Looking back on 2016

It's December tomorrow...DECEMBER, PEOPLE! What the heck?!
I was answering some questions about my upcoming procedures today and it hit me. This time last year I was trying to mentally prepare for 12 months of reconstruction work. It seemed so daunting at the time. It hasn't been easy, in fact, it's probably been the most physically challenging part of my cancer journey so far. But here I am, just 21 days from the final steps in the year-long process. The key is keep looking forward, don't focus on the challenge of the moment, but on the goal at the end.
I don't bore you with a long narrative...not right now, anyway. So here is 2016 in summary.

• January 11 - surgery 1 - release the lattisimus dorsi muscle to increase blood flow prior to moving it
• February 1 - surgery 2 - move the muscle (with some skin) from back to chest on the left side. tissue expanders implanted on both sides.
• March - September - tissues expansion - saline added to expanders every 2 weeks.
• September 26 - surgery 3 - tissue expanders removed and replaced with implants
• December 21 - surgery 4 - multiple procedures including tattooing, fat grafting and some surgical adjustments
• Also
• DRAINS - have I mentioned how much I loathe those things?
• Scar tissue
• Seroma
• Buckets of fluid
• Physical Therapy
• ASTYM
• Cancer Scare
• Physical challenges
• Low points
• Upswings

All that for some Frankenboobies.

 

I'm often asked if I would go through it all again. HECK YES! All of the procedures have been tough but the end result is worth it. Though more invasive, the process has a better success rate than other options. I would go through all of it again without hesitation!

 

 

Back soon!

Love to all,

Andee

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

What the WHAAAT?!

I haven't posted since April 26?!

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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!

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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!

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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

Where have you been....again?

I felt this post needed a picture but I wasn't sure what would be appropriate. I didn't have any great ideas (probably because I'm so distracted by my discomfort) so I improvised. I pulled out a ridiculous pic from a couple of weeks back, did some cheesy edits and VOILA, this is now a post with a picture.

You might be wondering where I've been. Why do I post frequently at times, and then there are long stretches of not much...no...nothing. Well, I have a few rules that I try to follow. I have something to say just about every day but my rules keep me in check. Here are a couple of those rules:

• Whenever possible, try to not to repeat yourself.  If there is a good reason to share information again for the sake of the newbies and/or to provide information to my cancer patient readers, then I shall repeat. Otherwise, I don't write just for the sake of a daily post. 
• No complaining. I try NOT to write if I'm in pain, or even really uncomfortable, because I want the blog to informative, not a pity party. I'll eventually tell you about my challenges but only after I'm through the worst of it. It's important to me to share those things but I don't ever want to be a crybaby. My goal here is to inform. I'm not fishing for sympathy - that can stay in its assigned spot in the dictionary...you know what I'm sayin'!

I'm quite uncomfortable right now for a couple of reasons, but I will not be complaining. I will be providing a brief update because we have a new development. I went in for my bi-weekly "Fill 'Em Up & Drain It Out" appointment today. You can take a small leap and guess what one of the causes of discomfort is.  In addition to that, I've developed some not-so-lovely scar tissue on my back where the muscle was moved. My body is apparently working overtime to fill that void. Fluid and scar tissue are not my friends. The fluid was drained off (again) today so I will have a few days of relief from that but this scar tissue is CRAZY! If I raise my arm or even round my back it feels like I'm going to pull out a rib. This happened on my chest after my mastectomy but on a much smaller scale. It was uncomfortable and not fun but what I have now feels like it is the size of the lat muscle that was moved. Last time around I went to physical therapy  and it worked wonders. Feel free to look back at my post about ASTYM. I highly recommended it way back in 2014. I'm happy to report that my surgeon has referred me for physical therapy. I'm so excited that I get to go back to my favorite physical therapist and I'm even more excited about getting some relief. I'm not sure if ASTYM will be part of the plan this time but I sure hope so. I should get some details this week. I just know that we can't get started soon enough for me.  :-)  As always, I will keep the blog updated with my progress. 

Well, it's been nice to be back but I'm off to try to sleep a bit. It won't be long until I have to be up to get the kids ready for school and start my work day. I'll be back soon!

Love to all,

Andee