Today's update 7/31

Greetings from Room 216. I'm still here, but I'm not complaining. The care I'm receiving is exceptional, and pain management is going well.

I continue to have the best visitors and the best nursing care. I have nothing about which to complain.

I am becoming an expert at ambulance transports, and once again yesterday's transport was exceptional.

As I first wrote in 2023, I do not know what the days ahead will bring, but I am determined to live them with as much grace and enthusiasm as possible.

Thanks for joining me on this journey.

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 7/28

Good morning from room 216. It's a new day.

We had a few issues with pain management last night, but we're back on the right track this morning.

I'm scheduled for interventional radiology tomorrow, as well, to block certain nerves in an effort to provide even better relief.

We’re hoping I'll be discharged by the end of the week.

I had a fun visitor yesterday. His name is Fenway, and he's been a hospital volunteer for 14 years.

Have a lovely day, Everyone!

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.