Chemo. Round 2. Day 4. Appointment with Dr. Robinson.

Backstory. I recently asked Dr. Robinson for a CT scan because I have a lump in my lower abdomen that’s sizeable and has not gone away.

Labs and the CT. I had labs on Monday that indicated impaired liver function. I had the CT on Tuesday, and it indicated multiple sites of disease.

Today’s visit. I want to start out by saying I am so glad I am back in Wilmington for care. Dr. Robinson is pretty awesome, and it is so easy to pop over to Zimmer for appointments like this instead of driving all the way to Durham.

Monday’s lab indicated impaired liver function. Combined with the CT results, I thought Dr. Robinson would point to the cancerous nodules as the cause of that impaired function. Instead, he believes that the liver function impairment might be because of Taxol (one of my chemotherapy drugs), not the cancer. He has been leaning toward changing my chemo drugs anyway because Taxol is so harsh on the body and I have had platelet and ANC issues. If the decision is made to change my chemo regiment, we will likely choose Abraxane instead of Taxol.

He wants me to continue chemo, and he wants me to complete 6 rounds, if possible. The reason he had agreed to the CT at my request was because I have had a lump in my lower abdomen. The CT scan showed that is an enlarged lymph node, not a cancerous nodule, so he was confident that we're not in any great rush with making any changes to treatment at this point.

He wants me to have blood work and see him again May 11 with the goal being to have Round 3 of chemo on May 18.

I am going to Duke the afternoon of May 11 to check in with Dr. Rossi, and Dr. Robinson is aware of that. He also knows I have spoken with Dr. Hillman in San Diego. Dr. Hillman's opinion was to do at least 3 rounds of chemo before making any decisions, so this all tracks.

Dr. Robinson also said he had no problem with me traveling as planned the next two weeks. So, all in all this was a good and reassuring visit, and today he shared that he has other patients with recurrent GCT and has tried a variety of treatments with them. In 2023, that was not the case.

I came home to this amazing surprise from some dear friends. The card read in part: “My husband collects shark teeth, and he wanted you to have these. When he looks at them, he sees a creation of God’s that weathered harsh conditions and even though battered, survived. We hope these will be a symbol of God’s goodness, sovereignty, and love for you.”

How thankful I am for all of you, my kind friends, who continue to encourage me day-by-day.

Today is not that day

Am I on the downside to 55 years? Yes

Do I have active disease? Yes

Am I on Letrozole and Lupron? Yes

Am I facing a liver resection and debulking surgery December 10? Yes.

Did I just run a 10K with my best time in years? Yes

One day I won't be able to do this, but today is not that day.

The April 22, 2024 appointments

I had three appointments at Duke on April 22. Here’s a quick update.

My first appointment was with Dr. Rossi at 10:30 a.m. We had a great visit as we talked about the present - and the future. I’ll have a CT scan at my next visit.

Then I went to the lab at 11:30 to test Inhibin A, Inhibin B, AMH, and to do a CBC.

These results were almost instant. We have no idea what was causing the low RBC Count before, but my RBC Count is fine now.

Then Rick and I had lunch at Pure Vegan, per the usual.

Cardiology was at 2:30 at the Raleigh location. It was a positive visit with Dr. Deepa Upadhyaya. She’s confident I do not have any major heart issues. She believes the accelerated heart rate I am experiencing when exercising might be a neurological result of the surgery last year, but just to be safe, she wants me to return for an exercise stress echocardiogram in July.

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And today I received this amazing news. 🙌

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I'm NED!!

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Next up?

DXA Bone Density (to make sure Letrozole isn’t having an excessively negative effect on my bone density) and the ECHO Stress test -July 24

CT with contrast/ Dr. Rossi - August 12

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Thank you to all of you have who been faithfully praying for me on this journey!

The Fueled by Faith Podcast

I recently had the opportunity to talk to my friend, Emily, on her podcast - Fueled by Faith. Though the conversation was not what we had planned, we believe it is exactly what God intended for us both on a morning when we were both clinging to the promise of Psalm 73:26:

My flesh and my heart may fail, but God is the strength of my heart, and my portion forever.

A quick update

I know it’s been a while since I have given an update, and that’s because I have been waiting until I actually had something concrete to say. But this entire process, truly since the beginning, has moved painfully slowly.

After sharing the following with family this morning, I decided to share it here, too - even though there’s not much to tell.

I am doing a lot of reading about Resveratrol which is found in many foods like dark grapes and blueberries.

I am having a very hard time getting answers from Duke about the implications of my Foundation test and my bone density test, and the longer this goes on the more inclined I am *NOT* to go on Letrozole. I was told yesterday that Duke could not get me in with an endocrinologist until DECEMBER. There's no point in seeing the endocrinologist (re: going on Letrozole) if I have to wait until December. Our health care system is a mess.

Have a great Wednesday. Love you.

I ask you all to continue to pray for wisdom. I do not have peace about going on Letrozole without getting concrete answers about the implications of Foundation testing and the DXA scan.

Adventures begin when plans end

We had plans to go to New Orleans this weekend. But then we couldn’t get a plane ticket.

So we shifted gears and made plans to go to Maine. We had plane tickets, but then the flight out of RDU was cancelled… after we were already in Raleigh.

We pivoted again and drove to Crossville, TN, where we’ve had a lovely time exploring God’s creation.

Sometimes you have to make the best out of the situation in which you find yourself, remembering that we can make our plans, but the Lord directs our steps (Proverbs 16:9).

Last night’s dinner at a sweet little restaurant called Nicoletta’s was a reminder of that.

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.

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)