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.

October 22 was supposed to be surgery day

As I walked onto the beach this morning, I realized, “The plan was to be in the OR at Duke today, but instead I’m seeing this glorious sunrise.”

Dr. Hillman and I spoke again by phone last night. I am so thankful to have him on my team.

He has talked with Dr. Rossi, and on Friday, Dr. Rossi will call me. We do not have a new surgery date yet, but it looks like I will soon have a full open abdominal procedure (similar to the surgery I had in May 2023), followed by a new drug therapy (the specifics of which are still undecided).

After the last 12 days which were full of uncertainty, this morning I am at peace with what may lie ahead. Although I wish all of this could have moved along a little more quickly, I am thankful that by not rushing to a decision, I’ve had plenty of time to process changing circumstances and prepare my heart, my mind, and my body for the days that are coming.

“I will remain confident in this, I will see the goodness of the Lord.”

Psalm 27:13

Don't burn bridges

Taking a great deal of advice from other women with GCT, this morning (October 13) at 7:30 I showed up at Zimmer Cancer Center without an appointment and asked to be seen.

The front desk said, "You have to have a referral." (Who just walks in at an oncology office and gets seen on request, right!?) I went on to do a bit of begging, and the front desk said they'd send a note back to the team of my former oncologist, Dr. Robinson,

A few minutes later, my favorite nurse, Melinda, walked out. She remembered me, and she had taken a look at my chart. It was 7:45 am, and she asked if I were willing to hang around until 9. Of course, I said yes. Five minutes later, a 9 am appointment appeared on my phone, but I didn’t even have to wait until 9 am.

At 8:30, I was called back. Dr. Robinson saw me in the hall, smiled, and gave me a hug before going to see another patient.

I went into another exam room where I asked the normal questions you get with a visit.

15 minutes later Dr. Robinson came in, and he gave me his full attention for an extended period of time, answering every question I had and affirming his willingness to talk to Dr. Hillman and his willingness to think outside the box.

I reminded him I am willing to drive full speed into a brick wall, but I am not willing to die by a thousand paper cuts.

He seems to be okay with that, too.

I look forward to sharing more after my telehealth consultation with Dr. Hillman at UCSD on Thursday.