So, what’s the plan?
But once he has made his decision, who can change his mind?
Whatever he wants to do, he does.
So he will do to me whatever he has planned.
He controls my destiny.
Job 23:13-14
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from the PET scan, the plan we had in place looked less and less like a good plan and looked more and more like an outdated one.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.
What does a friend say at a time like this?
March 23, 2023
I had a good meeting with Dr Robinson today.
He told me that he has had several patients with GCT, but I am the first patient he has encountered with recurrence.
He told me that my cancer is manageable but not curable.
He said chemotherapy is my best course of action.
He told me that I have many options with surgery as the PET does not indicate cancer in the ovary. However, given the size of the cyst, he still recommends removal as torsion could happen at any time.
The PET scan does strongly indicate I do have a cancerous spot very low in my pelvis, possibly attached to my uterus or my lower digestive tract. It's impossible to know from the PET scan if it can be removed or not.
Of course, we already know the spots in the subcutaneous tissue are cancer because we biopsied them.
He said that I might be able to maintain an active lifestyle during chemo. He said that the fact that I am active and otherwise healthy increases the chances of that.
He has no problem with me going to Haiti - even the week after surgery or during chemo.
I signed off on the surgical release forms for having my uterus, left ovary and fallopian tube, subcutaneous tumors and the tumor in the lower pelvis removed. However, I can change my mind, and since we're doing chemo he doesn't necessarily believe we need to do that much surgery.
Right now I am leaning towards the least amount of surgery possible and then chemo and praying that does what we need it to do.
Because GCT is such a rare form of cancer, there are not clinical trials in progress we are aware of.
March 24, 2023
Best reply to the above message:
That is a lot....Thank you for sharing with me. My love and prayers are with you and all those who love and care for you 💙
I am very confident you will make the right decisions at the right time. I know that the Lord is and will continue to lead.
Am assuming you will still have surgery on the 14th. Am so grateful that you should be able to travel to Haiti. Your people need you and you need them💙 You are not alone.
Why bother?
March 21, 2023
I am back in Wilmington and headed to a hair appointment this morning I scheduled before I knew everything I know now.
And it just hit me. I won’t have appointments with Ashley much longer. I won’t need a color and cut every six weeks or so. After roughly 7 years together, Ashley and I will be taking a break.
And that makes me sad.
It seems silly to be trying to plan things out with my hair right now. To cut bangs or not to cut bangs. To color or highlight. It will all be meaningless so soon.
And yet it feels like something I can hold on to for right now while life is still normal.
Because relationships matter
3/13/2023
So, this morning God answered a very specific prayer in a very specific way. But it didn’t come without some tears and frustration first.
Anyone who knows me knows how much I value relationships. And this little comes down to that - relationships are important.
I was at Grinder’s with a friend, and the doctor's office called to change my surgery date from April 12 to April 5. This created so many problems for me, and I was feeling like everything was out of control. Multiple appointments would have to be rescheduled/multiple commitments shifted.
So I sat down and typed out an email to my doctor. He is on vacation April 10 - 15. His office did not communicate well and get that on the calendar. I wrote him and told him that I understood that he would be on vacation, but I told him all the ways this change was impacting me and my family - not the least of which being Steeve was planning to be here with me and he can't come April 5 because of Easter at his church on April 9.
(I had been praying for a few days that God would clearly show me if Dr Robinson was supposed to be my doctor through this)
So here's what happened.
Dr Robinson called me. Again I told him how inconvenient April 5 was after all the planning that went into April 12.
So... Dr Robinson is actually going to come in to do my surgery while he's supposed to be on vacation because . . . he's just that kind of doctor.
After much discussion (including his offering to change his vacation plans completely and do it as promised originally on April 12) we settled on April 14 at 6 a.m.
This just confirms for me I want to keep my care with Dr Robinson and not transfer to UNC, though we both agreed I'll still see Dr Souper tomorrow - just for additional insight/advice.
Relationships matter, and Dr Robinson knows me, and he obviously cares about me.
That was my answer to prayer. God wants me to stay with Dr Robinson and hear his voice and trust him. That is what God revealed to me today.
So many people are offering me advice right now, but I am going to settle my mind on the care of this incredibly compassionate and competent physician God has put right in front of me.
Also, Dr R gave me clearance to go to Haiti next week, as scheduled. Could something happen medically? Absolutely, but he does not think the risk is great enough for me to cancel the trip. That was good to hear one more time, too
A 2nd opinion
My meeting with Dr Soper in Chapel Hill was good. He did not tell me anything I didn’t already suspect or know, but he laid it out well.
Surgery. Look at the nodule at the back of the pelvis.
Genomic testing.
Taxol and Carboplatin - 6 cycles spaced 3 weeks apart. May be able to travel to Haiti as long as I stay healthy enough
Notes:
Chemo will bring fatigue. I’m going to need more rest than I think I will need.
Stay closer to home for treatment. Dr Robinson knows what he’s doing.
Jeff Swanson reminded me of Psalm 107 last night. It’s going to be a daily reading going forward.
“Lord, help!” they cried in their trouble,
and he saved them from their distress.