Back to the routine

It’s hard to believe that two weeks ago I took my Sunday morning walk, believing it would be the last neighborhood walk for quite a while.

And yet here I am today able to do my usual route once again and praising God for a recovery that has been easier than anticipated.

This journey is far from over, but I am thankful for moments like this when I can see the goodness of God.

Now I will build an altar
And stack it stone by stone
'Cause every Ebenezer says I've never been alone
My faith will surely falter
But that don't change what You've done
'Cause every Ebenezer points to where my help comes from
Oh, every Ebenezer points to where my help comes from.

— Just as Good, Chris Renzema (featuring Ellie Holcomb)

Not what we were expecting

I had two CT scans and a PET scan prior to last week’s surgery, so we were fairly confident about the extent of the cancer’s spread and what was needed in order to remove that. As you know from previous posts, surgery went really well, and my recovery has been far easier than expected.

This week I received the pathology report. Overall, sections A - D of the report were positive - either noting absence of malignancy in the sample taken or noting successful excision.

However, the report did note two additional GCT tumors that were not defined by scans, and, unfortunately, it also included the following information regarding the left anterior abdominal wall resection:

This information is concerning and will likely result in difficult decisions in the near future.

Dr. Rossi has asked that my case be presented at a Monday morning conference. Once the team talks about my surgery and pathology, they will contact me regarding recommendations for a plan to go forward.

This morning my thoughts are set on Psalm 90:12, and I ask that you pray that we may have wisdom in deciding how to approach this new hurdle.

“So teach us to number our days, that we may present to You a heart of wisdom.”

— Psalm 90:12

Thank you for showing up

It would be impossible to enumerate all of the acts of kindness and love you have expressed in recent days. I am incredibly grateful and overwhelmed.

I have seen many of you living out the truth of I Corinthians 12:28.

“And in the church God has appointed first of all apostles, second prophets, third teachers, then workers of miracles, and those with gifts of healing, helping, administration, and various tongues.”

Thank you for using your various gifts to invest in my life. I feel so loved.

We made it through the weekend

Being home is a little different than being in the hospital, and it has its own set of challenges. For example, as disruptive as it was to have someone checking on me every two hours through the night in the hospital, here at home I still needed Rick (and now my brother) to wake me up to take meds at the prescribed times.

Speaking of meds, we added a new one to the list over the weekend as it seems I have an infection. My neighbor, Rebekah, has been great in helping us keep things on schedule, including the daily injection of Lovenox.

We also learned that getting out of a regular bed after abdominal surgery is no joke, so now I am sleeping on a couch in the living room. Rick and Addison brought it down from upstairs for me on Saturday.

Speaking of Saturday, Steeve had the idea to have a video call with some of the community children before English class, and that made my day to see all of them and hear their voices.

The rest of the weekend was filled with watching The Bridge on-line, short walks in the neighborhood, time with some of my favorite people, and other small pleasures.

My belly is healing nicely, I think. I’ve decided to take photos each day so I can see the progress. This was Sunday. We can see my belly button distinctly again as the swelling continues to go down.

Visitors are wonderful. Feel free to stop by and visit this week. I’d love to see you!

It’s Friday, and we're home

I said goodbye to Room 6309 at the Duke University Hospital around 3 pm yesterday and transitioned to our Airbnb.

It was good to have a night to rest before making the drive back to Wilmington this morning.

My belly is really sore today, and nausea has been my constant companion since last night. But we’re back in Wilmington and looking forward to some R & R this weekend.

Some flowers from The Bridge were waiting when we arrived, as well as packages and cards from friends!

This afternoon I plan to take it easy here at home and enjoy my latest obsession - a Detox Island Green from Tropical Smoothie.

Thanks for praying, Friends!

A quick Thursday update

Wednesday went by quickly as I had several visitors and different teams were checking in on me every couple of hours.

I was able to get up and walk laps around my floor. There’s a board where we’re to keep track of our laps. I ended up at 3 miles at the end of the day. I’m room 6309. (Yes, I am bragging.)

Ethan has been a great help to me, even staying overnight. It’s been good having him here and seeing him put his professional skills into action on a personal level (and he really likes this blanket Elizabeth gave me).

Yesterday afternoon, however, we noticed I was experiencing some sort of allergic reaction (probably due to the epidural), so that was suspended, and I’ve only had Tylenol and Motrin since then.

My battle scars are substantial, but I am proud of them because they mean Dr. Rossi was able to do what she needed to do, and I came out on the other side.

I am hoping to be discharged later today (or at the latest, tomorrow), and I look forward to a clear plan going forward that includes healing and health.

I truly appreciate all of care and support that has come from so many of you. Thank you for being on my team during this unusual season.

Above all that we could have asked or imagined

It wasn’t the worst case scenario. It wasn’t the best case scenario, either. It wasn’t even somewhere in the middle. It was even better than we asked or imagined.

We arrived at the hospital a little before 5 a.m., and I was absolutely miserable. I had become dehydrated by the bowel prep, and this was causing extreme nausea and fatigue. So when I was called back to the pre-op prep area, I was relieved.

My new friend I met on the phone yesterday stopped by, as well as Dr. Rossi and other members of the surgical team. Every caregiver was so kind and compassionate.

The patient care here at Duke is phenomenal. One guy on the anesthesiology team was even showing me photos of his dog and chatting with me while another physician was doing my epidural in the OR.

I entered the OR at 7:27 a.m., and the surgery started at 8:50. The procedure was complete, and I was ready for visitors by 10:12 a.m. This was much shorter than the time originally estimated!

The shortened time under anesthesia resulted in a fairly quick stay in the recovery unit, and I felt aware of my surroundings and confident in my ability to communicate almost immediately. My first questions:

Do I have a bag?

Did she have to breach the abdominal wall to remove the tumors in the subcutaneous tissue?

The answers to both questions was “no!”

Further, Dr. Rossi decided not to do a hysterectomy, and there was no need to resection the bowel (that tumor was incredibly easy to remove!) so I came away from the procedure with a less invasive procedure than I had anticipated.

It looks like I’ll be here at Duke through Friday. I’ve yet to get out of bed. (That’s a goal for tomorrow!) I still have an epidural administering pain meds. (I’m not complaining!) And I have a great volunteer nurse. (Ethan is the best human!)

Tonight Ephesians 3:20-21 is on my mind:

“Now all glory to God, who is able, through his mighty power at work within us, to accomplish infinitely more than we might ask or think. Glory to him in the church and in Christ Jesus through all generations forever and ever! Amen.”

The last 24 hours

To those of you who have called, texted, and showed compassion in so many different ways, thank you.

I’ve spent today walking and following the dreaded clear liquid diet - which hasn’t been nearly as bad as I anticipated.

Surgery is scheduled for tomorrow at 7:10 a.m.

Looking forward to sharing positive news as I feel able!

God is in the details

A few minutes ago, a lady from Duke Hospital called to let me know my surgery time is 7:10 a.m. and that I should arrive at 5:10 a.m.

She gave me a series of clear instructions and concluded with “Do you have any questions?”

I replied, “May I ask you a personal question? What is the country of your birth?”

Her reply, “Haiti.”

We chatted back and forth in Haitian Creole, and I told her she was part of my story now - a story only God could write.

She went silent. I was afraid I had offended her until she said, “Ou fè m kriye.” (You made me cry.)

I had tears in my eyes, too.

Sunrise on a Sunday morning

I love my early morning walks here in our neighborhood. This is the last one for a while as we leave for Durham later today in order to prepare for my surgery at Duke on Tuesday.

This morning was quite ordinary - listening to Russell Moore’s podcast, then worship music.

The future is so uncertain, but I will heed this solid advice I've received:

Don't look left. Don't look right. Look straight ahead, and follow Jesus.

Amen.

Counting down the days

I’m hopeful that by this time next week surgery will be over, and I will be in the beginning hours of the healing process.

I’m hoping to fill these next few days of waiting for the big day by marking things off my “to do list” and spending time with friends.

Today was one of those day when encouragement came from many directions, including a Chick-fil-A breakfast with a friend, a surprise in the mail (a devotional book I’ve been wanting), a phone call from someone who’s been through a similar procedure, a visit from a sweet friend bearing flowers, and a little blue duck left on my Jeep.

Because He is faithful

Yesterday was insane. I was having a bad day emotionally. Panic, anxiety… they were rising in me, engulfing me. And then… my phone started to blow up. Person after person. Calls. Texts. Even in-person visits. It was incredible.

And then today… nothing. Nothing. But I don't need it today.

However, yesterday, when I needed it, God sent me so much encouragement. I was blown away.

This journey. It’s more than I could have imagined.

His mercies truly are new every morning

I’m thankful I had certain morning habits in place before my most recent diagnosis.

It’s an interesting thing indeed to be faced with your own mortality when outwardly you look just fine and unless you tell people, no one knows you’re sick. In some ways I feel as if I am being given a gift. I have time to reflect, to think about the “what ifs” and the “what could have beens” and put them in their places. I get to decide how they will define me today and how they will define me in the future.

It’s heavy right now. I walk every morning for one hour. It’s one of those morning habits for which I am so thankful. This morning as I walk, I hear the birds chirping, and I ask myself, “Will I be able to do this in six months? In a year? Will I be here to do this in 5 years? Will I even be here at all 10 years from now?”

So many questions. So few answers. And yet, on this beautiful spring morning, I will continue to choose to embrace these lyrics, “I believe that I will see the goodness of the Lord. I’m confident as seasons change Your faithfulness remains.”

What's helpful … and what's not

A few friends have asked me “what’s helpful and what’s not?” right now. I want to start out by saying everyone is different and responds differently to things, but after speaking with a number of other ladies, here are a few things that are helpful - and a few that are not - to us.

1. Surprises without expectations. Gifts are not usually something that speak to my heart, but recently unexpected surprises in the mail and on the front porch have been encouraging. Opening the door and finding something on the doorstep - something that was left without the doorbell ever ringing - those surprises truly mean something to me because there have been a few days I don’t know if I would have opened the door had the bell rang.

From a friend on her own journey with cancer:

“Offer to take your friend to chemo, or go with her to a doctor's appointment.

Have a girls’ day out where you go to the beach /lake together or go out to eat. Send a care package.

One of my best friends sent me a blanket, ginger chews, and a salt lamp. It was so caring and thoughtful.”

2. Words of encouragement. April sent this message to me recently, and it’s one I’ve saved and will go back to repeatedly.

Sometimes when our physical strength wains, all we have is our mental strength. Know that, whatever comes your way, you have the mental strength and the tenacity to keep going.

The three simple yet profound words my family keep saying to me as I was battling cancer was, “You got this!”

Becky, I know you got this! Keep putting one foot in front of the other. Do the next thing that you have to do and think of only that, until it’s time to do what comes after that.

I will keep you in my thoughts and prayers. 🙏

3. Companionship. Lunch dates and walks around the park are wonderful distractions as I wait for my surgery date.

4. Suggestions of what you want to do to help versus “let me know if I can help sometime” are helpful. For example, Joyce said:

I would love for someone to say, “Is it okay if I bring you dinner on Friday night?” instead of saying, “Let me know if I can bring you dinner one day.” I might never take you up on a general offer, but when you ask me about a specific date, that helps me focus and decide on a time that works.

5. Listening is always appreciated. Unsolicited advice and suggestions … not so much. Questions can feel overwhelming at times, but thoughtful questions are encouraging. Please be satisfied with what I am willing to share with you instead of pressing me for more information. From a friend:

“Listening and humor. These are two things that really help me.”

Lilli said:

“I need someone to talk to who understands some basic information about the type of cancer I have, who cares about what I am going through, and will listen to the fears I can’t share with my family.”

6. Understanding that each cancer and each person's experience are different. In one of the groups where I am a member, Hannah shared:

“I wish people would Google GCT and understand its uniqueness instead of comparing my illness to someone else’s. I’m not your mom or your aunt, and my situation is different.”

7. Assume that I have done my research, lived a healthy lifestyle, and made smart choices instead of asking if I have 1) taken this or that supplement, 2) used this essential oil, or 3) eaten this particular diet. From another patient:

“I didn’t do anything to bring this one myself. I didn’t miss doing anything, either. According to my doctor, this is genetic, it’s luck of the draw. It hurts when friends ask me if I did or didn’t do something in the past . . . or tell me by taking a certain vitamin I can be healthy in the future. It’s not that simple. Can you change the color of your eyes by rubbing an essential oil on your eyelids?”

8. Texts that aren’t trite or overly spiritualized are encouraging.

One of my favorite texts from a friend:

“Had you on my mind this morning. No verses or scriptures. Just wanted you to know I was thinking and praying about you in my quiet time.”

9. Finally, don’t let the above make you afraid to reach out. According to Anna,

”Just check in. Say hi. Text. Call. Write. Whatever you can do. I found some people were scared they didn’t know what to say or how to say it, and so they didn’t say anything. Some just disappeared from my life during my cancer treatments at the time I needed support most, and that was sad to me.”

I agree with Anna.

Friends, more than anything it doesn’t matter what you do or say when it comes from a heart of love. What matters is that you show up, that you care, that you understand that you truly can’t understand, but, please, don’t let that stop you from trying.

A recent lunch date with friends encouraged me greatly.

This is actually happening

My appointment at the Duke Cancer Center yesterday went as well as I could have possibly expected. I walked away with a firm plan, as well as confidence in the surgeon who will operate on me May 2.

I consented to a much larger surgery than originally anticipated, but the surgeon’s reasoning lines up with my goals for the future. I am at peace with the following:

• Exploratory laparotomy

• Total abdominal hysterectomy

• Left-salpingo-oophorectomy

• Debulking (removal of visible tumors)

• Abdominal wall resection

• Possible bowel resection

• Possible ostomy

Actual surgery time will be set the day before the procedure. Expected hospitalization ranges from two days to one week.

At this point my medical team and I are in agreement that I will not have chemotherapy after the procedure, but if biopsies of different tumors reveal anything other than GCT, there is still the possibility that chemo could be warranted.

So, yes, there are still many questions about the future, but I do feel that I have finally found a firm plan with the expertise needed for my unusual situation.

A quick update

1. I had more bloodwork today - a new test. It’s a good thing I have good veins. I’m giving blood frequently these days.

2. The conversation with Dr. J in Australia was encouraging and productive. Because of that phone call, it is the current “new plan” to forego chemotherapy because there's no real evidence it actually has any measurable benefit in preventing recurrence of GCT.

3. I’ll have a mammogram, ultrasound, and biopsy tomorrow.

4. I have canceled surgery for April 14 here in Wilmington because…

5. I have an appointment at Duke on Monday, and I hope to schedule surgery at Duke in the near future.

6. All of this just moves me one step closer to resolution and a firm new plan.

So, what’s the plan?

March 30, 2023

I thought we had a plan. And we did. But now we don’t.

When paired with new information from the PET scan, the plan we had in place looked less and less like a good plan and looked more and more like an outdated one. As I have been reading clinical research articles and talking with other GCT patients and seeking advice from medical professionals, it has become clear that I should not have surgery on April 14. The idea of chemotherapy is also being called into question.

Sunday evening, 9 p.m., I’ll be talking with a doctor in Melbourne, Australia. I’ve received a referral to Duke. I’ve also got an appointment with MD Anderson in Houston in May (if I choose to wait that long).

All the questions - again. None of the answers.

Thankful for time away here in Texas to put my mind to other matters, and trusting that God’s perfect plan for me will become clear as I continue to listen and discern.

I will trust, as Job did, that my God knows where I am going, that His plan for me will not change, and that He controls my destiny. (Job 23)

It’s time to go public

March 20, 2023

Haitians know how to grieve.  And they know how to laugh.  And they know how to suffer.  And they know how to hold onto hope in the face of impossible odds.

And they are my people.  So what better place to spend the last few days than in this country of contrasts, of joy and of sorrow, as I prepare to fight the toughest battle I’ve yet to face in my 52 years. 

As I shared with the church yesterday, I will fight this with everything I am.  I will fight this because of the boys at CERMICOL, I will fight this for the children of CCS, I will fight this for the community we have built at Haiti Awake, but most importantly, I will fight this for the six boys who have become the sons of my heart, if not the sons of my flesh.

It’s hard to look into the faces of those you love and break their hearts with the news you bear.  It’s hard to say, “I have every intention of coming back, but I cannot say for certain I will.”   But as I told the boys on Saturday night, “I have always told you the truth, and I always will.” 

We talked about the fact that I will lose my hair, that I won’t look the same.   Wesly and I broke the tension of it when I told them not to call me “Tèt Kale” when they see me, and Wesly told me he has plenty of caps I can borrow.  Goodness.  I love being able to laugh when it seems we should cry.

As you can see from these photos Hudson, Steeve, and I took, we laughed - so much, we cried - a little, we hugged, we hoped, and we faced reality - together.

In the days ahead I pray I can continue to step forward with the same courage, determination, hope and strength I have learned from these beautiful people who have become my extended family.

There was a song we sang at church when I was a child, and in recent days these lyrics have played in my head:

“I know God makes no mistakes.  He leads in every path I take along the way that’s leading me to Home.  Though at times my heart would break, there’s a purpose in every change He makes.  That others would see my life and know that God makes no mistakes.”

Glwa pou Bondye.

Sunday morning in Haiti

March 19, 2023

My time here in Haiti is running short, and I feel it this morning.   I am struggling to breathe, to calm my heart, to fight out the anxiety threatening to engulf me.

The last few days have been pure joy.  Pure joy.  Heart-filling, life-giving joy.  But reality is coming.

At moments I feel I am ready to tackle the challenges ahead.   At other moments I feel like I am drowning.

I want to cry, but I can’t.  I’m afraid the tears will come at the most inconvenient moment today.

I believe I will see the goodness of the Lord.

The boys

March 23, 2023

The letters.

When I left Haiti each of the boys gave me a letter.  I held them and didn’t try to read them as they felt like sacred writings in my hand, something to be saved for a time when they could be read with great care and given the attention they deserve.

When I read them, my heart was overwhelmed by the words of teenage boys - boys I know do not share their emotions freely.  I was most amazed to read what Stanley wrote:

“It is the grace of God with you who removed me from under the hand of Fedrick.”

The hand of Fedrick.  Sometimes I forget the hand of Fedrick.  Sometimes I forget the children’s stories as they have a new life.

But the children?  The children will never forget.  They lived that nightmare.  And it will, in some way, always be with them - that darkness - no matter how much light floods their lives these days.

When did these six go from being kids we were caring for to kids that I knew were my own? When did they become my sons? As I told them on Monday morning, “We do not have papers, but we all know the truth. You are adopted.” And they are.

And they are loved. So deeply. I do not want to be another loss in their lives.