Surgery went smoothly, and I've been home since a bit before noon yesterday. Mostly I'm very tired and very sore, though the pain med rotation is keeping it manageable.
If the Apocalypse Comes, Beep Me
Birth, death, illness, new job, vacation...if it's happening to you and you want us to know about it, post it here. These threads are intended for announcements only. Want to offer sympathy or congratulations, or talk about anything? Take it to Natter. Any natter here will be deleted.
I think I'm overdue for a check in, so: my day-to-day continues about the same - kinda sore, really tired most of the time. I had a cystoscopy (scope of the bladder) last week because the gyn oncologist was concerned that the bladder might have been compromised due to proximity to the uterus/vagina/et al. Finally some good news - no sign of cancer in the bladder! I have another colonoscopy scheduled next Friday (3/3), and that will hopefully be the last test before the surgery. They assure me that they've been working on scheduling the surgery all along (5 weeks now), it's just tricky because I'm up to 3 different surgeons now (gastro-intestinal oncologist, gynecological oncologist, plastic surgeon).
So, unless something miraculous happens between now & the surgery, most of my colon, rectum, etc., is going and my ostomy becomes permanent. Hysterectomy (incl ovaries, etc.), plus (poss TMI) some of the vaginal wall that has been compromised (one of the plastic surgeon's jobs is determining how much to rebuild - or not) Plus, they want to take out the track that my surgical drain has been sitting in all this time (for fear that the material traveling through it was cancerous and they don't want to risk "cancer seeding", and the plastic surgeon will also have to re-build/re-create that area.
So I anticipate a tougher recovery than the first surgery, but they still think they can get all of the cancer, so there's light at the end of this (long, shitty) tunnel.
OMG, finally, a date for surgery! Friday, March 31!
Epic Update - the doctors say the first stage of the operation went well and she’s doing great so far. I'll let you know more as I hear it!
Late epic update- second stage of surgery also went well.
Epic is out of surgery. All went well. We’ll know more tomorrow.
Epic is doing well and they plan to move her to regular room tomorrow.
I've been silent much of this week because of a scary incident: Mom had a transient ischemic attack (mini stroke) Tuesday that caused her to have trouble forming words. We spent most of Tuesday afternoon in the ER, before switching to a patient room for observation and further tests until Wednesday evening. Thankfully it occurred while she was at her regular appointment with her PCP, and he got her checked in to the ER with a minimum of red tape. The attack seems to have resolved quickly with no lasting effects, and she feels fine now.
Any health~ma you can send her way for avoiding further or worse attacks would be greatly appreciated.
Soooo… Mom has bile duct cancer.
(If we could skip the Fuck Cancer thing I’d appreciate it - her dislike of profanity is profound.)
The cancer center where she lives was lazy and ineffectual, told her she was inoperable, Stage 4, and had less than a year… sorry old lady. Pulling teeth to get appointments for PET scan, nutritionist, pain specialist. Hell, if we ARE at palliative get those guys in here!
I kept pointing out I’m a hundred odd blocks from Memorial Sloan Kettering, why are we screwing around with these schmucks?
After a month of this nonsense, she came up, consulted with MSK, may be being being restaged, met with a surgeon, and started scheduling support appointments immediately.
So, the fight is on. I have a new roommate named Mommy and we’re going to save her life.
Jacqueline's oncologist at Cedar Sinai called us Monday to tell us he was stopping chemotherapy.
He thinks she's suffering damage to her liver, and the kidney issues she endured last week also suggest the chemotherapy and immune therapy are negatively affecting organ function.
When I reported after our recent CT scan on July 20th, I relayed what our doctor said to us at the time. He said that things were "basically the same" (that is - the cancer was neither growing nor shrinking) although he was concerned that the trendline with the liver numbers were going up in a bad way. At that point we were committed to continuing the clinical study treatments.
Last week Jacqueline had urinary retention issues (couldn't pee), and we had to go to Urgent Care and needed a saline infusion because she got so dehydrated during the week. During last week she didn't eat for three days and could barely drink or take her medicine. The issues with her right kidney resolved by Friday but she'd lost another three pounds she could ill afford and was very frail and gaunt. She's down to 116 pounds. She was 152 when we started treatment in February.
While we were having these difficult issues last week, the radiologist who did the last CT scan posted his test results to her online chart. When I read them, I could see that our doctor's initial assessment had been overly rosy. While many of the tumors were quiescent, the biggest lesion in her liver had grown 7mm (about a quarter inch) and more troubling were the proliferation of nodules to her lungs.
Our doctor did not have the full report when he had talked to us, and at that time we all agreed to continue treatment. But the combination of cancer growth and further spread to her lungs, her continued weight loss, the incessant vomiting and diarrhea events, the bloodwork indicators of liver damage and the kidney problem prompted his decision.
The best way to understand it is that the clinical study's immune therapy medicine starves the tumors over time. We've been taking those study meds for 16 weeks and if they were working then the tumors would be shrinking by now. The tumors didn't shrink. Nothing has made the tumors shrink, only slow them down.
Also, Jacqueline has been receiving combination therapy. So she's been getting standard-of-care chemotherapy (FOLFIRI), which is very powerful, as well as a monoclonal antibody (Avastin) as well as the Study meds (RGX-202). And that didn't stop her cancer from growing. And neither did the first chemo regimen we tried (FOLFOX).
We have been referred back to Jacqueline's oncologist at UCSF. We have not talked to her yet, so we don't know what the plan is going forward.
But her cancer treatment is over; there are no other options. The next step is end-of-life palliative care.
We have no sense of a timeline here. It all feels very unreal. But weighty.
We've told Matilda and Emmett and EM, and all of Jacqueline's family.
Matilda is in therapy, and is dealing with it about as well as possible. She's depressed. She's sad. But she's functioning and focusing her love on Jacqueline.
Jacqueline is having a hard time processing it and is not really in a place to talk about it. I would suggest giving her some time before you contact her. Maybe let her reach out to you when she's ready. (But please send cards! They are always welcome.)
We are in that strange place where we can see a tsunami of grief on the horizon, but it isn't here yet. It is inevitable and inescapable, but we are still all here. She is with us. We can hold her and love her and talk to her. But the wave is getting closer, and time will take her away.
It is daunting.
Over the near term though, we are looking forward to her recovering from the chemo treatments themselves. She should be able to put on some weight, and go walking and be less foggy and tired. We have missed her healthy self and it will be good to have time with her while her body is not under the constant assault of chemo.