When plans change

Today feels really odd.

Based on the schedule for chemotherapy that was originally laid out, today should have been my last treatment - treatment 6 of 6. I suppose I expected to “ring the bell” today, though I must admit I wasn’t looking forward to that because I knew that finishing 6 cycles of Carbo Taxol wouldn’t be the end of the story.

But then plans changed when my ANC and my platelets went so low after the initial treatment. A three-week delay ensued. That pushed the entire schedule back, so today should have been treatment 5 of 6.

But then came the lab results and the CT scan that showed the cancer has progressed significantly since we started chemotherapy treatment in March. Words like “high histologic grade,” “progressive disease,” and “platinum resistant” now define my disease.

And so I am conflicted. The very thing I fought for seven years became the valley I willingly passed through, but I was extracted from this same valley without actually walking the full length of the path. I never envisioned this being the way the story would play out.

Part of me wishes I were at chemo this morning because that would mean it had been working, and part of me is so glad it’s over. I never believed it would work for me. That’s why I fought going this route for so long. And I was right. But it doesn’t feel good to be right in this case.

I continue to believe that there is more to be learned on this journey, and I am thankful for Biblical wisdom that reminds me today and each day, “The Lord directs the steps of the godly. He delights in every detail of their lives.” Psalm 37:23

None of the twists and turns on the journey have taken God by surprise.

Immunotherapy?

I had a really good chat with Dr. Rossi yesterday during our telehealth visit. She concurred with Dr. Robinson that chemotherapy was not having the desired effect and that we need to explore other options.

Though we talked about three possible therapies for the days ahead, we both agreed that immunotherapy would be the best option given my current situation and lifestyle. The one issue with immunotherapy is that it is expensive and often denied by insurance companies. Dr. Rossi has not yet used immunotherapy to treat a patient with GCT, but taking all factors into consideration, she feels it’s worth a shot with me.

Dr. Rossi does plan to consult with Dr. Hillman at UCSD, just to see if there’s anything he might suggest that we have not thought of at this point.

Please pray that we can get insurance approval and move forward with this plan if it truly is my best option.

I am incredibly thankful for access to good medical care and a team of health care professionals who are so willing to spend time considering what is best for me.

Just when we think we have plans in place . . .

Plans are made. Plans change. In Proverbs 16:9, the Bible says:

“We can make our plans, but the LORD determines our steps.”

The truth of that in regard to my health care became apparent this week when both my blood work and my CT scan showed continued progression of disease despite four rounds of chemotherapy. I met with Dr. Robinson and his PA yesterday, and it was decided that there is no valid reason to proceed with chemotherapy as it is not having the desired palliative effect.

What’s next? We are not yet certain. A number of options have been discussed. I will have a telehealth visit with Dr. Rossi on Monday and another appointment with Dr. Robinson on Thursday, June 25. I hope to have a plan in place by this time next week.

I recently did a genetic profile with the Target Cancer Foundation’s TRACK study, and we will likely choose one of the options they recommended. Dr. Robinson is willing to try an option that he has not used for GCT before. I appreciate both his compassion and willingness to think outside the box.

I love this quote, and I want it to define how I live in the days ahead:

“The function of man is to live, not to exist. I shall not waste my days in trying to prolong them. I shall use my time.”

— Jack London

Thank you to all of you who continue to pray and reach out to me. I know the prayers of the saints are what sustain me day by day and give me this deep peace that even I don’t comprehend.

Chemo Round 4. Cold capping.

Way back in March when I started chemotherapy, I told my capper, Crystal, I had a big goal. I wanted to have enough hair left to style as I attended the 2026 GO Woman Legacy Gala in Canton, Ohio, in June. By God’s grace, that dream was a reality. Though my hair has thinned substantially, though I have a bit of what I call “male pattern baldness” starting on the crown, on Saturday night none of that mattered - and I doubt anyone but me even noticed.

I have no regrets about choosing to cold cap. In fact, if all my hair were to fall out tomorrow, I would consider this a success. It’s been three months since I started chemotherapy. Most women who receive this type of chemo lose their hair after the first round.

I didn’t choose cold capping for vanity. Those of you who know me well know I would be just fine with losing my hair. In fact, it would have been much easier than following all of the rules I have had to follow these last three months. No, I chose cold capping so that I could continue on with life as normal. Though I am obviously very open about my diagnosis and disease, I do not want to lead with it. I don’t want it to be what defines me. I want people to know me, then know that this illness is a part of my story - not the whole story.

Being back in Ohio after nearly 30 years was good for my soul as I got to spend time with old friends, while making a few new ones as well.

In particular, I had the opportunity to spend three hours talking to one old friend on Saturday morning. It was the first extended conversation we had had in over 30 years, but time did not matter at all as we dove right into deep conversation as if meeting up for Saturday breakfast was a routine occurrence. I am so grateful for the time we had together.

The verse that came to mind over and over this weekend was Romans 11:33:

“Oh, the depth of the riches of the wisdom and knowledge of God! How unsearchable his judgments, and his paths beyond tracing out!”

Now, on to the new week.

Chemo Round 4. Day 4.

Walking the beach this morning, I found myself thinking about test results I received this week. The numbers, the unknowns, the questions that hover just beneath the surface — they all came with me to Wrightsville Beach. And as I walked, an idea I heard on a podcast earlier this week kept coming to my mind: “Get comfortable with being uncomfortable. Garner a healthy respect for uncertainty.”

There is something strangely freeing about accepting the reality that life is unpredictable and not within my control.  And yet, there is peace. Haiti has been my best teacher of this reality.

People have asked me how I can be at peace with everything happening in my life right now. The answer sounds simple — maybe even cliché — but this is the truest thing I know: My mind is fixed on Him. That doesn’t mean I never wrestle with my thoughts. I do.

But more than 14 years of loving Haiti have taught me many crucial lessons.  And I’ve had over seven years since the initial diagnosis of GCT to practice this discipline, more than nine years since the first symptoms whispered that something was definitely wrong. Years of learning, slowly and imperfectly, how to lift my eyes above the circumstances and fix them on the One who does not change.

Peace didn’t arrive all at once. It was shaped in the crucible — in the waiting rooms, in the hard days of Haiti, through the unanswered questions of life, in the slow unfolding of difficult truths. Over time, I’ve grown in my ability to set my thoughts on things above. It’s a discipline, a daily exercise, a muscle strengthened through repetition.

And today, like every day, I have to ask myself the same questions that helped shape my work in Haiti, as well as my approach to my health care:

Is this a tragedy or an inconvenience?  How much emotional energy am I willing to give to this issue?

These questions don’t minimize the hard things. They simply help me steward my heart. They help me remember that not everything deserves the same weight. They help anchor me to what is eternal rather than being swept away by what is immediate.

Uncertainty will always be part of my story, but so is God’s faithfulness. And His faithfulness is the louder truth.

Chemo Round 4. Day 3.

Nothing exciting to report today. Extreme fatigue is my friend, but I’ll take it over nausea any day. My RBC and hemoglobin are quite low, so the fatigue is to be anticipated.

I am waiting to hear from Dr. Rossi and Dr. Robinson on a few things, and I’ll share that information once I have had those conversations.

“Live your life comfortable with uncertainty.”

— Dr. Ellen Langer

Chemo Round 4. Day 2.

I had no nausea today, and other than needing a 2-hour nap after lunch, my energy level was great, too.

All in all, not a bad day. I was able to go to the beach this morning, and Clara came over to meet Steeve this afternoon.

Thank you to all who have been praying for me.

Round 4. A quick recap in pictures.

I’m tired, and I have so much nausea tonight, so this update will be quick.

We arrived at Zimmer before 7 a.m.

Check in and then off to the port lab to access the port and do labs.

Lab results took longer than expected, and I obsessively checked my watch for updates.

I texted friends as I did laps around the Cancer Center to burn off nervous energy.

Though some lab results like ANC and hemoglobin were low, they were not so low as to delay chemo. So Crystal did my first cap downstairs, and we headed up to the infusion center.

Ethan was working today, and when he got a break, he came over for a quick visit. A highlight today! And… if you were wondering who took all these photos, it was STEEVE! Yes, he’s here!

I had a private room at the center, and I did get rest there, but I was pretty wiped out by the time we got home this afternoon.

Alexandria came over for several hours, and that made the time go so much more quickly and took my mind off the nausea. I am so thankful for her friendship! (I can’t believe how puffy my face is from the steroids.)

Crystal is the best. She capped with me during the last hour, and there’s a story behind that, but that’s more than I want to write because I am ready for bed.

“We set our hope on You
We set our hope on Your love
We set our hope on the One who is the Everlasting God
You are the Everlasting God.”

— William Murphy