The greatest of these

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.

Trying to catch up with cancer

I have not had the energy for blogging this week, but at the same time it's important that I write things down. I found myself going back through the blog to figure out how long Rich's recovery was from the first surgery. And while Facebook has served a purpose for immediate dispersal of information, it's not the same vibe. So let's sit for a bit and catch up, shall we?

When last we talked, we just had to survive a week until we could make it to Winston-Salem and have Rich "debulked." Surviving that week proved more difficult than anticipated. Rich was taking 45mg of morphine every four hours or so. We had no reference to know that was the medical version of a shit ton of morphine. The drug references we later consulted went up to 30mg every four hours despite his bottle saying he could take up to 45mg every two hours.

The hiccups were wearing Rich down. They were relentless. On Monday night (June 2), Rich went to bed in the guest bed. He wanted to spread out and be comfortable. I heard him coughing and hiccuping at midnight when I fell asleep. When I woke up at 4am with low blood sugar, I heard this odd gurgling sound. I got my juice box but then went to investigate and discovered I could not wake Rich up at all. I called my parents first to come down and then called 911. In the movies it always seems like paramedics are dispatched as soon as you state your address, but the operator asked me a million questions. I think she did all that while also dispatching help because our guest room was full of EMTs within minutes of my hanging up.

Narcan roused Rich, but we still headed to the hospital. We spent the next two days getting him stabilized as we figured out how to get him to his original Winston-Salem appointment. We discussed helicopters and ambulances but in the end Rich was stable enough to ride in our minivan. Over the week, though, Rich has gotten much worse. By the time we got to his 3pm appointment, Rich was curled up in the fetal position on the exam table, shivering and faint.

Rich was admitted that evening. It's been several days of just trying to get back to where we were two weeks before. We've gotten Rich rehydrated. We've gotten his pain under control. As of yesterday, we have total parenteral nutrition (TPN) being delivered through a central line. So we're hoping Rich will be better each day.

We found out today that we can't have surgery until Monday the 23rd. So we have almost two more weeks of waiting around. It's going to be a little rough. But it will allow Rich to be as healthy as possible before major surgery.

So what about that surgery, huh? How did we go from two attempts at paracentesis to drain fluid to a full repeat of our original cytoreductive surgery? Honestly, I'm not sure myself. It just kept escalating. According to the surgeon, there is a large tumor in Rich's upper abdomen, but there is also a lot of gelatin slime in his lower abdomen. We won't really know the specifics until they do the surgery, but we're okay with that since we've already learned that CT scans only show but so much.

A lot of this seems like deja vu all over again. But we're in a slightly better place than we were 18 months ago. We've had 13 months of drug trial treatment. We know more about the surgery itself and how it works. We are at a facility hand-picked by our trusted doctor in Nashville. We understand better the support network we need for the surgery and recovery period. There are still many unknowns, but life would be pretty boring if not.

Big bellies and tiny hamsters: adventures in rare cancer treatment

I'm not even sure where to start.

Friday night, we drove to Ruby Joust, or more specifically to the hotel just off site. When we pulled up, Rich was in bad shape, shivering, feverish and with a bloated belly. He slept all day Saturday and we went home Sunday. By Sunday night we went to the ER but they were of no help other than giving Rich morphine and a bag of saline.

We flew to Nashville on Tuesday and it was a tough time getting there. Rich hurts so badly he needs a wheelchair to get through the terminal but wasn't fully aware of just how necessary it was. I had to go on a hunt for a chair while I left him in the food court. Our flight was delayed three hours but we made it.

Wednesday we did the CT scan in the morning and blood work at Sarah Cannon. We met with Dr. Bendell and she was very concerned. Rich is normally very jovial and chatty on his visits, showing pictures of Ian and asking how all the nurses are doing. Everyone was on high alert when he came slowly walking in, wincing with every step.

We tried to drain some of the fluid off of his belly in the imaging unit (where they use ultrasound to find a good place and then insert a drainage tube to suction it off). Because the fluid is so "locular", meaning it's separated out by little bits of connective tissue like large pockets of bubble wrap, it's hard to get much out from one small opening. We drained 350mL (the same as a soda can) or so but it didn't provide much relief.

Dr. Bendell then wanted to have Dr. Richard Geer (not even making that up) try a laparoscopic surgery to see what he could remove. He looked at the CT scans today and felt like it was not something he could do. Dr. Bendell is leaving for a conference today but spent all morning on the phone calling around to find the best surgeon she could to help Rich. Meanwhile, his nursing team got to work ordering scripts for morphine and zofran. I have so many pill bottles in my purse right now. So many.

Between 7:30 and 9am this morning, the Sarah Cannon angels found us a surgeon. Dr. Perry Shen at Wake Forest Hospital in Winston-Salem should be able to do a "debulking" surgery for us next Friday (June 6). We're flying home today, Rich is doped up on morphine, and his hiccups are gone for the moment. (Edit: Hiccups came back as soon as he woke up.)

The hiccups, man. They are just a constant sucker punch. He hiccuped all night last night. All night. We have tried every home remedy imaginable. We have tried reglan (stomach-emptying med), baclafen (anti-spasmatic), and zofran (anti-nausea). The oxycodone doesn't stop them and only maybe does the morphine stop them. This happened after the surgery 18 months ago. It also happened after his eardrum reconstruction in the Army. So apparently this is how his body processes stress.

The tumor/slime itself has actually shrunk in the last nine weeks. That's great news! So we all wonder if this fluid is a byproduct of the tumor shrinking. This slime isn't going out without a fight. So while over the long haul good things are happening, the short term course is dark.

Rich is in a lot of pain. He's not sleeping well at all. His entire abdomen is very tender. It's a struggle to eat since so much fluid is pushing on his small bowels. This is worse than post surgery. But we just have to make it through the next week and then we'll know a lot more about the territory in his belly.

We're keeping folks in the loop as we know things through Team Stryker on Facebook. I'll blog as often as I can, but it's going to be on a delay.

We were watching John Oliver's new show on HBO last night in the hotel. He did an entire piece on the death penalty, all the while saying it was madness to discuss the validity of the death penalty on a comedy show. But he promised that if we all stuck with him, he would show us a video of tiny hamsters eating tiny burritos as a reward. So I feel like that's our week. We are spending a week wrestling with really unpleasant things and in the end, there will be some reward.