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.

The Unofficial Plan

In early March after the tumor board met at Novant, my Wilmington surgeon told me I would need debulking surgery (removal of visible tumors) as well as adjuvant chemotherapy.

I then requested a referral to the UNC Cancer Center because I had done enough research over the last four years to know that chemo is generally not markedly effective in stopping recurrence of the disease or extending life expectancy. However, the provider at UNC affirmed Novant’s recommendation. I accepted that and began preparing my heart and mind for surgery on April 14 followed by six rounds of chemo spaced three weeks apart.

But then I really started digging into clinical research, as well as reading the stories of other women with GCT. And I circled back to what I’ve known since 2019 - chemo isn’t a great option for my situation. I started asking myself questions like, “Why would I break down the health I currently have for the small possibility I might have added longevity in the future?”

On April 2, I talked with Dr. Jobling in Australia, and he affirmed what I was thinking: Chemotherapy is not the right course of action given where I am right now on this journey. His recommendation was surgery, then maintenance hormonal therapy (i.e. hormone suppression).

The next morning I had a telehealth call with my surgeon at Novant. I canceled my surgery with him and told him I was going to pursue other options. I did not at that time have another plan in place. . . but I knew without a doubt that I needed one. He and I had an amicable conversation that left the door open to potential partnership for my health care in the future, even if my primary care is at a different facility.

Fast forward through repeated phone calls to MD Anderson and Duke before deciding to go with Duke, fast forward through my initial meeting with Dr. Rossi and the next three weeks waiting for surgery, and fast forward through my surgery on May 2 to where I am today.

Last week, I was told there would be a conference on Monday, May 15, to discuss my care. In light of that, I sent this message:

“It is my desire to remain active and engaged in life. I want to pursue options which maximize my potential for that. Quality of life, not quantity of life, is my focus.”

— Note I sent to Dr. Rossi before the Monday conference

I have yet to speak to Dr. Rossi directly (that will happen June 5), but this is what her nurse conveyed to me after the conference:

“Recommendation: consider carboplatin/paclitaxel though favor reserving chemotherapy for future recurrence/progression with measurable disease, versus maintenance hormonal therapy with letrozole, also could consider addition of palbociclib to letrozole, though favor reserving that combination for future recurrence/progression as well.
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Looks like the team was open to chemotherapy, but think holding off is the better way to go at this time. Dr Rossi will review all of this and ask for your input at your post op visit.”

— Nurse's reply after Monday's conference

I was so relieved to read this because it is exactly the plan I would have written for myself based on all that I have read and heard. Yes, there might be a place for chemo in the future with recurrence/progression, but for now, I am comfortable with minimal intervention, a continued healthy lifestyle, and a wait-and-see attitude.

I am quite ready to jump back into life, and I have every intention to live my life to the fullest - without fear of the future. This journey is not over. But I am ready to embrace the next chapter.