The last four weeks have snowballed. Rich was fine while I was in Phoenix. I came back from my trip with plans for our weekend in Richmond for Labor Day. Between then and now, everything has felt like a dream. I have been using every application and tool I have to try to make sense of what's happened since then. I made a specific Outlook calendar called "Slime" to track which hospital we've been in and what treatments we've tried. I use Day One on my phone and Mac to write notes as often as I can. I send emails and Facebook updates. I bought a giant dry erase calendar that lives in the hospital room with Rich to help track the day and who is there with him. And yet it's still all a blur. When we planned for Rich's first MOAS (mother of all surgeries, officially known as a cytoreduction with HIPEC), everything seemed very clear cut. I was very optimistic. We were going to go in, remove a bunch of slime, rest up, and then go home. That week didn't go as planned, but it was really just the beginning. Since then it's felt like we're in a great big holding pattern. Every three weeks, Rich goes to Nashville to get more "tiger repellant" pills and every nine weeks we get a CT scan that says "no tumor growth, no new fluid." It's felt like a familiar waltz for over a year. I started thinking about things that we would work on while we danced this waltz. Kids we would make or buy, trips we would take, big purchases we might make. 1-2-3, 1-2-3, 1-2-3.
And then WHAMO, Rich got a low fever, chills, and his belly swelled to twice its size overnight. It was a bit of a shock for both of us, and I didn't even have a pony keg strapped to my waist like Rich did all of a sudden. I've been trying to make sense of the numbers but it's all very confusing.
His white blood cell count went from 12 to 15 to 19 and has very very slowly been creeping its way back down since he got to Winston-Salem. We were told he could take up to 45mg of morphine every two hours but taking 30-45mg every four hours led to five paramedics in our guest room scaring the blazes out of poor Rich as the narcan jacked his system. When we finally got to Winston-Salem, Rich's blood tests said his prealbumin was crazy low (2mg/dL versus the normal 14-40). But after a week and a half of TPN it's only climbed to 5. And his C-reactive protein is over 200 versus the normal range of 1-10. That seems logical since it's basically testing inflammation, but none of this explains why.
The numbers don't really make sense. Why did Rich's tumor shrink after a year of not moving at all, but then somehow produce tons of ... something ... in his belly? What is in his belly? Peritoneal fluid? Mucus? Tumor? All of the above? What will happen on Monday when they try to remove it? Will they get it all out? Will they do the HIPEC part? Will they punt again? The short answer is nobody knows. So we just wait.
In desperation, I sent an email to the PMP support group asking for some encouragement or advice. The first response was:
Our faith in God is truly what carries us through this. My husband has days were he struggles but that is flesh, and the days that are wonderful are of God. Hang on, trust in the Lord, and don't go it alone. We always talk about the promise of NO tomorrow, and we live by that. It makes it easier to deal with death knocking on his door. Believing in the Lord is all we have, and the promise of a better place. I'm thinking of you today, and praying for peace.
That may be comforting to some but it just made me livid. Death knocking on her husband's door? The promise of a better place?
So I sent a profanity filled rant to some dear friends. They responded as they should, offering love and understanding and no mention of higher powers. But Travis did one better. He replied:
The positive thing I see in the message about God being their hope is that they have made it this far relying on a friend that doesn't respond. You two have the advantage that when you need people to listen or ask for help, you can be pretty damn sure you will get it.
I am humbled by the support we have received from everyone. Kevin just went home today after spending several days with Rich so that I could be with Ian and not fret. Rich is very tired and a little melancholy about all this, so he's not the best company, but it meant the world to us both that any time he woke in the middle of the night he could look over and know Kevin was there with him.
The nurses have had a heck of a time with Rich's PICC line because the TPN is so sticky. They couldn't get the caps off the other day until Kevin loaned them the Gerber multi-tool we gave him for officiating our wedding. As he texted me, "Full circle, baby. Full circle."
Travis left straight from work today so he could be with Rich overnight tonight. He'll be there with Rich until I get there on Saturday. Laura will be there with me for hardest day on Monday when Rich is in surgery all day (if all goes as planned) and will stay until Shannon takes over on Tuesday. Shannon has already proved her worth from our first surgery as she raced to Baltimore to be my brain for me when things went badly. She'll stay until Friday when Kim shows to be our own personal night nurse for the weekend (I'll make sure she puts her name on the dry erase board just like she's at work). And then Megan ... Megan who has been my brain for me these last four weeks will come to hopefully finish out our hospital stay and see us home.
So it is not just one or two of us struggling through this and praying to God. We are a fucking force of nature like no one has ever encountered. And if pure, fierce love were enough to cure something, then cancer doesn't stand a chance.
Ian wanted me to keep him company while he was in the tub tonight. I was doing my best to lounge on a closed toilet seat while he splashed and moved little foam letters around on the tile walls. He casually asked, "Mommy, what is love?" It took me a minute to answer. But he decided on his own that love was putting someone else's needs above your own. If so, then we are loved beyond measure, so much so that a power greater than the sum of those involved can be the only explanation.