Moving Forward and Letting It Go in Bali- 5 Weeks Post-Op

It's five weeks post-op for me, and I'm sitting here in Bali loving the looks of my future.  I had this trip planned well before my surgery, hoping I'd be recovered enough to come.  I wanted a target, a goal to look forward to after all was said and done.  A moment of...breathing.  No appointments, no agenda, no worries, just...being.  So here I am.  I made it.  I'm sitting in Bali.

There was a time in my life where everything centered around the damn "C" word.  I HAD to have a child before 30 which meant I needed to find that "someone" in my 20s, I HAD to tell that someone early on about my predisposition and possible breast surgery down the road, I HAD to breastfeed a certain length of time for maximum benefits, I HAD to do this and that...I HAD to do everything I could to keep it away from my body.  I hated this time of my life.  I felt pressure from every which way.  I love my good wines, but felt guilt when drinking.  I love to indulge in some of the richest foods around the world, but wondered if I was feeding the beast inside.  I'm not saying that I'm going to splurge now and live care-free because I'll never get it, I'm just glad that I was able to do the most that I could to get to where I am today.  I made it to 38 cancer free.

One of the biggest worries I have had since giving birth to my daughters in 2006 and 2008 was what on Earth have I just given them in terms of life.  I had guilt at times.  Have I wronged them in my choice to continue having children AFTER I found out I was BRCA positive?  It's almost haunting at times.  However, I look at my mom's options back in 1989 and I look at my options here in 2015, and things have surely changed.  There are doctors out there who listen to these worries, who want to help make a difference in not only the quality of your physical life, but your mental life.  No one wants any mother to worry her entire life, about herself nor her children.  I have comfort in knowing that my girls will be given the same opportunity as me, probably even better, when the time is right.  I can't decide for them, but already, at ages seven and nine, they are very well informed.  Even my son.  He knows this affects him too, as he could be a carrier as well.  I've released this guilt, turning it from fear-based thoughts to advocacy and education in hopes of changing their futures.  I will help them instead of sheltering them, I will educate them instead of keeping it taboo and I will hold their hands through it all, just like they held mine.  I'm thankful there's a place called PRMA and a Dr. Chrysopoulo who can someday help them, if not them directly, help educate the future of medical practice where its patient centered.

I'm sitting here and realizing how different my mental state is.  Every day I wake up is a new day, a fresh start.  I don't look in the mirror and think, "when am I going to get cancer."  Instead, I think, "wow, they look pretty damn good!"  I no longer spend a moment during a day thinking, "I'm almost 40.  My mom was diagnosed at 40.  I'm scared."  Instead, I sit here looking at my children thinking, "what adventure will we be on next when I'm 40?"  I've allowed myself to breath new life in, and I think my husband would agree.  Something has been released.  Something has changed, for the better.  

This summer will forever be the 'Summer of 2015' in our family.  Monumental, life-changing and forever remembered.

5 Weeks Post-Op Physically:

For a quick update on how it feels five weeks out, here's a quick glance.
* I'm completely off medication, not even Advil at this point.
* I still have soreness/tenderness on the outer sides of each breast, my sternum area is tender and my nipples are still quite sore.
* Regular non-underwire bras are the norm for me now, although I still prefer my tighter Genie Zip bra at night.
* This week in Bali has given me more to consider about recovery and my new breasts as 1) bathing suit tops are tight, and it hurts a bit getting them on and off, 2) swimming was not easy and 3) running is NOT an option for me yet as I had to grab my chest when trying to bounce off the hot sand (no, I wasn't wearing my flip flops...they were in my hand.  Don't ask.  Already got scolded.)
* I'm proud to look in the mirror as my breasts keep settling into their new shape.
* The scars are looking better and I'll past more photos at six weeks.

One Month Post Op

Yes, I'm going to be like a new mom again, one who posts updates of her babies daily for the first week, then weekly up to "four weeks old", then does the monthly photos and updates until "24 months old" (not 2 years), then yearly.  Why?  Because when I search the internet, these are the things I look for.  How was someone doing each week immediately following surgery?  What is it like and what changes happen as the months go by?  If I want to know, surely someone out there wants to know too.  Think of me as your What to Expect When You're Expecting Healing mama. So here you go, here's what life is like for me one month post op.

Sleeping

I put this one first because its my biggest pet peeve right now.  I mean its 3:30 am and here I am, wide awake and writing.  I WANT TO SLEEP NORMALLY AGAIN.  There, its out there into the universe.  Lets hope the universe responds kindly.  Seriously though, here we are, four weeks out, and I'm still having to sleep on my back.  I'm not a back sleeper, at all.  I find myself tossing and turning all night because I just can't get comfortable.  Even with pillows...they just make me hot.  I've been given permission to slightly lean to the side, propping my breast with a soft pillow so that nothing firm will press on the Alloderm and in turn weaken it, but that's not doing it for me either.  In the beginning I was sleeping just fine due to the medications.  But now, medicine free, I sleep for maybe five hours and then I'm wide awake.  Luckily, there's a whole other side of the world awake on Twitter.

By Andr.V.S. (Own work) [CC BY-SA 4.0 (http://creativecommons.org/licenses/by-sa/4.0)],
via Wikimedia Commons

Breasts

You would think this would have been number one on my list, but seriously, if you knew how much I loved sleep, you'd understand. At one month post op, everyone pretty much assumes I'm back to normal activity, living life as before and beyond the pain.  Clearing all that up for you now, I'm not.  Am I happy?  Yes!  Am I healing?  Yes!  Am I grateful?  Yes!  But reality is, there's still a lot I'm going through with my new breasts.  Yes, they are pretty flawless, they are damaged breast tissue free and they look darn good in my summer dresses, but we are still having a love-hate relationship.

• Nipples- They feel like the painful nipples of a newly breast feeding mother.  If anything or anyone touches them...  Even my bra gliding against them the wrong way sends hair raising sensations down my spine.  Yes, yes, I'm told by my nurse and surgeon that this is a good thing, as it means sensation is coming back, but WOW!

• Implants- At this stage, they are so much softer than they were the first couple weeks.  I can grab them and gently squeeze them...molding them to my grip.  I say that because I imagined having these stiff mounds on my chest that wouldn't move.  However, there are two scenarios that are strange to feel and I'm still getting used to.  1) putting my arms at my sides.  While my breasts are by no means huge, it feels strange to feel the edges of my breasts when I put my arms at my sides...and they don't move out of the way.  2) when I've been lying down for a while and then get up, the weight of everything shifts with gravity which causes me to grab my breasts and hold them for a minute...letting everything settle.  The good news is that my surgeon told me they'll never "pop out" of place if I bend over or reach for something quickly.  He knows me well...me and my irrational thoughts.

• Muscles- I'm not what you would call a fitness buff.  I don't really like working out.  I go in cycles, getting really into some exercise routine and then...nothing.  Let's just say the 'nothing' phase has lasted longer than it should.  That being said, my muscles at the top and sides of my breasts feel like someone just made me do 50 push-ups and then told me not to stretch.  Feel it?  They are pretty sore and tight.  Because they are tight, my range of motion is not great, so when I suddenly reach for something or try to go back to my normal daily routines, OUCH!  You can still forget those repetitive motions at this point, which, by the way, includes shaving my legs.  That causes pain for me.  

• Cording- Ok, so this is new to me.  I'm not sure if I have it yet, but in speaking with my nurse, we're keeping an eye on the possibility.  Cording is, in the lovely words of nurse Denise, "scar tissue or bands that form after a mastectomy. You are usually able to see and feel the rope-like band starting from the axillary area or right near it. It can extend to the elbow along the inner arm and cause pain or discomfort when trying to stretch the arm. Typically physical therapy is required to “break” the bands up. You might look into a physical therapist that specializes in or is familiar with post-mastectomy patients."  Let's hope this is not what I'm experiencing, and I'll bypass it, but I think its important for others to know its a possibility.  Here's a video demonstrating what cording looks like.

• Scars- There is a light at the end of this tunnel.  My surgical tape finally came off today in the shower.   My incisions look amazing, thanks to the precision of my microsurgeon Dr. Chrysopoulo!  They are clean, they are light pink and they are doing beautifully.  I also got permission to start applying InviCible cream to them to start the scar healing process.  I'm supposed to be massaging the scar so that it will hopefully soften up as well as lay nicely in the skin, not protrude out.  There is zero pain where my scars are, but I think that's due to being mostly numb on the underside of my breasts.

• Sensation- at this point, not a lot has changed from when I described them in How Do They Feel? 

By J.C. Stadler and Piercy Roberts After Adam Buck (Scanned by H. Churchyard)
[Public domain], via Wikimedia Commons

Exercises

About two to three weeks post mastectomy, depending on your surgery and healing, you'll be asked to do exercises to stretch your muscles and prevent the stiffening and scar tissue build up.  These are standard stretching exercises recommended to women post mastectomy, and are relatively easy to do.  That being said, my surgeon was not kidding when he said to approach every exercise as if its my first time.  Don't think you're going to hop back into yoga, pilates or even these simple to do stretches.  Your range of motion is different, your muscles are healing and you will need to take your time.  Be kind to yourself.

Medicine

One month out, I'm still on some Advil during the day, but cautious of not irritating my stomach by taking too much, and I still occasionally take 1/2  a muscle relaxer at night as my muscles are tight by the end of the day, and quite achy.  Other than that, the anxiety meds and pain killers are shelved.  

Emotions (updated 12 hrs after original post)

I thought I was past the highs and lows of recovery.  I'm a month out, I've been off the meds and I was getting back to life just fine.  But today, for whatever reason why, the emotions came flooding back.  My breasts are sore, I woke up at 3:30am to write this blog post and haven't slept since and at 7:30pm tonight, bam!  The tears started flowing.  I had been experiencing a lot of muscle pain throughout the day and was getting frustrated.  I put high expectations on myself, no secret, and I think I feel that I should be doing better than I am.  As I was getting ready for bed tonight and rubbing my scars with treatment cream, I began to cry.  I hated feeling the thickness of the scar under the skin...how it rippled under my fingers.  I'm not good with blood, surgical photos and creepy sensations in my body.  This was one of them.  It was all just too much and I broke down.  At this point, I don't know if its considered normal to be so emotional.  Just this morning I was so thrilled to get dressed with confidence and assurance, that I turned to my husband and told him I didn't have to hate my breasts anymore, that I could love them.  My fears were taken away.  And then an emotional swing the other way tonight...tears.  All I can say is let is all out when it happens, talk to someone and acknowledge it.

So, there you have it.  This is what its like one month post op.  Not terrible, but by no means back to normal.  It really is a process.  I wish writing this put me back into a state of sleeping bliss.  Lets go see who's on Twitter.  Night!

The Other Man

I write this post mainly for the male supporters in our lives.  The ones who would do anything for us.  The ones who we love more than anything.  The ones we've dedicated the rest of our lives to.  The ones who are standing by your side through your diagnosis, your treatment and your recovery.  The ones who kiss us good morning and kiss us goodnight.  The ones who may not understand this new relationship with the "other man" in our lives right now, but who will hopefully sympathize with what we're going through, and later understand what it was all about. My husband falls into this category.  We might talk endlessly about this other man, sing his praises and confer with other women about him, and I want to help you know why we do it.

Women, by nature, have basic needs that need to be met.  We need to feel safe and secure, we want to know we are loved, we want to nurture, we want to be appreciated, we want to feel like we can count on someone and we want our feelings to be understood (even if you don't really understand).  We form relationships and bonds with others when these needs are met.  Women hold relationships near and dear to their hearts.  We protect our relationships.  Its natural.  Its why you are number one in her life right now.  You met her needs.  So what's going on with this other man she's talking about so much?  She's made a new friend, that's all. 

                                                 

When a woman goes through something life-threatening or life-changing, the people immediately involved in that experience become forever bonded at the heart.  For example, her doctor.  He becomes a hero in her life.  This can be any doctor in her life.  Her therapist, her OBGYN, her surgeon...you name it.  They see her through some of the hardest times in her life such as dealing with trauma, welcoming new life into the world or helping her go through the struggles of conceiving, or even performing life-saving surgeries.  This is a person who listens, sympathizes and shows concern for what she's going through, just like you do.  We, as women, tend to open up and talk to these people in our lives.  We love to talk.  And part of a doctor's job is to listen.  We like that too; we value that.  So its completely natural that her doctor becomes an important person in her life with whom she connects and holds dear.

I recently read an article that I can't get out of my mind called, "It is OK for the doctor to cry."  I was so touched by the story as it was so refreshing to hear the other side of the doctor-patient relationship, from a doctor's perspective.  It's not often you hear this, nor find it.  It's actually quite rare in my experience.  Early on the author recounts a moment with one of her patients:

She begins to weep into her husband’s chest but somehow manages to thank me for taking care of her for the past week and being “one of her nicest doctors.”  She even stands up to hug me.  I leave the room really quickly with tears forming and sneak into the bathroom as I begin to cry.

This doctor is humanized.  The doctor met the emotional needs of her patient, and a bond was formed.  The articles goes on to describe the compassion a doctor forms for her patient, and how she sees her patient as something more than a medical file number.  Her patients are mothers, fathers, sisters, brothers and more.  This is how I felt.  The author ends by saying:

Yes, we should distance ourselves emotionally if it affects our medical decision-making but when it boils down to patient care, feeling for a patient and his or her family makes medicine humanistic and real.

My journey was all about forming relationships.  I "read" people quite quickly, and I make decisions based on connections and my heart.  I know when I don't feel good about a person, or when we're not a good fit.  I made judgements based on comments doctors made in social media, on reviews left by other patients, by how the front office handled my calls requesting information and by how I connected with the doctor (IF I was allowed to actually talk to the doctor).  I needed what the article said, "make medicine humanistic and real."  If my needs weren't met, you weren't going to touch me with a knife.  My husband knew I had made my choice in surgeons a long time before we actually Skyped with my surgeon, as I had a good gut feeling from the PRMA patient liaison, Courtney, with whom I had been working. I couldn't stop talking about PRMA and Courtney.  Everything was, "Courtney said...", or "Courtney's so nice" or "Courtney is probably so sick of me...".  

 My needs, however, were eventually met with my chosen surgeon, Dr. Chrysopoulo.  He was real.  He IS real.  He provided assurance early on that built my trust. Throughout the process, he made comments that personalized the experience like, "if it was my wife...," or "you're the love of his [my husband] life and mother of his kids. Doesn't matter how positive you are...all bets are off [referring to my husband's biggest fear being that they'd find cancer when operating, but hiding it from me till all was said and done]."  My doctor cared about us as a family.  He took the time to ask my husband how he was really doing, husband to husband, after the surgery.  I kept telling my surgeon that I trusted him because he had taken the time to build the trust.  During my in-person consultation, he'd ask me if I wanted A or B, and I'd reply telling him I trusted his opinion and left him with the ultimate decision.  He had been welcomed into the 'circle of trust.'  He humanized the experience, just as the doctor said in the article.  In return, my husband listened to a lot of, "but Dr. C said.." or "according to Dr. C...".  I get it.  I talked a lot about my doctor, still do.  And Denise...oh Denise.  She's my nurse, and she's wonderful.  Up until my last day in the USA, I kept referring to Denise like she was my BFF and my husband would laugh.  She captured my heart too.

                                               

In a recent article, I spoke about the power of social media.  My doctor is wonderfully involved in it.  It's fun to see him interacting with people, patients, strangers and other doctors.  It's more fun to see how many other women are out there speaking highly of him, you're proud that you chose someone so revered.  I've become friends with some of his patients, like Terri, who also formed a relationship with him.  She spreads the word about how wonderful he is as well, like a personal cheerleader.  We love what he's done for us, plain and simple.  He's a doctor, he's brilliant at what he does and he cares for his patients.  We've gone through a very emotional time together, so of course we're all connected by that 'something common' between us.  I was talking to a friend from home this morning about my experience and how I was going to write this blog post.  She replied with, "it is such a unique relationship and situation." She totally understood and felt that I should write this to help other men understand what is happening.

My husband gets it now.  He said today, "I totally get (and support) the bond that you have. He essentially saved your life, and those words went through my mind weeks ago."  I know it must be hard to have your significant other speak so highly of someone else so often.  I don't think I'd like my husband coming home from his appointments speaking about his amazing female doctor and how supported he feels by her!  Not fair of me, I know.  But in the end, we're all friends now.  We can all chat like we've known each other forever, and we're all connected via Twitter and Facebook as well.  In the end, just consider your significant other's doctor, with whom you've all shared a major life experience with, as another friend to add to your circle.  At least that's my hope.  I hope you have a doctor who humanizes your experience.  However, I don't think my husband and I will ever be able to call him by his first name...he'll always be Dr. C to us.

A Husband's Story-The Supporter

I wrote about the very beginning, finding out Heather was BRCA1+ and supporting her desire for surgery.  I'm fast-forwarding to the end, because that's a major key in planning the surgery.  You, as the supporter, will need to know what to expect in your role, and I want to give it to you while fresh in my mind.  Essentially I was Heather’s 24/7 on-call nurse. Here’s what I did to help out:

While in the hospital:

• Help her feel comfortable by doing small things like adjusting pillows under her arms and remind her to press the meds button.
• Feed her ice chips, or water, or anything she wanted to eat.
• Communicate with anybody who needed to speak to her.
• Take her for walks. (Hopefully that didn’t sound like Heather is my canine friend.) We took little 5 minutes strolls to get her up and moving, 2-3 times a day. 
• Remind her to use the IS (incentive spirometer) device. This is a tool to encourage healthy breathing and keep fluid out of her lungs, which is a risk after surgery. 
• More than anything, just BE there. The nurses could have done the things I mentioned above, although not with the same frequency and/or attention, but the main reason I didn’t leave during the 54 hours she was in the hospital is because I never wanted her to feel alone. I did take a few “breaks” by going to the cafeteria and sat there to eat. 

After the hospital:

• Again, comfort was my main goal. (Helping her adjust in bed, prop her up with pillows, etc.)
• Without the hospital nurses, I was also now the one delivering medications, which also meant setting alarms for crazy hours to make sure she never got to the point where we were “too late” and playing catch up on pain relief. 
• Drains. I was on drain duty for 9 days after we left the hospital. The drains didn’t gross me out, but it might make some queasy. The fluid wasn’t bad, but I do admit that the few solids that came through the drain tubes weirded me out a bit. But of course I never let HER know that.
• Showering. Instructions were to shower daily. I’m lucky that Heather and I are comfortable with one another. I can see how this whole process could be humiliating to the person receiving the help. I don’t know if she felt that way, and she certainly shouldn’t, but it’s that whole idea of not being able to take care of yourself and being dependent upon others to do very personal things. 

Support for the supporter:

There’s definitely a lot of pressure when you’re the designated support person. It’s possible that others can work “shifts.” Since we came in from out of the country this wasn’t possible, and even if you’re traveling from another part of the country it’s not cheap to have additional people travel to support you. However, if you have kids and you plan to have them with you, I highly recommend another person coming with you. 

So before going further I have to give mad props to my mom. I’m not sure how we would have done this without her flying in from Utah to support us and occupy the kids for five days. For about four of those days, I was fully dependent on her to help with the kids as I attended to Heather. I really didn’t think that I would stay at the hospital for three full days like I did. Yes, I could have left at night to be with them, but I wanted to be sure that I was there every second I could be to support Heather. My mother’s presence allowed me to do that. For that I’m very grateful, as is Heather. Thanks, Mom!

I also have to thank Denise, my wife's nurse.  I was able to keep in contact with her throughout the recovery, via email and phone.  It was nice having that personal access to someone who could answer our questions.

Lodging:

Also, I can’t stress enough how amazing it was to rent a house for 10 days instead of being in a hotel. Our Airbnb listing in San Antonio was perfect. It was close to the Medical Center and PRMA, close to amenities (food, parks, groceries, drug stores, etc.), and our hosts were so kind and concerned with Heather’s progress. We were able to have the kids playing games and watching TV in one room while she rested and healed in another. We were also able to stock up on groceries and live life as we would have if were in our home town. This feeling of belonging was priceless. I can’t think of another lodging situation where we could have felt this way.

- Jared

Comforts of home were truly appreciated.