MOVING ON...

Three years ago, I was celebrating my 45 birthday, just days after my double mastectomy.  That sounds like plenty of time to be done with it and move on, right!? I'm not blind to what goes through other people's minds when I bring it up. And I completely understand where they're coming from - I have those thoughts myself, often. Surprised?

Before this journey began, I had no way of ever imagining all that goes on emotionally during this process, and I don't claim to know what others who've done this go through each day, but THERE'S SO MUCH MORE to this journey than even I could put into words, in person, on a blog, or in a lengthy novel.

The first thing I noticed profoundly is how much people (myself included) judge others, without a clue to what the other is really going through, in any situation, not just fighting cancer.  I can't say that I don't ever judge anyone anymore. I wish I could achieve that! But, what I can say is that I find myself stopping and THINKING a lot harder about the judgements I make, whether it be before, during, or after, and I try to remember that I may have NO CLUE as to what they are going through or for what reason they are making the choices they are making.

Moving on...what does that really encompass? The changes aren't strictly physical. This journey isn't just about adjusting to ones new body and saying goodbye to a couple of body parts. Although that sounds drastic and hard enough to deal with, I also had to deal with the realization that someTHING tried to kill me -fast and sneaky, without any real provocation?! The hardest part of dealing with that is the fear! The fear that it's still lurking, hiding, somewhere deep inside of your own body, and maybe this time you won't catch it before it overpowers you and succeeds. Every single day, try as I may, that VERY REAL possibility pops back to the surface. Not all day, of course, but it may hit me while I'm cooking dinner for my children, or maybe as I'm driving them to school, or while I'm working with a student, or...In the middle of the night on my birthday, as I lie awake.

I've talked to many other women who've fought and survived breast cancer, and everyone of them has expressed the same fear. It's what we live with, day in and day out. It's like having a murderous stalker living right inside your own body! You can't run and hide from it. You don't forget about it! You have to stand tall and fight it and THE FEAR OF IT every single day, and pray that you find it early if it does come back! Unfortunately, recurrence of some form of cancer seems common among survivors.

Don't misunderstand me, as least for myself, it's not the same as a fear of dying really. For me, it's more about how dying, from cancer, could affect my friends and family. When I was a young girl, I watched my close friend's mother die of lung cancer. I was there, in the doctors office, when he diagnosed her and told her she had only months to live. I watched what the family went through day after day, and I watched her die a slow, very painful death. I knew then that THIS was the most evil kind of death, and that no family should ever have to experience it!

I could write so much more tonight. My head is filled with thoughts of what I'd like to say to those dealing with breast cancer and those trying to understand what someone they care about is going through, but the reality is I should try to get some rest before my 48th birthday - one I wasn't sure I'd make it to! Hallelujah! :-) I'm still here! Keep fighting that silent stalker!

Long time, no write...

Well, you all probably thought I stopped writing forever?  No.  Every time I thought of writing, I just couldn't - cat got my tongue. My latest operation, a little over a year ago, July 19th, was very traumatic, physically and emotionally.  Therefore, it has been very difficult to talk about it in a blog or otherwise.

Prompting this blog is the fact that I am going "under the knife" once again on Thursday, October 2nd.  I am nearly starting fresh as far as reconstruction is concerned.  No, I won't need to go through the expansion process again, thank goodness.  That was quite an experience, having my skin stretched until it was as thin as tissue paper.  But, I am having the entire chest area torn down and re-built.  There's a good chance I have one or both implants ruptured, which may have been from insertion.  Also, my right breast seems to have what's called capsular contracture.

To top things off, I have very swollen, sore lymph nodes under my armpit and near my collarbone.  This MAY be caused by the silicone leaking, or an infection of which I was unaware.  Either way, I have been experiencing sharp pain in those areas the entire year.

Denial...

I have been operating under the assumption that this pain and swelling is "normal" for someone who has been through the physical trauma of a double mastectomy with reconstruction.  That said, once I realized a year had passed from the last surgery, I could no longer deny that SO MUCH wasn't right about the last surgery, as well as the on-going pain.

Surgery nightmares come true...

I was very nervous about having the last surgery done, simply because I liked the way I looked before the surgery.  I know that every time you have surgery, you are taking a risk.  At the time, my skin had been stretched too thin.  If your skin is too thin and stressed, you run the risk of a tear, which puts you in danger of an infection on your chest wall, which can spread to your heart and lungs, and, yes, lymph nodes.  An infection of this kind is very dangerous!  A good friend of mine suffered a tear in her skin, a gaping hole, which meant a trip to the emergency room in the middle of the night.  Another friend of mine developed a burn from the treatments, which resulted in a hole and an infection.  Their stories are far more terrifying than any I have to share, but here is my surgery horror story...

I was very ill prepared for this surgery.  I really had no idea what was to come in the operating room, during recovery, and during removal of the drains.  I'll try to shorten this as best I can at this point, telling only the important details.

During surgery prep, it was flippantly mentioned that the doctor was planning to lyposuction my midsection to harvest fat which he would then inject under my thin breast skin to plump up and contour the appearance of my rippling breasts.  Prior to this moment, I had no real idea this was happening.  I also had no idea how to care for my lyposuctioned belly, post-op.  Stunned, I just sat there like a good little girl listening to his plan for my body.

When I woke up, I was not prepared for the weeks of intense pain in my midsection from the doctor scraping the lining completely bare.  It felt just like it sounds, like it had been scraped completely raw, into a bloody pile of flesh.  As you may guess, I didn't have much fat to "harvest."

In addition to the fat grafts, which never took and turned into painful lumps all over my rib cage, I had something known as "Alloderm" sewn onto the inside of the skin over my breasts.  This was the MOST painful thing I've ever had to endure. I never knew he was going to sew them in with multiple tight sutures.  These sutures later caused many, many little scars across my chest, which look like I've been in a knife fight!  These scars shocked the next doctor who witnessed them only months ago, after almost a full year of healing!  I had Alloderm filled in before, but it was never sewn in that way, and I believe I would have said to forget it!  It's really not worth the trouble and scarring.

OOPS!!!

This leads to the final straw, so to speak.  When it was finally time to remove my surgical drains, I rejoiced, as those are the worst part of this whole experience in general.  The nurse came in very happy and celebratory.  I had 4 drains, one of which hung on until the end.  As the nurse tried to pull out the drains, we noticed that a couple of drains were particularly hard to remove.  In the end, one was so hard to pull out that the nurse finally got the doctor.  She was too uncomfortable with the way it was pulling my entire chest with it. She was too uncomfortable?! Wait, what???

At last the doctor came in and pulled on it as hard as he could, VERY SLOWLY... and SNAP!  Yes, it broke off and a good 4 inches of it retracted immediately back into my chest.  There he was holding the other frayed end of the drain that was now hidden inside my chest.  And, yes there was blood and puss oozing out the hole quite a bit.  The look on everyone's face was priceless.  With no clue what to say, the doctor utters, "Well, that's a first! I've never heard of this happening before."

Long story long, they sent me home saying they'd call me when they figure out what to do.  I didn't hear from them as soon as I'd hoped, so by the afternoon, I called.  They scheduled me to come in and have it removed.  He only gave me local anesthesia, so I watched the whole procedure.  At one point the doctor couldn't find the drain and said maybe we should just leave it in - after all the manufacturer says it's safe for long periods of time.  Wait, what???!  At the last minute, when he was giving up, he found it and removed it.  That's when we discovered he had ACCIDENTALLY SEWN IT IN! He snipped the stitch, and out it came.

FEARLESS, I THINK NOT...

So today, over a year later, I have finally found the strength to trust another doctor and let her try to fix this mess of a chest - one ruptured implant, another capsulated, probably all caused during the drain snaffoo.  Hopefully, this will go much better, but yes, I am not the happy go lucky surgery patient I was in the past.  Inside I am a terrified little girl today!  But, the grown up woman in me says, "Perk up!!!" My grandpa is with me today and always.  Thank you, grandpa ("Perk" Perkins) for giving me the courage.

Happy Anniversary???

Yes, TODAY is my 1 year cancer free anniversary.  I know I'm supposed to be celebrating, but am I the only woman who's gotten to this point and wanted to cry every time I think about the day i had my double mastectomy exactly 1 year ago? I'm really not sure why the tears well up again and again. 

Maybe it's because I lost a chunk of my body that day and have spent a year trying to rebuild it and my life. Maybe it's because it's not over yet.  I have 1 more operation (at least) before I can truly move on with my life.  Maybe it's because this past year has brought so many challenges, including: a very messy divorce; acquiring the job of my dreams working at the nations most successful, innovative school for students with severe autism and being FORCED to turn it downby my EX husband; and finally the deaths of BOTH my grandparents. (Those are just the highlights.)

That being said, in my mind, I KNOW I have reasons to celebrate! The challenges have also brought triumphs. I have the love of my amazing children, including my daughter who is facing many challenges of her own in Florida, now. I have regained my independence. I now live in my dream home (although I'd rather it be located on the west coast).  I have the most fantastic, supportive and loving friends,  on both the east and west coasts!  I have the most amazing and supportive family. My TWO new jobs are extremely rewarding! The list really does go on and on, but best of all, I've lived another year to enjoy it all!  I am cancer free.

Yes, I really do have so much to celebrate, but for today, JUST  TODAY,  I will grieve for the losses and hardships of this past year.

God bless everyone!  May you have as much to be grateful for in the coming year as I have had this past year.  XOXO

3rd Time's the Charm...

Hmmm...I just haven't been too inspired to write much since the latest complication.  I apologize.  I feel I need to update the blog now in case someone just starting this journey wants to know more.

December 19th was a very, very rough day - one I will never forget.  I went in at 6:30 a.m. for my 3rd surgery which was to include removing my old implants, injecting/adding Alloderm (cadaver skin cells to thicken the skin), and replacing the old implants with slightly bigger (50 cc's) ones to fill the extra space in my overstretched pockets.  I was nervous, as I said in October.

What I didn't know until later that afternoon is that my dear, dear grandfather, who had a huge part in raising me, died that morning, not long before my surgery.  No one wanted to tell me before I went into surgery, which I totally understand.  That was a good decision.  I still burst into tears every time I think about it, but I'm getting ahead of myself.

Yes, the doctor brought out his handy construction level again! :-)  He marked me all up, and they put me out fast.  When I came to, I was staring at my friend who has acted as my Designated Driver for all 3 surgeries.  I don't know what I would have done if he hadn't been there for almost every step.  By the time I woke up, he already knew about my grandfather. Looking back, I should have seen the signs.  I guess the anesthesia interfered with that.  He usually teases me much more, but this time, he was very nice and didn't talk much at all.  I did notice at one point and was afraid maybe there was a complication during the reconstruction he didn't want to mention.

Right away, I noticed the intense squeezing around my rib cage.  Maybe they just put the bandages on too tight.  I got in the door, and went straight to sleep in my recliner.  I slept, and I slept, and I slept.  Finally, I woke up enough to ask if he had contacted my mother to let her know I was fine.  I felt very worried about her, without knowing why, but I was very pushy about knowing for sure that she was doing okay!  That is when he finally told me about my grandfather.  Told is kind of the wrong expression.  I insisted on seeing the texts between my mother and him for assurance that my mother was completely informed, and that's when he sat me down and showed me the ONE - my mother's text about grandpa dying.  The anesthesia and my pure exhaustion worked in our favor this time.  I didn't really break down and cry.  I just called mom to see how she was doing.  Right away, she started getting very angry that he told me before she had a chance to tell me.  He never had any choice!  Like I said, I was harassing him about the texts to my mother.  I was grabbing his phone and trying to read them.  He told me as gently as possible.  I begged mom to understand and stop being angry, but I think she needed to be angry at someone or something no matter what!  Her father just died.

The pain associated with this operation seemed much worse.  I'm not sure if it was due to the Alloderm, disturbing already scarred tissue for a third time, or simply too tight bandaging,  but it was intense!  Of course, add to that the pain of losing my grandpa.  So, I did what I thought would be best - I kept taking my pain killers (Vicodin) and muscle relaxers, and SLEPT for days, and days!!!  I was practically in a coma for 3 to 4 days.  I've honestly never slept so much or so solidly in my adult life.

On December 23rd, I thought I was well enough to go to a very peaceful Christmas party some close friends were having.  I said, "if this party proves to be too much for me, I'm sure Tracee won't mind if I just go to another room and lie down."  That is true, but I had trouble admitting that I wasn't up for it.  So, I held out at this party and tried my best to socialize and sit and smile through the night.  The party was wonderful, but in hind sight, I was way to exhausted to really enjoy myself.  In addition, all the festivities really made me reminisce and realize this was the first Christmas without either of my grandparents.  They were the definition of Christmas to me.  They are who made this time of year special for all of us.  I really broke down when I got home - cried myself to sleep, woke up, and cried some more until I'd fall asleep again.  I guess the pain killers finally wore off.  This was when I finally let go and realized what it meant to lose my grandparents.  I should have let my friends enjoy the evening without watching me try to make it through, including my caretaker, Eddie.  He is the one who needed the night off, I'm sure.

Christmas Eve, I finally got the drains out - NO, NOT 1 OR 2 DAYS AFTER THE OPERATION, as I predicted.  But, I got them out in time for Christmas.  That was great.  With the bandages off and the drains out, I was a new woman!  Funny thing is, I STILL SLEPT, AND SLEPT, AND SLEPT!  Although I had already cut down the meds, I decided that maybe I needed to try to go off them completely, so that I could finally wake up and do something besides sit in the recliner.  I switched to only taking one pain killer and one muscle relaxer at bedtime - nothing during the day.  This went well, but I'm still tired.  I wind up taking long naps during the middle of the day.  This is not like me at all!!!

New Year's Eve, I finally got the bandages and stitches removed.  I think there is one stitch which they missed.  I saw it in the mirror this afternoon.  In all, I love these new breasts better than the last ones.  The bigger size is perfect for my shape (big hips and shoulders).  I finally feel balanced out!  The Alloderm seems to have made them feel more "womanly," because they seem more fatty and soft.  Before the Alloderm, they were very much like firm stress balls under thin vinyl.  I am already much more attached to these, as if they are really mine! I never felt like that with the expanders or first implants.  By the way, the first implants weren't even the same cc's as each other!  I have no idea why the doctor had put one 550 and one 600.  I don't think he really knew why either! LOL  Now, they are both 650 cc's.

I was concerned about having to throw out my brand new bras for larger ones, but the bras still fit!  They are just fuller.  I can still wear 34DD, but I'm sure I could also wear 34DDD.  Nonetheless, I am very happy that I can wear all the bras I currently own.

The other noticeable difference is that I have a lot more feeling in my skin this time!  I have no idea why, but I am not complaining.  My skin is actually sensitive again.  I am not saying it resembles nipple sensation, but at least I can tell when there is pressure on my chest!  Before, I would imagine actually accidentally slicing off an implant while cooking or something, and not even noticing until I could see the blood!  Then, I wondered if there would even be blood.  Oh, how the mind wanders!

Here's the very minor glitch...

The level failed!  My boobs are almost an inch off alignment   Surprisingly, I'm not that upset about it, and I could live with them this way and be happy.  Fortunately, I may not have to duo that.  The doctor said that in 3 months, he will do a minor "tuck" to my right breast, and they will be symmetrical.   Although I don't look forward to anymore procedures, I am happy this is easily fixable!

Okay, "Boring and Detailed" should have been the title for this blog, but I'm not very inspired at this point.  I will try to regain my inspiration and write something profound shortly!  Thank you for reading and caring about this whole process.  I am happy with the current results.  I will add photos soon on a separate page for those interested in the latest "developments."

Happy New Year!!!

Really, really???

Isn't that the expression used today, by teenagers when their friends say something unbelievable, or unexpected? Today, I went to hug my friend, who's been picking on me all day, goodnight/goodbye, and I'm guessing my elbow accidentally poked him in the ribs (still not sure). He actually says, "Man, that hurt! Felt like someone actually ripped my chest in half!"  Said with so much drama and "whoa is me."

REALLY?! REALLY???!!! Do you have any idea what you're talking about? Because I DO! Mine's been ripped in half twice so far, and in a few weeks we're doing it all over again...So, how did that feel??? Describe that to me, and I'll let you know if it really did feel "LIKE YOUR CHEST WAS RIPPED IN HALF!"  Frickin' baby!!!

Sorry, that's all i have to say about that! Sleep well, kids.

I'm stuck half way out of my cocoon!

Here I am, basically ready to go pick out my tattoo nipples, and WOOPS! Never mind!  Now, it looks like I may be able to get them on the 1 year anniversary of my double mastectomy - March 14th.  In a way that would be really awesome, so I'll hope for that!

The surgery to correct my "malfunctioning" breasts has been postponed to December 19th.  Hopefully, I will have my drains out before Christmas. I call this operation my RE-reconstruction!  Wow.  This is the kind of stuff no one talks about, at least no one I've met.  I do have a friend (Karen) who said it took her several operations before they were "satisfied" with the results.  But, she was trying to match her reconstructed breast to her remaining natural breast.  I assumed that was the reason for several surgeries.  I thought, I'm doing both, so it should be fairly easy to make them match up. 

The current frustration I'm feeling is being STUCK in limbo, without knowing what is at the other end of this journey.  I'm talking physically mostly, now.  I see clothes, bras, which I want to buy, that look great at the moment, then realize I may have to start fresh, when this is all over.  I have no idea what size and shape I will be after this next surgery!  That is so frustrating!  I am very scared of this new surgery, although the doctor and nurses have minimized the whole thing, even stating that the drains will only be in a day or two.  YEAH, I'VE HEARD THAT ONE BEFORE - FROM THEIR VERY MOUTHS!

Add to that the fear that these new scars will be hideous!  I was VERY happy with the way the scars healed the first time, but the latest surgery deepened the scar tissue, and the scars are thicker and redder.  Still, I thought, "they really aren't that bad."  But, how are they going to recover from being sliced open a THIRD time?  I thought of asking if they can make new incisions, maybe underneath the breast, and leave those alone.  But, then I will have 4 long scars instead of 2.  They are fusing that cadaver skin - Alloderm - into my breasts as well.  Part of me is happy about this because I think it will give my breasts a much softer, more natural slope, shape, and feel.  I am so thin, I really do need more fatty tissue around the implants.  They remind me of water balloons in a slingshot. LOL

I am so confused by this complication that I waiver each day, deciding to just stop trying to "fix" them, and then changing my mind back again.  I have no idea why I am so scared of this (final?) procedure, but I figure there are at least two ways to look at this...

Like my scars, will I toughen up and become stronger, virtually indestructible, from this whole experience,

or

will I become weak, worn thin, and emotionally scarred by this for the rest of my life?

I chose the former!  Fingers crossed...

It ain't over 'til...

When???  Not yet, IT'S TOO SOON!  Just when you and I thought this journey was coming to completion...


There's a new complication.  Maybe I should have suspected things couldn't go THIS smoothly?!  Wait, did it go smoothly?  I thought, for the most part, it really did.  As you know, if you've been reading these blogs, I keep saying to myself, "there are so many people in this world who have REAL problems.  I refuse to feel sorry for myself, or complain (at least in person)!" 


Tuesday, I was talking to a counselor I've been seeing for a few weeks, to help me get through this last year of intense life changes.  She's a very straight-forward, tough-love type of person, whom I respect a great deal.  This time, as I broke down in her office and apologized over and over, blurting out that I'm sure she sees so many people in much worse situations, with much more to deal with, she YELLED at me, put her hand up and told me to STOP! 


I thought, "Oh, you're so right.  How can I be so selfish as to break down like this with my tiny problems? I'm such a spoiled baby!"  But, she interrupted those very thoughts to tell me to stop acting like my problems, and my feelings about what I've been going through, weren't valid reasons to be upset or cry out loud.  She went on to tell me that I have a right to feel ANY way I feel about what is happening to ME.  That I should stop feeling as though I don't have a right to my feelings, or to be upset about what I've gone through this past year. 


As she went on, she explained that I should never COMPARE my situation with anyone else's.  This is my life, my body, my experience, and I need to own my feelings regarding it!  I need to allow myself to grieve, feel sad, be angry, happy, and feel whatever else these events have brought to the surface.  It's perfectly OKAY to admit to my children and anyone else in my life that I'm having a "sad day."  But, I digress...


COMPLICATIONS...
One hot night, exhausted and baking like a potato wrapped in foil on the bar-b, I fell asleep early and unexpectedly while watching TV.  I woke up around 11 p.m. only to notice my left breast felt "funny."  When I looked at it, I honestly panicked.  It looked like a half deflated basketball!  I've never noticed it EVER looking like this before.  As I tried to puff it up (LOL), it became REAL to me that there was a problem.  After about 30 minutes of messing with it, and trying to mentally grasp what was going on with my breast, I finally dragged myself into the E.R. to try to get some answers and reassurance. 


That was a waste of time!  The doctor actually sat there, never once examining the breast and said they do not have the personnel or equipment available to check into what could be wrong.  He sent me home without ever trying to assess the situation, with the recommendation that I call my surgeon in the morning.


I went in the next afternoon.  My surgeon was "busy," but the nurse looked at it, took pictures, and did her best to reassure me that what was happening was not life threatening, and not that unusual.  That's enough for me!  I am not making this a BIG deal, but I do want those of you going through this process to know all you can about what may happen just when you think you're in the clear, and able to move on with your life. 


This blog is long enough, so I will try to cut it short, and I will write in more detail soon.  The best way I can explain it is...


The pocket, formed partially by scar tissue, which holds the implant in place, has stretched, or formed too loosely.  There are no cut and dry answers here, but the skin is thin, I have NO fat in that area, and the left breast is where the muscle was cut too much and too deeply.  I call that butchered area "my problem area."  All of these pre-existing factors, combined with the implants dropping into place and settling, have created a large enough pocket for the implants to bunch up and "ripple."  


Although I was so concerned and shocked by the new look, it is not very noticeable unless you already know and I bend forward, letting my boob fall away from my body.  The weirdest part for me is the way it feels to the touch.  It really does feel like a deflated basketball.  It's a VERY STRANGE feeling!


The solution isn't great, nor is it fool-proof.  I have to have surgery again.  They will go in through the same incisions for a 3rd time! :-(  The scars which were healing so well, are really taking a beating. I will have to have this stuff from a cadaver injected around the implant, as insulation to "fatten up" the look of my breasts.  The kicker - they will probably be taking out these implants and putting in larger ones to "fill" the space, but then we risk stretching everything even further and winding up with the same problem all over again.  On top of that, if I go any bigger, I have to get custom bras online, instead of my favorite Victoria's Secret bras. :-(


My surgery is scheduled for the day before Thanksgiving. 


(See what I mean - silly problems if you compare them to people with REAL problems!)  Thanks for reading my latest.  I know this was NOT very entertaining. 


Have a great week, all!!! :-)