Most important - thank you to everyone who has been so very generous with their love over the course of the past ten days. This is one we didn’t see coming, and your encouragement was more important than you can imagine. You are simply the best.
Most of you followed along on Facebook, and know that Abi underwent heart surgery - twice - last Friday. - the 26th of October. Most of you know that she’s out of the hospital, and hopefully doing her incentive spirometer while I’m typing this.
Or walking stairs or taking walks or planning the next big thing, and no matter what - pushing to do more today than yesterday. Certainly not quite sleeping as much as she, or any of us, would like her to sleep.
Because this is what she’s doing these days.
(But mostly just planning the next big thing because. Well…because Abi and because of your encouragement.)
Many have questions about how and why she ended up in surgery in the first place, and what it means.
So here we go.
A week ago Thursday Abi had a routine scan. The timing was important because she and John were heading to Boston on Friday to spend a long weekend with Chris and Victoria, eating at good restaurants, going to a magic show, and seeing Hamilton to celebrate both John and Chris’ birthdays. These were memories that Abi was absolutely determined to collect.
They were to stay a couple of extra days to meet with a high-grade neuroendocrine cancer specialist on Wednesday, and the scan was intended to provide the absolute latest information to him to inform any recommendations he might have.
At 8:30 Friday morning, while Abi was finishing up packing (to John’s mild frustration) we got a call from Dr. McGaughey. His immediate concern was that Abi and John had already left for Boston, and once that fear was assuaged, told us that the scan had shown the accumulation of water on Abi’s heart. The scan couldn’t really tell how much, but the situation was serious. He told us to head to Norfolk Sentara for an emergency Echo Cardiogram. He was pretty confident he could have that scheduled by the time we arrived.
At this point, we’re still hoping to get the test knocked out, and get Abi and John on a later plane to Boston and their weekend wouldn’t be too badly affected.
The universe had other plans.
The echo showed the volume of liquid was significant, and had to be dealt with immediately. Often, fluid is drained with a catheter…a pretty simple procedure, but the doctor felt Abi’s heart was too close to the pericardium, and using a catheter risked damaging the heart tissue. So they opted instead to for a slightly more invasive procedure - a pericardium window to drain the fluid.
By noon, Abi was in surgery. (Nothing moves this quickly in the medical world. Nothing.)
By 2:00 pm, Abi was back in a step down unit. Sleepy, but pretty good. The doctor said the procedure had gone well. She had been under general anesthesia, but hadn’t been intubated, and a quick recovery looked pretty promising. John spoke to Chris, and they quickly put together plans for a trip the next weekend - and Chris happened to have an extra set of tickets to Hamilton - so John’s anniversary gift was in tact. Abi still had hope that she’d be able to collect these memories.
She was disappointed that she would miss Chris’ actual birthday on Monday, but encouraged that they’d be able to salvage some quality time after a short delay.
Then it switched.
Abi had two drain lines coming out of her pericardium. After an hour or so, tension started rising. The surgeon from the cardio thoracic team was spending a lot of time in the room. At one point he received a call on his cell, and impatiently told the person on the other end that he would have to call back.
“What I’m dealing with here is far more urgent.”
The urgency came from both the amount of fluid that was draining from her tubes, and that the drainage looked like blood.
By five o’clock the surgeons determined they had to find the source of the blood, and couldn’t do that through the window. Instead, they were going to have to open up her chest to do a full inspection. A full radial sternotomy.
At eight-thirty this morning, Abi and John were getting ready to head to the airport for a weekend in Boston with Chris and Victoria. At ten o’clock, we thought she was going to have a simple catheter inserted to drain a little fluid. By five o’clock, Abi and her compromised immune system (she was in the middle of a chemo round) were in their second surgery of the day. This time, it was open heart surgery.
There is so much more I could share, but I’m going to skip a lot of the details. The extubation detail - which were the absolute worst. The details on Saturday night when Abi’s sodium level was so low that she couldn’t remember why she was in the hospital and why she had a nurse handing her pills. (I was convinced she had suffered a stroke.) The details of the kindness of the nurses and the PAs and the NPs and the care team partners. The joy of seeing Abi walking down the ward for the first time. The details of how I felt when I got a call from Danny telling me he and Tammy were in town after driving most of the night to hang around with Abi and our family.
The details of John’s fierce dedication to his wife, and how I still get a little teary-eyed thinking about his determination to spend every waking hour beside Abigail. It might be the thing I’ll remember most/longest of the week in the hospital.
John’s fierce dedication.
We’re back home now. Adjusting to recovery from open heart surgery while continuing to battle cancer. Abi is still Abi. Working hard.
But as for what this means to the future, here we are, again.
Doctor McGaughey came in the last day we were in the hospital, and we talked about what the scan showed, and the way ahead.
First, the scan showed that immunotherapy and her current chemo regimen aren’t working. I can sugar-coat this any way you want me to sugar coat it, but the fact is, it’s just not working. It was time to say so.
So Abi will go see Dr. McGaughey next week, and we’ll work to find another high-grade neuroendocrine cancer specialist in hopes of finding a study we didn’t know about, or some other option to give us more time more time well spent with our beloved girl. We hope to know more in the next week or so, and I will definitely share with you what we find.
I should note that we are simply not at the end of treatment options. In the first place, we’ll be seeing the radiation oncologist this Thursday to discuss treatments that we might do to increase Abi’s lung capacity, and to minimize the possibility of pneumonia. Additionally, Dr. McGaughey is considering alternative chemo regimens that may give us back our most precious asset - time with our beloved girl.
And I’m absolutely certain of this one thing. That Abi has never been loved as much, or as deeply as she is right at this moment.
Because she is so deeply loved.