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...

Pain and Perspective: Part I

Part I - Pain

If you are a regular, you know I have a rule about not posting when I'm either in pain or in a bad place. I always write about it, after the worst is over, because I feel like it's important to share the challenges and provide a real-ish picture of what this journey can be like. I say "real-ish" because everyone's road will be different, no two experiences are ever the same, even if the diagnosis is. This blog is a peek into my journey through diagnosis, surgery, treatment, trying to return to "normal" and the reconstruction process.

First, I guess I need to bring you up to speed on where we are. As you recall, the reconstruction process started in January. My first surgery was January 11. Surgery #2, or "The Big One" as I like to call it, was done on February 1st.  Since that time I've been seeing my (spectacular) plastic surgeon every 2 weeks. In the early days, there was more fluid removal than addition but after a couple of months, that finally went in the right direction. So, for at least 6 months now, I've been getting fluid added to Satan's Water Balloons (SWBs)(the clinical term is tissue expanders) every couple of weeks. Early on, I made the mistake of saying the following aloud to my nurse. "You know, these things aren't the most comfortable but they're not as bad as I expected. I keep hearing awful stories about expanders from those who have gone before me and they just aren't that bad."  Without hesitation, she responded "Oh, they'll get worse." You know where we go from here, right? With that fill, the real pain started. See, you're thinking that an expander is just a saline filled implant. Um....NO! I wrote about the "Iron Bra" a while back. Well, we have advanced quite a bit since then.

I won't revisit my entire list of medical issues but I will remind you that I have a muscle that was relocated and some pesky scar tissue. For months, I've been going to PT to help break up the scar tissue and improve my range of motion. The tightness and discomfort has improved significantly but it is not gone. When you add in 10 hour work days and several days per week with a 3 hour commute (yes, that's per day), it doesn't help my physical situation. I'm going over all of this (yes, again) because it relates to what comes next.

Last week was scheduled to be my last fill. Surgery is scheduled for late September so we need to get the fills wrapped up and let SWBs work their magic, and let my body recover and rest up for the procedure. Here's where the aforementioned scar tissue comes in. I will spare you pictures, but that means I have to write this out, so stick with me. On my left side, the one that has the relocated muscle and skin, there is some visibly tethered tissue. It almost looks like there's a strap holding things down. As a result, the plan was to add a good amount of fluid to the SWBs and try to get that stuff to stretch. Well, we did a FANTASTIC job of that! Let me tell you all about it...

She started to fill and, as always, asked me repeatedly how I was. There was some discomfort, a little more than normal, but I told her it was fine to keep going. My memory is a little fuzzy after what happened next, but I think she said she got 90cc in there. WOW! So she takes the needle out and I think I started to talk or something - again...fuzzy - and before I could finish my sentence I feel a pretty significant POP in my chest. It took a second for my brain to catch up so I think I kept talking for a second or two. Then I remember saying "Um, something popped." And then it happened again. My brain  was still trying to work through it all - I first thought something happened with the SWB because, though it felt bizarre, it didn't hurt right away. When the second band popped, I felt quite a burn (pain)...and it intensified...and lingered. At that point my brain was trying to figure out if the muscle had come loose. (Please no!) My doctor tried to find where the source of the pain was. I'm not sure but she might have thought something really awful happened too. Once she found it (she knew she had it by the look on my face) she kept pressure on it for a while (probably 30 seconds, felt like 30 minutes). At that point, my brain went to "Holy cow, did my chest pop open?" Thankfully, that was not the case.  Apparently, a couple of bands of that nasty, stubborn scar tissue popped loose all at once. It was tethered on the side closest to my sternum. Unfortunately, I was not tough enough to leave all that fluid in this time around, so she took out about a third of what she put in. I'm not sure that it will delay surgery but at this point, I don't care. If I have to wait an extra week I will. What's another week, right?

So that's where we are. Oh, I almost forgot the silver lining!!!  As a result of the tissue detachment, I've gotten some (but not complete) relief. The iron bra is little more tolerable and I feel like my range of motion is improved - not as much pulling. The fact that I've been battling a cold and I'm coughing like crazy hasn't made the past week any more fun, but I will continue to remind myself that, after 2 1/2 years of cancer stuff and 7 months of reconstruction work, I'm almost there! The pain and the challenges are temporary, so I'll get through it. Another silver lining is that those same challenges and pain add something to your life...perspective. I'll save that for part 2!

Love to all!
Andee

Save the Date

Well friends, it is almost time. It's been a 7 month process, so far, and now there's a light at the end of the tunnel! We expect that today was my last fill. That doesn't even sound real. I go back in 2 weeks for a final status check. If any adjustments are needed, we'll take care of them then (meaning fluid can be added, if necessary) and then we wait 4 weeks and BOOM surgery! It's officially on the books so lookout. September 26 is the big day. This won't be the last procedure of the year but it will be a big milestone. As always, I'll keep you posted on all of the details.
For those that might be new to the blog and have no idea what I'm talking about, I had surgery in January and February to prep for actual reconstruction and then to transfer muscle and implant tissue expanders in February. Since then, I've gone every 2 weeks for some sort of adjustment. Whether it be to remove fluid from my back (where the muscle was removed) or to add fluid to the expanders. I am quite ready to the have these croquet balls removed from my chest.
I'm exhausted so I'm heading to bed but check back in over the next few weeks and I'll do my best to keep you updated.

Cheers!

Love to all,
Andee

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!

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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

What the WHAAAT?!

I haven't posted since April 26?!

huffingtonpost.com

How the heck did THAT happen? Wait...I guess it could have something to do with the fact that I'm working full time, keeping 2 children alive, trying (but failing) to keep the house (somewhat) in order, going to PT twice a week and to the surgeon every 2 weeks. I'm worn out every night but according to my Band (did I mention I got a Microsoft Band 2 when my FitBit bit the dust - loving it!!!), even though I'm in bed for 6-8 hours, I'm getting roughly 1 hour of sound sleep per night. Now that I've said all that, you know what I'm not going to do? COMPLAIN!

vomzi.com

I am going to confess though. 

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I think I'm finally coming out of my "funk". I think I thought I was coming out of it the last time I posted it but it's been slow going. I think I mentioned it before but working has helped...a lot! I'm telling you, semi-retirement isn't all it's cracked up to be. Granted, I've been recovering from major surgery so I wasn't doing all of the fun stuff that retired folk might do, but from what I've experienced, I'm not going to like it. I tried. I really did. I colored, I read, I watched every show and movie that interested me on Netflix, Amazon and Hulu. I helped plot and plan our projects around the house. The biggest challenge was (and still is) my inability to get back to the workout regimen I had this time last year. I think that has pushed me back down into my funk. My mental state is so much better when I exercise, I'm still quite limited in what I can do with weights. I'm sure it will be get better in time but I may explode by the time that happens. I'm in the process of changing up the plan so I can get some exercise in that I can actually do without detaching a muscle or causing my back, arm and hand to fill with fluid. It's tricky!

fuglymaniacs.com

Walking is my safest bet but it just doesn't provide the satisfaction and results of weights. Oh, by the way, I can now answer my own question from a few months back...YES, when I attempt to do a traditional lat exercise, it does still work the muscle...which is now on my chest...but still attached in the back. Reading that sentence back, it even sounds confusing to me.

Anyway....

When last we spoke, I had just seen my plastic surgeon, I was preparing for an appointment with my oncologist and praying for that Friday to arrive quickly so I could go for my first physical therapy session. I'm happy to report that all went well at the oncology appointment. My blood work was good and he decided to modify my schedule again. He now only wants to see me every 4 months, instead of every 3 months. I know that's a good thing but I still have moments when I worry that it's too soon to take the training wheels off and send me out in to the big bad world on my own.  The good news is that I can relax for a (very brief) bit before the next appointment and required blood work. I won't lie to you, it's been over 2 years now and it doesn't ever get easier when it's test time. I have lovely, long periods of time when my mind is not consumed by the thought of recurrence but when appointment time comes around again, cue the scary thoughts!

I'm happy to report that I've completed 4 sessions of physical therapy and , though there has been soreness and some discomfort, we are already seeing progress. Breast-cancer-patient-friends, if you have scar tissue problems and or fluid issues, ask about PT! My physical therapist specializes in working with breast cancer patients. As I type, she is in Shanghai (yes, China) presenting at the World Cancer Congress. She's 50 kinds of awesome, people! If you're in Lexington, your plastic surgeons and oncologists probably know about her. If they don't, they should get on the bandwagon. Scar tissue and fluid may not sound like a big deal but I can tell you, if I had to live with that discomfort for much longer, I'm not sure what I would have done. I'm not anywhere near 100% yet but I can function. ASTYM is FABULOUS! We have more work to do but my range of motion is improving, the extreme tightness is slightly less extreme (it takes time). We are also working on lymph drainage to help with the fluid issues. I saw my PS again this week and she "only" pulled out about 125 cc of fluid. That's a significant improvement.  I've been wearing compression, as instructed. I'm not in the bodysuit just yet. I have my sleeve and my gauntlet (glove) but I haven't jumped in and purchased a "real" compression cami. I'm wearing a mild compression shirt under my clothes with an added foam pad for my back to help target the pressure. I seem to be doing ok with that but if I have to get drained again, I'll invest in the real thing. 

So, to summarize, things are moving along. I'm still recovering after 3 months, but I feel like I'm on a steady climb up. My guess is that right about the time I'm feeling pretty good about myself, it will be time to go under the knife, yet again. I'm through the hardest part of the hardest part of the journey so I can handle what comes next. A little (really a lot) of fat, some snug compression accessories, some fluid and some scar tissue won't keep me down. It just makes for a better story on the other side, when I fit, healthy, happy and somewhat whole again. 

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Love to all!

Andee

Sometimes You Must Endure Discomfort To Relieve Discomfort

This is one of those weeks that I have medical appointments 3 out of 5 days. It's one of those weeks that sceams....

HEY, I'M JUST HERE TO REMIND YOU THAT ARE A CANCER PATIENT.

 

Well thanks, I need that every once in a while...said no one EVER!

 

 

Back to our story. So, I've had one appointment so far this week. I visited with my FABULOUS plastic surgeon and her LOVELY staff today. I expected to get my usual, a drain and fill. Not today, friends! Today was a drain only day. She checked the wiffle balls and said they still seemed a little tight so she wouldn't be adding anything to the tank(s) today. On the flip side, I'm still making fluid like a machine. yes, I'm aware that it has been almost 3 months since surgery #2. What can I say, I'm an overachiever.  In typical Andrea fashion, I'm an overachiever in something I would prefer NOT to overachieve in. In went the needles and out came the fluid. Relief is such a lovely, but short-lived, thing. My doc suggested full time compression to help the fluid issue. I'm looking for some compression garments but for now, it's the bandage. And the bandage feels kind of like this...



 

 

 

 

...but nowhere near as pretty.



 

 I'll keep myself bound up if it will end, or even improve, my fluid situation. I may need more compression "stuff" after Friday. If my arm is actually swelling and not just puffy and uncomfortable, I may end up compressed all over. I envision this...

 

 



Source:http://www.paulpinmd.com/compression-garments-and-taping-schedule-after-surgery/

 

 

My next appointment, bright and early tomorrow, is with my oncologist. I get blood work done first thing and then visit with him for a few. Hopefully it will be yet another uneventful encounter. We can catch up on the last three months and he can ask my why the heck I've gotten so fat after losing all that weight last year. We'll then discuss stress eating that was followed by surgery which left me unable to do much except eat and sleep. None of that is good on its own, much less when you add them all up. It's all my fault. I'm back to doing something everyday but I'm not back to where I can go hard core again just yet. But at least I'm off the couch and out of the kitchen. Getting back to work has done wonders. I felt like I was on the verge of falling into a weird depression. I have to be able to do something.

 

Friday I will get to visit my physical therapist after more than a year away. I'm excited to see her - not just so she can help with the scar tissue - but because I really like her and she takes good care of me! I'm still hoping to see her break out her tools and work some magic on this crazy annoying crap on my back.

 

Finally, we are praying for some luck here at The LD. Our youngest was hit with type A & type B flu this weekend. We had Saturday visits with the pediatrician and a trip to the ER. It was not fun. She will have some symptoms to deal with for a week or two but she's on the upswing. She returned to school today. Yay!  She's one tough little cookie. Now we are just waiting to see if anyone else is going to take a hit. Bobby is complaining about the smell but I'm rubbing oils on kids and diffusing them in the air. I have cleaned, I have disinfected, I've made my daughter wear a mask.  Don't laugh, friends, I had a micro-preemie that made it through 2 risky RSV seasons with only an ear infection. We know how to lock this place down, keep out the cooties and clean if they find their way in. Say a prayer for clean air and I'll do my part to keep the rest of the population healthy.  :-) No time to be sick!

 

 

Until next time!

Love to all,

Andee

Why I Need Physical Therapy

Let's jump right in.
The area left vacant by the latissimus dorsi muscle is now a large sheet of scar tissue and it feels like it has wrapped around my ribs. That means that when I make even a small move my left side, it pulls. If I shrug, it feels as if I'm going to pull a rib loose.  It's strange. It is WILDLY uncomfortable. In addition to that, there's fluid that creeps into my left arm and hand when I don't take enough breaks during the day. And guess what, I often don't take enough breaks during the day ( Yes, as a matter of fact, I AM a dumbass. )  Lately I've had to wrap my hand and/or arm to get some relief.

I am happy to report that I start physical therapy next Friday (a week from tomorrow). I'm praying for ASTYM but I'm willing to endure whatever torture it will take to break this stuff up...even if it means it's taking a rib with it. No joke!

You're probably wondering (or not) what about the scar tissue requires PT. It is not just hard tissue that fills the void - it is but it's SO much more. I try to stretch and it's not that it's difficult, it is IMPOSSIBLE. My range of motion is affected, not just in my arm but in my torso. When I try to turn at the waist, I can't turn very far. After a certain point it's not really stretching, it's trying to pull it loose from wherever it's attached. Sounds pleasant, right? It's awful.  I've tried to stretch enough to try to get it pull away and I just can't do it. I've tried hard...really hard...and I really don't care how much it's going to hurt at this point. I just want to be free.

So there you have it. I have another week of suffering and then I hope to get even a small amount of relief. I'll keep my posts to a minimum until I feel a little better. You're welcome. :-)

Love to all,
Andee

This is so not funny...no, it is...wait...no it's not

Short post tonight. I'm working on a PT post but it's not done. 

Tonight's topic is related to my ever expanding chest and the lack of feeling after surgery. I have a real fear that I'm going to injure myself if I'm not careful. I was flat chested for almost 2 years so I'm still getting used to the expander foobs.

This image keeps bouncing around in my head. 

Welcome to my world.