And we're off!

Buckle up, we have a lot to cover in a short amount of time. We just returned from a lovely time at War of the Wings in "oh my God why does North Carolina have to be so wide why aren't we there yet?!" Winston-Salem. Ian's fifth birthday party is this Wednesday at the Cloud 9 trampoline park.

Then Thursday Rich and I get on a plane at 6am to head to Nashville. He's going to get his blood work done and a CT scan in preparation for starting the new drug trial. We get home at midnight.

Next week, we are flying back out to Nashville for the week. Rich is getting his first dose of the new IV drug on Tuesday the 28th. They'll monitor him all day to make sure his head stays attached. Then he'll get blood work on Wednesday. We will hang out on Thursday because no blood work is needed then. Finally on Friday, we'll do one last blood draw before hopping on a plane home. We'll land just in time for trick-or-treating with Ian. I have to figure out how to pack TPN for a week.

And then Saturday we're hosting Crown Tournament.

Once we get to November, Rich will fly to Nashville every Tuesday for lab work or IV treatments until January. Then we will finally settle into one trip every three weeks.

More updates from the road!

A new drug

Last week we got a call from Sarah Cannon Cancer Center that they wanted to see us. We assumed it was a mistake since nothing had really changed. The nurse called back, though, and confirmed that Dr. Bendell in Nashville had been talking with Dr. Lee here at home and they wanted to see if Rich was able to participate in a new trial. We had to bow out of the previous trial because it was an oral medication and Rich has a hole in his digestive track, making it hard to ensure he's actually getting the medication. At our last visit, Dr. Lee had mentioned that he thought they may be able to find a new trial that is an immunotherapy. 

There is new technology these days that helps the body's immune system combat the cancer cells on their own, versus adding chemicals to kill the cancer and hopefully not kill the patient in the process.

The concept is that in addition to be aggressive in their growth, cancer cells also transmit a signal to the immune system to tell the body's immune system that they're legit and don't need to be killed off. It's a Jedi mind trick to tell your body that they are not the droids it is looking for. 

Medical companies have developed a chemical that turns off the Jedi mind trick so that the body finally gets the memo that there are intruders that need annihilating. One of the exciting things about this drug is that in the early trials, even after the drug administration was ceased, the body continued to kill off cancer. 

We have documents for two potential trials that Rich may be able to start within the coming month. These drugs are delivered intravenously, so we don't have to wait for his fistula to heal. It's also good that once the initial test period has passed, the drugs only need to be administered every three weeks or possibly even less often. That is great news in that we won't have to either move to Nashville or fly there weekly to get the drugs. 

Dr. Bendell was ecstatic to see us and was particularly happy to see Rich looking so good. She said that based on everything she had heard from the surgery and aftermath, it was amazing he was walking around. 

We talked about what we think happened back in May that caused so much trouble. Bendell's theory is that when the tumor shrank, it left a cavity in Rich's abdomen. As "nature abhors a vacuum," natural body bacteria filled that space and it allowed a warm, wet space to go gang busters and form an abscess. It wasn't anything necessarily avoidable, just bad luck. 

That infection is removed and we're slowly making progress on healing. After the nurse handed over the paperwork, she said she would be in touch in a few weeks as soon as there was an opening in one of these trials. Rich turned to me and said, "That all sounds very promising." I responded, "Who are you and what did you do with my husband?" He smirked and then I knew it was really him. 

So even Rich is optimistic about all of this, and that's saying something. 

He said, "Based on what they all just said, it sounds like Dr. Shen thought I was going to die." I  told him, "Dr. Shen told me as much when he got out of surgery. I just never told you because I didn't believe him and it didn't seem like helpful information. And look at you, sitting here, not dying." 

Heading home from Nashville

Stuck

Things are hard right now. Rich is depressed at his increased fistula output (2400mL yesterday) and it seems to him he will never be able to eat again. It is torturous. Every commercial has food. Every social interaction involves food. Food equals love for most people, so it's as if he is being ostracized from a key part of life.

I am fraying around the edges as this all drags on. I am a single parent in addition to being a nurse. Somewhere in there I'm supposed to be an executive in a software company too. There are days I would rather dig ditches than sit in a conference room and have to use my brain when there is no brain left.

Unfortunately, there is not much help others can offer. No one else can manage Rich's fistula, wound, and IVs. I suppose someone could do our laundry. We already have plenty of food, I just don't have time to eat it until 9pm.

I patched a leak in Rich's pouch this morning three times before we punted and I took him home. I then replaced his pouch and left him on the couch to recover. Just before we went home he said that he was "bordering on despondent" over his lack of apparent healing. I have no answers or solutions for him.

This is big stuff. No pedicure will fix this.

Last night I came home to try to get the pool working again. The cover had shredded over the winter which turned the contents of the pool into a swamp. We drained a lot of it to patch a small hole (I've gotten quite adept at repairing leaks these days). I then refilled the entire pool in anticipation of restarting the pump and hopefully cleaning up the sludge in our pool. It was all ready to go last night, so I walked out and flipped the switch on the pump. Nothing. Just a strained groan.

I walked inside with my head hung low. I was ready to replace the pump. I was ready to take a sledgehammer to the pool. All the work of skimming out algae, scrubbing vinyl, and throwing thousands of gallons of water into this bucket and with the flick of a switch it didn't do any good.

After an hour or so I went back outside to take a picture of the pump so I could write a fitting eulogy for it or perhaps research a solution. When I opened the back door, I found my father gazing into the pool. He thought I was coming out just to see his handy work on the pump plug that he'd replaced with a valve that afternoon. When I told him the pump was broken, he hummed thoughtfully. He crouched down, flipped the switch and heard the groan I was lamenting. He turned it off, waited a few seconds, then jiggled the power switch on and off a few times. The pump whirred to life again.

The pump has sat for a while since it's been offline for almost a year. In that time, it had gotten to a point where the gears were in an awkward place. It's like when you stop your bicycle and the pedal is just behind top center and you can't take off again. Much like that bicycle at the curb and that neglected pump, I've felt like we're stuck. We just need someone or something to reset the switch so we can whir to life again.