In No Particular Order
This week, Florence came and went in Norfolk. Except Florence never came to Norfolk (so I suppose it never went, either).
On Monday, the governor issued a mandatory evacuation order for people living in “Zone A.”
We live in “Zone A.”
We didn’t leave. We waited to see how it played out, and truth be told, there really wasn’t any good place to go anyway. Toyed with a long weekend in Charlottesville, which sounded pretty good until the forecasters predicted “biblical flooding” for the mountains of central Virginia. Toyed with Richmond, but more the same. DC? Maybe, but even DC was expected to get hammered. And going south was completely out of the question.
Chris suggested Boston.
Love Boston. But no.
In the end, we had a sound contingency plan. A couple of nights in The Main in downtown Norfolk. On a high floor. Where they have generators and bottled water and food and lounges to play games and write a Hurricane Florence story that we could share for a while. Maybe read it when we sat down for Thanksgiving.
Or if it looked like we would get a direct hit, then we’d probably exercise the DC option.
It was a good plan.
But, mercifully for us, Florence stayed south. Mercifully for us.
So many prayers for the people who are still in the throes of the storm, and may be for a while.
Abi’s scan was Tuesday. We get the results from Dr. McGaughey Monday morning. I really hate bringing expectations into these appointments, but the simple truth is that we don’t need scan results to know if her current regimen has yet to take hold. We can see and feel the lesions in Abi’s neck. They might be getting bigger. They might be staying the same.
But it’s almost certain they’re not getting smaller.
As for the scan - it may not be all that revealing. It came less than a week after Abi finished radiation, and typically, results so close to radiation are almost certain to light up more in the area that she received treatment - in this case, her lower back and abdomen.
So what do I expect? Either we’ll give the new chemo/immunotherapy a little longer to do something, or we’ll move on to the next treatment option. (We talked about next treatment options at our last meeting with Dr. McGaughey. We have options. More on that if we go that route.)
As for the current regimen, while the immunotherapy didn’t eliminate the disease, it may have had an impact. It’s just not clear, and it doesn’t make sense to give up on it yet. And the simple truth is that between radiation and nausea, the chemo really hasn’t been given a fighting chance yet. My guess is Dr. McGaughey will stick with this for another round or two, then get another scan that gives us something more definitive than what we’ll see tomorrow.
But I could be wrong. More later this week.
Question: What do you do when your older brother comes to town from Boston?
Answer: Get him to build a tent-fort with your husband where everyone can watch John Wick and Frank and Hello, My Name is Doris, and The Boxtrolls, and eat popcorn and butterfingers and cheese balls and strawberry twizzlers, and fall asleep next to your people.
You invite your husband into that place you spent so much time as a child and rediscover that he did exactly the same thing when he was a little boy, and remember yet another way to love him more deeply still.
Of course you do.
(It was a much more impressive tent-fort than they ever built as children.)
We met with a palliative care specialist on Tuesday. She was pretty terrific, and spent a good deal of time just listening to our girl. Hearing what Abi had to tell her.
She pushed pretty hard for Abi to be a little more systematic in her pain management regimen. To this point, Abi seems to know when her pain is coming on, and what triggers it. So she’s been taking narcotics and Tylenol on an “as needed” basis.
Sometimes her pain spikes. Sometimes her nausea doesn’t allow her to take pills when she really needs them. But in general, she keeps her pain from overwhelming her, manages to avoid being high all the time, and is staying confident that she’s not developing an tolerance to the narcotics. A tolerance that Abi worries will make it impossible to manage her pain later.
Nobody’s daughter should ever have to worry about such things.
Nobody’s son should ever have to worry about such things.
The doctor’s approach is a little different. She’s encouraging Abi to take the pills on a schedule. Not to wait for triggers or indicators that the pain is coming on. Abi agreed.
The results have been mixed.
Three nights ago, she was up all night in pain. Her best efforts to stay ahead of it simply weren’t enough. So not only was she in pain, but she was very discouraged. Not sure what to do when she’d exhausted all of the options in her pill box, but still hurting. Badly.
It’s been a long time since our girl wept in pain.
Twenty-four hours later - a completely different story. Pain well under control. Abi asked for a back rub because it felt good to her. Not because it helped to distract her mind from the incessant pain.
Follow up with Dr. Castillo on Tuesday. We’ll see where it goes
So much love arrived this week. So many kindnesses meant for, and perfectly matched to Abi. In the mail. UPS. Neighbors at the door. From florists.
Every day - literally - there was some kindness offered. Some kindness to be cherished.
A gift card for massages.
A different cream for her radiation burn.
Fried chicken and bottled water. and fresh crabs and flounder.
Popcorn and gel masks.
Cards from unexpected people literally stuffed full with raw nerve moments for our girl.
Timing is everything.
People are amazing. Thank you.
Thank you still isn’t nearly enough.
I mentioned Abi’s current round of radiation is over. To me, the most important thing was that it address the blockage that was preventing her from eating, from keeping what she did eat down, and for the perpetual nausea. Pain relief was important, too, but secondary to the effect the disease was having on her nutrition. (She’s close to 100 lbs right now.)
It seems to have made a difference. She still gets nauseous. She works so hard to keep weight on, and I would love for her to be able to eat more. But It seems that she is keeping much more down. It seems that she spends far less time in red than she was prior to the radiation. And it seems to be getting better the further we get from her last treatment.
I’m cautiously optimistic.
The trick is not to get too high on the good days. On the days that Abi gets an (almost) normal number of calories and keeps them down. When she can go for a walk with Bindi in the afternoon or sleep soundly for more than a couple of hours at a time. The trick is not to believe the good days will become every day, and not to lose a little piece of yourself when the next day isn’t.
The trick is not to get too low on the bad days. On the days that she keeps nothing down. On the days when she takes advantages of brief, very brief, reprieves in the pain to sleep, and the best you can hope for are a couple of 30-minute cat naps. The trick is not to believe the bad days have already become every day, and not to see each day through that lens. Because you could.
“Things fall apart;
the centre cannot hold;”
The trick is prepare for the math lecture the night before instead of the morning of. The trick is to walk on the beach every day. The trick is to answer the letters on your desk. The trick is to bake bread and bagels for the neighbors. The trick is to read a different book, instead of pulling Garp off the shelf again. The trick is to replace the lightbulbs the day they burn out. The trick is to iron your shirts. The trick is to make your bed. The trick is to take Bindi to the park, and to play Century Spice Road with your sons.
The trick is to do everything you can to reinforce the center.
Because the center has to hold.