That Song

Recently, I was reminded of a song.  The lyrics are poignant, the melody is beautiful, and the message is powerful.  All the elements of a great song are present, but I always cringe when I hear the opening measures.  The problem is that the song makes me ugly cry every single time I hear it.  Let’s take a tour of God’s faithfulness in my life, as narrated by Chris Rice in Untitled Hymn.

I was saved at church camp as a fourth grader.  I was one of those kids that gripped the back of the pew in front of me while the verses of “Just As I Am” passed by, never having the guts to go forward in Big Church.  Church camp took away the stress of admitting my sin and my need for Jesus in front of a bunch of dressed-up adults, and He met me there in a big room full of sweaty kids.  A friend congratulated me on my big decision with a package of peanut M&Ms, and I’ve never looked back.

Weak and wounded sinner

Lost and left to die

O, raise your head for love is passing by

Come to Jesus

Come to Jesus

Come to Jesus and live

Before I invited Jesus into my heart, I used to stand in my backyard and worry about whether I’d go to Heaven when I died.  I knew about Jesus, I just didn’t know Him as my Savior.  After that night at camp, I had no such doubts about where I would end up.  What a joy to know that I was irrevocably His, no matter what stupid mistakes I made or what trouble I got into.  Salvation doesn’t make you immune to pain or trouble… not even close.  It does, however, tell you the end of your story.  Jesus took care of all our mistakes, all our sin.  He promises eternal life for those who accept His gift.  Period.

Now your burden’s lifted

And carried far away

And precious blood has washed away the stain

So sing to Jesus

Sing to Jesus

Sing to Jesus and live

Looking back, doesn’t childhood seem simple?  Heck, in the light of eternity, even high school seems simple.  I made mistakes like everyone else, did idiotic things like everyone else.  It’s a wonder I survived.  Through all of that, God was faithful to provide what I needed.  Of course, He didn’t provide it all at once (which would have been more comfortable – I’m a control freak, after all), but little by little.  His Word is a lamp unto your feet, not a floodlight.  Sometimes, wouldn’t you just love a floodlight?  I would, but then I guess I wouldn’t need faith.

And like a new born baby

Don’t be afraid to crawl

And remember when you walk sometimes we fall

So fall on Jesus

Fall on Jesus

Fall on Jesus and live

Adulthood.  Parenthood.  Here’s where things get rough.  I struggled after my mom died.  It was painful to praise the God who had taken her away.  I prayed that He would restore the joy of my salvation, and He did… eventually.  Almost two years passed before I could really sing to Him with joy in my heart again.  Just as I was getting back on my feet, my best friend moved away.  Shortly after that, I was diagnosed with BRCA and my world was turned upside down.

Sometimes the way is lonely

And steep and filled with pain

So if your sky is dark and pours the rain

Then cry to Jesus

Cry to Jesus

Cry to Jesus and live

Looking back on the years of my life, there is so much joy.  I had an idyllic, secure childhood in a strong family with incredible parents.  I have a happy marriage to a great guy that I love.  My children are healthy, happy, and hilarious (most of the time).  I love my work.  My friends are great.  My church is amazing.  I have so much to thank God for.

Ohh, and when the love spills over

And music fills the night

And when you can’t contain your joy inside

Then dance for Jesus

Dance for Jesus

Dance for Jesus and live

Here comes the money verse… the ugly cry.  It’s meant to be joyful (and it is), but it makes me think of a picture taken of my mom the day before she died.  She had used up every last bit of the body she’d been given.  For a long time, I hated that picture.  I wanted to destroy it, because I thought I’d never be able to remember her as whole and healthy again.  It took a while, but those memories came back.  When I think of her now, she is healthy and strong.  I don’t worry anymore that she was scared or in pain those last few months, because she isn’t worried about that anymore.  When I prayed for God to heal her, He did it His way.  He chose to heal her in Heaven by ditching that old, worn out body and giving her a brand new one that will never fail her.  I can hear her laughing… can you?

And with your final heartbeat

Kiss the world goodbye

Then go in peace, and laugh on glory’s side

And fly to Jesus

Fly to Jesus

Fly to Jesus and live

There’s that ugly cry…

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Epilogue – What Now?

I will not fear the war, I will not fear the storm.

My Help is on the way.

Oh my God, You will not delay.

My comfort and strength always.

            Jason Ingram & Kristian Stanfill

 

When I was 13 or so, a family “friend” told me that my mother became bitter after her cancer diagnosis.   I disagree. I think that after such a close call, she stopped suffering fools. If she stopped hanging around with you, she didn’t think you were worth what precious time she feared she might have left. Looking back on it, I think anyone who would try to poison a 13-year-old girl’s mind against her mother wasn’t worth her time. Mom was a good judge of character.

I only share that because I feel like such a scary time has to affect your psyche and your attitude in some way – it’s only human. Looking back, I can’t think of a single area of my life that was unaffected by my medical craziness. My involvement in church choir, my relationship with my kids, my work, my relationship with friends, my self-reliance, my body image, the way I remember my mother… I’d like to think that I have stopped majoring on the minors, and that I have a more eternal perspective than I used to. That’s not always true, but I think it is more true than it used to be.

Sometimes I feel like I haven’t made much physical progress. Then I remember that it really was once a monumental task to change my shirt, wash my hair, or turn a steering wheel, and I know that I’ve come a long way.  I think I can summarize my recovery progress in three quotes from kids and clients.

  1. From June, the first time I wore something other than that old, red, holey baseball jersey: “Yay, Mommy! You changed your shirt!”
  2. From August: “You look better. The last time you were here, I thought I was going to have to carry you to your car.”
  3. From October: “Well, you look like yourself.” I chose to take that as a positive.

Nine months after the mastectomy, and four months after the expander exchange and tissue transfer, and two months after nipple reconstruction, I described the situation this way:

The most sensitive area is 2-3 inches under my armpits. The skin there is still sore to the touch, and most bras hurt that area. Initially that area was damaged by the J-P drains, and later it was aggravated by liposuction in the tissue transfer. The nipple area is still numb as well, which in some ways has been a blessing. Reconstruction would have been much worse with working nerves in my skin – the pain was concentrated in the muscles instead.   Some days it feels like your face after dental work, numb and puffy. Other days it feels like the skin on your knee while a scrape is healing – the skin is stretched tight and it hurts to move it, but you know you must.   Mostly, the pain has become more of a constant awareness now – random shooting pain, bras that put pressure on my sore sides, weird itches that scratching doesn’t help. The implants don’t move much, so I bump them into the washer getting clothes out, or they get in my way a dozen times a day. They will become my new normal, but they haven’t yet.

 A year after the mastectomy, seven months after the expander exchange, and five months after the nipple reconstruction, I described it this way:

My chest feels like uncomfortable shoes you can’t take off. Sometimes it’s less painful, but it’s always on your mind. The drain dimples have disappeared, and the hole in my side is less noticeable. The scars are still pretty red, especially on the right side, but the nipple tattoos cover about half of them. I can imagine that another six months will make a big difference.

A year and a half after my mastectomy, I could see the light at the end of the tunnel. I was overweight from sitting on the couch doped up on muscle relaxers, from hormone imbalance, and from being too exhausted and weak to cook, but finally strong enough to do something about it. I was scarred, but healthy. I was menopausal, but not miserable. I could look back at a rough time, blessed and thankful for God’s faithfulness in bringing me through to the other side. In the middle of it all, my daughter accepted Jesus as her Savior and was baptized. What more proof do we need that God works for our good, even in our darkest times?

Unfortunately, part of my new reality is that I will always need to be hyper-vigilant. As Mom got farther and farther from her initial breast cancer, she was able to go a full year between checkups. I am told I will never have that luxury. I will have to go to either the oncologist or the breast surgeon every six months for the rest of my life. The comparison is strange to me since I don’t actually have cancer like Mom did, but I am thankful to have found doctors who are serious about keeping me alive. This fact was driven home in April 2013, when I found new lump in my left breast.

My left armpit (or just below it, really) was very lumpy, because there wasn’t much tissue between my skin and the edge of the implant. I started to think the implant was folded over in that area, but I don’t know if that’s necessarily the case. Regardless, it was very sore to the touch, but it had been pounded into me to poke around and get to know every lump – if I could move the lump around, it wasn’t dangerous. There were little pockets of air (or something) in each implant that migrated around – one was on the bottom edge of my right side for weeks, then floated up to the top somehow. Those little things were just strange, not dangerous.

I wouldn’t say either side was comfortable, or really felt normal. There were many days that I had the passing thought, “I can’t wait to get home and take off this uncomfortable bra”, only to realize that the uncomfortable bra was my pectoral muscles, and I was stuck with it. That spring, the left side was more uncomfortable than the right. A trainer friend had offered to help me do some rehab and regain some range of motion, and she was hopeful that getting some blood flow to those muscles and working out the kinks would reduce the discomfort. I’m not sure if my chest felt any better, but at least the activity and resulting soreness felt different and made me feel like I was making some progress. In the course of our first few weeks, my left side got more and more lumpy, and eventually I found a lump that I couldn’t budge. I actually put off going to the doctor for several weeks, thinking it would disappear or move like the others.

One day I bent over to pick something up, and a shooting pain went through the left side of my chest. Even my daughter noticed my grimace, and asked if I was okay. I decided enough was enough, and called Dr. Skrine. She couldn’t get me in for two weeks, so she recommended going to the plastic surgeon if he could get me in sooner. I saw him April 8, 2013. I had hoped for a quick dismissal of my concerns, a “that’s just the edge of the implant” diagnosis. I didn’t get it. Instead he said it definitely wasn’t the implant, and that we needed to do a biopsy. He wasn’t very concerned, and felt that the lump was probably scar tissue. I’d been trying to lose some of the weight I’d gained during all those surgery recoveries, so the thought was that maybe the scar tissue was just more exposed now. I asked if we could just move up my MRI (scheduled for late June), but he said an MRI couldn’t prove a negative, meaning that even if my MRI looked clear, the lump would still be a question mark. He recommended the biopsy now, just to be sure, and I had to admit that doing extensive proactive surgery but avoiding a little biopsy seemed idiotic.

I was offered an appointment on the morning of April 15, 2013. I stupidly declined it, thinking of all my tax returns, quarterly reports, and grant billings that were due that day. Instead, I took an appointment on April 22, reasoning with myself that it was just scar tissue and not anything to worry about anyway. So, what did I start doing the second I left the office? Worrying, of course. By the end of the day, I was an emotional wreck. The next morning I called to see if the April 15 appointment was still available, and of course, it wasn’t.

Luckily it was a very busy two weeks – my husband was ordained as a deacon at our church, my daughter was baptized, and work was crazy. The 22nd arrived, and I very nervously climbed up in the chair for the biopsy, wishing someone would knock me out so I could wake up and have it all over with. Soon enough it was, and within a few days I had the good news that the lump was simply scar tissue with a clear pathology report. I’m afraid that was just the first of many scares, but I have done all I can do to reduce my risk. Well, everything except exercise regularly and lose the weight I gained during my recovery… I guess I should get to work on that.

___________________

I am thankful for modern medicine, which has given me the opportunity to take control of my health and make decisions that give me a better chance seeing my kids grow up. I am also thankful for health insurance, which has paid for most of the cost of my five surgeries, as well as my many tests, biopsies, and one blood transfusion that still gives me the heebie-geebies when I think about it.

Two people along the way called me a hero, which made me uncomfortable. I am not a hero. I am selfish – God offered me a gift, and I grabbed it with both hands. Accepting a gift doesn’t make you a hero, but it should make you thankful. I AM THANKFUL.

On my first Sunday back at church after my mastectomy, I ran into a very wise man, who asked how I was feeling. I told him that I felt I had aged 20 years in the past few weeks. He said, “Well, let’s hope you’ve also added 20 years to your life.” I think that is the smartest observation anyone has had about this journey I’m on. One rough year is nothing compared to the future I hope is ahead, seeing my kids grow up and become who God wants them to be.

God is the same yesterday (for my grandmother, who I will meet for the first time in Heaven), today (for me as I grieve for Mom and work my way through recovery), tomorrow (for Katie as she faces these same decisions and fears), and forever (when we will have all our questions answered and can leave these imperfect bodies behind). He does not change, regardless of our circumstances, our worries, our illnesses, or even our death.

Give thanks to the Lord for His unfailing love.

 

Chapter 18 – Waiting

Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7

I really don’t like asking people for help. It makes me a little nauseous. That being the case, 2012 was a serious test for me. With 5 surgeries in 7 months, I had to lean on my husband, my immediate family, friends, and my kids’ teachers to an extent that was actually a little humiliating to me. Being unable to care for myself and my children, not being able to drive, and being medicated to the point where I couldn’t serve my clients or meet deadlines made me feel like a huge failure, and made for a very difficult year. God was probably teaching me a lesson, telling me to stop “toiling and spinning” and wasting my time in sinful worry and trust Him to meet my needs. I’m still working on that lesson.

Lesson number two was a little more obvious, but no easier than lesson one. I believe God used 2012 to remind me to keep an eternal perspective and recognize that life is fleeting. These bodies we occupy are wasting away, but because of Jesus’ sacrifice for us on the cross, we can be assured that this life is not all there is. Mom had that confidence, and I grieve for her with the hope that I will see her again in Heaven because we share a Savior who promises eternal life.

That being said, I am my mother’s daughter, and I inherited more than her genetic predisposition to cancer. I was bred for WORRY, and she raised me well.

When Mom was very sick and could no longer make it to church, our music minister began visiting her at home. She told him things I really don’t think she would have admitted to me. Thankfully, he shared some of those when he performed her funeral. He told us that she was afraid. She had fought so hard for so long, and I thought he meant that she told him she was afraid to die. That wasn’t it. She told him was afraid she would die looking weak, and that she wouldn’t be a strong example for us. What she didn’t know was that she was NEVER weak – not ever. It never occurred to me for a second that she was giving up or showing weakness.

Following her example, I would like to think that as I made my decisions I was more concerned with what would happen to my family than what was happening to me, but I’m not sure that’s true. What is true, though, is that I had no fear of being abandoned – like my mother, I knew that it was “well with my soul” because of Jesus Christ. On a lighter note, I did worry that if I died in surgery, all my kids would remember was the screaming harpy I could be when they left dirty clothes on the floor.

I have so many questions. Would I have had cancer by now if I hadn’t had the surgeries? Who would I be now if Mom had died from her first malignancy the year I was born? Conversely, who would I be if she hadn’t had cancer at all? We never fought much, because we knew life was short and temporary. She had a big temper, but also gave us big acceptance and love – there was never any question about where “home” was, even after my marriage. Can I be like that for my children? Can I be as fiercely loyal as my mother was, not having been through what she went through? I’d like to think so, but who knows?

After Mom died, I had a heightened level of fear. In the middle of the night, I was consumed with the thought that I was going to get cancer, or worse, that I already had it. I had trouble sleeping, waking up in the middle of the night trying to remember when I last had a mammogram, or realizing I hadn’t been doing my self-exams. Part of that was just grief, but I felt like I had to put it from my mind somehow or live in permanent fear of something I couldn’t control. In a way, genetic testing and all this preventative surgery has, while confirming my high level of risk, given me peace from worry because I have taken all the preventative steps available to me.

Waiting … I hated waiting for Mom’s cancer to come back, I hated waiting for mammogram results, I hated waiting for what I thought was inevitable to happen. It suited my personality better to fight, to make proactive decisions for myself and my family, to DO something. With my surgeries done, in theory I have nothing left to fight, so I am back to waiting. If it was just me, I could deal with that, because the doctors tell me I’ve taken all the proactive steps I can. My daughter, however, has the full fight ahead of her.

Now we wait for her.

I mentioned that Katie’s gymnastics coach, Diane, has breast cancer and a BRCA mutation. In August 2013, her 13-year-old daughter found a large lump in her breast. When she whispered that in my ear, all I could do was hug her and promise to pray. I understood her fear like no one else, because her daughter’s risk and my daughter’s risk are the same. As both a person with a mutation and a parent of a daughter who is high risk, it feels a little like standing on train tracks. You wait and hope there is no train coming, but you know can’t leave the tracks and get out of the way. In Diane’s case, I am happy to say her daughter’s lump turned out to be a benign cyst. Crisis averted… for now.

In March 2013, I participated in a Basser Research Center study for BRCA positive women, meant to observe “non-cancer” outcomes in patients after full hysterectomies. The questions in one part of the study were about whether my BRCA status affected my decisions to marry or have children. The issues they raised made me sick to my stomach, and worried me almost to the point of depression, because I hadn’t considered those questions for my daughter.

Thankfully, I was already married before the test became available, and had two children when I was tested. Katie will have to decide at 18 whether to be tested, before marriage, before motherhood. I had been so consumed with fighting my own battle that I hadn’t considered how testing Katie would affect her decisions. I had spent considerable time worrying about her health, but not her life.   For a few months, I stopped writing this account of my year, because it caused me such sorrow to think of Katie going through what I have gone through. My journey is simply the prelude to hers, as Mom’s was to mine.

I have been consumed with how my decisions and actions will affect my daughter. Assuming my surgeries really do prevent me from getting cancer, what if Katie is less likely to take proactive measures because she hasn’t seen cancer firsthand? Mom’s cancer was a huge over-arching theme in my life, and it undoubtedly affected everything about me. I chose to be proactive to avoid cancer not only for myself, but for my family. What if my actions and decisions make Katie less likely to do what I did? Alternatively, will she be more accepting of the surgery because she knows I lived through it? How can I possibly encourage her to do what I did before she is married and has children? Should I encourage her not to?

What if she never has the chance to nurse a baby?

Worry, worry, worry. See what I mean?

We know from the story of Joseph in Genesis that God can use horrible situations (like Joseph’s brothers selling him into slavery) to do amazing things (placing Joseph in power in Egypt so that he could save his whole family, thus allowing the Nation of Israel to survive). I know that God has certainly brought good from bad in my life.

Without cancer, I might have valued Mom less, taken her for granted, and wasted the time I had with her.

Without finding a lump, I would not have met Dr. Skrine and been given the chance to save my life.

Without The Crazy Lady’s horror stories, I might not realize how well things actually turned out.

Cancer is bad… lumps in your breast are bad… my appointment with the crazy lady was really bad… but God used all those things to bring about something good. I am alive and cancer-free. Breast cancer will not hover over my life like it did my mother’s or my great-grandmother’s. Fear has been pushed aside, kept at bay.

God used bad things to bring about good things. He is faithful.

 

Great is Thy faithfulness

Oh God, my Father

There is no shadow of turning with Thee

Thou changest not, Thy compassions they fail not

As Thou hast been, Thou forever wilt be

 

Great is Thy faithfulness

Great is Thy faithfulness

Great is Thy faithfulness

Lord, unto me

Chapter 17 – Do They Sell Mederma in Barrels?

He heals the brokenhearted and binds up their wounds. Psalm 147:3

Praise the Lord, my soul, and forget not all his benefits—

who forgives all your sins and heals all your diseases…

                        Psalm 103:2-3

I apologize in advance for excessive use of the word “nipple”, a word that I hate but can’t find a substitute for.

I went back to see the plastic surgeon on November 28, and he agreed that I had healed enough to schedule my nipple reconstruction. He planned to work on the hole at the same time, pulling fat from my “bra strap” area and using it to fill the hole. However, he was very careful to say that he wasn’t confident that it would work – the hole might be smaller after that tissue transfer, but it would probably not be gone. I didn’t know whether to cry or be glad that, for once, he wasn’t over-promising.

There were two options for the nipple construction. The first was to simply create a nipple from my own skin, which would eventually flatten out to what the plastic surgeon called a “nubbin”. The term was creepy to me, and the procedure seemed pointless – why go through surgery to build something that was going to quickly disappear? The other option was a Cook Implant, which created a larger, more realistic nipple.

We didn’t know what questions to ask about any of this. All I knew about nipple reconstruction were the horror stories The Crazy Lady had told me – reconstructed nipples were hard to hide, the tattoos were painful and quick to fade. I think I didn’t really want to know how the thing would be built, because all the possibilities turned my stomach. Because I chose not to dig into the process and ask those questions, and because the plastic surgeon never volunteered information I didn’t specifically ask for, we went into this phase of reconstruction almost blind. After the surgery, I found out Cook Implant was biological material, and I didn’t want to know if that meant cadaver, pig, or something worse.

I desperately wanted to get this surgery done before year end. The fact that I had already met my insurance deductible was a factor, but there was also something psychological about it. I wanted all my trauma limited to 2012. Unfortunately, when we tried to schedule it, I couldn’t get in until January 18 unless I wanted Christmas Eve surgery. Even New Year’s Eve was booked up. So much for my plan to contain all my surgery to one year – I got on a waiting list and went home to decorate for Christmas.

A week later, I got a call from the plastic surgeon’s office. They had a cancellation for December 19, and I accepted it without hesitation, thankful for a week’s notice. I was suddenly very, very behind on Christmas preparation.

The surgery took place the week before Christmas, ready or not. Again, it was fast. We were home from the hospital by 11:15. I was in more pain than after the hysterectomy, and there was a good reason. I looked like I had fought a cage match. Even with bandages, I could see that the bruising from the tissue transfer was extensive and ugly – tissue had been removed from both of my sides and moved to fill the hole in my right side. The bruises on my right side looked almost as bad as the hematoma from my first surgery, purple, green, and bigger than my hand. When I showed my son the bruises on my sides, he was impressed and thought I was tough – high praise from a ten-year-old boy.

The day after the surgery, we had an appointment with the plastic surgeon for a bandage change, and this time we knew which office to go to (because I remembered to ask). We went into an exam room with the Fort Worth office’s personality-free nurse, as opposed to the overly-optimistic, over-promising nurse I usually had in Southlake. She hardly spoke to us, and gave us no warning about what were about to see. I figured nothing could be worse than finding the hole after the expander exchange.

When the bandages came off, shock was exponentially worse than the last unveiling. The bruising was even more extensive than I thought, but that wasn’t the worst part. The nipples were huge, protruding no less than half an inch. They were covered with stitches, not the Dermabond I had come to expect. Each nipple was covered in stitches and knots, with extra thread sticking out everywhere. New incisions extended from that spiky mess to the left and right an inch in each direction. I had stupidly expected the old incisions to be “reused”. I wasn’t prepared for this additional scarring, and I certainly wasn’t expecting gigantic gory nipples. Quite honestly, I was nauseated. Mark was with me, and I wanted to hide so that he didn’t have to see how disgusting I was.

To make matters worse, the tissue transfer hadn’t completely filled the hole on my right side. I was shallower, but still there. The plastic surgeon had warned me that the transfer might not take, so this was disappointing, but didn’t throw me for a loop as much as the nipple disaster did.

I was shocked at my appearance. For the next week, I refused to look in a mirror. As I described it to a friend at the time, I looked like someone’s crappy craft project. I had to build gauze shields over these giant nipples in order to leave the house because I couldn’t wear a bra. The stitches were bleeding and seeping, and the thread poking out in a dozen places caught on the gauze when I changed it out. It was disgusting, and to add insult to injury, I was limited to only three shirts that had enough “busyness” on the front to hide the bumpy gauze. To top it off, my chest hurt.

To complicate things further, my kids had a piano recital two days after my surgery. I was supposed to play a duet with my daughter. This required use of my arms, an outfit that would cover my bandages, and the energy to take a shower and put on makeup. I found a bulky shirt, an even bulkier scarf, and stopped taking pain pills so that my brain would be clear enough to play the duet. I had a pain pill and a bottle of water sitting on my chair, ready for the moment we finished the duet and I could shuffle back to my chair. It went really well, but I was happy to get that pain pill down. Mark took a picture of me with the kids right before the recital, and I look like I’m about to slide out of my chair.

Our family Christmas get-together was the night after the piano recital. Once I found a place to sit, I handled that better. Two of my aunts by marriage have had breast cancer, so we had notes to compare. I probably over-shared, especially considering how consumed I was with the Frankenboobs I was sporting, but it was all very fresh on my mind.

When I saw the doctor a few weeks later, he assured me that the nipples would reduce by about half over time. Oh, how I wish I’d been given that information before the bandages were removed. The Cook Implant was made from biological material that gradually biodegrades and is absorbed by your body. I didn’t want to know more than that – that’s disturbing enough.

A month later, the stitches were still oozing and bleeding. I went to the doctor once, certain that one was infected, but they assured me that the ooze was the stitches dissolving internally, then leaking out the unhealed incisions. Gross does not begin to describe it, and I was beginning to think the process would never end. The stitches on the lateral incisions on either side of the nipples healed more quickly. I was told that they would dry up and fall out on their own, but after a month or so, very few had fallen out, and some even seemed to have skin forming around them. That didn’t seem like a good idea, so I tried picking at the dry stitches very gently. Once I had one out, I was insatiable. I wanted them all gone. Within five minutes, I pulled out 21 dry stitches, most of them complete with knots, and that was just from the lateral incisions, not the nipples themselves.

I went to see Dr. Skrine on January 14, 2013, and I was still very concerned at that point. I showed her the hole in my right side.   She said, “The plastic surgeon can fix that”, not realizing that he already had. After I reminded her that I’d had my balancing surgery already, she admitted that my reconstruction wasn’t the worst she’d seen, but that she probably wouldn’t recommend my plastic surgeon anymore. She told me I wouldn’t really know what the finished product would look like until it had a year to heal, so I tried to put aside my frustration and just give it time.

I made a note in my calendar that I was finally able to wear a bra again on January 25, five weeks after the surgery. That day, I still wore a scarf, because I forgot that I didn’t need one to cover bandages. I had gone through four boxes of gauze 4x4s and 2x2s and three rolls of bandage tape, and had gotten very adept at creating discreet bandages. If you ever need help building something out of gauze and tape, call me. I’m your girl.

I have to admit that the plastic surgeon was right when he said the nipples would reduce by half. They are no longer horrific. However, I wish he had warned me that they would be so grotesque at first. It would have saved me a lot of heartache and, I have to admit, anger. I know managing expectations is my job as a patient, but it’s also part of HIS job, and a little information goes a long way.

To “finish the job”, it was recommended that I have color tattooed on. My plastic surgeon has a tattoo artist on staff who is a registered nurse. I had this done on May 8, 2013, not quite a year after my mastectomy. I’ve heard that some people tattoo pink ribbons on, but that was not for me. I even considered not having the color put on (because of The Crazy Lady’s horror stories), but I decided it was worth a little more pain to cover up some of my scars. The process really wasn’t that bad compared to everything else. Like dental work, the anesthesia shot was the worst part.

My original tattoos faded out considerably (I suppose The Crazy Lady had to be right about something), so when I went in for my free touch up in August, the nurse said we needed to repeat the entire process with a different color. In the end, it was worth the trouble, because the tattoos did make me look a little bit more normal, which was the point of reconstruction after all.

As unpleasant as the reconstruction process was, I am thankful for it. It was a little like childbirth in that you endure the excruciating part to get to the payoff. While I look at myself some days and still see the crappy craft project, I must admit that I have it so much better than my mother and so many other women who didn’t have the option of reconstruction.

I am grateful to God for binding my wounds (Psalm 147:3), healing my diseases (Psalm 103:3), and for insurance. Definitely insurance, even if it’s not mentioned in the Bible.

 

Chapter 16 – Glorious Day, My Foot

My expander exchange was scheduled for October 3, 2012. I still had not been released by Dr. Allen after my hysterectomy, and wouldn’t be until November 14, but by this time, concurrent recoveries seemed like a time saver, and there was no way I was putting THIS surgery off. The breast cancer consultant I met with before my mastectomy had described the expander exchange surgery as a “glorious day”, and that’s what I was counting on.

I arrived at the outpatient surgery center at 6:00 in the morning for my fourth date with general anesthesia for the year. Several issues needed to be dealt with during the expander exchange.

  1. My tissue expanders would be removed, and silicone gel implants would be put in their place.
  2. My right expander had been sitting almost one inch higher than the other for the past three months, and needed to be “balanced”.
  3. The incision on the right side was kicking out under my arm, and the plastic surgeon thought this could be corrected by releasing the scar tissue.
  4. There was a hard place on my right pectoral muscle that my oncologist had requested be biopsied.

I was completely finished and home again by 12:30. It seemed ridiculous that a person could be cut open under general anesthesia and sent home before lunch time, but apparently no monitoring was required. I went home with the usual Tylenol with Codeine and muscle relaxers. They had messed around with my pectoral muscles again, causing spasms. These were not as bad as the ones I experienced with the expander fills, but I didn’t want to play around with them. I settled into my familiar place on the couch, wrapped in an Ace bandage. I didn’t even try to peek.

The next day I was very sore, but was scheduled to have my bandages changed at the doctor’s office. We headed for his Southlake office, only to find it deserted. In my painkiller haze, I had forgotten to ask WHICH office I should go to (and they didn’t specify), so I went to the wrong one out of habit. When I called, they said that I could change the bandages myself rather than driving to Fort Worth. I was a bandage-changing expert by then anyway. They warned me not to be shocked – there would be a lot of bruising, and the implants would be lumpy from the compression bandage.

My mastectomy scars had been healing well before this latest surgery, but they were stretched out by the expansion, resulting in wide pink marks rather than the usual lines you think of with scars. The doctor had said not to worry about them, because he would cut off the scarring during the expander exchange surgery. As a result, I hadn’t even bothered with Mederma or Vitamin E gel, but they didn’t look too bad at all. I expected these new scars to be even cleaner, since they were the “keepers”.

When we got home, we set to work changing bandages, expecting glorious new boobs with clean scars and a few bruises. What I found was something completely different. The implants were much smaller than the expanders, which was surprising (even though they had warned me about compression). That wasn’t the worst of it. I had dark red incisions replacing the fading ones. My chest was an ugly mess of green, yellow and purple bruises, criss-crossed with black Sharpie marks.

The most shocking part wasn’t the color, size, or shape, however. There was a hole in my right side. It was covered with skin, but it was unarguably a HOLE. The place the doctor thought was a divot caused by attached scar tissue was now so deep that I could bury my finger ¾ of an inch in it without applying any pressure at all. It was big, and it was under my arm where it would be visible if I was wearing a swimsuit.

What I saw was disfigurement, and I cried.

It was several days before I saw the doctor, and I was angry when I went. I had an ugly speech prepared about how he had promised to release the scar tissue on my right side, and how that was supposed to correct a small problem – instead he had created a much bigger problem. Mark was there, probably hoping I wouldn’t embarrass us both by having a fit. However, when the doctor walked in and asked how I was feeling, I just teared up and forgot my speech. I showed him my right side, and he looked very surprised. His comment was something like, “That’s not supposed to look like that.” He indicated that there were things we could do, but that we needed to let the swelling go down before making any decisions. The most likely solution was a tissue transfer, meaning that fat would be pulled from one area and used to fill the void.

I had known from the start that a “balancing” surgery might be required, so this didn’t add anything to the schedule. It just meant that my balancing surgery would be more complicated. I let the anger go, and started trying to loosen my grip on my disappointment.

Despite feeling emotionally raw, I felt much better physically after a week or so. I still wasn’t released from restrictions by my gynecologist after my hysterectomy, but the implants were much more comfortable than the expanders I had been struggling with for months. I still needed a pillow to block the seatbelt when I drove, and I still couldn’t sleep flat on my back, but things were looking up, so I decided to head to the store for some new bras. I had no idea what size I was, so I subjected myself to the embarrassing task of getting measured. The sales associate was about 19 years old at most, and I tried to explain that I needed a bra without an underwire because I still had some significant pain. She either didn’t listen, or didn’t know what the word “mastectomy” meant, because she observed that my measurements were perfectly balanced, and chirped, “You’re so LUCKY!!”

I let her live.

Chapter 15 – By the Numbers

“If there must be trouble, let it be in my day, that my child may have peace.” – Thomas Paine

For you created my inmost being; you knit me together in my mother’s womb. Psalm 139:13

He is the Maker of heaven and earth, the sea, and everything in them— He remains faithful forever.  Psalm 146:6

When Ryan was four, our theme is preschool choir was “God is the Maker of Everything”. We talked about it every Wednesday night, sang about it, created craft projects about it, and pretty much wore the topic down to a nub. It made an impression on my boy. One day out of the blue, with his precious little speech impediment that only his mother could truly understand, he told me, “God made everything, and when I get to Heaven I want to see His toolbox!”

On September 26, 2012, I met with a genetic counselor at my oncologist’s office to review my cancer-ridden family tree. I was worried about what she would say, but I had to admit that I found the genetic component of all of this fascinating. It really was like getting a glimpse of the goodies in God’s toolbox.

I entered the room that day feeling like I already knew the worst, and for once, I did. In fact, The Crazy Lady had struck such terror into my heart that I, in my usual pessimism, figured that Katie and I were doomed no matter what we did. The following is my best attempt to address all the risk factors even if they didn’t apply to me, because they might apply to YOU. If you want a more official explanation, the BRCA fact sheet at www.cancer.gov is really helpful. In fact, I relied heavily on that fact sheet and the Texas Oncology website to fill in the gaps where my notes were less than stellar.

BRCA is short for “breast cancer susceptibility gene”. BRCA1 and BRCA2 are genes called tumor suppressors, and in normal cells they help prevent uncontrolled cell growth. Mutation of these genes greatly increases a woman’s lifetime risk of breast and ovarian cancer, especially before menopause. BRCA1 mutations are also associated with increased risk of cervical, uterine, pancreatic, and colon cancer. BRCA2 mutations are associated with increased risk of pancreatic, stomach, gall bladder, and bile duct cancer, as well as melanoma. BRCA1 and 2 mutations also increase the risk of breast cancer in men, as well as their risk of pancreatic, testicular, and prostate cancer. BRCA2 mutations seem to be worse for men than BRCA1.

It’s interesting to note here that when I first discussed this with my daughter’s gymnastics coach (a breast cancer survivor already by that time), she couldn’t remember whether she had BRCA1 or BRCA2, but referred to it as “the bad one”. At the time, I didn’t know better and didn’t argue, but there really isn’t a “good one”.

Going back to the numbers, these next two paragraphs sum up why I made the decision to have these prophylactic surgeries:

About 12% of women in the general population are expected to develop breast cancer during their lifetime. Women with a BRCA1 or BRCA2 mutation are five times more likely to develop breast cancer than women without the mutation.   FIVE TIMES.

About 14% of women in the general population are expected to develop ovarian cancer. The numbers are less clear for ovarian cancer than for breast cancer, but between 15% and 40% of women with BRCA mutations will develop ovarian cancer.   Make sure you read that correctly – that’s not 15-40% of the general population that will get ovarian cancer, it’s 15-40% of BRCA mutation carriers.

The likelihood that a breast and/or ovarian cancer will be associated with a harmful mutation in BRCA1 or BRCA2 is highest in families with:

1. A history of multiple cases of breast cancer – both my mother and her grandmother had breast cancer. My father’s grandmother had breast cancer as well, but my dad’s side of the family doesn’t appear to carry this genetic mutation.

2. Cases of both breast and ovarian cancer – my mother had both breast and ovarian cancer, her mother had ovarian cancer, and her grandmother had breast cancer.

3. One or more family members with two primary cancers (original tumors that develop at different sites in the body) – my mother had two primary cancers (breast in 1973, ovarian in 1994).

4. Ashkenazi (Central and Eastern European) Jewish background – this is the only risk factor I don’t have.

There are family history factors that reveal a likelihood of BRCA1 or BRCA 2 mutations:

1. Two first-degree relatives (mother, daughter, or sister) diagnosed with breast cancer, one of whom was diagnosed at age 50 or younger – My mom was diagnosed with breast cancer at 35. I don’t have a sister.

2. Three or more first-degree or second-degree (grandmother or aunt) relatives diagnosed with breast cancer regardless of their age at diagnosis – my grandmother had ovarian cancer, not breast cancer, and my mother’s only sister has not had cancer. This one doesn’t apply to me.

3. A combination of first-degree and second-degree relatives diagnosed with breast cancer and ovarian cancer (one cancer type per person) – Mom had breast and ovarian cancer, her mother had ovarian cancer, and her grandmother had breast cancer.

4. A first-degree relative with cancer diagnosed in both breasts (bilateral breast cancer) – my mother had bilateral breast cancer.

5. A combination of two or more first-degree or second-degree relatives diagnosed with ovarian cancer regardless of age at diagnosis – my mother was diagnosed with ovarian cancer in her fifties, and my grandmother died of ovarian cancer at 45.

6. A first-degree or second-degree relative diagnosed with both breast and ovarian cancer regardless of age at diagnosis – my mother had both breast and ovarian cancer.

7. Breast cancer diagnosed in a male relative – finally, a family risk factor I DON’T have.

Cancer.gov states that these family history patterns apply to about 2 percent of women. Lucky me.

The genetic counselor took me through each type of cancer that is affected by the BRCA1 mutation.

1.  Pancreatic cancer risk – 1-4% with BRCA1, less than 2% for general public. Aggressive pancreatic screening is not considered necessary. This was interesting, since The Crazy Lady had indicated that I needed annual screening for pancreatic cancer.

2.  Colon cancer risk – the general public has a 5% risk of colon cancer, and risk for BRCA1 carriers is about 10%. My paternal grandmother had colon cancer and passed away at 57 from it, but the geneticist stated that the screening recommendation is still a colonoscopy at 50. I may choose to pursue that earlier, because I am a chicken.

3.  Breast cancer risk – there are no recommendations for further action after prophylactic bilateral mastectomy, although my risk will never be zero. It is around 1% now.

4.  Ovarian cancer risk – my 40% risk was reduced to about 5% after my hysterectomy and BSO. She indicated that after my surgery, pelvic washes should have been done to search for “occult” or hiding cancer cells.       Also, the radiologist should have done serial sectioning of my tissue and tested every piece. It is my understanding that this was done.

My risk can never be reduced to zero because some breast and ovarian tissue is always left behind after surgery. Periodic MRIs and CA125 blood tests will help screen for cancer over my lifetime. As with most ovarian cancer, there is no early detection mechanism for what is called Primary Peritoneal cancer, or cancer of the inner lining of the abdomen (cells left behind after a hysterectomy). The risk of that type of cancer is very low (1%).

For men, including my son and my brother, a BRCA1 mutation would mean prostate risk of less than 30%, compared to 15% for general public. They could also have slightly higher risk of male breast cancer. My brother has decided not to be tested for BRCA1 because for him, the numbers just aren’t compelling. In men, the risk doesn’t significantly increase over the general population in any kind of cancer they aren’t already screening for annually. In his case, the genetic counselor recommended a high level of suspicion for any changes in the chest wall to detect breast cancer.

The big questions for me surrounded my children’s risk. The counselor said that generally she doesn’t advocate testing children. They can consent to be tested at age 18. Each of my kids has a 50/50 shot of having the mutation. The counselor said that she had never seen a BRCA1 positive teenager with breast cancer, and indicated that teenage breast cancer would most likely result from Li-Fraumeni Syndrome, which I (mercifully) do not have. The average age for first breast cancer with a BRCA1 mutation is 35-40 years of age, which gives us some time for a cure to be found for Katie.

I waited until age 39 to be tested. I was fortunate that it wasn’t already too late.

The genetic counselor requested that we be in touch annually, and that I contact her if anything changes for me. She also asked that I participate in a research study, as any research done in the BRCA mutation area could be of help to my daughter in the future. Finally, she recommended that I contact her in the future when it came time to tell my kids about their risk, so that we could discuss it first. I appreciated that, and was glad it seemed like something I could put off until another day.

Chapter 14 – Uh Oh, Spaghetti-Os

Be strong and courageous. Do not be afraid; do not be discouraged, for the Lord your God will be with you wherever you go. Joshua 1:9

I’d been told that six months was the longest I could wait to have a hysterectomy, and that deadline was fast approaching. I was weary, sore, and still taking a lot of pain meds and muscle relaxers (mostly because of the tissue expansion process), but like it or not, it was time for more surgery. Since my new and improved oncologist agreed that my regular OB/GYN could perform my hysterectomy, the surgery was to be performed at Baylor Regional Medical Center in Grapevine on September 4, 2012. I opted for the robotic surgery, which involved smaller incisions and less trauma. Compared to the mastectomy, this promised to be a cakewalk.

My pre-op appointment at the hospital was scheduled for August 30, and I was squeaking in under the wire, managing to finish the antibiotics from my strep/upper respiratory infection marathon just in time for surgery. I learned that my surgery was technically a Robotic Hysterectomy with BSO, which stands for Bilateral Salpingo Oophorectomy, big words for removal of the ovaries and fallopian tubes.

The pre-surgery song and dance was the same this time, but at least we were preparing for a week or two of recovery rather than a month or two. My brother offered to come over at 5:30 a.m. the morning of the surgery so that the kids could sleep until a reasonable hour. I knew I could trust him to get the kids to school on time and in one piece, and that gave me a lot of comfort. Other than that, Mark figured he could handle all the school pickups and drop offs, as I expected to only spend one night in the hospital.

We prayed as a family the night before the surgery, and my sweet Ryan prayed that the robot wouldn’t malfunction. I couldn’t help but chuckle, but I agreed that a cooperative and obedient robot would be helpful.

The pre-surgery setup at Baylor was much more comfortable than the old hospital in Fort Worth. Mark and I got a big kick out of the paper hospital gown – it had its own HVAC system. There was a unit on the wall, connected to the gown with a tube that looked like a small piece of A/C duct work. You controlled the temperature with a remote, and air flowed in between the two layers of the gown. It was awesome. Unfortunately, the staff was very prompt, and I didn’t get to enjoy my personal climate control for long.

A blood vessel in my hand burst during the first attempt to put my IV in, making a big mess and running a nurse off. She declared herself a “one-trick pony” and went to find someone else. The next effort was successful, and once the IV was in and all the forms were signed, they put something in the IV to relax me. It did more than that, and I was asleep before I even left the pre-op room. Unlike my earlier surgery, I didn’t pray myself to sleep in the operating room, and I have no memory of saying goodbye to Mark. I suppose that’s a good thing as long as everything turns out well.

The recovery room experience wasn’t bad at all compared the mastectomy – mostly because my arms worked. I was in my room before I knew it, and my dad and brother were there to meet me. I remember shivering uncontrollably and trying to keep my teeth from chattering because it was about 65 degrees in there. Once that was fixed, I was comfortable and taking calls from clients like one of those horrible Wall Street heart attack patients you see in movies.

I had a great nurse named Toni, who thought it was funny that I was throwing around terms like “JP drain” and “sat monitor”. We exchanged war stories like hospital veterans. I had a catheter for the first 24 hours because of the risk of urological damage during the surgery, so I got some really good rest. When the catheter was out and I tried to get up, it took some thought to work out what body parts I could use and which ones I needed to be careful of, especially since I wasn’t in much pain. I had to keep reminding myself to use my arms; something about being back in a hospital bed on pain meds had me all confused. One thing was clear, though – my incisions were tiny. There were five of them, the largest of which went vertically through my belly button. It was about an inch long, and was the entry point for the camera. There were also two very small incisions around where my ovaries were, and another above and to the left of my belly button. They were glued closed with Dermabond, not stitches or staples, and it was amazing to think that they were big enough to accomplish anything.

Once Toni’s shift ended, I had a new nurse – young, pretty, with great curly black hair. I wish I could remember her name, but I didn’t write it down, and things that didn’t get written down got lost in the pain pill fog. She came in and out several times like nurses do, checking and adjusting things. After a few hours, however, she pulled up a chair next to my bed and just said, “WHY?” Over the next twenty minutes or so, I explained my family history, my genetic mutation, and all I knew about the pros and cons of prophylactic cancer surgery. She had so many questions, and was genuinely interested in understanding my choices. I think she began the conversation with doubts about my sanity, but hopefully I allayed some of them.

The hysterectomy was so easy compared to the mastectomy, and even compared to my two C-sections. Once the catheter came out, I was going to the bathroom without an escort (a nerve-wracking thing after passing out in the bathroom last time), walking laps, and ready to go home. The curly-haired nurse gave me my discharge instructions. She told me not to be deceived by the ease of the surgery. In her words, “the incisions are small, but it’s Spaghetti-O’s in there.” Looking back, I should have recognized that she wasn’t joking.

I was home from the hospital around lunchtime on Wednesday, armed with a pumpkin spice latte from Starbuck’s, but wearing my pajamas because my bag of clothes was lost somewhere at the hospital. I was bruised up, but pleasantly surprised that I could get up from the couch without help, and could take care of myself just fine. A friend had recently had a hysterectomy and said she never had to take a pain pill once she was home. Surely I could be that tough after what I’d already lived through, right?

That’s where I got into trouble – it was too easy, and I was too confident.

I took it easy for a few days, but Sunday was coming. It was the official beginning of a new schedule at church. The worship services were being divided into contemporary and traditional, and decision that had been hard fought and a long time coming. I was determined to be in church that Sunday. It was hard to find clothes that didn’t either hurt my chest or my abdomen. I put bandaids over the five small incisions in my abdomen so that my clothes wouldn’t irritate them. The belly button incision was burning and hurting, but I figured I could handle it. I was a surgery veteran, after all, and this was nothing compared to a double mastectomy.

About ten minutes into the worship service, I felt myself swaying. My vision went black for a second, and I knew I had made a mistake. I sat down, wishing I was home on the heating pad in my designated spot on the couch. I survived the service, but couldn’t go home because we had all come in the same car and Mark had Sunday School teaching duties. He might have found a sub, but we were also supposed to go to my brother and sister-in-law’s house after church for my dad’s 76th birthday lunch. I was in it for the long haul, ready or not.

I managed to get upstairs after the service (thank goodness for elevators), but then I had a packed hallway to face. I was completely panicked, unable to protect myself from the press of people. One of my preschoolers ran up to give me a hug, her head hitting me directly in the abdomen. I realized that I had no business being out of the house, but it was too late to retreat. I made it to my Sunday School room, dropped into a chair, and someone mercifully brought me a cup of coffee.

After church, we went to Dad’s birthday lunch, and I stayed upright long enough to eat. Afterward, I found a recliner, collapsed, and didn’t move until it was time to go home. When I got home, I cancelled all my clients for the next three days, sank into the couch, and didn’t move unless absolutely necessary until Wednesday, when I managed to get myself to preschool choir and go through the motions of teaching (probably also too soon). Lesson (partially) learned.

There was another consequence of my adventure. After I got home from church, I tried to remove the Band-Aids I had put on to protect my incisions. Unfortunately, a bunch of Dermabond came off with the Band-Aids, taking a lot of my protection with it. At baseball practice a couple of nights later, I looked down to see blood seeping through my pants where I had popped open one of the small lower incisions. Dr Allen had to close it back up with steri-strips. Another lesson learned the hard way – add it to the list.

My only concern for the moment was the incisions, but there was other healing that had to occur, and it wasn’t happening on its own. I won’t go into details, but Dr. Allen had to remove some scar tissue that formed in an unfortunate place after several weeks. At that point, it became necessary to use estrogen cream every night for four weeks, which was, in a word, gross. Eventually, we resorted to an estrogen patch temporarily in hopes that the internal sutures would heal more quickly. When all was said and done, I wasn’t released for normal activity until November 14. By the time I had fully recovered from this surgery, I’d already had another one.

The Crazy Lady had said that estrogen replacement was out of the question because of its contribution to breast cancer risk, so I was apprehensive about even using the cream. Dr. Allen contacted my new oncologist, Dr. Young, to ask about prescribing a very low-dose estrogen patch long-term to alleviate the menopausal symptoms that I was already experiencing (mainly night sweats and hot flashes). Dr. Young gave her consent, stating that because I had already taken my breast cancer risk from 87% down to around 1% with preventative measures, I could afford a little estrogen to improve my quality of life.

This one thing eased my mind considerably, as most of the fears The Crazy Lady had shoved so forcibly into my mind were related to life after a hysterectomy without the benefits of estrogen replacement. Dr. Young was, in many ways, God’s mechanism of redemption for me, even though I didn’t know redemption was what I needed. I had cried so many tears in fear after that first oncology appointment, and didn’t even know what to pray for. God understood what I needed and provided it. The Crazy Lady terrified me, but Dr. Young replaced those fears with hope.

By the time I recovered from the hysterectomy, I was getting very frustrated with what I viewed as useless lying around. The house was slowly turning into a pigsty, I hadn’t cooked in weeks, and I had done absolutely no birthday party preparation for either of my kids. Surgery #4 was looming in two weeks. I wanted it all to be over so that I could be a productive human being again.

On September 19, 2012, I got a clear pathology report from the hysterectomy. I breathed a huge sigh of relief and got to work planning my son’s birthday party. One of my sweet friends offered to have someone come clean my house around this time, but I declined. It was tough to get it all done in my slow-moving state, but I needed to do it, and in doing so prove to myself that I was still the same person I was in April before all of this started. I needed to know that behind all the scars and under all the bandages, I was still ME.