What I've accomplished today...

I made it out of the house with two kids by 7:00 and made it to Physical Therapy for 7:30.

I blow dried my hair with a round brush and arms behind my head.

I replied to a whole bunch of emails, wasted about 3 hours on the couch, and ate half a box of Girl Scout cookies.

It's been a great day.  I'm off to another appointment now hoping to hear that my incision are looking good.

Run

I ran for the first time yesterday!  Despite the cording, I got the ok to try "light jogging."  They recommended loading on the sports bras, not because they're going anywhere but just to make me feel more secure.  I did a slow mile and a half, walking a bit before and after.  It felt good!  I felt like I could have kept going a while longer, but knew that I needed to keep it light, so I stopped anyway.  However, I will admit that run was ALL that I did the entire day.  I was on the couch the rest of the day.  I wasn't sore or anything, just tired.

So now, who wants to do the Cellcom Marathon Relay with me???

Cord

It's official.  I have Axillary Web Syndrome. I have a cord in my left armpit.  I can feel it and see it now if I hold my arm up a certain way.  It feels very strange like tiny ropes being pulled in my arm and armpit.  It is the result of some of the vessels being damaged during the sentinel node biopsy. (Sentinel Node Biopsy was the biggest set back of surgery day for which I received the bill of $588 for yesterday--I wonder if they took anything off for waiting over 2 hours for a five minute injection.)  The lymphatic system has been disrupted and now it's trying to restructure itself to find a way for the lymph to drain.  Here's a picture of someone much skinnier than me.  Luckily I have some meat on my bones and mine doesn't stick out like this.   

There is shockingly little information available about it.  Prior to surgery, I heard all about the lymphedema risk, but never this. The few pieces of information that I have found out there all contradicts each other.  One study says that it occurs to 6% of patients, another 40%, another claims that as many as 72% of patients develop it but it's just not well documented because most women think that it's just pain associated with mastectomy and don't notice because they never see the cords pop out.  Some studies say that leads to an increased risk of lymphedema, others disagree.  All studies agree on treatment involving stretching, which I have already started and am doing several times a day. The cord and developing web will go back to normal or pop in weeks or months, but there's no way of knowing how long it will be. However, some women are still bothered by in years following their mastectomy.

As much of a pain as this is, my motto is . . . it's better than cancer.

Day 23

It's been 23 days since surgery.  That's just over 3 weeks.  I'm almost back to normal with the exception of not lifting things and getting tired easily.  I had another Physical Therapy session this morning and tried Zumba Gold yesterday.  It's so strange how some simple moves can feel so different now.  The very first song during the warm up of Zumba had an arm movement that I've done hundreds of times previously and never thought would be a problem, but I felt it!  I had to take it so slow (slower than the moves already are during Gold!) and make sure that it was good stretching pain not hurting pain.  I had fun the rest of the time, once I realized what I could and couldn't do

Before surgery I worked really hard building up my core muscles so that I could handle movement post surgery with ease.  My torture for this was holding plank position for 2 minutes at a time.  It was tough, but I could do it.  Now, instead of holding plank, my two minutes of torture is simply lying on my back with my hands behind my head letting gravity pull my elbows down to the ground.  This sound so simple, but is so challenging for me right now.  Most of my pain right now is in my armpit area rather than directly on my chest.  There just a crazy tightness there.  My physical therapist said that this is typical because that's the center of where everything goes to (nerves, vessels, etc.)  and that my chest is numb therefore, I'm not feeling the muscle stretching pain there. 

She talked to me today about Axillary Web Syndrome or Lymphatic Cording. Because of the pain I describe during movement sounds like that, we're going to just make sure we keep things moving and stretching so that it doesn't turn into it.  I don't really want guitar like strings poking out from me, so I'll be working hard on those exercises.

 I even felt so good today, that I went to Younkers to do a little shopping with their Good Will sale.  Of course, the one day I choose to do something fun for myself during recovery, I see a student's mother there shopping as well.  Oh well, she was very understanding and I got myself some good deals.

Physical Therapy

First day of physical therapy was tough.  She had me stretching and pushing it a lot further than I even would have done for myself.  That's the point though.  I already feel less tightness across my chest and shoulders.  Funny moment of the morning was when I realized that my bra had burst open again at some point during the exercises and I never noticed.  I have no feeling there and I was concentrating on the movements.  I didn't notice until I stood up to leave and my shirt wasn't lying right.  Oops!  If you ever see me having a wardrobe malfunction, please tell me because I probably don't notice. 

Tonight we have a dinner waiting for us made by Chef Kelly (PCMC's private chef and hospitality specialist).  It looks delicious.  I'm having a hard time waiting for dinner and not tearing into it (especially the cake) right now.

Beautiful weather

This weather has been beautiful! I'm really enjoying going on walks and sitting outside watching the girls playing in the backyard.  However, I must admit that this warm spring isn't really compatible with my post mastectomy wardrobe plans.  I really would like a few more weeks to hang out in over sized sweatshirts.  I have movement back enough to get into regular shirts, so I am no longer limited to button up shirts, zip front hoodies, or step into tanks--getting them off is sometimes tricky though still.  It's just that my skin is having some sort of a reaction still to something used during surgery and is peeling like crazy.  I don't really want to show off my arms yet in this condition.  Now onto my other interesting problem...my underarms.  Apparently placing something under your pectoral muscles reshapes your underarms as well as your breasts.  I now have to figure out how to shave these newly shaped underarms which has not been very successful yet.  I'm hoping it just takes time.  If not, I'll be having laser hair removal soon.  I wonder if my Plastic Surgeon would give me a deal on it?  So if you happen to see me out, please ignore the flaking skin and possible hair.  Thanks!

Day 16

These last few days have been interesting.  I left the plastic surgeon's office Monday with some directions for scar treatments that were pretty interesting.  I'm going to go into some details that everyone might not be into, so feel free to stop reading here.  The directions were to cover my incisions with Vaseline, let it sit for a few hours or overnight, then take a wet wash cloth and try to rub away the glue that is covering it.  I didn't really understand exactly what this meant at the time, but the directions sounded easy enough so I didn't ask more questions. 

Monday night I slathered on vaseline and Tuesday morning I started the second step.  I wet a wash cloth and started rubbing away at the incision.  It was a very strange experience.  Here I was pushing on and rubbing with something warm and wet on the side of my breast, but I cannot feel a thing. It was even crazier when the glue actually started to come off.  I had no idea how my incisions were actually closed, but they didn't look pretty.  They were smaller and thinner than I had expected, just a thin line with some brownish reddish chunks of skin in a few areas and an all over greyish tint that I thought meant I was headed toward having necrotic tissue (dead tissue that would just fall off eventually).  They weren't awful, but weren't pretty. Well after a bit of work, this stuff started just peeling off revealing this tiny pink scar.  All that grossness was just the glue with dried blood in it.  I was just amazed! I was so excited! I now understand why so many women post pictures of their healing--they just want to share this amazement with someone else. I had a hard time not taking a picture immediately and sending it to Mitch's phone, but thankfully rethought that one before I actually did it. 

It took a few days and quite a bit of Vaseline and rubbing, but eventually it all came off.  I was all set to begin the next step in scar care involving a silicone product called prosil that cost $21 for .15 oz. (smaller than a chapstick tube).  However, there is a bit of bleeding from the incision still.  Not a ton, not in all areas.  I called the doctor about it today and asked if I what I should do.  The nurse explained that I should not use the prosil scar treatment until it's completely closed up and that I need to be careful and watch for signs of infection.  Too bad, I waited to call until after I had already put the prosil on.  Oops.

All that work left me a bit sore--more than I have been feeling lately and feeling more run down than yesterday.  I hope I'm just imagining this because I'm a worrier and it's not an infection coming on. 

2 weeks post op

I am now two weeks post op and feeling great.  I feel 100% sure that I made the right decision and am already happy with the results.  I'm off pain meds--just need an occasional ibuprofen or Tylenol.  I'm still napping each afternoon, or at least nearly sleeping while watching something each afternoon.  My body is regenerating itself into the alloderm that was used to create my "pocket" so I am expected to get tired and I plan on allowing myself to rest whenever I feel the entire time I am off. 

I read an article the other day that Giuliana Rancic went back to work 2 weeks post op.  Please don't compare me to her.  Even though I am feeling very good, the thought of going back to work right now is out of the question.  I really would like those articles that gush about how quickly she bounced back to tell us more about her work day. I'm doubtful that it's a full day; I would probably last about 2 hours, plus prep time to get myself ready and to work.  Giuliana has a team of people working for her to put her together each day or she gets to show up to work wearing a hooded sweatshirt and sunglasses and they put her together when she arrives eliminating that whole wake up at 5:30 to get myself and the kids ready before school routine that I have to handle.  She can probably take care of some of these post op things during her work day.  Guiliana you are not going to make me feel guilty for taking more time off.  Aside from the huge amount of healing I've been busy doing, here's what else I've already been able to accomplish in 2 weeks:

• Read The Help, watched The Help, and 1/2 way through a second book already
• Cleared the DVR of 1/2 of the season of Private Practice and an entire season of Grey's Anatomy
• One puzzle
• 15 minute walks every day for the last 3 days including one outside w/ the dog not pulling thanks to her Gentle Leader collar
• Enrolled our cars in "Progressive Snapshot" to see if we can save on our car insurance

I'm free!

I'm free!  I'm drain free!  I move my arms, no tugs or pulls.  I can put on and take off clothes now without feeling like I'm stuck on a leash.  It feels amazing! 

Now my output in drain #4 still wasn't good. It still was hovering right at 30cc or more each day, never lower despite my best attempts at being lazy.  But my scheme worked anyway. I showered this morning, drains dangling off a lanyard around my neck.  I did my hair and put on make up. I figured maybe he'll think: "She looks so good, back to normal, we're going to take these out anyway."  I'm not sure if that's it or if was because when the nurse asked if I was ok having more pictures taken today, responding with "only if you take the drains out."  Either way they are gone.  I can throw out the gross measuring containers and move on.

I'm moving on to

•  be able to drive myself again
• a weight restriction from 6.5 lbs (gallon of milk) to 10 lbs. (bag of flour or large potatoes)
• physical therapy to increase my range of motion and slowly work my way back up to exercising regularly to avoid lymphedema (My risk is really low because I had 1 lymph node on each side removed, but staying active is the best way to prevent it). 
• Doctor appointments every 2 weeks now instead of 1 week. 
• Scar conditioning routines morning and night instead of drain stripping, measuring, and emptying. 

If...

If I come home from this appointment with drains still attached to me, I do not know what I am going to do.  I remember reading one person's perspective.  They told their doctor that "if these drains don't come out soon, someone is going to be strangled with the tubing."  I don't know I'll go that far, but who knows what I'd be capable of if I'm pushed to 3 weeks with these things. 

Day 11

Good appointments this week.  Everyone keeps telling me they look great and I'm doing really well.  Both Dr. Colette and Dr. J. called additional people into the room to show them the results because they were very proud.  Dr. Colette worded it well, "We usually get the disasters, so I want her to see something good."  

She also mentioned that she's going to present me at Tumor Board.  We went into surgery with that uncertainty of what would be in there based on my last MRI and almost drastically changes the plans.  Now that they know the exact pathology, they can use this to show others what fibroadenomas look like on MRI.  I'm happy that others will be able to learn from this.  Before doing surgery, I really wanted to participate in some clinical trials. I felt like I needed to do my part to help the research, but none of the ones I looked into ever worked out for me.  So now I still ended up doing my part for research without even trying.  

My dark coloring in drain #4 is not a concern.  It was likely a clot and most clots break up 7-10 days after surgery.  This started happening on day 9.  Everything makes perfect sense. The smell is not there, someone was imagining things.  But the amount of output still bothers me. I've created my new rules because I need to do something to get drain #4 output drastically lower by Monday.  I do not want it still in me past Monday.  I need to be draining less than 30cc in a 24 hour period.  I'm draining over 20cc morning and night.  My body has some work to do.  I'm on recovery day 11 and here are my rules (that I should have been applying all along, but haven't been.):

If it is higher than shoulder height, I don't need it.

If it's on the floor, squatting only to pick it up.  If that doesn't work, it can stay there until someone else picks it up. 

If it's more than one of any item (even if I think it's still below my weight restrictions), carry them only one at a time.  

I am limited to reading, puzzling, writing, and watching.  

We'll see how the day goes with these new rules!

 

On a better note...

I'm not a person who often posts pictures of the delicious foods I eat, even though Mitch is a great cook.  But this I had to share.  It was the best tasting sandwich I had in a long time.  It made me feel a lot better today. Thank you, ladies!

Negative Nelly

I will admit it, I have been quite a Negative Nelly lately stuck here home by myself.  Here's my list of things that I recently decided that I dislike.

I dislike:

Drain #4: I dislike all drains in general, but this one in particular is the worst.  The fluid suddenly turned very dark and according to Mitch has a bit of a smell to it.  He assured me that it was more than my normal stink, thank you very much.  So now we have something to see the doctor about today. 

Sleeping:  Under normal circumstances, there is nothing that I like better than sleeping or napping away an afternoon.  I like to curl up on my side with the blankets right up by my chin.  I am forced though to sleep only on my back.  As soon as I lie down, I have intense pain at the bottom of one breast.  Eventually this goes away and I fall asleep.  However, I wake up a bit later and have kicked the comforter down to the end of the bed and my cozy blankets have gone south with it leaving me shivering.  I don't have the strength to pull the blankets back up because they are weighed down by the comforter.  My options are to wake Mitch up asking him to pull them for me or scoot myself down further to wear the blankets would reach.  Mitch is working so hard taking care of everything, I don't want to wake him up.  So I attempt the scooting down.  But then the pillows need to be moved.  It's not as simple as reaching back behind your head and pulling them a bit.  I wish I could do that, but I'm lucky to be able to reach out of bed to touch something on the nightstand much less pick it up.  So that leave me with doing a full sit up to get out of bed, stand beside it, move the pillows, climb back in bed to where the blankets now reach me, and try to get back to sleep before the intense pain at the bottom of one breast gets the best of me again.

Pain Meds: I don't like them.  They make me sick if I don't eat a full meal with them.  I don't ever know if what I'm feeling warrants taking pain meds, or if I'm just being a baby.  The pain has changed from general all over ache to intermittent sharp stabby pains.

Muscle Spasms:  I don't know if what I'm feeling is really a muscle spams, but it's the general pain that is to be associated with a mastectomy. There are times where everything in my chest feels so tight.  It's rock hard and like everything beneath is being squeezed.  I haven't yet figured out a pattern of what brings this on or what helps it go away (other than meds).  I found that if I read with pillows propping up my arms, it's less likely to happen.  I feel like when it happens at night, it's not worth getting up and getting meds.

Wednesdays at Noon: We live very close to the tornado siren.  I need to remember that before I decide to nap right before noon on a Wednesday.

Opening Cabinet Doors: Who knew that little magnet closure could be so strong--stronger than me right now?

Daytime Television: I've seen every single episode of A Baby Story that they air these days, The Real Housewives of where ever is featured each day is pure ridiculousness, and my HGTV/DIY network favorites just aren't cutting it.  I'm moving onto those movies great friends have sent me this week. 

My purse:  I love my JuJuBe durse (diaper bag/purse) so much, but it has been banned from me for awhile.  Even with most of the contents removed (honestly I don't need to carry around diapers/wipes/a change of clothes for kids), it's still just around my weight limit.  I wish I had planned ahead for this because my bin of substitute purses is just beyond reach in an underbed storage container.  I now rely on others to carry it for me or not bringing it at all.  Sorry--can't pay for lunch, didn't bring my purse!Let's see how Dad likes carrying it for me when he takes me to my appointment today :)

I'll stop here to keep from getting anymore negative.  I have another doctor appointment this morning.  Hopefully, I come home from this appointment with less things on this list rather than more and a better attitude. 

Here are two good things:

1.  Aila told me this morning, "Mom, your pajamas are beautiful!" and she combed my hair for me after a shower yesterday.

2.  Adrienne sat in my lap yesterday as I read her some books.  As long as she climbs up there and she doesn't lean back, it's not breaking the weight restrictions, right? 

boob voyage party

A few weeks ago before surgery, we held a "Boob Voyage" party to say goodbye to my old ones and raise some money for Bright Pink and FORCE.  Here are some pictures from the fantastic day! 

The cupcakes.  1 out of 8 cupcakes had a lump hidden in them.

The donation bin and information center

These two are very excited for zumba!

Me looking nervous

Two of my biggest supporters!

There's such a fun atmosphere at Energy Dance Studio already, we added a bit more decoration.

Catching up with a friend I haven't seen in forever!

The proceeds!

2 out, 2 to go

My appointment went well.  2 drains were pulled.  2 are still left in.  The best part is that I get to shower tomorrow!  It's amazing how much better I feel with just those 2drains gone.  They hide better under shirts, can now just be pinned without pulling everything down, and even aren't that bad just hanging on a lanyard in front of me. 

I'm not sure if you are familiar with what these things are. So here's a quick lesson in case you see them hanging off of me or someone else in the future.  These grenade shaped devices with tubes are stitched in at the end of surgery to collect blood and lymphatic fluid.  By collecting it in the drain it keeps it from staying within your own body at the surgical site potentially causing infections.  The drains are stitch to you on the outside then have to be attached to you at all times during recovery.  They are emptied several times a day and the tubing is stripped daily to make sure there aren't any clogs.  You have to measure and record the amount drained each day because once it is below a certain amount, they can be removed.  This picture is a very pretty version.  Mine are always hanging off of me with a varying shades of red-yellow fluid. 

Now I did say, the 2 drains were pulled.  Literally pulled from my body.  They snipped the stitches and yanked.  There were two nurses working with us today and they considered doing them both at the same time.  Dr. J said that I didn't come here for torture and advised them to do one at a time.  It was crazy to see how long the drain that was inside me actually was.  No wonder they were so painful poking around inside me all week. 

He said everything looked great and my healing was progressing even better than he expected.  It was so good to have all my questions answered.  I am still kind of an emotional mess, but at least I know that regardless of how bruised, swollen, and disgusting they look to me everything is going well in the professionals opinion.

2:00

2:00 cannot come soon enough.  I have my first post op appointment.  I'm hoping that at least 2 of these drains can come out.  I have so many questions for him.  I've spent the last few days googling mastectomy images because I want to know if this bruising is normal or if that sort of a look to my drain site is a problem.  I just want answer from a professional.  And I want to nap, but I'm too excited to.

Rough Day 5, Better Day 6

Yesterday day was probably my worst day.  Well...not actually worst moment.  I think the worst moment was one night getting so sick from the pain meds that I was standing upright in the bathroom vomiting uncontrollably.  The puking wasn't the worst part, staying upright puking was because I couldn't yet bend over.  You can just imagine the scene.  But back to yesterday.

It really should have been a good day in a lot of ways.  We successfully made it to the dance recital the night before and had the fresh memory of the cutest little girls ever twirling in their tutus.  There were some very nice people at the Park and Rec Department who snuck me in the auditorium a little early so that I wouldn't have to stand and wait in the crazy line or get pushed around in the mad rush when the auditorium doors officially opened.  The new snow gave the girls a great opportunity to get some energy out sledding thanks to Tim and Tavy.  They also gave us a great dinner and entertainment for the evening! Thank you so much!!

It was just a hard day for me because it was the first time that the girls were home all day and I realized all of the things that I couldn't do. I wanted to help get them dressed and ready for sledding.  I picked up Adrienne for a smallest second just to scoot her over while putting on her boots and immediately realized that was a mistake. After they were bundled up, Mitch realized that we had a flat tire, so I just needed to go outside for a bit and entertain them in the snow while he fixed it.  They kept saying "Mommy push me!" but I couldn't pull them in the tubes. I couldn't pick Adrienne up after she was stuck in her snow angel.  I could just stand there and cheer them on.  Even later in the day, I wanted to play with them but I could tell that I was starting to get light headed and needed to rest. There were just so many moments throughout the day from lunch to bath time and bedtime that I wanted to do things and I couldn't for my kids.

Even when I was by myself, I was struggling.  I tried to pick up a book and read, but I kept getting muscle cramps from my arms being in the same position too long. I tried emptying my drains and then forgot that the others were hanging there and accidentally knocked over one container spilling it all over the bathroom cupboard.  My drains started having significantly less drainage, which I originally thought was a great sign.  I started getting my hopes up that they'd be out for sure at my appointment on Monday.  But then the worrier in me kicked in and I started getting worried that there is a clot keeping everything from draining--especially because of the problems I've had with my compression bras feeling like they are directly on the drain sites.  I tried a new bra (which seems to be a daily experience because this whole compression 24/7 is harder than I ever expected).  Midway through the day the bra busted right open and will no longer stay closed.  Then at some point during the night I forgot what has happened to me and what I have hanging off of my body and I rolled over to try to sleep on my side.  I screamed out in pain and Mitch jumped up to help get me back to normal because I couldn't seem to move and gave me some more pain meds.

I slept soundly the rest of the night and woke up to a much better day. I heard the beautiful sounds of the girls eating Lucky Charms in the morning.  I just laid there and fell back asleep for a bit longer.   I just need to accept that I cannot do everything and need to sit back and watch for a little bit longer.  I just need to make it 2 more days until my appointment with Dr. J where hopefully these stupid drains will be removed.  I just need to do 2 more days of compression and hopefully the swelling will be down enough that he says I'll be free from these stupid bras perhaps forever.

I had a visit with 2 great friends today that helped me take my mind off of the struggles and have some delicious meals waiting for us tonight.  Day 6 is a much better day.

Day 4

Today has been just full of good things

1.  Pathology report!
2.  I handled the drains all by myself today.
3,  The scop patch has been removed for 24 full hours and my vision is now completely back to normal.
4.  The patch was helping fight nausea that happens with the pain meds, but now we have a good plan of attack with the pain meds and I have not felt nauseous all day.
5.  I found a compression bra that comfortably fits
6.  I had a good visit last night and this afternoon with some wonderful and helpful friends
7.  I'm feeling good enough to watch Aila's dance recital for a little bit tonight.

Day 3

Sleep, Sleep, Sleep.  That's all I want to do right now.  I work up at about 6:30 this morning and sat down at the kitchen table with the girls for breakfast.  But by the time they were ready to go at 7:30, I was already in the recliner almost dozing off again.  

I really expected the first night home to be awful.  But it wasn't.  Mitch set up my bed with as many pillows as possible.  I even took out my pregnancy pillow called the snoogle to wrap around and give my arms some support.  I also discovered that the boppy pillow was perfect for holding the ice packs in just the right place.   I put on the camisole that they gave me that has pockets for drains and then my super soft fleece button up pajama shirt on top of it.  It kind of makes me feel like I'm walking around wearing a life jacket.  But I did sleep well, only waking up once to take more pain meds.  

I've been sleeping on and off the rest of the day so far.  Mitch is back at work, but keeps texting or calling to make sure that I haven't gotten myself stuck in a position that I can't get up from.  He only works 2 minutes away, so I know that he can be here as soon as I say I need something.  I've been practicing breathing with this thing to help me be able to take deep breathes again.  

I'm surrounded by some beautiful flowers to make the day better as well.  Now back to sleep.