Sometimes, Things Don't Go Exactly as Planned....

My apologies for the length of my last blog post.  Sometimes I feel like I have so much to say and it’s hard to edit down without losing the flavor of the story.  Thank you for sticking with me through that, and for coming back to continue with me on this journey.  Hopefully this won’t be quite as difficult to get through.

Now that surgery’s out of the way, I’m on my way to healing and putting this Stupid Cancer behind me once and for all.  The focus right now is on resting and eating well to aid healing.  For the first few days home I move through simple daily tasks aided by Ken – showering, dressing, getting up and down the stairs.  Slowly I regain some range of motion and confidence and am able to start doing things for myself, but for a time it’s agonizing to be so dependent on someone else.  I have a new perspective and appreciation for the anxiety and challenges my parents face each and every day, as their need for assistance continues to grow.  I apologize to them a thousand times a day in my head for all the times I’ve been impatient and less-than-kind with them and their aging bodies.

Three times a day, Ken and I “strip” the JP drains and record their values.  The drains are large, clear rubber bulbs about the size of your fist, attached to clear plastic tubing about two feet long.  The ends of the tubes are nestled inside my abdomen at each end of my tummy incision, with another drain sutured inside my left breast.  These bulbs help suction blood and other bodily fluids from the incisions, preventing seromas (closed pockets of body fluid) and hematomas (closed pockets of blood).  Small amounts can be absorbed by the body over time, but larger amounts not removed can lead to infection and other complications, and these drains facilitate that process.

With one hand we stabilize the plastic tube to prevent pulling it out, and with the other use an alcohol pad to clamp and “wipe” the fluid away from the body into the bulb.  We then open the valve at the top of the bulb and pour the fluid into a small container to measure the output.  We squeeze the bulb to expel extra air then close the valve at the top, and we’re done.

It can be kind of gross (and yet weirdly fascinating, I’m not gonna lie).  Having been a paramedic, Ken is incredibly helpful with this process as no amount of body fluid bothers him in the least (it’s one of the weird things I love about him).

I wear the drains in a super-sexy VS-worthy camisole, resplendent with a lace-covered velcro front closure and internal pockets to hold drains and breast forms.  When showering, I hang the drains from large safety pins on a lanyard around my neck.  I’m a jumble of bulbs and tubing, and not only do they easily get tangled, but it’s equally easy to accidentally yank on them when changing clothing or pulling down pants.  The easiest way to avoid this unfortunate (and painful) experience (at least at night, when lights are low and a bathroom run is inevitable) is to go commando and wear a gown.

Ken offers to pick up something that will button or snap or zip up the front, is big enough to cover the super-sexy cami, and is cool enough to sleep in.

Which is how I ended up modeling My Grandmother’s Mumu:

It is totally the icing on the super-sexy cake of breast reconstruction and recovery.

Damn, I’m hot.

Once a drain puts out less than 30 mL total for two days in a row it can be removed.  By Thursday all three are on track to be removed at the same time and we decide to wait until my follow-up appointment the following Tuesday instead of making an extra trip to Ann Arbor. On Friday, though, the breast drain output increases.  On Saturday it’s higher still, but by Sunday it’s decreasing once again.  On Monday it’s below 30mL for the day, but since we don’t have two days’ of consistency the PA won’t allow it to be pulled on Tuesday.

I whine.  I cajole.  I think I even beg a little.  No go.  I decide to be super-happy that I’m losing the abdominal drains, which have been more of a challenge that I could have anticipated (and I can put my panties back on).

We make the return trip to Ann Arbor on Friday afternoon, and much to my delight the final ball-and-chain is removed.  It’s hard to describe how good it feels to be completely free of the very last of these surgical tethers; it’s been a long two weeks at this point and I’m looking forward to resting and healing unconstrained by body fluids and bandages.

After our appointment Ken and I enjoy a mid-day “old people’s dinner” at Zingerman’s Roadhouse.  The benefit of having a surgically reduce tummy is I’ve lost my “overeater’s pooch” that used to allow me eat in excess and sport a food baby for several hours.  Now, as soon as I start to feel full I’m unable to eat anymore.  This means I rarely eat an entire meal – and I’ve already dropped a couple of pounds.  I nibble on my enormous patty melt and ask for a box after just a few bites.  We decide to catch a matinee of the new Bourne installment on the way home, and as Ken drives I settle back in to my seat to relax and enjoy feeling free.

I doze on and off on the drive home – something I never do.  I hate sleeping in a car, and as we approach Jackson I realize I’m not feeling very well.  Ken and I decide to see the movie later in the weekend, and when I get home I lay down to take a nap so I get over what I assume is just a lack of sleep.

After a two-hour nap I wake long enough to grab a quick snack, chat with my dear husband, and fall back asleep for the night.  I sleep fitfully, odd dreams waking me as I alternating between hot flashes and chills.  The next morning I wake and realize something’s not quite right.  In fact, I feel “sideways”, the word Stephanie used as a child to describe how she felt when she had a bad fever.  Ken checks my forehead which seems cool enough, but I notice my left breast is a little tender which I attribute to removing the drain the day before.  Still, I take two Tylenol just in case.

At 11:00 I take my temperature – 99.8 – not unreasonable.  At 11:30 I take it again, butnow it’s 101.7.  I call the plastic surgeon on duty as directed in my discharge instructions (“any fever over 100.5”)  By the time she calls me back an hour later my breast is much more painful and swollen, but my temp has come down to 101.4.  She asks if my breast is red to which I reply that it’s not – I had checked it a few hours prior when I was cleaning the drain site and don’t remember seeing any redness.  She attributes the fever to something other than my breast, but suggests I come into the ER at UofM to be seen.

An hour later we’re in the ER chatting the Nurse Mike who doesn’t hesitate to see my port as the best access (finally – someone who agrees with me!!).  The on-call PS stops by and a quick check of my left breast reveals some redness and swelling underneath the breast.

She snaps a pic of my breast with her iPhone and sends it off to my surgeon.  Half an hour later I’m being admitted for IV antibiotics.  The PS believes I have cellulitis, and a couple of days of IV antibiotics should help clear it up.

Everyone we come into contact with has the same question:

“Weren’t you just here a couple of weeks ago?”

To which I reply every time:

“I missed the pudding.  I was looking for a reason to come back.”

But deep down, I’m a little concerned.  I understood the risk for infection with this type of surgery, but 24 hours ago I was feeling pretty good and normal.  I packed a bag on the off-chance that I’d be admitted, so I decided to use this opportunity to read a little more Harry Potter, work on my newest afghan project, and finish my last blog post (obviously fueled by hospital pudding and pain meds).

Ta-da!

I’m escorted upstairs….to the very same room from which I had been discharged two weeks prior.  I pass my former nurse and aid in the hall, and we had the pudding-and-cellulitis conversation.  We settle in to our time-share condo and chat with the nurses regarding treatment.  By now it’s evening and I send Ken home with the promise to visit me on Sunday, with the assumption I’ll be released.

Despite strong IV antibiotics, the infection continues to progress, causing serious pain in my breast, and fear in my heart that the flap will fail.  The PS tells me that having a tissue transplant is actually preferable; an infection with an implant or tissue expander requires removal of the “foreign body” until the infection is under control.  On Sunday evening I’m switched to a strong oral antibiotic and another 24-hour watch period.

On Monday morning there is, again, no improvement.  By now my breast is fiery red, rock-hard, and feels like a half-ton weight on my chest.  I’m living on pain meds and naps at this point, hoping and praying for relief soon.

The PS sends me down to ultrasound to look deeper into the breast tissue and determine the cause of the swelling and pain.  They suspect something bigger and deeper than cellulitis – potentially seromas or hematomas.  The ultrasound reveals four “pockets of fluid” – two rather large, and two much smaller.  After consultation with Dr. M, the radiologist drains three of the four pockets of fluid (the remaining pocket is in the area of vasculature for the flap, and he wants to leave that one alone for now).  The first pocket is large – 50cc’s, or about a quarter cup of fluid – and appears to be seroma fluid.  The second pocket is much smaller – 5cc’s – and is a little more red but thin and not cloudy.  The third pocket is the same size, but this fluid is brown, thick, and unpleasant – an obvious infection.  These are sent off to cytology for culturing, and I’m sent back to my room.

I’m switched to a third antibiotic, and on Tuesday morning the PS residents visit me briefly.  They feel my breast is less red than the previous evening, and they encourage me to go home to continue the antibiotics and rest in an environment with fewer infectious risks.  By 11:00 Ken and I are once again back on the way home, and I plan to rest and wait for improvement over the next few days.

When I get home I realize the front of my shirt is lightly wet, and when I check the mirror I see a pinhole-sized opening in the flap scar, and drops of fluid draining out.  My breast is so swollen and painful I’ve wondered if something like this would happen eventually.  A quick call to the surgeon’s office and I have instructions for care (“cover it gentle with a sterile 4x4, but if it starts to leak a lot of fluid you can always use a maxi pad.  And we’ll see you on Friday for a follow-up.”)

I spend Wednesday morning resting quietly, then visit with my friend K who brings me the most delicious home-baked lavender shortbread, two beautiful healing crystals, a loaf of European bakery bread to soothe my tender tummy, and a thoughtful bracelet with an Om charm.  We chat about her recent family vacation and though I’m tired, it’s nice to be up and around and feeling kinda-sorta normal.  Stephanie and Josh stop by, too, just to check in, and Michael and Tori pop in later to help with a lawn-mowing project.

I get a call from the PS office to let me know they’ve discovered the bacterial infection in my breast – a superbug called klebsiella.  In addition, they tell me mine has an enzyme that makes it resistant to but a few antibiotics.  They call in a new prescription for me to start taking that very evening, hoping that by Friday we’ll see some improvement.

Thursday I sleep most of the day; my tummy is upset and my appetite is completely gone.  I decide to take this opportunity to simply listen to my body and do what it needs me to do to aid this healing process.  In between long naps I try to nibble on something but my stomach wants to reject anything I put into it, except water.  My fever spikes to 101.7, but the pain meds have Tylenol in them, and I find that helps bring it down.

I’m not feeling confident about improvement at this point.  Lucy is angry – as in very red, hot, and ugly looking.  Her skin is so full of fluid she’s “denty” – push on her and the imprint will remain for several minutes.  The weight is almost unbearable, so when I walk I gently cradle her in my hand to lessen the stress and movement.  And I know there’s still a great deal of fluid inside the tissue somewhere, as every time I move positions I feel rumblings and tumblings.  My frustration and fear starts to boil over and I find myself in a weeping heap in the recliner.

Friday morning my breast is no better, but possibly no worse.  It’s hard to tell as it’s just overall so awful.  Ken and I make our way to the follow-up appointment with the surgeon’s PA.  I express my concern about the lack of improvement, and she agrees that more might need to be done.  The medical photographer comes in to take a highly-detailed and properly-exposed photo to accurately document the color and texture of the breast.  After sharing this information with Dr. M, the PA returns and gives me the option of returning to the hospital for further testing and observation.

As much as I don’t want to go back, I am happy to have this option, and once again we make our way back down the well-travelled path to UofM.

Late Friday I have another ultrasound; more pockets of fluid are discovered.  Today, we meet with the Infectious Disease doctors who recommend a new, broad-spectrum antibiotic to hit any other infections that might not have cultured, but may be lurking.  They also recommend replacing several drains into the pockets of fluid, but leave that decision up to Dr. M.  Later on the PS resident stops by and very quickly and painlessly makes larger the small opening in the nipple incision, drains the fluid that’s been leaking, and packs my cavity with gauze.  He doesn’t seem to think Dr. M will want to do the drains, but will discuss it with him further.

So here I am, again.  I feel as though there’s been a little positive progress.  Lucy’s not feeling quite a heavy and full today, although she’s still pretty red and angry.  My hope is that tomorrow will bring more evidence of good things happening, and I’ll be able to get out of here quickly, but only once we know we’re on the right path.

Besides – pudding.