks to meet our nanny and my two, cutie pie girls.  We hung out at Starbucks long enough for the girls to throw every rail car for the train set on the ground, have a few fights, and for the weather to get worse.  Then we walked home.  This arduous journey totaled one whole mile.  I felt fine while we were walking, but I was ready for a nap when the girls’ took their nap at 1:30 p.m.

I find that I get tired more because of my medication than anything, but still being unable to take pain free deep breaths does affect my endurance.  Even on a measly one-mile walk, I get winded because I can’t take deep breaths without my ribs and sternum hurting.   I also get tired because I’m still not standing 100% upright.  I’m almost there, but my abdomen is still tight from surgery and impeding my ability to stand erect.  Being hunched over also causes discomfort in my lower back, hamstrings and hips.  It’s a lot like that song, “the back bone’s connected to the hip bone; the hip bone’s connected to the leg bone; the leg bone’s connected to the aching bone.”

Other than these aches, pains, and hot rash I’m doing pretty well.  My range of motion on my right side is much better than my left but my surgeons told me to expect that after the onset of the swelling.  I am very much interested to see how much my ROM improves before I start physical therapy.  Also, I still am sleeping (uncomfortably) on my back.  I asked my sisters and my friend, Emma, today, “What do back sleepers do with their arms?”  I can’t figure out a comfortable arrangement.  Cross them like a vampire?  Prayer style?  Holding my own hands?  As a back sleeper, it’s awkward trying to find a comfortable place to put my hands when I’m usually just laying on top of them.

Day 14 scariness ensues below…

Day 14 frontal photo. A little increase in swelling on my left flap.

Increased swelling on left side, Day 14.

Day 14 abdominal incision (and a lot of dry skin)

As far as I can raise my left arm on Day 14.

Range of motion on my right side is far better than the left. Day 14.

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

Today I am short on patience.  Yesterday I discussed instituting my “NAPA” to try and get both my fluid out put down and the swelling on my left flap to decrease.  After, literally, a day+ of doing as close to nothing as it gets (some indifferent teenagers have me beat, I’m sure), my output is still over 20cc on my left side drain and my left flap is so swollen that it’s completely enveloped my suture (photos below).  I took an extended nap, earlier in the day than usual, and screwed myself up on my medication schedule because I slept through my alarms to take them.  So, I think that sleeping through my ibuprofen dosage hasn’t helped my swelling decrease, and sleeping through my pain medication has me trying to dial it down even more so that I’m not any more uncomfortable than need be.

Today my sternum and ribs are all tremendously sore and bother some.  Just like when I first came out of surgery, it hurts to take deep breaths.  I’m not sure if I did something in my sleep or if this is something that will wax and wane, but it truly is jarring to try to inhale and be confronted with shooting pains.

I am over these drains.  I feel like a gun slinger, but with JP Drains in my holsters.  I’ve been trying to figure out the most ergonomic way to wear them and deal with them throughout the day, but they get caught on everything or I have to wear my pants too low so that they don’t catch and, in turn, end up trying to keep my pants on all day.  My surgical camisole, I think, was more meant for women who have JP Drains up top longer than I had.  Trying to store my abdominal drains in my surgical camisole has been a headache.  I also cannot zip the camisole over my super swollen left side, so I’m going without it today.  I’m hoping that my hanging “flaps” don’t invite more inflammation.

My follow up appointments are next week.  On Monday I have my appointment with my breast oncologist/surgeon (Dr. Javid) to get my pathology results.  On Tuesday I meet with someone from Dr. Louie’s team to check my reconstruction.  I need to poke around the I N T E R N E T S for additional questions to ask them other than, “when will the swelling go away?  when will you take these leaches out of me?”.

I’m a negative Nancy today.  (Nancy must’ve been one hell of a pessimist to get pegged with that.)

Aforementioned swelling

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The better behaved, much envied right side.

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Visible difference due to continued swelling.

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Used to be a gun slinger. Now this.

Today I have implemented my “No Action” plan of action (“NAPA”) in hopes of reducing my swelling, fluid output, and pain that keeps creeping up.  I have implemented the NAPA so well that I am wearing a bathrobe, post op accoutrements, and nothing else.  Maybe flip flops when walking around the house.  Alyssa helped me shower this morning, put on my bathrobe, and I’ve been the dude ever since just rolling around the house.  I haven’t gone on my walk yet today.  I was thinking about skipping it to see if it help decrease my fluid output, but it is such a painfully gorgeous spring day to be locked in the house.  So I think after I post this blog, I’ll nap and then go for a walk with the girls when they’re up from their nap.

I’m having these very weird phantom nipple pains and/or sensations.  It started happening the other day when I caught a chill getting out of the shower.  I felt all of my skin start to pimple as I was drying off and thought that I felt my left nipple constrict, like when I would get cold before (and had nipples).  It was so real that I had to look down and stare at my flaps to make sure it wasn’t happening.  But, alas, no goose pimpled skin on either flap and certainly no constricted nipples.  At least not on me.  The sensation is also starting to come back on my abdominal skin.  They told me I would have some numbness for a while but that it would gradually work it’s way back.  This sensation is not a welcomed one.  It goes from pins and needles, to mosquito bite like itching, to shooting, sharp pains.  Unfortunately, my pain medication, ibuprofen, nor the Tylenol is helping reduce these sensations.  I guess it’s a mixed blessing.  I can feel something, but that something does not feel good.

Wearing my abdominal binder has provided considerable relief for my back pain.  I wish that my nursing staff would’ve remembered to discharge me with it.  The downsides to wearing the binder are that it goes over my abdominal drains and moves up or down whenever I sit or stand.  This, in turn, tugs on my drainage tubes and sends me into a slight panic (that I’ve caught myself on something) and then just a few seconds of pain.

I also cannot handle this narcotic related constipation.  I remember being young and listening to adults talk about how important it was to be regular, particularly on bran cereal commercials.  As a child, bowel movements are something that you pay no mind.  Into adolescence and adulthood, it occasionally provides some very low brow humor but you start to appreciate that regularly having bowel movements is a sign of good health.  Not being able to go for days on end is an obscure curse I would wish on my enemies, but it is unfortunately my own problem at the moment.  I have started to try to space out my pain medication for longer stretches, giving my body some more time to process things without narcotics slowing it down.  I’ve also been taking a stool softener, eating a lot of dried fruit, and drinking as much water as I can remember to consume.  Last night my stool softener decided to finally work, but at 2 a.m.  There is nothing more terrifying than being woken from a dead sleep with the urgent need to poop.  Pre-surgery, no problem making it to the bathroom on time.  Now?  It takes me a good 2 minutes to get myself rolled out of bed, probably another 30 seconds to walk to the bathroom.  Luckily, there was no Trainspotting-esque incident.  Unfortunately, this is an everyday battle I’m facing while on pain medication.  It’s a short lived problem, though, since I was only prescribed pain medication through next week.

Below are my progress photos.  Once again, I’m giving you an out if you’re not into looking at the wreckage.

 

 

Frontal shot of healing progress. 2 drains remain in.

 

little to no swelling

 

Still swollen. Extra gauze for seepage from drain site.

 

Abdominal binder over my abdominal incision. Marsupial Pouch (by Turner Health Products) to hold my abdominal drains around my waist.

Today I ended up having to take an unscheduled trip back to the hospital. Over the past 48 hours, my left “flap” was obviously swelling. This morning I awoke and my flap was probably 50% bigger than the right. The evening prior I also had a low grade fever and, because of the swelling, some very dark bruising. Just to err on the side of caution, Dr. Louie’s team wanted me to come back in and be seen. I saw Dr. Liu (different than Dr. Louie) and was told that I had some fluid pooling around a drain site. Dr. Liu used a 60 gauge needle to drain the fluid and some blood from my left flap, and I almost immediately felt better as soon as he started to drain it. It was hard to find pockets of the fluid, so he had to move the needle around quite a bit. But I have/had absolutely no pain during the exam. It’s interesting trying to get used to having no sensation at all in my chest anymore. You anticipate pain, and there’s just nothing.

I was to the doctor and back within an hour. I was told to watch for any spreading redness as a sign of infection and any tissue turning black (necrosis). My left flap is still pretty swollen but I’m relieved to know that the skin and tissue transfer aren’t failing.

After this bit of a scare, I decided that I probably need to scale back my activities. I’m going to try and do a little less on my own and see if that helps my fluid decrease. Just because I can doesn’t mean I should.

I’ll post progress pictures tomorrow. I’m already tucked in for the night and sleepy.

Endless thanks to my BFF and personal super hero, Monell, for having the unfortunate luck of always taking me on emergency medical trips. What can I say? She’s always here when I need her. And she’s always amazing. Thank you Monell! You’re the best ambulance driver in Seattle!!!

More tomorrow.