Under construction...

Stay tuned! I’m working on the conclusion (finally) of my answer about reconstruction.  Next up, “You can do it!l. 

Just when you think you're getting a break - WHAM!

2016 was the year of reconstruction. I went through 4 surgeries last year, the last of which was December 21. It was a long year and I was looking forward to a relatively uneventful 2017. Well, God apparently had other plans for me - or my uterus did. 

WARNING: to my male readers or anyone who doesn't want to hear about any uterus-related issues, stop reading now. I won't be graphic but there are some things just are what they are. You have been warned. 

Let me start with some background. I take a daily dose of a drug called Tamoxifen.  My type of cancer was hormone receptive so I take the Tammoxifen, which works to block the hormones.  This works in breast tissue. Apparently, not so much in the uterine area. Down south, from what I understand, the drug actually mimicks the hormones.  One of my super smart doctor friends will have to explain the "why" of that one. As a result of this weirdness, tamoxifen can have some less than desirable side effects. It can cause things like thickening of the lining of the uterus and uglier things like endometrial cancer. As a patient, I was informed of all of this from the very beginning. It's quite rare, affecting about 1% of users each year, but it is possible. The doctors, as always, did a great job of explaining the risks but also why the benefits of taking the drug outweigh those risks.  The other thing you need to know is that they will not/cannot do a "proactive" hysterectomy. Believe me, I asked! You have to have symptoms before they will yank the remaining lady parts out.  That means that I have to be diligent in keeping up with my regular exams and take advantage of the various screenings for which I qualify as a younger breast cancer patient. I have to know the symptoms and signs to look for and what to do if I have them. The other thing you need to know before we proceed, is that I went through chemotherapy induced menopause way back in 2014. Other than the raging hot flashes that came with it, it was the best gift of cancer treatment! Ladies, you know what I'm talking about. I was warned that things could start up again but it could really go either way based on my age. Maybe, maybe not. Now let's get on to our story...

I started working again last Wednesday after taking a couple of weeks off to recover. I didn't make the trip to Louisville until Tuesday 1/10 and went back again on Wednesday 1/11. I eased back in but was still dealing with soreness and the travel and the pace wore me out a bit. So by Wednesday evening I was spent! I thought I would just need some rest and try to slow down a wee bit and all would be well. Then it happened. My body said, "Not so fast there Sassy Pants!" Wednesday evening I started spotting. That's not good. It makes your brain jump ahead to the list your doctors gave you of things you have to address quickly. Your brain also tries to convince you of the weirdest things. Things like, you've overdone it, you're doing too much too quickly.  Really?! How much would you have to overdo it from reconstructive surgery to make your dang uterus leak. It makes no sense! Anyway, spotting is scary - any unexpected bleeding of any amount after menopause is not a good sign. Yes, I began to stress, just a bit (a lot). I considered for a moment that I might not share this development with anyone...but the moment passed. Rewind to my initial breast cancer diagnosis, I made the choice at the time to not tell anyone I had found a lump or that I would be going through tests, etc. My family and friends received the news after I was diagnosed. I vowed that I would never do that again. I immediately let Bobby know, though he knew something was up because of the look of fear in my eyes. After the initial shock wore off, I was able to sleep...well, more than I expected, anyway.  

First thing Thursday morning, I called my GYN to schedule an appointment. When I explained the situation to the wonderful lady on the other end of the phone, she said, "He's going to want an ultrasound."  Yep! She scheduled me for an ultrasound first thing Friday morning and a visit with the doctor immediately following. Great! I was all set. But, I had 24 hours to wait. Have I mentioned that I don't do waiting very well. I kept busy with work and household responsibilities. I'll spare you the details but as the day went on, things started to change a bit. Things changed enough that I began to believe that, based on my symptoms, this might not be cancer, but a case of overachieving ovaries. Could it be possible that I went through menopause 2+ years ago but things started up again? Could I be "lucky" enough to have the opportunity to go through menopause, not once, but twice?! It was looking that way - that's good news!

When Friday morning came around, I got up early and headed to town. All went smoothly - I quickly found a good parking spot, I actually arrived at the office door before it was even unlocked. When they opened a few minutes later, I was checked in quickly and then escorted to the ultrasound waiting area. For anyone who hasn't had an ultrasound, the techs are not permitted to provide you with the results. The doctor has to deliver that news. Once everything was done, the very sweet tech simply said, "I got some really good pictures for the doctor."  It's kind of difficult to interpret anything from that but I remained optimistic. I headed back out to the main waiting room. I didn't have to wait long before they called me back to see the doctor. I chatted with the kind nurse, she took my vitals, we discussed my history, etc. As she's typing her notes into the system, I look around the room and I noticed that the counter across from me held off the tools necessary for a biopsy. Yay!  Again, this was not a surprise to me. I told Bobby the night before that I expected a biopsy whether the ultrasound showed anything or not. If it did, I would need to have that tissue tested. If didn't show anything, they would want to be safe and would test the tissue to see if anything came back. Sometimes it's not always fun being right.  The nurse wrapped up and a few minutes later my fabulous doctor joined me. Bless him, he started off by saying, "You've really even through it, haven't you?"  Yes, it's been an interesting few years. I'll spare you the rest of the small talk and get to the good part. The ultrasound was clear. He didn't see anything that concerned him. He said that there was thickening of the endometrial lining but that was expected with the Tamoxifen. He then officially broke the news that a biopsy was imminent. He advised that a prophylactic hysterectomy wasn't recommended but that he would likely be doing a D&C in the not so distant future. So much for 2017 being procedure-free. 

The biopsy was not very pleasant but, thankfully, it was over in a couple of minutes. We should get the results back by Wednesday. Of course our hope is that it comes back negative, as we expect it to. If you have any prayers left to spare, whisper a quick one for negative biopsy results. If they do come back with any abnormalities, I expect that I'll be having a hysterectomy rather than a D&C.  We will accept whatever comes next and meet it head on. 

I'm reminded that this is our new norm. Once a cancer patient, always a cancer patient. 

I'll keep you posted on results and next steps. 

Love to all!

Andee 

The letter - Part I

Dear Andee 2014,

You don't know it yet, but your life is about to change. On the evening of March 15, 2014 you are going to find a lump in your left breast. Because it's a Saturday, you're going to stress about it until Monday morning when you can call the doctor. You will suffer silently because you're not ready to tell anyone...not even your husband. Some part of you believes that if you don't say it aloud, it won't be real. You'll keep telling yourself that most lumps are nothing...but your gut continues to tell you that's not true for you. The lump is not small. You will keep trying to convince yourself that you were obsessive about self exams so it can't be cancer.  You checked regularly. You will get online and do research. You'll find multiple articles that say breast cancer doesn't hurt. That's somehow comforting because you have had pain. You will attribute that discomfort to an ill-fitting bra.  When you wake on Monday morning, you will feel sick. Nerves...all nerves.  You will opt to stay home from work. You will decide to tell your husband what you found and that you're calling to make an appointment to get it checked. You will try to assure him that it's probably nothing but it's best to get checked and know for sure. You contact your boss and HR  director at work and explain the situation...what's making you feel sick. They are understanding and supportive (and will continue to to be, well beyond this day).  You contact the doctor's office and let them know what you've found. They schedule an appointment for you on Wednesday. Ugh! Two more days of waiting but at least you are doing something. You will do what you always do - you will throw yourself into work and anything that can keep your mind occupied. You are one stubborn old b#@ch...good thing though, because you are about to be tested.

to be continued...

The exercise challenge

7/13/16

Hello from Andee's world!
I thought I would stop by and do a little sharing. Just what your day needed, am I right?!

Tonight I am sharing some details on why getting back into an exercise routine has been such a challenge. For those of you who are new to our party, I will catch you up. During treatment (for me that took most of 2014) I gained weight. I know what you're thinking....probably the same thing I thought. If there was one upside to this cancer thing, I thought it would be that I would get really skinny. Weeeeell,..not so much. My treatment cocktail included a lovely dose of steroids. When I got into round 2 (the 12 week round of chemo), I received steroids on a weekly basis. The steroids do all kinds of wonderful things to help manage issues during chemo, but they also make you fat! What I didn't know is that I would quickly turn into Uncle Fester. Bald and fat, that was me. Every girl's dream!

Once treatment was over (last of 33 radiation treatments was on December 17, not that I remember specifics or anything) I took some time to rest and recover but when January 22 came around, I started my serious workout and eating plan and by March I had dropped 20 lbs. I was serious...and focused on the goal. I started with 21 Day Fix and then moved on to 21 Day Fix Extreme. I'm not advertising or anything, just offering my personal experience. I noticed a significant change in my body in DAYS. Inches lost immediately, things toned up...all the stuff you want. I was counting calories only (they didn't originally send all of the 21DF containers and I didn't want to wait). I was like a machine for a while. About mid-year, my cancer patient mentor passed away. I've written about going into a pretty bad place. The short story is that I was thinking about cancer every single minute of every single day. I was upset about the people I know that cancer has taken away. I was terrified of recurrence. It was not a good place.  If I'm being completely honest, which I am, I stopped exercising AND started eating my emotions. I have to say that the last quarter of last year was not good for me. I was mad at myself for letting myself go and also, there was a bit a stress added when I learned how extensive my pending surgery would be. It was a lot to process and I did a crappy job of processing it.
When January rolled around it was time to have surgery #1. On January 11, I had the first of 3 surgeries. 3 (short) weeks later I had my second surgery. At that point, the latissimus dorsi muscle was pulled around from my back to my chest. You can go back and read the details of the procedure but, the short version is that the muscle and skin became part of my chest BUT the muscle is actually still attached to my back. Crazy right?

https://sites.google.com/site/cancerbreastinfo

 Since it was not removed and relocated, just relocated, it still works like a lat muscle. Though the muscle has atrophied some, and will continue to do so, it's still a weird sensation. You probably don't know exactly when your lat muscle is engaged on a daily basis. I can now tell you! That's because when I do something as mundane as push on the arm rests of a chair as I try to get up out of a chair, it engages that muscle and it pulls like crazy. Even today, it feels like bad things could happen when I rise from that chair or try to get out of the bath tub. I try my best to modify how I do things but sometimes I just have to push through and deal with the discomfort.

Now, finally, let's talk about how this impacts exercise.  After waiting a few months to make sure I healed completely, I tried my 21 Day Fix/Extreme routines and also ventured into the Hammer & Chisel program. I was having to modify so much that I wondered what the end result would be if I kept going. I think I'll be able to go back to weights (have I mentioned I loved that?) in the future but probably not this year. I have one more surgery to go, which will likely take place in the next couple of months. I decided I just couldn't wait until next year to start working on myself again. So I had to sit down and figure out what was going to work. I have put up my weights (for now) and I've focused on finding something I can do now. I settled on the Cize program, which is a dance program and I LOVE IT! For people who don't know, I spent my time at dance class and competing from age 4 to age 18. I ended my "dance career" as a member of the University of Kentucky Dance Team. I have always loved to dance and I've had weekly dance parties with my babies for the past several years but no classes in AGES. I'm so enjoying the fact that I'm able to do this again. I still have to modify a bit but it's a blast and it burns 300-400 calories a pop. Positives all around.

So my program now is Cize at least 5 days per week and weekly meal planning and prep. I'm down 5 lbs in the first full week of meal planning and exercise. Yay! It's not much but it's a start. I'm feeling so much better and I'm excited about what's to come.

I guess the message of this post is that we all have limitations. You just have to figure out how to do what you can with what you've got and make the very best of it. It can take a little work and some planning, but you can do it!

Love to all,
Andee

Finalized 7/24/16

7 days

I haven't posted in over a month? That's just wrong!  I started this post earlier this week. Sorry it has taken so long but I'm back and posting!

__________________________________________________________________________________

It has been an interesting 7 days.  Life continues to throw surprises and tests our way and, believe it or not, even though we are old pros at this, you never get used to it.  I think we've gotten better at handling the curveballs (I'd like to think so, anyway) but dang! As always, I'm sharing my business in hopes of educating and motivating others to take their health seriously. Let's get started, shall we?

On Monday June 27, I was scheduled to visit my plastic surgeon's office for a fill. I arrived several minutes early so I sat in my car for a while. I was browsing some things on my phone and I took a minute to send Bobby this picture with a caption that said something like "This sounds about right." Little did I know...

 For some reason, before I got out of the car I checked my appointment card and realized that I was over an hour early. No big deal...better than an hour late, right? I went and grabbed some breakfast and came back. When I went inside they took me right in. I got changed and prepped for my regular needle sticks and expansion. When the nurse got ready to start she paused for a moment. She said she noticed something on my skin. She said she had never noticed it before. She grabbed a mirror and pointed it out to me. She asked if I had noticed it before. I told her that it may have been there but one of the things I haven't spent a lot of time doing over the past couple of years is looking at my chest.

She carried on with my fill but she seemed concerned. She was wonderful and after suggesting I get it checked out, she even attempted to get me in with the dermatology office across the street. Unfortunately, they were booked so she suggested that I return on Tuesday so Dr. Hall could look at it. So the appointment was made and I headed home. Was there some anxiety? Yes. Who am I kidding, there was fear. After checking out the spot I realized why she was so concerned about it. It fit all of the "worry if" criteria for melanoma. Not symmetrical, larger than a pencil eraser, etc.  The only thing that kept me from flipping out completely was the color. The shape and other characteristics looked a lot like the melanoma pictures I found - but it was lighter. Remember back in the early days of the blog, I talked about looking for the Silver Lining in everything...well, here's one for this experience. I kept telling myself that it didn't look EXACTLY like those pictures so I held out hope. I won't lie - at one point, there were some tears. It's not easy to deal with scares but I guess that's part of my life now. I allowed myself my time for self-pity and had my "how much is one person expected to take?" breakdown. Then I pulled myself together and faced the test.

I returned to the office @ 9 AM on Tuesday morning. Dr. Hall checked everything out and said she would never forgive herself if she didn't do a biopsy and it turned out to be something. That means scalpel and stitches. Luckily, I have no feeling in the skin in that area so she took the sample and stitched me up. Now it was time to wait. I won't take you through boring details of the next few days but let's just say I kept myself busy to keep that "what ifs" out of my head. I don't know how much you know about melanoma but it is not something you want. Scary, scary stuff.  Needless to say, it was a more stressful week than normal, but life must carry on.

On Friday afternoon, Dr. Hall called me personally to let me know that she had gotten the results back. I was a little scared at first because I feared that she didnt' want anyone else to give me the bad news. (And breathe....) She said she received the results and there was no cancer. At that moment I was pleasantly surprised and very happy!  I thanked her for calling and letting me know. About 15 seconds after I hung up the phone, the tears came. I knew I was worried, on some level, but I had no idea I would respond the way I did. It was like the gates opened and the emotion just flooded out. What a relief.

If you've been a follower for a while, you know I believe that life has a way of smacking you in the head to make you focus on what's important. This was my reminder that I need to get back to focusing on myself. I must look after myself first or I won't be strong enough to get through life's challenges, take care of my family and work at my best. So here we go with the "me first" campaign.  It's not selfish - it's about taking care of this one body that I've been given, as defective as it is, it's the only one I have.

So, my message to you is to make sure you get yourself screened. if there's a spot that doesn't seem right, get it checked out. Mammograms, colonoscopies, and all other screenings can be scary but they are nowhere near as bad as cancer treatment....trust me!!

Back soon!

Love to all,

Andee

The Iron Bra

Hello, hello, hello!

It's Iron Bra time! No, I'm not starting an industrial lingerie line. That's the term that some wise woman came up with to describe what your chest can feel like during reconstruction. So let's start at the beginning.

Tissue Expanders

You might recall from a previous post that I mentioned that expanders are a lot like empty implants. Well, there's more information to share. Saying that they are "like" implants doesn't paint the full picture. Even though they are filled with sterile saline, they are NOT soft. In no way, shape or form are they ANYTHING like the final implant. They are NOT squishy, they DO NOT jiggle, and there is absolutely NOTHING realistic about them. They have to be stout to...wait for it...expand the tissue! That means they can't be warm and comfy. Also, as you can see below, they are placed under the muscle so they do a nice job of rubbing against your ribs from time to time. They don't move around much but you certainly feel the love if you roll over in your sleep or, oh, I don't know, if you're wearing a compression bandage. 

Now, when you get them filled, everything is really tight and quite firm. Over the span of the week or two between fills, things ease up a bit but you never really forget they are there. 

Wait a minute...I don't wear a bra

With all that stretching, strange things happen. Add in muscle spasms and scar tissue adhesions and you might feel like you're wrapped in a compression bandage or wearing a very tight bra when you ARE NOT. No kidding.  There are some days that I couldn't tell (without looking/feeling) if I was wrapped up or not. If you were to cover my eyes and tell me to guess if I was wearing a bra or a bandage, I couldn't tell you for sure. From what I've read, some women even have trouble/discomfort breathing. Someone even described it as feeling as if she was wrapped up in duct tape. For me, the "Iron Bra" isn't painful most of the time. It's very uncomfortable but I don't really hurt until the fluid gets out of control. We'll talk about that later. 

Let It Go, Let It Go

Scar tissue SUUUUUUCKS! I had an issue with adhesion after my mastectomy. Pretty sure I wrote about it. Basically it feels like your skin and underlying tissue are attaching themselves to your ribs. 

That's because that's kind of what's happening. I went through physical therapy the last time and we worked hard to break that stuff up and had great results. I thought I was in the clear this time around until late last week. My back started getting tight and I thought it was just because of the bucket of fluid on my back. By Monday, there was no doubt what it was. When I raise my arm, it feels like I'm going pull out some ribs. The only way to help myself is to stretch and try to massage the tissue to loosen it and pull it away. Yes, it's as uncomfortable as it sounds. At some point there will be a disgusting POP, a burn and then some relief.  I'll keep you posted on my progress. 

The gift that keeps on giving

I'm still battling the fluid. Friday will be 2 months since surgery number 2 and that stuff just keeps on coming. This last time it got pretty bad. I had get it pulled off twice in 10 days. This time around it caused pain in my arm, it feels like I have another cord. Cording is crappy too but I'll spare you the details on that. Just know that it hurts, a lot, but it will eventually work itself out. 

And then....

The healing, and the expansion, continues. I'm thrilled to report that I was cleared to work! Things are modified a little as long as the fluid is an issue but I'm excited to use my brain cells and communicate with people on the outside. Woohoo!

So there it is, all the news that's fit to print. 

Love to all,

Andee

The Journey Continues

I'm starting this post at 11:57 so it will still qualify as an anniversary post. Yay me!

Before I get started, I just want to share something with you. I purchased a dress last fall that I intended to be my Easter dress. It isn't anything showstopping, but I liked it. It's been hanging in my closet for months. I was excited to get it out this morning but there was a problem. Just like every other woman on the planet, I took a deep breath and hoped that my weight wasn't so out of control that the dress wouldn't fit. I pulled it over my head and all seemed to be well. Then it came time to zip it up. Oh boy. Let me explain something real quick. This isn't one of those dresses that zips up the back, or buttons up the front. Nope, this one has a relatively small zipper on the side that runs from the waist up under the arm. So, everything was looking pretty good until it came time to zip. The first few inches (waist) zipped right up. Beyond that, things were challenging. For a moment I was on the verge of tears but then it hit me. My dress didn't fit because my chest was too big! Yes friends, I'm almost busty! (Just a note: Yes, I realize that the part, if not most, of the problem is the gallon of fluid I'm carrying around but let's just let me let myself believe that my bosom is the culprit. Thank you). Luckily, I had another option but who would have thought I would get a warm and fuzzy feeling from a dress not fitting?  It's a miracle, indeed.

Two years ago today, the last thing I was worried about was how my clothes would fit. I had been dealing with the prospect of cancer for almost two weeks but it's a whole different ballgame once it's confirmed. After the diagnosis, things moved very quickly. 2 1/2 weeks after diagnosis I had a bilateral mastectomy. Thirty days later I started treatment - chemo and radiation would carry me through until December 17, 2014. I had a bit of a break in 2015 (infusions every 3 weeks until July and one surgical procedure) but 2015 was a more challenging year, especially on an emotional level. I spent the first 3 months of the year busting my behind to lose the weight I gained during treatment. I lost most of it and then, due to some happenings in my circle of cancer friends, I slipped into a bit of a funk. It was not a good time. I won't bore you with the details but I fell off the wagon, started eating my emotions and started gaining weight. Nothing like being borderline depressed and then reverse all of the hard work that you did. That does a real number on your self confidence. I was able to pull myself out of the funk (cancer stopped being on my mind 24/7) and I was on the upswing. The end of 2015 was all about preparing for 2016. The year of reconstruction. I knew I was going to be off work so I was trying to wrap things up there while trying to prepare for the downtime tied to the first two surgeries, which happened within 21 days. I'm pushing through the frustration of not being able to do much and that is SOOOOOO difficult for me. Every time I get really frustrated, I remind myself how blessed I am. The pain, challenging recovery and the frustration are only temporary.

So here we are, 2 years on from the day that changed my life. Regardless of what happens I'm still here, I still have a fighting spirit and my goal is still to help provide support to as many people as I can. To all of my Pink Sisters (and any other cancer ribbons...all are welcome!) who are just beginning their journey, I promise you will find strength you never thought you had. You will be humbled by the level of support you receive from those who love you, you will feel fear, you will feel ugly, you will cry, you will laugh and you will learn far more than you expect. Soon, you will be one of us....one of those crazy women. One of the ones who says that cancer sucks but, in some strange way, they feel blessed to have gone through the experience. I am not the same person I was on this day 2 years ago. I am stronger, I am more appreciative of the little things in life, I have a burning desire to make a difference (I'm still figuring out how to put that into practice) and I remember that I need to put myself first (work in progress).

I have more to say but I'm tired so I'm signing off.  Before I go, let me say thank you. Thank you for joining me on this journey. Thank you for your comments, your calls, your messages...every kind of support makes a big difference.

Much love to all!
Andee

The song of the day - My Seroma

Sing with me!

My Seroma!





Today has been rough. My seroma(s) have taken over. My back feels a whole lot like a waterbed when you push on it.  Gross, I know, but we're all about the really real stuff here, remember. I have had the compression bandage on and off but the situation is still ugly. There is a bit of pain, lots of discomfort and, of course, a good amount of pressure. Don't think I haven't considered popping a straw into the hole left by my drain tube. I wouldn't really do it but I've thought about it.

At this point, I just need to make it through until Tuesday afternoon and then I can get some of this stuff pulled out before she fills up the expanders. What a fun day that's going to be, don't you think?  :-)

Today's post is brought to you by the word seroma

Wednesday January 27, 2016

Here we are, day 1 after the tube was removed and I already have a seroma. It's not too bad, but it's there. I'll let you know if I get to the beachball stage. The thought of that just plain grosses me out. ICK!
I'm tired (even after a nap!) so this will be short.
'Night!

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Friday January 29, 2016

As you already know (assuming you read the post from earlier today), things got worse over the next 24 hours but I'm feeling much better today. I feel a little like I'm wearing a float my chest. You know I'm very visual about stuff and I searched for a funny picture to post to give you an idea what it feels like. I have been unsuccessful in my search. So, imagine, if you will, wearing one of those doughnut-shaped floats around your chest. That will give you some idea what the sensation is like...except mine is more like a half doughnut. It's weeeeeeird. Last time this happened, it got so bad that I actually looked forward to seeing my surgeon come at me with something like this...

www.starsyringe.com

...and jab it in my chest. I don't think the syringe in the picture above is big enough but all of the pictures that show the actual type they used on me, come in pictures of them actually being used. Nobody wants to see that. Anywaaaaay, I'm not to the point that I'm feeling all dreamy about a big needle but I'm not comfortable. I'm still wrapped in the compression bandage (which I am now calling my "warm hug", in all of it's velcro and elastic glory), and I'm sure that's helping so no real complaints.  It could always be worse.

STRAIGHT TALK ALERT.

My drain site is looking a little better, though it still looks a lot like a wee GSW. It has sealed nicely and the angry skin around it is looking better. My back incision is still a little red around the edges but the worst parts are the areas that scabbed over. I've been treating them to try to soften them but it if I stretch a little to far...well...it kinda feels like that end of the incision is just going to pop loose and that whole flap is just going to fly off.  #plasticsurgeryproblems

My arrival and surgery time are confirmed. Once again, we will start early on Monday morning and I'll be on the table for 6 hours or so. I'll come out with 3 brand spanking new incisions over the 3/4 of my torso, 2 new foreign objects implanted (expanders, no foobs yet), 3 new SUCKY drains (no pun intended) and a catheter in my back. My goal is to maintain my really inappropriate sense of humor right up until I nod off and then showing my monitor to friends and family as soon as I can. If you're new to the blog, here's a picture of me showing my monitor prior to my mastectomy. It's become kind of a thing.  I think my husband and siblings see it as my version of "thumbs up" after surgery.

I could ramble on for a while longer but I will spare you for now. I'll write some more about my thoughts on the upcoming procedure and pull out some throwback posts.

Much love to all!
Andee

2 weeks after surgery: The Really Real Truth

Good evening friends.

I'm baaack. I'm officially 2 weeks past surgery #1 and now a mere week away from surgery #2. It's time to discuss the experience thus far and consider what's ahead.

First, this...I've thought long and hard about posting pictures and have finally come to a decision. I will share some things but nothing I wouldn't show my kids.  That means, if you're curious about what's been done so far and what's coming, you can take a look. I'll have drain pics (my least favorite), a surgical site pic (as of now, no foob pics will be posted as I want to keep it family friendly) and anything else that might not be Instagram/Facebook appropriate (based on my personal standards). If you want to look, you'll be able to. If not, my business won't be in your face. Enter the photos page at your own risk. I will likely try to ease the yuck factor by posting in black & white. It makes it a little more tolerable.

Now, updates on life after surgery.
This has been challenging. I know I sound like a broken record but I had no idea what to expect when this part of the journey started. I'm going to share the ups and downs of recovery thus far. My intention is not to scare you if you are considering reconstruction, I just think that it's important to understand what you're getting into and what you can expect. As always, I will insert the disclaimer that the experience is probably different for everyone, but this is my story. I'm sharing the details so consider yourself warned.

I've mentioned that this has been physically challenging. I'm not sure that I have explained why. The drain is an inconvenience and a maintenance item. You have to empty the bulb at least 2 times per day and you also have to strip the tubes at the same time...I do it more frequently than I empty them. I've shown you a diagram of the JP drains before so I won't do it again. I will share a little bit more about what they do and a little detail on the maintenance. To my medical friends, feel free to share more clinical (and correct) explanations in the comments or on FB. I don't have formal training, I'm a just a professional patient.   So back to the details. The drain helps remove fluid/blood after surgery. Often, there's some tissue/maybe clots that make it through the tube - sometimes it even blocks the tube. After my mastectomy, I only had drains for a week post-op but they were a pain! The one on my left side got a little backed up and leaked where it exited my chest. It was awful! I've had the current drain for 2 weeks now and it's still producing. I've been diligent about stripping the tubes and haven't (yet) had any backups. The JP drain works kind of like a vacuum. When the bulb is empty, you squeeze it and then close the top. It then gradually pulls the fluid (and whatever else can fit down the tube) into the bulb. The bulb will hold up to 100 ml but I never let it get that full. The goal for removal is to be producing less than 30 ml daily. I'm not even close to that yet. I emptied it this morning and measured 60+ and as I sit here now I'm guessing that it's holding over 70.  I see my plastic surgeon tomorrow and last week the nurse told me that the drain would likely come out regardless of production. So what does that mean? That means, if they take the drain out, I'm likely to end up with another seroma. That means fluid build up at the surgical site. Oh yay! Eventually your body will absorb the excess fluid  but the build up can be painful. I had to have seromas aspirated on both sides after the drains were removed after my mastectomy. I've never been so happy to have a huge needle jabbed into my chest. No kidding. So, if the drain comes out tomorrow, I'll probably have to deal with some fluid build up, which can be uncomfortable and painful. I'll deal with it. I just want a few days drain free before the triplets show up. UGH!

So, you might be wondering what I mean when I say that I have to strip the drain tubes. It's a lovely process that requires me to pinch the top of the drain tube (which I can barely reach due to its location) and squeeze as I slide my fingers down the tube towards the bulb. This pushes the fluid and tissue down the tube and (hopefully) into the bulb. Sometimes the tissue is stubborn and you just have to wait until it makes its way down on its own. Sounds lovely, right?

As I mentioned, tomorrow I go for another post-op follow up and will likely get the drain removed. The drain exits my side about 12 inches +/- below my armpit. Based on what I saw when they pulled out my first drains, there are several inches of tube that goes from that point into or near my surgical site. The tube is held in place by stitches. If they remove the drain tomorrow, they will have to remove the stitching and then just pull that sucker out. It's my least favorite part of the process. That last time it didn't hurt, really. It was not the most comfortable experience but it's over pretty quickly. I think my front was much more numb than my back is now, though it is pretty numb. I'll let you know how awful it is tomorrow. If it hurts, I'm sure I'll forget all about it because I'll be overjoyed to be drain free for at least 5 days.

Now on to the rash. It's not 100% gone but it is SOOOO much better. I'm not excited about the prospect of having the rash over 75% of my torso next week but I'll do my best to prevent it. The surgeon is aware and is ready to treat if I react again. I'll also be ready to aggressively wash that stuff off as soon as I am able. I'll probably still have a reaction but hopefully it will be minimal. If it's a full blown itchy nightmare that covers my torso, I will be asking for some sort of sedation so I can sleep through the worst of it. No joke! I don't think it will come to that but I'm prepared.

My surgical site is healing nicely, from what I can tell. I still have 60 stitches, which I hope to have removed tomorrow. The hardest part of the process has not been skin/incision related. It has been that poor angry muscle that was detached and "tacked" back into place. Trust me, you have no idea how much you use that muscle for even the slightest movements. Even two weeks after surgery, there are certain movements that make it spasm. Just standing around it feels like it's perpetually contracted. It's bizarre. And recently, once the swelling started to go down, I started to really feel it. Sometimes it feels like it's going to pop loose and roll up like a window shade.

I've done some research, trying to prepare myself for this experience. It sounds like I'm (possibly) in for nerve pain, muscle spasms/cramps and general discomfort for the next few months.  I've read about the experiences other women have had so I'm prepared but, again, my experience might vary from theirs. I'll give you the play by play as it happens.

As I close for tonight, let me just say that I'm feeling more and more like myself each day. I understood at the start that I would not be fully recovered from surgery #1 before we rolled into surgery #2 but I'm feeling better about it each day. Even two short days ago, if you had asked if I was ready for #2, I would have given you a big fat NO! I'm in a better place mentally and physically. I'm ready to get it over with and move on to recovery so I can be ready for the next phase.

If you have questions, as always, feel free to ask. For now, I'm going to bed.

Love to all!
Andee

Let's talk drains

It's been almost 2 years since we talked about drains. If you were around for the first one you can skip this explanation. If you're new to my world, you are getting ready to learn something. This post might not be for everyone. The drain tube doesn't hurt but it's not easy to look at. As a courtesy, I won't show you my actual drain, I will use my trusty old illustration. Again, my setup varies a bit from the drawing but you get the idea. My tube exits on my side and it's several inches below my surgical site. I have to empty the bulb, which I refer to as my bulbicle, at least twice per day. For now, I have to do it more than that because I can fill the bulb. Nice, right?

I'm not sure how long I will have to keep this one. After my mastectomy, I only kept my drains in for a week. My PS said that the back drain would stay in the longest after the "big" surgery. She estimated 3 weeks. (Oh please, NOOOOOOO). So it could be as long as 3 weeks. It won't be any more than that because I have surgery again in 3 weeks. When I come out of that I'll have a newly placed drain for my back and two more in the front. Can you feel my excitement? I'm sure that you can.  

In other news, I've developed my "rash caused by whatever that stuff is they put on your skin before surgery to keep the cooties away." 

This pic shows some of my remaining ink as well as the redness caused by the aforementioned "stuff" that dripped down during surgery since I was lying on stomach. Never a dull moment in my world.

Well, today hasn't been so bad. I've felt pretty good but I'm absolutely worn out right now. I should have taken it a bit easier and snuck in a nap. Maybe tomorrow.

Bye for now.

Love to all,
Andee

So, I'm home

:Hello friends of the blog,
Here I am. I'm home and already bored. I don't do idle very well so I'm trying to get myself organized while not overdoing it. I can't drive and I can't lift more than 5 lbs. I also received explicit instructions to not vacuum for at least 12 months. That's not a joke, she really said that...now SHE might have been joking but I don't think so. I think she was quite serious. Ask Bobby, she said it to his face!
Anyway, our overnight stay wasn't bad. I slept ok and they didn't poke on me too much through the night. I had a lovely cholesterol free omelet and baked hasbrowns for breakfast (they had the "Wellness Menu") and then we had a lovely visit with my brother in law and then they turned me loose!
We were home by Noonish, had some lunch and then I needed something to do. So I cleaned off my desk - trust me, it needed it - and then I started menu planning. I had to take a much needed nap and woke up to dinner from my dear mother in law.
Now I have the kiddos in bed, I've taken a shower and realized that it's going to take a few days to get the ink off (yay). Now I'm ready to settle down for good night's rest.
For those interested in the surgical experience, I have some swelling, the drain is producing a lot since I'm moving around more and we are guestimating that I have 30+ stitches. We're not going to take the time to count them (yet) but there are a bunch. The area is about the size of a small nerf football and almost the same shape. The incision she made yesterday is not just in that shape because she had to make a hole big enough for her arm, that piece of skin will be moved along with the muscle when I have surgery #2 in about 19 days. Here's a visual in case that description makes no sense.

from: http://www.mayoclinic.org/tests-procedures/breast-reconstruction/multimedia/latissimus-dorsi-flap/img-20005836

So, for right now, I just have the incision from the picture on the far left. She opened me up and then closed me back after detaching the muscle. Next time around she will release the muscle again (since it will already be working on reattaching), tunnel it through under the skin under my arm and will pull it through an open incision in my chest. That skin will fill in the space that my radiated skin cannot. Once it opens up, since it has no elasticity anymore, it can't be pulled back together and expected to hold up. It would pop open again. She said that it will likely pop open a little even after this procedure. She expects to have to stitch me up a few times as we go through the process.
As a reminder, this process is going to take most of the year. I will have surgery part 2 on February 1st. She will move the muscle on the left side and also do some work to the right side before putting in the expanders. I then have to heal for at least 6 months before we start filling the expanders - depending on how my skin holds up, that process could take weeks or months. Once the expanders are the appropriate size, they will be removed in yet another procedure and will be replaced with the permanent implants. There will be some other minor procedures as part of the process but those are the biggies. So, the phase 3 journey has begun. We've been through Phase 1 was diagnosis and surgery. Phase 2 was treatment and Phase 3 is reconstruction. Wow, what a ride.

Thanks for checking in. I'll update you again tomorrow. The next couple of days will likely be the hardest, physically, day 3 tends to be the worst but we'll see. It's not been too horrible so far. *KNOCK ON WOOD*

Love to all,
Andee

Dirty Little Secrets - Part I

Yes, I have some dirty little secrets.

SCANDALOUS!

Not really, because I'm just about as boring a human being as anyone has ever met. But, as often happens here on the blog, I'm going to share with you...my friends...the things I don't ever talk about. It's not about pride or anything like that. I just don't like to focus on the more challenging aspects of being a cancer patient. The treatment experience had its challenges but all of those were expected. The post-treatment world presents me with something new on a regular basis. I don't want anyone facing the Big C, in whatever form, thinking that treatment ends and life returns to normal. It's not awful, it's just different. I believe that attitude plays an even more important role after treatment but I find it more of a challenge to focus on the positive. That sounds much more depressing than it should. Let me explain.
Tonight we will cover two.

Dirty Little Secret #1 - Anxiety

It sneaks up on you. You find yourself stressing about all manner of things. I tend to get anxious about recurrence. I went through a phase a few months back where I thought about cancer every minute of every day. I'm not even exaggerating. It was a pretty dark period. When you have that level of anxiety it begins to take its toll on you physically. I would have moments in the day when I felt like I couldn't catch my breath. It felt as if someone wrapped a band around my chest and pulled it tight. It got a bit scary. At the time, I kept thinking "oh dear, it's in my lungs!". (For those who don't know, when breast cancer travels, it tends to go the brain, liver, bones or lungs). I "knew" it. The next time I saw my doctor I asked him about recurrence and what to look for, etc. We had a great talk and he put me at ease. I also put myself back in the mental space where I decided I would focus on what I could control and the rest would be in God's hands. The symptoms went away instantly.  INSTANTLY!

It happened again in the days leading up to my CT last week. As I mentioned, any sort of scan or test ramps up the worry. "Will they find something?" I had pain in my chest (surgical area, not heart), my neck was stiff, I felt a milder version of the "band around the chest" sensation I mentioned before. I realized this time that is was probably anxiety but that didn't make it go away. I received my results on Friday night and woke up on Saturday feeling like a whole new person.

I'm sure this cycle will repeat itself for the rest of my life. Each time I'm getting a little better and dealing with it. I can only speak for myself but I think this is probably quite normal. If you're dealing with it, talk about it, address it. Carrying it all around and trying to deal with it on your own might not be enough. I have a great husband who serves as my listener/therapist but I'm not afraid to go pro if I feel like it's necessary. If that happens, y'all would know about it.   ;-)

Dirty Little Secret #2 - Pain

I don't talk about this at all. In the past few days I've mentioned it to a couple of people but typically I just deal with it and accept that it is part of my life now. My surgical site, specifically my left side (the lymph node side) hurts. The site of incision is numb but the area under my arm and down my side hurts all day every day. It's tender to the touch, and by that I mean if I sleep on my left side for a lengthy period, I'll be sore for days. and sometimes it's just bad. For me, it's unpleasant and can be very painful but I don't need medication. I accept it and tolerate it. Most days aren't so bad but it's always there. Today it's achy and a mild burning pain. I'll spare you the technical explanation but nerves can be damaged during the mastectomy and about half of all women who have had a mastectomy will experience Post Mastectomy Pain Syndrome...yes it has a name. Though I had a bilateral mastectomy, I only have pain on the left. Thank you for small favors!

Remember, everything isn't perfect. Cancer sucks. Treatment sucks. Side effects suck. BUT

LIFE IS BEAUTIFUL!

Back tomorrow.

Love to all,

Andee