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So this is my new belly button, Dermabond free and healed. I’m feeling similar as I did when the girls’ belly button tabs fell off after coming home from the hospital. Do I keep the last remnant of Dermabond in a memory box? (Nay!)

Happy Easter!  I shall begin this post with a few lines dedicated to the unfairness of not being able to have chocolate on this chocoholic holiday.  At the beginning of this blog, I touched briefly upon the restrictions I’d be up against before my surgery and during recovery.   Chocolate and caffeine are blood vessel constrictors.  So for patients who will or have had blood vessels transplanted, these two are off limits for two weeks prior to and ~six weeks following surgery.  Bummer.  I “unintentionally” avoided signing us up for the Seattle Families of Multiples Easter egg hunt because of this restriction.  I’m sure there were dozens of chocolate pushers there; I would’ve failed miserably at sticking to the rules.  So, boohoo me.  When’s the next cocoa-centric holiday?  Memorial Day?

We didn’t do a whole lot that was taxing today.  Out of laziness, last night slept without my surgical bra and paid the price for it. I got into bed last night, laid back, felt the flaps start heading their separate ways and was immediately reminded that I didn’t put on my surgical bra before getting into bed.  While all of my discharge and home care instructions say that I can work my way to sleeping flat on my back, I don’t see how this is even a possibility.  Laying flat involves my flaps heading for my underarms and me feeling like my sternum is going to rip out of my chest.  I digress.  I slept without my surgical bra to see if I was still sleeping with it on out of pure fear.  I shouldn’t second guess myself.  All day today my sternum, ribs, shoulders and midback have been much more wrought with a heavy discomfort than they have in the last week.  I don’t know how to articulate the pain in my sternum.  Sometimes it throbs, sometimes it’s a piercing pain, sometimes it’s a little of both.  The skin on top of my sternum is also one of the few areas in my chest in which I still have sensation, so it is almost like all of the sensitivity lost has centralized over my sternum, and now that area is hypersensitive.  I’d equate it to how the raw skin below a blister feels if you peel the blister off…but worse.  Lesson 1 learned today; sleep with the surgical bra on and I’m not ready to sleep flat on my back.

We had our very sweet neighbors over, a couple in their 60’s, for coffee and to watch the girls be cute (and kind of look for Easter eggs in the living room).  I managed the morning ritual without incident and not too much discomfort.  It was fun to get the girls dressed in matching Easter outfits, put Gummy Bears in plastic eggs, and then watch them figure out that the eggs had candy in them (we only give them candy on holidays, and sometimes not even then).  After getting them all riled up on Gummy Bears, we took them for a walk around the neighborhood to burn off some sugar and enjoy this ridiculously gorgeous day we had. The morning felt wonderful.  It was a glimpse into what my days to come will be like once I’m feeling 100%; fun and sweet!

When the girls took their nap, I did some stuff around the house and then tried to lay down for a bit before they got up.  I guess I am in an experimental mood because, despite my poor result from sleeping sans-bra last night, I decided to try sleeping on my side.  I napped, somewhat, for less than 30 minutes laying on my right side.  I can’t lay on my left side because I’m still so swollen and tender it’s impossible to even put a little bit of weight on that side of my body.  But laying on my right side produced no better result.  So, I’m sticking with sleeping on the contoured body pillow for the next few weeks (at least) because it’s the most comfortable for me to sleep on – and that’s not saying much.  After sleeping on my side, my upper body pain was pretty activated.  I walk around like a person in a body cast when I’m having a pain flare up.  I get very stiff and my motions are slow and guarded.  It looks almost as bad as it feels.  So lesson 2 learned today; no side sleeping.

Other than that, no strides or setbacks to report in my healing process.  So saddle up for your not photoshopped pictures of the day!

04/08/12 Frontal

04/08/12 Flaps

04/08/12 - Abdominal incision

04/08/12 left side

04/08/12 Right side

04/08/12 Right side incision healed / stitch dissolved

04/08/12 Left side incision healed / stitch NEVER GOING AWAY / forever swollen

04/08/12 - A little worried my drain site is always going to look like a butt hole.

What a day!  Today was a little reminiscent of what life was like 3 weeks ago.  Mike had a lot of stuff he had to accomplish today, so I tried my hand at being alone with the girls for several hours today.  Mike got the girls out of bed this morning and downstairs for breakfast.  We ate breakfast together, Mike got the girls dressed, and then he had to get out in the sun go run errands for the rest of the morning.

It was kind of a bummer because today was a GORGEOUS day for the month of April in Seattle.  The sun was out, very few clouds blowing over, and a slight breeze.  The bummer came in because I don’t feel confident enough to take the girls out on a walk or into the neighborhood by myself.  They are working so hard on testing us these days and practicing their recently learned defiance that I can’t risk one (or both) of them throwing a tantrum, refusing to walk home or running away from me.  I can’t even run at all, much less fast enough to catch both of them running in opposite directions.  We have a small deck off of our living room where the girls have a few toys, but that wasn’t sufficient enough to keep them entertained.  They decided they needed to do things like dig the gravel out of between our pavers and throw it over the deck, down by our garage or into where we have some landscaping.  Then, when that got boring, they decided they wanted to put the gravel in their mouths and spit it out at each other.  Very naughty, very trying times.  I can’t imagine what it would have been like if we were away from home and they decided to act up.  What am I going to do with my T-rex arms?  Shake a finger at top speed and hope no one notices I’m literally a paralyzed parent?

However, I got through the morning pretty well.  The girls decided to poop as much as they possibly could while Mike was out of the house, so I had to get creative with trying to get them interested enough into coming inside and then sit still so we could change diapers.  (This is so much easier when I can just pick them up and carry them inside.)  I made lunch for the three of us (and bran muffins for later) and was able to assist them with climbing into their cribs for nap time. So we didn’t have any disasters, but we didn’t really get a chance to embrace the beautiful day like we could have if I was 100%.  All in due time, though. Mike was home from his errands on time to help get the girls up from their nap, re-dressed, and outside for a jaunt around the block.  I had to go with him to pick up one of our cars, so I got to try my hand at driving again, but a much further distance from home, and it went very well.

After trying to do a lot more than I have since my surgery, I am in a world of hurt.  It set in probably 4 hours ago and hasn’t really calmed down yet.  I am throbbing in my underarms and along the sides of my flaps.  As always, my sternum hurts (on the length of it), and I have a weird, cold, burning sensation in my chest when/if I inhale through my mouth.  However, if I inhale through my nose and exhale out of my mouth, I do not have this same sensation.  My back and core hurt, too, but I think that’s because I was trying hard to find different ways to shift, support, or move my weight while playing with the girls today without putting weight on my arms (because that sends shooting pains through me and I’m not supposed to do it).  I am still having intermittent muscle spasms between and below my shoulder blades, but I think that is because my posture is still quite affected from my surgery and physical limitations.  I am actually looking forward to taking my Dilaudid before bedtime and having some of this pain and discomfort decrease for a few hours.  I’m hoping that when I wake up at 2 a.m. (for reasons unknown and annoying) I will not feel as stiff and sore as I did that first week home.  So while I successfully did a lot of things on my own today for myself and the girls, it feels like too much.  I think I’ll use this next week to find the happy medium between being a happy mommy and being in pain.

Before I sign off for the night, I just wanted to let anyone reading this that I’m not going through every single day in verbose detail for the hell of it.  I wanted to make sure that if any other woman is scouring the internet looking for information on what to expect after a bilateral mastectomy and DIEP flap reconstruction, that this blog is ACTUALLY found and helpful.  I know it seems like there is a lot of the same written about here (and a lot of bitching and bemoaning my recovery), but I just want to give as much information about how I’m feeling during recovery, what I can do, what I cannot do, and what I have to do to heal well.  I read a lot of other women’s blogs before my surgery.  Some were more helpful than others.  I only found a few other blogs from mothers to young children going through this process, but all of those women had school aged children and a lot of family very close by for help.  Having toddlers is hard.  Having toddlers and recovering from surgery is hard and heart breaking because it’s such an important stage.  So it has been a challenge (and still is) to ask someone else to come here and help me mother my children during this important time in their lives because I’m not physically strong enough to do it.  But it is what I have to do right now for all of us, particularly myself. I just want to provide as much detail about the recovery process so another woman can feel a little like she knows what will be ahead of her.

Everyday I am thankful for having a new lease on a breast cancer risk free life with my family.  We have so much ahead of us!

And now is the time where you either click away or endure the post op show…

 

 

 

04/07/12 - Frontal

04/07/12 - Flaps

04/07/12 - Right flap, bruise almost gone

04/07/12 - Left flap, king sized

04/07/12 - Abdominal incision

 

 

 

Today was an unexpectedly nice day, for the most part (weather wise).  The girls and I all slept in a little late today, and when we awoke we saw some surprising sunshine.  We got through breakfast and I thought that if they were going to endure some wind for the sake of sunshine, I would tag along.  Like every other day this past week, I was able to get myself dressed and ready for the day without any assistance.  And it STILL feels wonderful to have all of my drains out.  I know it seems petty because they were in for such a short period of time, but that small window was open long enough for me to totally dread them.

I still cannot care for our daughters on my own.  While there is a growing list of solo “can-do” items as far as caring for them, that list is easily diminished by the lengthy “cannot-yet-do” items.   I cannot get them out of their cribs unassisted.  One of our daughters is an adventurous, fearless climber.  If I put their little step stool in her crib, she can get herself out of it (and she can get herself into it).  But that has to occur under the perfect circumstances.  She has to have slept well, woken up happy, and be eager to get her adventuring underway very early in the day.  That isn’t always the case (surprise, surprise).  Our other daughter is much more reserved and cautious, and she prefers to take the traditional route of the crib, which is in someone’s arms.  If the planets align and the little ladies are happy to give me a little assist, I can manage changing their diapers.  If they decide that they would rather continue running around like insane little people with soiled pants, I couldn’t grab a hold of them and wrangle them into proper diaper changing position.  I cannot put them in their car seats, stroller, or booster chairs on my own.  I cannot carry, hold, hug, or bathe them.  If there were an emergency of some sort, I’d be sacrificing a lot of my recovery and surgical outcome to get them out of the house safely on my own.  (I assume that if push came to shove, I could carry them.  But I’m sure it would be tremendously painful and short lived.  NOW EVERYONE KNOCK ON WOOD.  Thank you.)

Back to today; our nanny pushed the girls along in their stroller while I walked along side them into the “village”.  We stopped at the toy store for some new, non-princess based books and two free balloons.  Then we went to the coffee shop to read said books, play trains, have altercations with other kids and their shitty parents, and then leave in a huff and go to the park for some play.  While it was great to be back at the park and playing with my daughters, it was a very strong reminder of the ever-expanding “cannot-yet-do” list.  I couldn’t help them onto the swings or a lot of the other toys.  I had to wait for our nanny to be available to help each of our girls climb on the playground equipment, and evening pushing the girls while they were on the swings was uncomfortable.  I was told to limit the weight that I push/pull during my recovery, but I didn’t think the simple act of pushing a toddler on a swing set was something to avoid.   When it was time to leave the park and endure the “I don’t want to leave the park” battle, it was clear that I am medically unfit to duke it out with two toddlers on my own.

It was a great morning/early afternoon, but it was also a wake up call.  The reality is that my surgery was a mere 23 days ago.  And, while I’m feeling good, I still probably have about 3 weeks of recovering before I can even think about a day of me flying completely solo with the girls for the sake and safety of all of us.  I’m really happy with my surgical outcome (despite my continued gripes about my left side swelling) and how well my recovery is going, but it is very challenging to be patient with the body.  I am trying, but everyday it is hard.

After mild success (the other night) sleeping with my left arm propped up to try and reduce the discomfort, doing the same thing last night did not produce the same relief.  I woke up this morning with more of the same pain with rotation and extension of my left arm.  So today I kept it close to my side most of the day and tried to be as cautious as I could with it when we were at the park.  I feel like I can’t be too guarded, though, otherwise there will be no change.  Of course I have no medical knowledge to base that assumption on, so there is an incredible likelihood that one of my physicians will soon call me an idiot for thinking that being too cautious or guarded is bad.

Other than that, I feel like I have no new complaints and am just at a plateaued period of healing progress.  My swelling has not decreased but it isn’t any worse.  My sutures in my left flap will not dissolve!  Hopefully they are gone next week.  I am doing well using an alternating schedule of Tylenol and Ibuprofen during the day to control my pain.  These don’t completely resolve my pain, but it’s at a manageable point.  I only take my pain medication at night because sleeping still kind of hurts and I try to roll over on my sides, which, surprisingly, still hurts A LOT.  One day, in the not so distant future, I will be able to roll over and sleep on my side.  In 120 days, hopefully, I will be back to my beloved belly sleeping.  Until then…

Daily dose of Dermabond below.

 

04/06/12 - Frontal

04/06/12 - Flaps

04/06/12 - Abdominal incision

04/06/12 - Right

04/06/12 - Left

The Mayans predicted that this thing will explode in 2012.

 

Today I was able to comfortably wear a pair of my jeans.  Of course I had to go through my closet and every pair of jeans I own to find THE ONE pair that I could comfortably get on.  I’m not any smaller than I was pre-surgery, but I do still have a lot of swelling around my abdomen, so it’s hard to get a pair of jeans to sit comfortably around my contained swelling.  I don’t know why I was thinking, “This is going to be great!”, because what’s so great about putting on the same pair of pants that you wore every day?  It’s not as though I had gastric bypass 8 months ago and these jeans were my goal.  I had a bilateral mastectomy and breast reconstruction; this has nothing to do with wearing pants.  But, anyway, I wore jeans today instead of sweat pants or athletic pants.

04/05/12 - Jeans!

I did manage some more household tasks on my own today while the girls were at baby gym and playing.  I did two loads of laundry alone (I couldn’t put everything away by myself because of my limited range of motion), I made lunch for myself and the girls, and I prepared 50% of dinner for our family myself.  I say 50% because I reheated chicken that my sister made for us before she left.  But I made the sides and got everything out and on the table by 6 p.m.  I was also able to do the dinner clean up while Mike gave our girls their bath, and we’re all ready for a nice GOOD NIGHT!

Speaking of good night, I am hoping that I will sleep well tonight having, again, foregone my mid-day nap.  I did get super tired after about 3 p.m., which was typically when I would make myself a latte and push through the end of the day.  However, I’m still not allowed caffeine so I just have to push through being tired and hope that it translates into a better night of sleep.  Last night I did sleep ok, but I am plagued by this weird 2 a.m. wake up that I just can’t get rid of.  After I woke up last night I was able to return to sleep faster than I have previous nights, but it’s a hassle because I wake up sore and stiff, get out of bed to walk around and try to loosen up my upper body.  Then I wrangle myself back onto my crazy contour pillow in the dark, all the while trying not to disturb Mike (or our cats), or hurt myself, or fall on the floor.

I also slept with my left arm propped up on a pillow like I did the previous night.  It is helping my discomfort during the day, but it is not completely alleviating it.  I don’t understand why I’m having pain in my collar bone and shoulder when my surgical sites had nothing to do with those areas.  But it could be a result as moving (or not moving) how I normally do because my movements have been so guarded and flower-delicate like.  I’m hopeful that time does heal all (surgical) wounds and woes.

I can’t think of much else to discuss tonight, so I’m going to try to sleep.

Here is your daily dose of Dermabond…

 

04/05/12 - Frontal

04/05/12 - Flaps

04/05/12 - Improved bruising

04/05/12 - Right side

04/05/12 - Left side still swollen

Today wasn’t phenomenally different than any of my previous days during this recovery process, but I did manage to do some more things independently that felt good.  They may not seem like much to you, but it was nice to do them alone.

Today Mike and my sister took our girls to the Children’s Museum for fun since it was pouring rain all morning.  While they were out, I was able to put a load of the girls’ laundry in by myself and get it started.  I had to take a few trips from the nursery to the laundry room because their basket was over the 5 lbs limit, and I had to use my handy step stool to reach the detergent and turn on the washer.  I’ve been paying our bills and keeping up with our finances since I came home from the hospital, but today it took me the same amount of time as it did before my surgery.  I was pretty lethargic and it took me about an hour to get through our bills when I first came home, so it felt good to get back to my base time.  I’ve intended to walk two times a day for exercise, but this Seattle weather has been preventing me from doing so.  So while my family was out and about, I decided to walk up and down our three flights of stairs 7 times.  I was sure to take it slow and hold on to the railing for safety.  I also stopped after each trip up and each trip down to see if I was woozy, light headed or winded.  I stopped after 7 because I was tired.

I took an hour long nap today when the girls took their nap.  When we all woke up, it was like a brand new day.  The sun was out and the rain was gone.  We all headed outside; the girls rode their bikes while me, my sister and husband followed them around.  When they were done riding their bikes, we put them in the stroller for a short walk around the neighborhood.  I had to turn it around shortly after we embarked on our afternoon walk because I was getting tired.  So I came back to our house and put dinner (that our friends Athan and Cindy were kind enough to deliver) in the oven and had a small snack.  This evening I was able to shower completely by myself, including washing my own hair.  While I appreciate all of the help and assistance I’ve been getting from my family, it’s nice to not need a tailgater 24/7.

I had very little pain today except for when I was playing with the girls and took an accidental kick to the armpit.  It didn’t produce a sharp shooting pain like previous incidences, so that was a relief.  But there is a dull ache and a twinge of pain when I lift my elbow away from my side.  The only other downer is that my mystery rash has returned.  It’s been coming and going (both on my abdomen and my arms) since last week.  When I last saw my physicians I didn’t bring it up because it had cleared up that day.  But, it’s back and it itches like crazy.  I’m not sure if it has anything to do with my medications or my body recovering from surgery, but I will bring it up when I go in next week to have my last drain removed.

So, with today being a relief of an uneventful day, I leave you with my updated scar scariness.

 

03/31/12 Right arm rash

03/31/12 Left arm rash

03/31/12 Flying solo with the shampoo & conditioner!

03/31/12 Frontal

03/31/12 Left side swelling (see underarm pocket)

03/31/12 Left side swollen

03/31/12 Right side bruise on nipple site

03/31/12 Right side still bruised, no swelling

 

 

I received our first of many medical billing statements for my surgeries today.  This is not an actual bill for money due now, but a total from the UWMC for my hospital stay, use of the operating room, a ~15 minute meeting with a physical therapist (who just watched me walk up and down a hallway and some stairs before I was discharged), a ~30 minute meeting with a occupational therapist (wherein she basically got paid to not really help me shower), my one night of a private hospital room, and food.  The bill is just over $73,000.

Big bill # 1 rolls in.

I have yet to get bills from my breast surgeon for the BPM, my plastic surgeon for the DIEP flap reconstruction, or the anesthesiologist, or the residents and attending physicians that checked on me and “met” with me every morning and every evening during my hospital stay.  We are EXTREMELY fortunate to have health insurance to get us through this, but I’m not sure how much our insurance is going to pay or is legally obligated to pay.  The Women’s Healthcare Act of 1998 requires that mastectomy and any other procedure or care relating to the mastectomy be covered by insurance plans that include mastectomy coverage.   My insurance plan does cover mastectomy, but I don’t know if my surgeons are “in network” providers.  I tried finding out prior to my surgery but the customer service department for our insurance company is hell in a hand basket.  I would’ve been more diligent in researching this like most women would have been, but honestly I was worried that the cost of the procedures would just give me more ammunition to put this off another year.  Fear inspires a lot of bad decisions, and I didn’t want to be a victim of my own fear or of cancer.  Here’s some more fine print that makes me worried we’re looking at a hefty bill:

If you want to have your breasts surgically reconstructed after mastectomy, you may choose the type of reconstruction you prefer, but your health plan is legally required to pay only for procedures that meet the parameters of its plan. Your insurer will likely approve your request for an in-network reconstructive procedure, but approval becomes less clear for out-of-network services. Your group plan, for example, may not have a surgeon qualified to perform the newer single-stage implant reconstruction or muscle-sparing microvascular technique you prefer. Some insurers grant out-of-network payments for these reconstructions, while others routinely deny them. If your plan doesn’t provide the reconstructive method you want, ask your prospective plastic surgeon’s office for help; they have experienced billing coordinators who are used to dealing with insurance companies and negotiating payments.

All I can think about after getting this bill is 1) what type of payment plan do you set up for over $70,000 in medical expenses, and 2) what happens to women who have cancer or BRCA1 or BRCA2 and don’t have insurance coverage?  When my sister was diagnosed, she had health insurance but it barely deserves that name.  I’m sure she and her husband were too terrified of her disease to even think about the cost of her care, but I imagine that the cost of these procedures is a deterrent for a lot of women.  What a shame to have to choose between a lifetime of medical bill debt (or bankruptcy), or, in the alternative, a much-abbreviated lifetime.  Please think deeply and sincerely about that scenario because I am certain that it is painfully true for thousands upon thousands of families.

Today I thought that I would discuss my seemingly, never ending fear of necrosis.  Necrosis is the death of living cells or tissue.  This is a big concern for me during healing, particularly for my flaps.  It is something that every reconstructive surgeon will have to face at some time or another with a patient, because it DOES happen, but there is not a very high incidence rate of it for patients in my demographic.  However, every day I inspect my flaps and my some-day-nipples for necrosis.  The sign that all of my surgeons told me to look for as definitive of necrosis was blackening of the tissue.  I feel like this was a poor choice on their parts.  Post surgery there is a lot of bruising and scabs everywhere; and, not everything bruises or scabs over at the same time.  So any time I notice a new bruise or a scab that I think I haven’t already inventoried, NECROSIS.  I am posting a photo below of my right flap that has a bruise today in the nipple site that wasn’t there before.  To me, it is black as night.  To my color blind, sometimes rational husband it looks the same as the rest of the skin.  He is a liar and he’s had a long day, so I can’t trust his words.

Does this bruising make my reconstructed breast look necrotic?

I will, therefore, spend too much time tomorrow morning trying to get in to see a PA or find an email address for someone at my plastic surgeon’s office that I can then bombard with photos of my flap.  While I am somewhat obsessive about my care and recovery, it is a very real possibility that I could develop necrosis.  That would mean losing tissue on my flaps, discordance of my flaps, more surgery, more treatment, more recovery, more bummers.  So I will keep you apprised of any developments on that aspect of my recovery.

Everyday I hear from a few friends and/or family members that are checking in on me to see how I’m progressing and if I’m in need.  The answer is always “better” and “YES”.     My friends Jennifer and Dana both emailed me today to touch base and offer their loveliness.  In my responses to them both, I mentioned what I refer to as my “T-rex arms”.

My T-Rex arms feel even smaller than this.

My inability to do a lot of things relates to me feeling like I have arms the length of and range of motion belonging to a Tyrannosaurus Rex.  My reach doesn’t extend much farther than my torso and the use of my arms is frustratingly limited, which I may have already discussed one or five thousand times.  Since I can’t reach above my head or very far at all, I have all of these little step stools around the house to make me taller and able to stretch from my legs or my torso to reach things.  This includes reaching outlets in our kitchen, bathroom, or into a cupboard.  I also use my step stool and an additional tool (like a wooden spoon) to reach things overhead (i.e. vent hood fan in the kitchen or task light switch).  These moments provide some simian humor, but usually just annoyance.  The T-rex arms also have me largely dependent on others for hot meals.  I can use my arms well enough to reach everything I need for a sandwich or a small snack, but I am still unable to cook on the gas range, reach the microwave (because of where it is in our kitchen), or use the barbecue.  So while I keep convincing myself that I’m only a hop, skip and jump away from independent self care, I really do still need help.

And, finally, the Dermabond is starting to come off of my abdominal incision.  Today I caught sight of one area where the scabbing and Dermabond have both come off, and the incision is far less Mary Shelley than I thought it would be.  Good news!

Abdominal incision free of scabs and dermabond looking pretty good!

Today's progress photo

 

All dressed up, no where warm enough to go. Skipped my walk today. Oops!

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 is the last day that I can have coffee or chocolate for the next 8 weeks, at least.  This is because caffeine is a vessel constrictor, which is bad for microsurgery.  So in order for my DIEP flap breast reconstruction to have all the potential of 100% success, I have to cut both of these loves out of my life.  What’s a girl to do?

Do I double fist at Starbucks?  Embarrass myself by spending the entire day at Oh, Chocolate!  Do I just sit in my pantry and eat an entire bag of chocolate chips?  “Why not?”, you ask?  I don’t know why not.  Other than the caloric consequences (and me already doing a great job of ensuring my personal trainer is gainfully employed thru 2057 without provocation), I’m not sure why I shouldn’t go on a caffeine bender today.  So, watch out world!  Crazy Asian all amped up and behind the wheel coming up!!!!

I will post another blog later today.  The past two days have been filled with exhausting anxiety and pre-op appointments at the UWMC.  More about that later.  I need to get this double shot soy latte going.

I think in honor of my upcoming 2-month-long sleepy face, this song played in the background of all 3 of my crazy ass dreams last night.