Today’s update 7/30

Yesterday was a successful day in achieving access to both interventional radiology and radiation oncology. Both procedures appear to be having palliative effect already.

A fun story from the transport to the radiation oncology center. The EMT attending me asked, “Do you go to the beach each morning to look for shells and other stuff?” Of course, the answer is yes! and it was at that point that we realized we knew each other. My EMT was Tahlia of Oti by the Sea, and last Christmas she did some gifts for my family members from pieces I had collected at Wrightsville Beach.

We’ll see what today brings. Discharge orders, maybe?

Today’s update 7/29

Good morning.

Yesterday ended up being a much busier day than anticipated. Between visits from friends and practitioners, getting a Fentanyl patch, and an unexpected trip to radiation oncology for my first radiation treatment, I had little free time from early morning until about 9 pm.

I could not be more thankful for Dr. Robinson. I am so glad I brought my care back to Wilmington.

Dr M is the kindest physician and has coordinated my care in a way that takes my wishes into account.

Today I am waiting on an OR time for interventional radiology. My procedure will be performed by Dr. Eric Keller who is widely respected and admired for his work here at Novant. You can learn more here:

I had hoped for more visits with friends yesterday, but when the team decided to add the patch and radiation off-campus (my first ambulance ride!) to my schedule, we unfortunately had to cancel some plans. I’m so sorry for that.

My first ambulance ride of my life. You’re never too old to do something new. Ha!

My college friend, Kim, is here, helping me manage my phone, etc. If you want to drop by for a visit or have any questions, we would appreciate you coordinating with her first - (864) 304 6751. She has been a Godsend.

Lindsay is kind and caring and knowledgeable. I’m so thankful for her.

Gabby has been such a phenomenal caregiver. She’s off work the next few days, and I am going to miss her.

Today’s prayer request is for coordinated visits with radiation and interventional radiology and efficacy from the treatments I am currently receiving. What a wonderful team I have here at Novant. I am on a wonderful floor, and I have had the best care I could possibly ask for.

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.

Tomorrow, June 8, is Round 4.

To say I'm dreading tomorrow is an understatement. I already feel tired, drained. I know what tomorrow will look like, and I know how I will most likely feel the rest of this week, maybe even into next week. It’s looming.

We got in late last night from attending a wedding in Florida. I did not feel like doing anything this morning. But I got up, put on my shoes, and went for a walk around the neighborhood. There was no way I could possibly run. I don't have the energy. But I can still walk. And I remembered these wise words:

“If you can’t fly then run, if you can’t run then walk, if you can’t walk then crawl, but whatever you do you have to keep moving forward.” Martin Luther King, Jr.

And that's what I plan to do. Keep moving forward.

Chemo Round 3. Day 4.

Today was better overall, and I'm hopeful tomorrow will be even better

Today's low. My hair is shedding heavily.

Today's high? Time with Clara.

It's a new week

Thank you for all the prayers and support last week. My next infusion date is April 6.

I am feeling like myself again and planning to enjoy this down time before Round 2.

Today was my 2nd post-chemo shampoo. So far, so good.