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.
A quick Thursday update
Wednesday went by quickly as I had several visitors and different teams were checking in on me every couple of hours.
I was able to get up and walk laps around my floor. There’s a board where we’re to keep track of our laps. I ended up at 3 miles at the end of the day. I’m room 6309. (Yes, I am bragging.)
Ethan has been a great help to me, even staying overnight. It’s been good having him here and seeing him put his professional skills into action on a personal level (and he really likes this blanket Elizabeth gave me).
Yesterday afternoon, however, we noticed I was experiencing some sort of allergic reaction (probably due to the epidural), so that was suspended, and I’ve only had Tylenol and Motrin since then.
My battle scars are substantial, but I am proud of them because they mean Dr. Rossi was able to do what she needed to do, and I came out on the other side.
I am hoping to be discharged later today (or at the latest, tomorrow), and I look forward to a clear plan going forward that includes healing and health.
I truly appreciate all of care and support that has come from so many of you. Thank you for being on my team during this unusual season.
A 2nd opinion
My meeting with Dr Soper in Chapel Hill was good. He did not tell me anything I didn’t already suspect or know, but he laid it out well.
Surgery. Look at the nodule at the back of the pelvis.
Genomic testing.
Taxol and Carboplatin - 6 cycles spaced 3 weeks apart. May be able to travel to Haiti as long as I stay healthy enough
Notes:
Chemo will bring fatigue. I’m going to need more rest than I think I will need.
Stay closer to home for treatment. Dr Robinson knows what he’s doing.
Jeff Swanson reminded me of Psalm 107 last night. It’s going to be a daily reading going forward.
“Lord, help!” they cried in their trouble,
and he saved them from their distress.
When my heart is overwhelmed
I cry to you for help when my heart is overwhelmed.
Lead me to the towering rock of safety. Psalm 61:2
As I shared things with people via text yesterday, many asked, “How are you?” and I replied: “Overwhelmed” more than once.
This morning, the Lord brought the phrase “Lead me to the Rock that is higher than I.”
I searched out the verse and in Psalm 61 (NLT) the word “overwhelmed” is used. Over and over I am seeing glimpses of God in my days and interactions. He will lead me to the place of safety.
This morning I am claiming David’s words as my own: “I will not die; instead, I will live to tell what the LORD has done.” Psalm 118:17
I am ready to fight.
Dr. Robinson called
March 8
We had just finished worship to open RMN this morning, and Dr. Robinson called. So I left the meeting and took his call out in the hallway.
The tumor committee met. They’re recommending surgery . . . and chemo.
I knew they would recommend chemo, didn’t I? Then why was it so hard hearing those words? They took my breath away. I think my voice broke as I responded. I can’t even remember what I said, but I heard the empathy in Dr. Robinson’s voice. And it unnerved me.
Then I walked back into the meeting, carrying my secret, hidden inside of me, wanting desperately to tell someone but not knowing how.
I’m just trying to act normal - March 7
I am at RMN in Charlotte. I am just trying to act like everything’s normal while watching my phone, waiting for Dr. Robinson to call, waiting for more information. Waiting.
I am carrying this secret. And no one knows. I have cancer. But I look perfectly normal, perfectly healthy, and yet there is disease lurking inside - a disease that’s actually making me look good as it produces ridiculous amounts of estrogen. My hair, my skin. They’re amazing.
That was actually my first clue that something was wrong months ago. My hair. My hair that I have always loved. It was just too good - too healthy, too shiny, too full, too vibrant. It reminded me of the way my hair was before the initial diagnosis in 2019.
Isn’t it ironic that very thing that is bringing me so many compliments, “Becky, your hair looks amazing! What did you do this morning?” is the very thing that will kill me if left unchecked.