Grandma, It's Going To Be OK

In a 1991 LA Times article, my grandmother was interviewed about breast cancer in our family.  She sadly passed of heart surgery complications in 2006, right after the birth of my second child.  The two quotes that stick with me from the article are the following:

"I thought I was helping my daughter do all the things that were necessary. And she followed all the rules. What is frustrating is that the results from treatment now are not a heck of a lot better than they were when I had cancer. I am watching her two daughters, ages 22 and 14. I'm hoping the outlook will be better for them, but I'm not sure it will. Twenty-five years after my cancer, why should I still be worried about my granddaughters?" 

And in speaking about my mother...

"At one point, she asked her doctor if she could undergo a prophylactic mastectomy--a procedure where the breast tissue is removed and replaced with implants to lessen cancer risk. She was discouraged from taking that radical step." 

LA Times

I would LOVE to be able to sit face to face with my grandmother right now and show her just how far results from treatment have come since she and my own mother were fighting the disease.  I've gone from a 14 year old to 38 year old and I've been given a wonderful outlook on life with my own children.  I was able to get the BRCA genetic test thanks to my grandmother taking the test months before me, and as a result, I qualified for a prophylactic double mastectomy, no questions asked.  


You don't have to worry anymore grandma.  I've been taken care of by the best. 

My Grandmother

My Mother

Me

Day 11- Goodbye Drains, Hello Seroma

Goodbye Drains...

It's a very, very happy day 11 for us today.  My final two drains were removed which gave me a sense of freedom.  I've been tied up to drains for eleven days, six of those days with four drains, and while that doesn't seem like a lot, you'd be amazed as to how annoying and uncomfortable they can be.  My right drain and breast, as I mentioned yesterday, were the ones causing all the discomfort and pain for me.  Especially around the exit point of the drain.  My left drain and breast...wouldn't know I even had a drain except for the the fact that it flopped around all the time.

I had so much apprehension about the drain removal process, but gotta say, it was easy peasy.  That, or my nurse Denise has magic hands.  I was trying to explain it to my husband, as I told him there wasn't any pain with the removal, but it's the sensation that made me say "gross!" each time Denise pulled one out.  All you feel is the sensation of something being pulled out of you, no pain.  Like pulling a fettuccine noodle out of a bowl of jello.  A little tugging to get it going and then slooooop!  It's out!  So now, I'm completely free from being tied down to my drains.  I can move more freely and honestly, not having to strip them of fluids daily takes a lot of the nauseating feelings away from me.

This is what two of the drain sites look like post removal,
13 days after surgery.

                                       

Tips for lessening the pain of the drains: 

1.  Ask for Lidocaine patches to put around the drain site that is hurting you (check that your insurance won't charge an arm and a leg for them.)  You can wear them 12 hrs. on, 12 hrs. off.  This really helped me for that right drain.

2.  Use a bandaid to tape the drain into place close to the insertion site.  It's held very securely by sutures, but you want to keep it from wobbling about.  I then used another bandaid lower down on my abdomen to secure part of the cord close to my body so that it wouldn't move.

3.  Many use safety pins to secure the drains to the inside of clothing.  I never did this, but I don't see why it wouldn't work beautifully for those who need to get dressed and go out a lot.  I had Shower Pockets.  Read about them HERE, order them HERE. I had two pair so that when I showered with one, I had had another dry one for putting on.  I slept in them and wore them 24/7.  

Hello Seroma.

As my nurse, Denise, was examining my breasts, she came across small pockets of fluid, called Seroma, at the bottom of each breast.  My husband and I never even noticed, and still found it difficult to see when Denise was examining them.  Naughty right breast had a little more than my well-behaving left breast.  A Seroma is simply a pocket of fluid that sometimes develops under the skin after surgery, but it needs to be watched.  My body should reabsorb this small amount of fluid on its own over the next few days, but we've taken precautions in the meantime to try and avoid having a needle aspiration (I HATE NEEDLES) and force my body to reabsorb.  Since the fluid wasn't near the drain, the seroma wasn't going to go away by keeping the drain in.  Keeping drains in when they aren't helping only increases the risk of infection.

So, here's what we've done.  We've put my chest in a compression strap which is essentially a 2.5" wide heavy duty band that wraps around my chest. The good news is that I'm out of that awful compression bra during this time.  The bad news, the compression strap is worse than the compression bra.  As you can see from the photo, the strap seems really high, like up in my armpit high.  Here's why.  The fluid is gathering on the bottom of my breasts.  So, we forced as much skin as we could up high, above my breast, and at the same time, pressed my implants down towards the bottom of my breast.  We then secured this all into position with the strap.  The pressure of the implant at the bottom of my breasts will help force the fluid to reabsorb into my body.  

This is NOT pleasant in any way, shape or form.  It's a lot of pressure (one size fits all...ha!) and the fabric is a bit course, so it rubs in your armpits and on your chest.  I've learned to tuck my tank top just up and over the top edge of the strap which helps.  I've already been taking more medication to ease this discomfort and pain of this new setup, but as I said in Day 10's blog post, I need to take care of this body, it's the only one I have.  I'll be like this until Thursday, exactly two weeks post surgery.  At that time, we'll re-examine to see how things looks and hope for my body to cooperate.

So, until then, think happy boob thoughts for me.

Day 10- Happy Father's Day

As you may or may not have read, Day 9 was quite the doozy for me, not good at all.  It continued into last night when I found myself, once again, not sleeping and quietly crying from frustration at 1am.  My husband gave me 1/2 of the dreaded Xanax and I ended up sleeping through the rest of the night, waking at 7:30am.  Yay me and yay to my husband who said, "every piece of information PRMA has given us has said its normal to feel this way, that's why you have the option to take Xanax."  He was right, and I had to trust my body.  As Jim Rohn said, "Take care of your body. It's the only place you have to live."

So, I was well rested and determined to make it out today to honor my husband, the man who has been tirelessly taking care of me for the past week.  It's Father's Day.  My routine takes me quite a bit of time as it just simply takes me longer to get ready right now.  So, it might have been 10:30am before we actually got out the door, but I did it...feeling good about myself.  And look!  I managed to make it to a Father's Day brunch on the Riverwalk at Las Canarias in San Antonio...drains hidden and all.

It felt so good to shift my mind, once again, and take back control over how I was going to spend my day.  We had a lovely couple hours by the river, until getting rained out, and everything just seemed...normal.  By the end of the brunch, I could feel my muscles getting really tight, so I allowed myself to take 1/2 a muscle relaxer.  I say "allowed" as I actually get anxiety about taking the medications because of how disconnected and out of control they make me feel.  I know, I know, I can take Xanax for that...but I have anxiety about that too.  ;)  Anyway, 1/2 a muscle relaxer later, we were off running a few more errands (one of which included a much anticipated Chai Latte from Starbucks...SORRY Dr. C...I broke the no caffeine rule today...but it was SOOOO good) and ended back up at the hotel around 4:30pm.  That's a long day for me!

At about 6:30pm, I had what was one of the most painful muscle spasms or nerve spasms I've had as of yet.  My left breast is always hunky dory...no issues, no tightness, no nothing.  It's being good.  It's my right breast that is acting up and causing all the issues.  I think I've determined it's because I'm right handed and therefore, my pec area on the right gets exerted more, which means more pain.  Anyway, guess what?  I took a 1/2 a muscle relaxer again and did just fine.  I just had to get rid of my anxiety about how the meds make me feel and realize I need to take care of my body because it's the only one I have.  

So, we're back on the upswing today, and it was the perfect day to make that happen.  Wish me luck for tomorrow as I'm going in for another appointment to hopefully remove my drains.  Bitter sweet though as this might be my last visit with my friends at PRMA.  

* Update...at 9pm I had another one of those horrendously awful muscle pains shoot through, over and around my breast.  It took my breath away, sent me into sweats and nearly to the floor.  It doesn't end quickly, it radiates and lingers for a couple minutes.  Curious as to what this is and how long into recovery these last.

Day 9- And the Tears Flowed

Nope, no one ever said this was going to be easy and no one ever said I had to do it gracefully.

Today was a day where it was very hard to muster up a smile from the moment I woke up.  Tears were ready to flow, they just needed the gate opened.  I'm very good at seeming strong, seeming brave and being an...avoider.  Remember Wonder Woman?  I'm not saying that I've avoided any emotional trauma this experience has caused me, I'm simply saying that it's bound to take a toll.  So, here it goes, because I want every other woman out there who might be faced with this situation to know...IT'S OK.

IT'S OK TO CRY.  IT'S OK TO ASK FOR HELP.  IT'S OK TO NOT GET DRESSED ONE DAY.

IT'S OK TO (INSERT YOUR WORDS HERE).

When and if you choose to go through any number of the available preventative or reconstructive surgical options like I have, you've at that moment, made a life changing decision.  You've made a big decision that doesn't come lightly.  You'll research, you'll plan, you'll interview, you'll discuss, you'll prepare and then...you'll do it.  But what about the after?  All that work you've done to prepare for that five-eight hour operation is bound to catch up with you.  You just won't know when.  For me, it was today.

Sleeping has not been easy for me.  I lay on my back or slightly reclined and hope to feel comfortable enough to fall into a restful slumber.  But I ache.  I ache from so much bed rest, but I can't be up-out-and-about for more than an hour at this point without needing to sit down or feeling overwhelmed.  My drains hurt with every turn I make in bed or every time my surgical bra hits them.  Thank heavens for the 11 hours a day I get to wear a Lidocaine patch around my drain, and the hope of getting the last of the drains removed on Monday.  And my chest, while not hurting, feels heavy and tight on top of me when lying down.  So, I'm achy and tired.  Achy and tired = emotional.  Emotional = watch out...flood gates can open at any time.

When it was an appropriate hour of the morning this morning to actually be awake (we're in a hotel room in close quarters), I was already brimming with tears.  It only took the act of getting up and getting dressed for breakfast to make the tears flow.  I was hot, I was tired, I was sick of trying to hide the drains or finding clothes to wear.  I'm tired of living out of a suitcase, of not having friends to hang out with to kill time, tired of eating out and tired of not being able to just say, "hey, let's go here for the day," because my body won't keep up.  We're in a place we don't know, trying to think of it as a vacation, but it's really not.  

The tears just flowed.  My husband says I'm experiencing either anxiety about everything I can't control, or the beginning of depression, which I hope I'm not.  I think I'm just experiencing the low after the extreme high.  I am SO proud of myself, I kid you not, but remember, IT'S OK TO CRY.  I mean every word in every blog post I've written so far.  I've had wonderful days and I'm so happy with my results. But there was just something about today.  It was just a no-good, very bad day. 

By Pdpics (Own work) [CC BY-SA 3.0 (http://creativecommons.org/licenses/by-sa/3.0)],
via Wikimedia Commons

I managed to get dressed and go to breakfast with my family.  Throughout the breakfast, there I'd be, with no reason whatsoever, brimming with tears again.  By the time we got back upstairs, I was tired.  I slept for maybe 30 minutes, and we spent the next hour trying to figure out what we could do with the kids, where I could be involved.  We thought of the Children's Museum which newly opened, but that was A LOT of walking and they hadn't yet received their wheelchairs.  We thought of a movie, but sitting upright for 2 hours in a chair I can't get comfy in didn't sound fun.  So, we thought of the special theaters with the reclining seats...nope, no one under 18 years old.  My husband even called medical supply companies in the area so that we could rent a wheelchair, but no one was open.  Finally, we decided the kids would go swimming to at least get some energy out and we'd try to do something again tomorrow.

I don't take my meds prescribed as I'm what you call a lightweight.  I try taking a 1/2 and even 1/4 of a pill, and I hate the way I feel.  I then get anxious, start to panic and make it all worse.  I would take a Xanax, but even that leaves me feeling ill in my skin.  I've got to figure this part out in order to help myself, not make it worse.  For now, Advil gets me through the days and Lidocaine gets me through the nights.  I'm not in PAIN.  I'm in discomfort.  Once my drains are out, I imagine everything will be so much better.  I'll be able to get dressed normally, not worry about the tugging sensation and everything can begin to heal.  We'll have two weeks left in Texas (I left myself a large window to recover before the 25-hour flight home) and I hope that we'll enjoy them, together.

None of this is anyone's fault.  Everyone is trying to everything possible to help me feel comfortable and get through each day towards a complete recovery.  My nurse, Denise, is wonderfully understanding.  My Doctor is just a Tweet away.  And my husband, he's Mr. Mom right now, plus my after-hours nurse.  He's "on" at all times right now, setting alarms in the middle of the night for my antibiotic or Advil or whatever else is needed.  He keeps a smile on for me.  He's doing all of this without a single complaint.  And I love him for it.  

So, today wasn't easy, and that's ok.  I say one bad day out of nine isn't too shabby.  Here's to  acknowledging today and looking forward to tomorrow, another day, another start.

IT'S OK.

* update: that night, I found myself once again not sleeping and crying from frustration at 1am.  My husband gave me 1/2 a Xanax and I slept through the rest of the night.  Yay!