Treasures Gleaned

I knew very little about mastectomies and reconstructions before January, but have gained quite the education (as every breast cancer patient does).  I am very thankful for our team of physicians and patients who have gone before me; they answered many of our questions and made the decision-making significantly easier.

The Mastectomy

During the discovery phase of being diagnosed, almost every physician we consulted with agreed that I would need a mastectomy on my left side due to the size of the tumor. We hoped it would shrink through chemo (which it did).  And my oncologist even floated the possibility in May that I might be a candidate for a lumpectomy due to how dramatic my response to chemo had been.

Decision #1: Should I have a lumpectomy or a mastectomy on my left side where the cancer was present?

Decision #2: Should I have a mastectomy on my right side where no cancer was found?

The goal of a lumpectomy is to remove the “tumor bed”, scar tissue, and any disease still present in a patient, and to acquire a certain amount of “clean margins” around the diseased tissue to ensure the cancer has been removed from the breast.  A mastectomy removes all breast tissue.

When faced with the above decisions several months ago, one statistic made these decisions easy for me.  I asked each of my physicians (and the physicians we got a second opinion from) what was the chance of having cancer on my right (non-cancer) side?  The answers were varied, but two physicians told me it was 0.7% per year or approximately 35% over fifty years.  I am planning to live at least that long!  So the decisions were simple for me.  As a young mother of four little ones, a 35% chance of another bout with cancer on my right side felt far too risky.  Having a prophylactic mastectomy on my right (non-cancer) side brings my lifetime risk to 2%.  I’ll take that.

Decision #3: Skin-sparing or nipple-sparing mastectomy?

In a mastectomy, an incision on the breast is made, and the surgeon removes all possible breast tissue that he or she can access.  The patient’s skin is left intact the majority of the time, and becomes the “envelope” for the implant or tissue during reconstruction.

I had never heard of a nipple-sparing mastectomy before, although the name explains everything.  The pro is that the end result after reconstruction looks like you!  The con is that by choosing to leave additional breast tissue (the nipple), the lifetime risk of a new cancer increases slightly (from 2% to 3-4%).

The location of a patient’s tumor (or a patient’s anatomy) can make this decision for her.  My physician did an excellent job of explaining the risks / benefits to me.  Some women are candidates for a nipple-sparing mastectomy.  Others are better served to do a skin-sparing mastectomy.

Most Reconstructions

The mastectomy is done by a breast surgeon; the reconstruction is done by a plastic surgeon.  From talking to the physicians I have consulted with, it seems the most common method of reconstruction is a combined surgery: the breast surgeon does the mastectomy first, and then the plastic surgeon does phase 1 of the reconstruction in the same surgery.

Phase 1 of most reconstructions is placing a “spacer” behind the pectoralis muscle.  I’ve heard the spacer is like a flat balloon.  The patient then has several follow-up visits to the plastic surgeon’s office to inflate the spacer by adding saline to it.  Skin can stretch indefinitely, which is interesting.  So a woman doing this method of reconstruction can choose what size she wants to be.  The plastic surgeon inflates the spacer accordingly.  And then depending on whether she will receive radiation or not, at some point down the road, the patient will have a second surgery with only the plastic surgeon to remove the spacer and place the final implant.

The Zenn Delay Reconstruction

The reconstruction I did was pioneered by Dr. Michael Zenn, who spent the majority of his career at Duke University, before beginning his own practice, Zenn Plastic Surgery.

Since I will receive radiation after surgery, I was told that radiated skin feels somewhat “plastic” and is more difficult to work with during the reconstruction.  One plastic surgeon (Dr. Richard Carlino), who came with the highest recommendations and I fully trusted, told me he likes to wait about a year after radiation ends before proceeding with Phase 2 of the reconstruction (the surgery where the spacer is removed and the implant is placed).

Dr. Zenn’s approach is simply to do the full reconstruction before radiation.  He believes it is advantageous to wait at least 1-2 weeks after the mastectomy to allow the skin to recover, but then its safe proceed with the full reconstruction.

Several things appealed to me about his approach:

• The opportunity to do all the surgeries “together” (9 days apart).  Hopefully, I can spend one month recovering from two surgeries instead of recovering from them one at a time.  Precious time I can spend with my family instead of being down.
• Instead of having a spacer put under my pectoralis muscle, I “skipped” that step.  During the mastectomy, the breast tissue was removed.  During my reconstruction, an implant was placed under my skin (on top of the pectoralis muscle).  It sounded less painful / less invasive to me.
• I have no guarantees of what will happen to my skin after radiation.  Certainly, the skin texture could change, messing with the reconstruction, and requiring an additional surgery to tweak.  Since I underwent reconstruction before radiation, Dr. Zenn was able to do an excellent job.  We are praying one surgery will be all that’s needed.  Reconstructions done the traditional way have a 1/3 “failure rate” (where another surgery is required).  So either way, I may or may not need additional surgeries.

I am so thankful to be done with both surgeries, and we are grateful for your prayers and support through this time!  I should have the drains removed this week, and then may have another three weeks or so with limited mobility.  We’ll see!

 

 

This morning, I am having my full reconstruction done.  The case should last about 2 or 2 1/2 hours, and I’ll be home by this evening.

It is interesting to be on the other side, and experience what Gabe’s cataract and glaucoma patients do each Monday before he operates.  No eating or drinking after midnight.  Prep things to do before surgery.  Items to bring to the hospital.  Waking up early.  Lots of questions and repeat questions at the hospital.  Blood-work. Urine samples (each time I do one, I praise God for the gift of being free to fight…it takes me back to the gratefulness I felt last January when diagnosed).

The doctor has already been in to see me.  I’m outfitted in my surgical gown and cap.  The anesthesia team has been by.  I am  a few minutes from going back to the OR.  And then I’ll be done with surgery!

I’ve heard this can be a more painful surgery than the mastectomy.  But the mastectomy was better than I’d hoped.  Thank you for praying the pain will be manageable, and the healing smooth!  I am eager to be on the other side.

It is wonderful to have one surgery behind us.  I have my second surgery (the full reconstruction) next Thursday, June 28^th.  But this week has largely been what I hoped post-surgery would be: pain under control.  I’ve actually been much more mobile than I thought I would be, which is nice.  I’ve focused my full attention on sleeping, eating well, and moving about so I can be as ready as possible for next week’s surgery.  And then I’ll be done with surgery!

During the mastectomy, the surgeon first took out my three sentinel lymph nodes (the first lymph nodes the breast drains into), and sent them to the pathologist  She then performed the double mastectomy while awaiting results from the pathologist.  My oncologist explained that during this “initial pathology”, the lymph nodes is cut in half like a sandwich roll.  They look at both halves to see if they see cancer.  During mine, they did not see any cancer,  so the surgeon left the rest of my lymph nodes intact.  Praise God.

My oncologist then explained that during final pathology, which takes a few days, very thin slices of the lymph nodes would be examined for cancer cells so they could determine if there was any cancer present.  None of my three lymph nodes showed any disease from examining these “slices”.  The hospital where I was goes one step further than most hospitals, and stains each slice with an antibody stain that shows clumps of cancer cells.  One of the three lymph nodes did show very small amounts of cancer cells under this antibody stain.  Interestingly enough, I am still considered “lymph node negative” which is excellent news.  Obviously, that lymph node (which showed a trace amount of cancer) is now gone, and if any others have the same small amount of cells, that is for radiation to “clean up”.  My oncologist believes all other lymph nodes are likely clear of cancer.

We also learned from the final pathology that the “tumor bed” / scar tissue area measured about 4.5 cm.  In that area, they found a very small amount of disease measuring about 2.5 mm (about the thickness of an American quarter).  The surgeon commented that if we’d had another week for the chemo to work, it likely could have melted away as well.  We are thrilled with this!  I am considered an “almost total responder” to the chemo.

Abby, Will, and Nate are enjoying a vacation to Charlotte with my parents, who are most certainly NOT on vacation caring for three little ones!  Abby and Will both did a week of camp at my alma mater (Charlotte Christian).  Abby’s was an American Girl doll camp, where they generously gifted her with her first American girl doll. Will did a soccer camp.  They will be gone for the next few weeks while I do more surgery, and then begin to heal.

As for my care team, I am completely spoiled.  Gabe is ever the excellent doctor, and is such an attentive husband during this time.  My sister Autumn (a nurse) has come and gone this week, as she decided I needed my own personal nurse.  Gabe’s sister, Anita, and her husband Allen arrived this evening and will be here the next few days.  Anita is a rehab doctor!  We have the sweetest little baby (Kai) who is here to bring healing through joy and giggles.  And my mother-in-law (an occupational therapist) has been so faithful to serve us for so many months.  She has done extensive research on healing up from surgery, and is my director of healing this month!  We continue to be so grateful for your faithful prayers for us, and most especially, for our good Father who answers each one.

Today is surgery day.  It was a busy morning of testing, questions, etc. but now we are waiting for my 12:50 start time.  I should be going back any time now.

I’ll have a double mastectomy, and a “sentinel node biopsy” where my surgeon (Dr. Nancy Crowley) will remove a few lymph nodes and send them to pathology during the surgery.  The pathologist will tell her if there is any cancer present in the lymph nodes from the initial look.  If so, Dr. Crowley will remove all the lymph nodes under my arm.  Of course, we are praying all is clear and that will not be needed!

The case should take about 3 hours, and then I’ll be in recovery for about an hour before being checked into a room.  I’ll stay one night, and be up and moving around this evening.

Thank you for praying for us!  We have been so thankful for you standing with us.  On this day especially, it is precious to me that God is ever-present with us.  He will be in the operating room.  He will bring healing from the cancer through this surgery, and He will bring healing from the surgery in the days to come.  He is a good, good Father.

Round #6 was pretty easy on me, except for the “bone pain” that would not seem to go away.  It nagged and lingered, and my energy took quite a bit longer to return.  It makes sense.  Chemo is cumulative.  How thankful I am that it is over.

On the calendar, Will’s 4^th birthday coincided almost perfectly with my “good recovery period” after chemo #6.  (If only my body had cooperated and actually bounced back “on schedule”!).  So we planned a little get-away to Charlotte to celebrate and spend time with family and friends.  It was really a special, special weekend.

Wednesday: Will’s birthday.  A good friend of ours here in Raleigh is a real “Fighter-Fighter” (ie. Fire Fighter) and gave us the grand tour of his fire station.  The kids have talked about this DAILY since, and unequivocally, it was the highlight of the day.  We then took the two older kids on a train ride to Charlotte, where we met up with my parents and Nate & Kai.  It was so precious to hear their questions about the train!  And Will has proudly told many folks about our riding a “real passenger train” since then.

Thursday: Carowinds.  Oh my goodness, what a ball we had.  The pictures say it all.

Friday: Lake Day.  Greg’s parents, Bill & Debbie Lineberger, were exceptionally gracious hosts to six adults, ten children, two birthday cakes, and all the excitement that comes with celebrating life and little boy birthdays.  It was an unforgettable, absolutely perfect day.

Saturday: I had the pleasure of hosting a baby shower for my sister Autumn, who is welcoming a baby boy in September (after having 5 beautiful daughters).  But many of the ladies are family friends of both of ours for so many years.  The shower ended by all the ladies praying over both of us, and for my healing.  What a precious time.

Saturday evening was a “family night” and such a fun one!  Cousins, dear friends Sandy and Todd (adopted family!) and kids running about.  BBQ and Monopoloy with my nephew Gabe.  Why does the evening have to end?

What a special, life-giving break in the middle of a tough marathon.  Now it’s time for surgery and radiation.

 

A little over two weeks ago, my big sister Jill was holding an avocado in her left hand as she prepared dinner.  As she used her right hand to cut the avocado, the knife missed and cut her thumb instead.  And it was a very deep cut.  She severed a tendon in her left thumb, and exactly two weeks ago today underwent an operation by a hand surgeon to repair it.

Evidently, a tendon is like a rubber band, and when severed can stay close together or snap far apart (requiring the hand surgeon to make a big incision to retrieve it.  We praise God her surgery went as well as it could!  The tendon was close together and the surgeon repaired it easily.  It was quite the surgery.  Six or 7 stitches on the tendon, another 7 or 8 on the tendon sheathing, and I believe 17 on the outside of her thumb to close it up.  She was in quite a bit of pain for the first few days.  Her sweet husband Brett woke her every four hours for medication to stay on top of the pain.

Here was the sobering part of the conversation with the surgeon.  The thumb must be exercised quite often each day to work on mobility, but the tendon is especially weak from week 2 until 4 post-operatively.  The surgeon told her that even if she does everything as instructed, there is a risk that the tendon could snap again and she’ll land back in the operating room.  It is already a pretty intensive 12 week recovery as is!  Tough for a mama of 7 beautiful kids.

Today begins the start of the two week “high risk” period for it re-snapping.  Please join us in praying it will not!  And for daily grace for she, Brett, and their kids during this difficult three months recovery where she is one-handed.  They have no family close, so Brett and the older kids are picking up the things she can’t do.  And it is a lot.

We would so appreciate you praying for our parents too as they are in the trenches with us!

• Mom Chong’s knee
• A sweet time of rest for she and Dad Chong with Anita & Allen (Gabe’s sister) in Chicago this week
• Dad Page’s knee
• Continued healing for Mom Page (she was quite sick two weeks ago with what doctors think may have been viral bronchitis)
• Safe driving for Autumn & Greg’s family (my younger sister) as they drive the 24 hours back from visiting Jill & Brett’s family in CO

 

Just so you know, when Jill went to the ER, the doctors told her the three most common hand injuries are from avocados, bagels, and wine glasses.

Avocados: exactly like she cut herself.  So use an avocado tool, butter knife, or make sure to put it on the cutting board!

Bagels: folks using a sharp knife to slice it while holding it.  Do yourself a favor and put it on the cutting board!

Wine glasses: when she said this one, I didn’t even know what she was talking about.  The doctors told her that when people are washing wine glasses by hand, they can break and the force of your hand washing the glass can cause the bad cut.  (not sure how to avoid this one except use less pressure when washing!).

I realized I often cut an orange while holding it in my hand.  No more!  I’m being pretty disciplined to break out the cutting board these days.

Picking up where I left off on the May 2^nd post, the recovery weeks for round #5 were pretty tough.  Round 4, 5, and 6 brought a new side effect: a “taste change”.  Thankfully, it hasn’t lasted more than about a week, but when it is present, all food tastes “ruined.”  Actually, the first time I experienced it, I was making homemade hummus.  I could not figure out what I’d done to so completely mess up the recipe!  It tasted AWFUL.  The next thing I ate was a bagel with cream cheese.  When that also tasted disgusting, I put two-and-two together.  It was a side effect!  I am so thankful it does not last long.  It makes it very difficult to eat.

I had very little energy through round 5, which is tough as a mama.  I always want to “be there” for the kids, but I spent very little time with them during the round 5 weeks.  Thankfully, I bounced back and was present for the good week.  It was just in time: my mom got pretty sick, and went to Charlotte to recover.  Dad Chong was our hero and came within days to switch out with her.  He stayed for a week, and was a tremendous help.  The kids loved being with Yeh-Yeh!

My dear friends Sarah and Kirstin also came for a few days, and it was such medicine to my heart.  Good friendships are like that!  We had a precious time catching up, spending time together, being with the kids, watching the Royal Wedding.  It was very special.

When I went in for my 6^th and “final” chemo round last Monday, my doctor said he could not even feel a lump.  He said there was some dense tissue, but if I’d come in to see him, and he had done that physical exam, he would have followed up with me in a few months (ie. no big red flags).  Praise God!  He also told me some pretty exciting news.  If, when I have surgery on June 19^th, there is no cancer in my lymph nodes or breast (there is a complete “pathological response” to the chemo), then I have a greater than 90% chance of not having a reoccurrence of this cancer.  Music to my ears!

Please join us as we pray persistently, boldly, and trustingly to our good, good Father.  We are asking for a “perfect report card” on the day of surgery.  A complete pathological response to the chemo.  That every cancer cell has been destroyed, and would never return.

As for Round #6, it began as one of the smoother weeks!  I am so thankful.  After Rounds 4 and 5, I honestly did not expect this.  It has been a precious gift.  There have been a few bumps in the road.  I came down with a sinus infection a few days ago, and am starting on an antibiotic today.  But, I am so close to being able to climb out for what I hope is the last time.  A few days from now, the first weekend of June, is when I reasonably should begin feeling better and then I begin “climbing out”.  Gaining more and more energy.  The side effects heal up.  I am given the gift of normalcy once again.  Thank you for journeying with us and petitioning our powerful God on our behalf.  It means everything to us.

The good week did not end quite as expected.  My dear friend Jennifer Yin came from Atlanta for a visit on Thursday; and Friday, I came down with an upper respiratory infection complete with fever.  I felt extremely puny and sick, but the fever was the “scary” part.  If it spiked too high, I wondered if I’d end up in the hospital.  Would I be able to do chemo on Monday as planned?  The hours went slowly as we waited to see what recovery would look like.  I prayed this would be yet another “blip” to look back on…and, Praise God, it was.

Jennifer served our family so selflessly: playing with our kids, cooking, cleaning, encouraging, and cheering up our family, putting kids to bed.  God had her here for literally the sickness.  Autumn and Greg’s family (my sister and her husband) were already scheduled to be in town on Saturday and Sunday, and picked up where Jennifer left off.  We had a special time with them and two of their girls, as we watched church online, rested, celebrated my niece’s 14^th birthday and her History Day accomplishments.  And God brought the healing we asked for.  My fever left Sunday, and my bloodwork was fine on Monday to do chemo.  I’ve never been so thankful to be sitting in the chemo chair.

The visits were not over: I returned from chemo to find my older sister Jill (who lives in Colorado Springs)!  She and my precious husband conspired to fly her in for 24 hours, since she’s in Memphis for the week and “felt so close” to NC.  It was the best dose of medicine for my heart!

Even as I begin the dive back into the dark valley of chemo effects, and the unknowns it inevitably brings, I am full of thanks.  I am humbled by those loved ones who have served us this weekend in our need (Jennifer, Greg & Autumn, Stephanie Schouten, Jill).  I am in awe of a God who loves us so personally that He carries us through these difficult seasons…and brings healing on the other side.  I am thankful for the chemo that God is using to bring healing to my body.  I am encouraged there are only two more “bad weeks” and one more infusion to go.

Thank you for continuing to pray for us and battle with us during this season!

I’m in the good week of round 4.  Oh, I love the good week!  The nausea turns off (for the most part), many of the side effects of chemo “heal up”, and I have a break before the next round begins.  This is the first time I’ve felt close to the end.  For some reason, Round 4 still felt like the “middle”.  Round 5 feels like it’s close to the end.  I can see the light.

I am also beginning to feel the cumulative effects of the chemo.  When the good week began over the weekend, the weather was perfect and I was ready to get out of the house!  Gabe and I headed to the Raleigh Greenway behind the Art Museum on Friday for a date, and enjoyed a walk for miles.  It felt great to be active.  We had such a special time, we took Abby and Will the next day.  They happily skipped ahead of us and enjoyed the “forest”, the caterpillars, the pedestrian bridge.  It was magical.  So magical that we stayed for hours, and made it back just in time for church at Summit Blue Ridge campus.  That is the one highlight of every week.  Regardless of good week / bad week, I never want to miss!  It is truth and encouragement straight to our souls.

Sunday dawned equally beautiful, and I couldn’t resist heading back to the Greenway with the whole family (you’ll see all of us in the picture except for my Mom, who took the picture).  We walked for miles once again, but with pushing strollers, it was much more strenuous than the days before.

Yesterday, I paid for it.  The day was full of nausea (similar to chemo weeks), and I began to appreciate the cumulative effects of the chemo.  My body revolted, and said “enough”.  I listened (it’s hard not to!), and slept much more.  Today has been good, but full of rest.  I’ll try to strike a bit more of a balance in the days and weeks to come.  Only rounds 5 and 6 to go.

I was discouraged yesterday.  The body is not cooperating!  I feel weaker and “sicker” than I ever have in my life.  Today, God gave me a sweet revelation that was such a dose of hope.  It was exactly what I needed to keep on walking through the marathon of treatment, as I’m quite early in the overall journey.  It was this:

The CHEMO that is making me WELL is what is making me feel this way, not the CANCER.

It seems so obvious when I write it.  I’ve known it in my head for months.  But it dropped a little deeper in my soul this afternoon, and was the hope I needed to combat the fear that would love to creep in.  God’s truth is precious.  Fear is a liar, and is only crippling.  It has no beneficial purposes.

I’m not only new to blogging, I’m quite new to blogs.  So this will be extremely obvious to some of you, but was a “ah ha” to me when a good friend told me (thank you, Brett Ray!).

If you’d like to receive an email each time I write a new post (saves you from checking back for updates!), all you have to do is “follow” the blog.  There is a button in the right-hand margin that says “Follow”.  It is under a heading that says quite appropriately “Follow blog via email”.  If you click on the “Follow” button and enter your email, WordPress will send you an email to verify that you’d like to follow this blog.  Once you’ve verified in that email that you would like to follow the blog, you will get an email each time I’ve written a new post.  How simple!