9/1/23
This week’s progress: (All references are to M.D. Anderson Center staff.)
Got the Lorazapam prescription refilled (and the next refill will be at twice that strength). Then met with social services (Becky) as gateway counseling appointment to FINALLY see the psychologist. Someday....
8/31 – Thursday; Meeting with a pulmonologist PA (Cindy) to go over chest lymph node biopsy. Findings: Metastatic Adenocarcinoma consistent with a gynecological primary cancer. The cancer is malignant and moving to other sites, such as the mass in my lungs. She gave me Benzonatate to help with the severe cough created by the bronchoscopy. I also have to have a full lung efficiency evaluation later this month.
9/1: The “tumor board” consisting of oncologists, radiologists, pharmacists and surgeons met to discuss my case together early this morning to develop a treatment plan. This is the second case in 15 years where this form of cancer “appeared out of nowhere, already metastasized.” (That woman also had Lynch Syndrome.)
The bad news: The stats don’t support medium-term (5+years) survival. The good news: Lynch syndrome patients respond well to immunotherapy, which can at least extend survival time by a year or two, and I'm just asking to get beyond 2023 alive, so bonus if it works!)
Gyn Oncologist Dr. Whitworth will direct my case. She handled my 2021 case and I have full confidence in her, so we met with her at 10 a.m. today. She is ordering immunotherapy as well as traditional chemo BUT I’m severely allergic to her preferred chemo drug Taxol. So we are downgrading to low-dose Taxotere, but then pairing it with Carboplatin, another chemo killer. The immunology drug (given at the same time via infusion) will be Pembrolizumag (Keytruda).
I will need weekly lab monitoring for chemo side effects, possible blood tranfusion support, and ongoing steroid support.
We met with the chemo infusion pharmacist today; I’m to get infusions every three weeks (3-4 hour treatment time). Matthew explained all the side effects and all the additional drugs they will be giving me to offset nausea and other side effects. I will lose all my hair likely within a week of beginning, so I gave myself a severe buzz cut today in preparation.
Next Wednesday, 9/6, we meet the surgeon who will implant a port into my chest. This is where the chemo will be delivered, as my arm veins aren’t sufficient to handle the toxins. The following day, the port will be installed. Then a chemo schedule will be assigned.
I’ll be given Zofran and promethazine for nausea, morphine as needed, pain pills for abdominal mass, and transfusions if my red blood cell count drops too low. Dr. Whitworth doesn’t want surgery yet for the abdominal site; it would involve a bowel reconstruction and I’d be in the hospital a week and lose a month’s worth of chemo time. She’d rather get to that lung tumor ASAP and the lymph system cancer and get it under control before it goes to brain or bones (and she is ordering a brain MRI as soon as possible, too).
Then we’ll deal with the abdominal mass (so I guess I’ll be taking pain pills soon after all).
How are we coping?
Tonight, we’re having dinner with a large group of Florida friends, and then tomorrow, we’re playing cards with Buddy and Georgia. The highlight, though, is that my daughter Summer and grandson Patrick are flying in from Chicago next Wednesday. THEN, my girl Brook and grandson Alex are coming Friday and will leave on Sunday on the same plane with Summer and Pat. I won’t be able to travel back to their area or to Madison to see PJ’s family anytime soon, with weekly lab and chemo appointments (each on separate days) but we’ll work on it. I'm just so very grateful that the girls planned this trip as a surprise for me.
I’ve been really depressed this week, but now things are looking up because WE HAVE A TREATMENT PLAN. AND the girls are coming! Tuesday, I did go out to a thrift store to drop off some things, and then went inside and bought a pink “love letters” mailbox in which to keep cards and notes (I print off your comments and put them there). In that day’s mail arrived a love letter from Summer which was so beautiful that it made me cry happy tears. I told her that the last love letter I had from one of my kids had been from 7-year-old PJ, who wrote: “I love you mom cause you cook good.” (I still have a digital copy; I’ll have to print it and put it in there, too).
I love you all, too, and not because you cook good (a few of you do). But because you’re still in this with me as I get ready for what probably will be the hardest cancer fight I’ve ever faced, and baby, this ain’t my first rodeo, so that’s saying something. Thanks for your love notes and your prayers and your positive energy, especially when my battery is really low, like it was this week.
Jody