Preparing for Mastectomy with Reconstruction: What Worked for Me for the Hospital and Home

I've been planning this post since before I had surgery....knowing I wanted to wait until I was post-op to tell you what worked, what didn't, what items were the most helpful, etc.  Like some of you, I read a lot of "lists" and "tips" and tried to research as much as I could before going to the hospital for surgery.  As a single mom of a high school kiddo, I felt the need to be extra-prepared.
So here goes a long post....my opinion based on my experience with a Bilateral Mastectomy and immediate DIEP Flap Reconstruction....

FOOD
Even before I was diagnosed, I had already started using my grocery store's new Curbside Pick-up option....it is awesome!  This has really been great post-op too.  I order my groceries online, pay online, and schedule a pick-up time.  This is less expensive than a subscription delivery service and the store is just down the road. My parents picked up my order a couple of times and yesterday I did it myself!  (My first time driving since surgery was yesterday!)  You might try it before surgery just so you get a feel for it.

My appetite was hit or miss while in the hospital, but it slowly returned and getting good food into your system is important for healing. Popsicles were my favorite treat especially the first couple of weeks due to my mouth and throat still being a bit irritated from intubation.  I've been keeping a box in the freezer ever since. 

A great gift idea if you are looking for something nice to do for someone preparing for surgery is a stack of restaurant gift cards!  Some of my friends did this for me and even included some $1 bills for tip money.  They picked up cards from a variety of places, including sit-down restaurants for when I was feeling up to it and fast food for quick stuff; all located near my house.  These will come in handy for awhile!

A variety of food gift cards makes a great gift idea for post-op!

One thing I do fairly regularly is "freezer meal prep".  This comes in handy when life gets busy, which is often when you have a freshman athlete and work full-time!  If you have never done this, now is a great time to start!  Having something that I (or my son) can toss into the crockpot or stir-fry pan has been wonderful.  Eating restaurant take-out or fast food gets old (and expensive) and sometimes all you really want is a home-cooked meal. You won't be allowed or able to cook for awhile, so this can be a nice help.  About a month before surgery, I made my menu and spent an afternoon assembling some meals. Within three hours, I had 12 meals and an appetizer in the freezer!  Nothing is cooked ahead of time, just prepped.  If you need ideas on this, feel free to message me or check out my Pinterest Board dedicated to "Freezer Stuff".

12 meals & and appetizer ready for the freezer in 3 hours!

DRAIN MANAGEMENT

One thing I read a lot about was drain management.  Those stinkin' JP Drains become truly annoying after awhile.  Almost every blog post or list you read recommends some type of "drain holder".  My Great Aunt mailed me a "drain pocket" that she received as a gift before her mastectomy and one of the sweet ladies in the Sewing Circle and my parent's church made me a "drain apron".  The hospital provided lanyards and rubber bands as their solution.  There are pros and cons about all three and I used all three at different times. Here's my take on drain management:  

My 3 JP Drains hanging with
rubber bands on a lanyard.

In the hospital, the lanyard and rubber bands were easiest, especially while in bed.  Once I was getting up and around by myself, the lanyard, while convenient, pulled and tugged on the insertion sites.  It was especially awkward when I started going to the bathroom myself...the drains would "fall" when I bent over. I started placing them on top of my IV pump to prevent that big tug, but once my IV was out I didn't have that "shelf".  I found that shortening the lanyard helped with this while I was up and around. Once I was in bed for sleep, I lengthened it again.  The lanyard also worked best in the shower since you don't have to worry about it getting too heavy when wet.  The hospital gave me several when I left and I already had two in my post-op stash at home.  I kept a dry one in the bathroom to switch out after my showers.

She made this one with two large pockets since we
were not sure how many drains I would have.

The drain apron was nice when I went for walks in the hospital hallways and at home.  I couldn't comfortably wear it around my waist, so I tied it up higher (which looked funny, but felt good to me).  It was a nice change from the lanyard around my neck.  It felt too bulky though for sleeping in bed and I got so hot at night the extra layer wasn't comfortable.  I always went back to the lanyard at night.  

Not the best "in use" pic, but you can see the drain apron
is on my abdomen as I'm chillin' on the couch
right after I got home from the hospital!

The drain pocket is similar to the lanyard because it goes around the neck.  Again, this does get tiresome and you'll want a break, so having options is nice.  The pocket was especially nice toward the end of my drain days when they were not as full.  I could fit all three in the pocket at that point!  Just like the lanyard, I tied a knot in the string to make this one shorter when I was up and about.

In this pic, I have the drains still on the lanyard tucked
into the pocket. Shortening the length seemed to provide some
much needed relief to my neck.

I did a very short video the day I came home (POD #5) on stripping my drains, if you want a better look at how they worked:  

PILLOWS/SLEEPING
This is an adventure.  I am a side-sleeper so being propped-up and on my back is an adjustment.  Lots of folks recommend a recliner for sleeping.  I do not own one and am not a fan in regular life, so I did not borrow one for surgery.  That being said, I probably would if I had it to do over again.  Not necessarily for sleeping, but just to change up where and how I am sitting all the time.  My tailbone was getting sore the first week at home, so I recommend having some extra padding or foam cushions handy.  And, you can never have enough pillows!  

I purchased 2 wedge pillows at Walmart prior to surgery and wound-up asking my family to get me 2 more after I got home.  I have stacked these in different ways for both my back support, as well as my legs and feet.  I keep one on the couch  for watching tv and as I am slowly lowering my incline in bed (per MD orders), I can remove or adjust a wedge as needed.

Wedge pillows, regular pillows, and body pillows!

I have 2 body pillows that I use on either side of my body when in bed.  These help keep me from trying to roll-over in my sleep and give me cushioning for my arms.  

The Breast Center and my Plastic Surgeon's office each provided me with an underarm post-mastectomy pillow (both made and donated by volunteers).  There are different varieties of these.  They are nice, esp. in the beginning when you are a little more sore due to the drains.  Honestly though, I never used them. Instead, I used my special "weird" pillow that a lady at church made for me (blue one below). 

Mastectomy recovery pillows

I saw this mastectomy recovery pillow online and knew I wanted one!  My mother gave a friend the measurements and she made it for me before I went to the hospital.  This pillow has been used in all kinds of ways!  Several people at the hospital took photos of it and asked about my "weird" pillow.  It is soft and easily folds or bends. I have used it in the way it was intended (as pictured above) and I used it behind my neck in the hospital bed, behind my knees, under my feet, etc.  One of my nurses laughed every time she saw it someplace new!  I have included the measurements and my recommendations for tweaking it on my Helpful Links page.  This pillow has definitely been a great must-have!  This was the pillow I used for the car ride home too.

Another family friend bought me these sweet pillows that velcro around your seatbelt:

Velcro seatbelt pillows

These are nice and will hang out in my car for awhile.....just a little extra padding over the tender incisions.

CLOTHING

Pretty much my outfit until those drains came out!

You will most likely have a fun bra and binder from the hospital to live in for the first couple of weeks.  I was also told NOT to have anything that went over my head (unable to raise your arms).  In the hospital, I stayed in the gown until they took my catheter out. After that, I had some loose fitting knit shorts with a wide, soft waistband that I wore. A lightweight robe is nice if you are uncomfortable with visitors seeing you in your "armor".  As I mentioned before, my room had to be kept warm (for the microvascular connections on my skin flaps), so I was hot all the time in the hospital and since everything was covered, I didn't care who saw me in my surgical bra and binder!  I made the mistake of wearing satin pajama pants one night and was miserable.

My Plastic Surgeon's office had me purchase white cotton t-shirts and cut them straight up the front to make them like a jacket.  I was instructed to bring one to the hospital to put on after my first shower.  The shirt helped keep the bra and binder from rubbing on my incisions and if any of the drain sites leaked, it helped keep the bra and binder clean.  I wore this outfit until my drains came out and I was cleared to change into a regular bra and binder.

After my first shower in the hospital.

For doctor's appointments and stuff, I wore button-up blouses.  I have a couple of pairs of pull-on, stretchy capri pants that I have been using for these trips too.  You definitely want stretchy, soft fabrics and things that are comfortable on you.  I have been living in tank tops and knit shorts.

ENTERTAINMENT

Being at home and unable to really do much gets boring!  Try to line-up some entertainment for yourself ahead of time.  Now is a great time to binge on some Netflix shows you've been saving or go ahead and add a movie channel package to your cable if you can afford it temporarily.

A couple of friends gave me coloring books and pencils, books, and a big stack of magazines!  Of course, I have my iPad and I've been blogging to help pass the time too. Some folks prefer journaling, but I do encourage you to write stuff down as you go.

Cards, flowers, balloons, & gifts from friends and family

Friends from high school over
for a lunch visit!

I enjoyed having visitors to break-up the days.  Don't be afraid to tell people "no" if you aren't up to it, but for me, I was happy to have people visit even when in the hospital.  I looked forward to hearing about the "outside world".  :) Once you are up to it, see if you can schedule a lunch or a mani-pedi time with some friends.  I didn't do this until my third week, but it was good to get out.

FINANCES
Obviously, this is a BIG one!  If you are on this journey, be sure to make yourself very familiar with your insurance coverage and how much your out-of-pocket will be...then plan on extra just in case.  

For me, this is a tough one. I'm used to being pretty self-sufficient. Asking for help is hard for me....especially financial or physical help!  I've learned on this journey though, that you HAVE TO ACCEPT HELP!  You need it and people who care WANT to provide it.  

I am supposed to be out of work for 6 weeks. I already knew I did not have enough PTO to cover that long of an absence nor do I have short-term disability to help.  This means, that I will be short just over one whole paycheck (if I get to return at 6 weeks as planned). Thankfully, I have some money in savings  and I submitted my taxes prior to hospitalization so that I could get my tax refund sooner....every little bit helps.  

For those of you who have even bigger treatment expenses than I do, this can mean needing to think about fundraising, etc.  I did a small fundraiser...more for the moral support than the money, but the money sure came in handy!  I posted about it in a previous post...my t-shirt campaign via Bonfire.

More friends wearing #TeamJules tshirts!

Another thing I did was check all of my bank cards and credit cards for "rewards points".  I earn points for every dollar spent on my debit card and the credit card I used to pay my portion of surgery.  I was able to turn those points into $125 worth of gift cards prior to surgery.  Usually, I do this right before Christmas, but this seemed an appropriate time and has come in handy already.

HANDY MISC. ITEMS
Chapstick/Lip Moisturizer!!  This is a must-have especially that first week in the hospital.  Your lips and mouth are pretty dry after being in surgery for so long.  Both the Breast Center and my Plastic Surgeon's office gave me chapstick and I received some from a couple of friends as gifts.  My absolute favorite one was given to me by a friend...Tom's Peppermint! It is so smooth and the peppermint smells wonderful.  I wish I had taken this one to the hospital.

Be sure to follow your MD's orders and recommendations for things. Mine had me pick-up all of my prescriptions the week before surgery.  This was a good idea and I was glad not to have to wait for a prescription to be filled once I was home.  I also recommend having Benadryl on hand.  I had a delayed allergic reaction the week I got home and needed it.

My grandmother bought me one of those reacher-grabber things since bending isn't something you can do for awhile.  These are always handy around the house anyway....although I usually use my teenage son!  :)  Putting things within reach is really important though and it's not something you might think about. There are things I was surprised I could not reach...don't seem high or too low normally...but post-op my arms just couldn't go there.  For example: I had my son put a few of my drinks on the top shelf of the fridge every day because bending over to reach the bottom shelf was hard.

I tried using a shower chair, but it was not helpful for me.  I did much better just standing in the shower and using the removable head.  Although, I have kept a chair outside the tub to sit on while drying my legs and feet.

Stock up on regular use items and paper products...one thing you don't want to run out of is toilet paper when you are home alone and can't drive! 

I'm sure I'm forgetting all kinds of things, but this post is plenty long already.  :)

If you have questions or have other ideas to add, please leave a comment below!
I'm going to start working on a hospital packing list too. 

Being on the other side of the bed...

WARNING:  THERE ARE GRAPHIC POST-OP PHOTOS IN THIS POST.  And, this is a really long post.

It is Post-op Day #6...my surgery was a week ago tomorrow.  Seems unbelievable really.  It went fast.  

The morning of surgery, we arrived at the hospital at 0530.  My parents and my son were with me wearing their "Fight Like a Girl" buttons and my son had a t-shirt that read:  "I wear pink for my Mom".  

Shortly after arriving, I was taken back to a pre-op room where I changed into a gown and compression stockings....super cool look.  My IV was started and then my family was able to join me in the room while we waited for the physicians to come in.  Our Pastor came by and prayed with us as well.

My Surgical Oncologist, Dr. K came and reviewed the plan with me again and answered any last minute questions.  I signed consent for his part again.  Then, my Plastic Surgeon, Dr. O came in and did the same.  I signed consent and then he marked me up for surgery.  As soon as he left, the anesthesiologist stepped in and I signed yet another consent.  Lots of signing!

After that, it was just a matter of minutes before I said my "see ya laters" to my family and the medications started kicking in. I really don't remember much of anything after they left the room.

I woke up hours later in Recovery...very groggy and my eyes felt heavy. I tried to ask about my lymph node biopsy but my throat was dry and sore and the nurse said she didn't know. I closed my eyes and the next thing I remember was Dr. O standing over me smiling.  He was replacing a T-Sat probe on my left breast and said: "Miss Hudson, Julie, it's Dr. O.  Everything went great.  You are doing great.  The biopsy was clear...we got it all."  That was the phrase I was waiting for....I was CANCER FREE!   

They started talking about taking me to my room, but I really didn't care at that point....I had heard what I needed.  Once the nurses got me settled, my family came in to see me....it was early evening.  My face was so swollen and my eyes so puffy (from all the fluids they gave me in the OR) that it was hard to keep my eyes open.  My family didn't stay long and I fell asleep immediately after saying "goodnight".  

You can see how swollen my face and eyes are!
It was much better by breakfast time.

I remember them telling me that both surgeons said I was a "textbook case" and that my surgery was only 6 hours instead of the 10+ we had planned.  I really wasn't very lucid until about 0300 that next morning.

The nurse had to check my new skin flaps every hour that night with a doppler.  She would come in and

Checking with the doppler for
blood flow to the "skin islands"

put the doppler probe on the edge of the flap and listen for the blood flow.  I also had T-sat probes attached to the new skin that constantly monitored the oxygenation status of the flaps.  I couldn't really see anything from my angle, so I used my phone to take selfies so that I could see.  

Finally got that catheter out and was allowed to go to the
bathroom myself...and wear shorts!
Still had those hose and SCDs though!

I was wearing a bra, an abdominal binder, and a gown. I still had on the knee-high TED hose, a pair of socks, as well as the SCDs on my calves (they inflate and deflate every couple of minutes). There was a pillow under each of my arms and one under my head. My bed was up at an angle because I could not lay flat.  I also had a heavy blanket laying across my chest.  I was SOOOOOO HOT!  As a South Texan, I am a big fan of ceiling fans and air conditioning. I also typically sleep in tank tops and shorts with light covers.  This was miserable for me.  I could see the thermostat in the room next to my bed was set at 76!  They had to keep my new vessel connections and flaps warm, so there was no negotiating on any of this.  Honestly, this was hard for me to get used to....every day I looked forward to my walks in the hall where it was cold to everyone else.  

My fancy post-op bra

By breakfast I was feeling more like myself. I was able to eat a little and finally got to see my abdomen when the dayshift RN came in to do her assessment... she was kind enough to help me take a picture.

Every 2 hours throughout my stay-day and night, the RN would come and do the doppler check. As a nurse in the hospital, I was a pretty decent patient to have....compliant and motivated.  The staff kept telling me I was ahead of the curve and I didn't argue about getting up or doing my walks.  The only thing I really really really wanted out was that annoying foley catheter!  I had nursing students following me that week as well....I actually enjoyed that because they were eager to see and learn everything.  My RNs were teaching them so they would take their time to explain things and I got to learn along the way.  Each day, I tried to take photos of my progress.

My three JP drains....these are a bit annoying.
They have to be stripped and emptied several times a day.

On POD #1, I walked up the hall.  It was more exhausting than I thought it would be, but felt good to be up. POD #2, I felt great!  Got up, ate breakfast, walked.....and then I got nauseated!  That was not my best day. I still wound-up walking 4 times that day, but I never really felt well.   

POD #3 was way better!  I finally got my first shower!  It was one of the hardest things I've done

POD #3 fresh from the shower!

but felt so good!  The sweet CNA was kind and showed me exactly how I would do it at home.  It was hard for me to be the patient. I've never been on the other side of the bed before and totally reliant on someone else to do things for me...like move me up in bed or help me out of my chair. It's a weird feeling, but I had the very best staff taking care of me.

Abdomen and re-located bellybutton

"Lollipop incisions"...the center circles are the skin flaps from my abdomen.
The rest of the breast is my native skin that was spared.  Obviously swollen everywhere.

By POD #4, I could do two laps around the unit.  Dr. O came in and said I could go home.  A few hours later, I was heading out.  The trip home was not as hard as I had imagined.  You definitely want a pillow to go between you and the seatbelt to help cushion for bumps in the road.  It felt good to be free from monitors, IVFs, and those SCDs!  As good as home felt, it did make me feel vulnerable to be on my own....no one checking me every 2 hours.  

Lymph Node Biopsy incision
under my left arm

I stayed up most of the afternoon and took a shower before going to bed.  I slept hard that first night, only getting up twice for bathroom breaks.  POD #5 was even better.  I walked to the mailbox and back with my son and my family came over to visit.

Abdominal drain insertion point

Insertion point of one of my chest drains...
you can see here that my abdomen is swollen.

I really thought 24/7 care seemed silly since I was not really hurting and I was getting around well.  But, it IS necessary.  My mother has been staying overnight and my grandmother and Dad take turns with her during the day.  It is the little things you need help with: I can't bend over and I can't reach above my head.  My pillow is actually a little too heavy to carry.  I can strip my own drains, but I have a hard time getting the abdominal one thru the t-shirt that I wear under my binder.  Last night I got nauseated after taking a pain med and was so thankful I could call me mother from the other room to bring me Sprite and crackers in the middle of the night.

Every day is better than the last and I have hardly taken pain medication.  The sitting and laying around is the hardest part for me, not the pain.  I'm not going to lie to you and say this is easy, but it is not as bad as I had read or heard.  It is frustrating to not be able to do things I want to do and to get winded just walking down the hall, but I am so grateful and blessed to be here CANCER FREE!  

I am going to try to record more of this journey in video form when I can.  To get started, I had my mother help me film a really quick YouTube video of how I strip my drains for anyone who is interested:

#FightLikeAGirl

MY TIMELINE:

12/22/16  Routine Screening Mammogram

01/18/17  Repeat Imaging and US of left breast; LUMP found.

01/20/17  Core Needle Biopsy

01/24/17  Biopsy results positive...Stage 0 DCIS, left breast

01/25/17  Meeting with Breast Center Navigator and Genetic Testing

01/30/17  Consultation with Surgical Oncologist, Dr. K

02/08/17  Consultation with Plastic Surgeon

02/21/17  Pre-op Visit with Dr. O's nurse

02/27/17 Pre-op Labs and Testing

03/05/17 Lymph Node Injection

03/06/17 SURGERY DAY!

03/10/17 Home!