We had a crisis with Ana this weekend starting on Friday. The short version is that Ana had pain in her pelvis on Friday around noon – it was sudden and intense and wouldn’t go away after over an hour, so we took her to the Kingston E.R. They did a scan there which revealed three new tumors in her pelvis that weren’t there six weeks ago when she had her last scan. Together, all three tumors measure about 16 cm (about 6 inches).
Here are the relevant updates that I’ve posted to Facebook since 11/27…
11/27 – 7:30 p.m.
Today’s Curve Ball: Ana’s in the Kingston Emergency Room with intense pain in her abdomen on her left side. It started today at around noon and we called the service at Columbia. The physician on call told us to take her to the local E.R. if the pain didn’t resolve (it didn’t) and not drive her all the way to the city because she felt it was important that Ana be evaluated first. The pain hasn’t gotten any better except briefly after they gave her pain killers (they’ve since worn off). She’s been here since about 2:00 with Jim, and I just came to relieve him for a bit.
She had a CT scan at 6:30 and we’re now awaiting the results which will hopefully tell us what’s going on and if she needs to be transferred to Columbia. If she’s admitted, I’m going to stay home with Emily tonight and tomorrow (I need to work). My heart hurts so much that I can’t go with Ana, but Jim and I need to tag team this one and if it’s anything serious that may require surgery (e.g., a new tumor) then I’ll definitely join Jim at the hospital tomorrow. It is hard to let him do this (so, so hard).
I’m grateful that we had a wonderful Thanksgiving spent with family and that Ana and Emily got a sleepover with their cousins last night. Hoping this is just a little hiccup, and she’ll be back home soon. I’ll keep everyone posted as I know more.
11/28 – 12:06 a.m.
This is more than a curve ball. The CT scan in Kingston showed new tumors in her pelvis including the side where she’s experiencing pain. They’re big, over 4 cm. They’re transferring her to Columbia now. I’m in the ambulance with her. She’s scared. We’re all really scared. These tumors weren’t there six weeks ago. Dr. Yamashiro is on top of this. Hopefully we’ll have more information tomorrow. Thank you for your thoughts and well wishes.
11/28 – Sometime in the evening
Ana and I arrived at Columbia Presbyterian at around 2 a.m. yesterday and we were stuck in the E.R. for about 6 hours. They put Ana in an isolated room since she’s an oncology patient so at least we had some privacy and she got a bit of sleep (I got none). They did a pelvic ultrasound on her around 7 a.m. this morning which didn’t show any kind of problems with her ovaries or appendix that might be causing the pain (they just wanted to rule it out).
They finally brought Ana t…o her room around 8:30 a.m. and Dr. Yamashiro came in to say hello and pick up the CT scan from me and take it away to read it. Ana instantly fell asleep (I didn’t). Dr. Yamashiro, Dr. Martinez and the surgical fellow who worked with Dr. Kato on Ana’s liver transplant (Adam) showed up around 11:00 and took me out of the room (Ana was still fast asleep). This was very scary – usually Jim is with me when the doctors swoop in and usher me out of Ana’s room to relay the results of a scan.
In a nutshell: She has three new tumors in her pelvis – two of them are about 4 cm and the third is about 8 cm. This was a bit of a relief (only slightly) because when I tried to decipher the report from Kingston, it seemed like there were about 5 or 6 new tumors, but I wasn’t sure how to compare the two studies because the Kingston one was pretty basic and difficult to understand.
These three tumors collectively measure around 16 cm and fill her pelvis, thus the pain. They’re not sure why the pain came on suddenly – Dr. Yamashiro mentioned it may have impinged on a nerve or something. He was also taken by surprise at how fast they grew. They are not behaving the way her cancer has been behaving (namely, slow growing). Although – there was that one time she had a pelvic tumor grow to 5 cm within about a month’s time (it was removed last September).
The Plan: She’s going to get a PET scan on Monday and a biopsy on Tuesday. It will likely be a needle biopsy (minimally invasive, minimal pain) and they’re working to try to control her pain. She’s doing very well now on a drug called Dilaudid which isn’t causing the severe drowsiness of morphine, but is helping her a lot with pain. The goal is to discharge her on Wednesday so she can go to the last Led Zeppelin rehearsal and actually perform on Friday and Saturday. Then she may be readmitted…or not. They don’t want to rush her to surgery, but they’re reaching out to a surgeon at Cornell University Hospital who does a minimally invasive procedure that would hopefully mean minimal incisions and a quicker recovery.
The tumors in her lungs and abdomen – the ones we knew about – are pretty much unchanged which is good news. I’m dreading the PET scan, but I know it’s necessary.
Thank you all so much for your perpetual stream of well wishes and words of support. This truly means everything!!
11/29 – 9:30 a.m.
She slept well last night and didn’t need any pain meds until this morning when she started moving around. Today will be mostly uneventful (hospitals go into sleep mode on Sunday). The pain team visited and they’re keeping her on the Dilaudid drip (as needed) for the next couple of days then will transition her to a pill so she can be discharged in time for the show. Everyone keeps asking her about her “recital” and she’s like “What recital? It’s Zeppelin…”
Her pain is my …near obsessive concern. It’s a constant reminder of this newly aggressive change in her disease. This time it isn’t a side effect of her meds, or recovery from surgery. This time it’s cancer hurting her and I can’t do anything. The doctors can’t do anything except control her pain and give her more meds when she needs them.
I’m trying not to let myself get caught up in negativity, in fear. I need to stay positive for her (weeping by her bedside isn’t especially helpful) but I admit that I’m angry. I’m so sick of this shit. I’m sick of cancer. I hate it so much and everything it keeps taking away from Ana. It’s hard enough being 14.