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!


Upon finishing my first half marathon

This is all about my running so feel free to skim unless that’s your thing.

I signed up for the Crawlin’ Crab 5K over six months ago, but wanted to try to push myself a little bit. I can run a 5K but much further than that and my blood sugar will plummet. I couldn’t imagine the rolling suitcase of snacks I would need to take with me for a longer run.

It didn’t take much for Kimmie to convince me to sign up for the half marathon in addition to the 5K. It was called the “shell yeah” challenge and I would get a fancy medal if I did both in two days. I convinced myself I had six months, so I could figure it out.

And then Rich got sick. Memorial Day weekend I was only set to run five miles in my training schedule and from that moment hardly any running got done. As the summer wore on, though, I really needed something to bleed stress.

Dan at work convinced me to get a new Garmin watch that had lots of fancy features in it. It was a small fortune which pained me to spend, but I love this watch dearly. Dan (and Curtis) also convinced me to try Galloway‘s run/walk method to gain distance without the nasty side effect of hypoglycemic death.

And suddenly everything became clear. The reason my blood sugar was tanking was because I was over-exerting myself. My poor heart rate was way too high and that was trashing my everything. So now I run for a minute and walk for 30 seconds. Or sometimes I run for 30 seconds and walk or a minute. It all depends on what I’m trying to accomplish that day. I went from barely being able to finish a 5K, to running 10 miles around my neighborhood with no ill effects.

And this past Sunday, I finished my first half marathon. It took me three hours, seven minutes, and 28 seconds. I totally don’t care about my pace because I finished with a blood sugar of 125 and never went low on the entire course. I also have no knee pain at all.

Running is supposed to be about improving your pace, but I don’t really care (or at least I don’t care very much). That’s probably for the best because I was just reading that one can only hope to gain 3-5% in speed over a 16 week training cycle. That would mean my next half marathon would be eight minutes faster over the entire course. That’s hard to get excited about. Nevermind that one porta-john stop could add those minutes right back.

So my metrics are all about my heart rate for the moment. I would like my running heart rate to be lower so that I can run for longer. That will improve everything.

I have noticed that my body is responding well to all this running. I have hip muscles now. I think they’re called iliopsoas. I also have what I have defined as a “was butt”. It might be the tensor fasciae latae but it’s that little plum-sized dimple on the outside of your butt when you flex it, where you used to have butt until you flexed it away. I’m no medical professional, so I’m sticking with “was butt” for now. I did find a classical example.

wasbuttclassical

That lady on the right must have just finished a half marathon as well. They all just recently stripped out of their sweaty sports bras and shorts.

As for me, I am continuing my quest for a righteous “was butt”, some sculpted hip flexors, and calves you can bounce quarters off of. Oh, and my feet are ridiculously strong now too, which I didn’t even know was a thing. I’m doing the Harbor Lights 5K and half marathon on November 22-23 and I also signed up for the Shamrock 8K and half marathon in March. Wish me luck!

Calves of steel


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.


Enterocutaneous fistulas 101

I’m going to explain the mechanics of Rich’s fistula without showing pictures of his flesh. I feel like this is better for everyone involved.

First, a definition. A fistula is generally a generic medical term for a leak between any two areas in the body that wouldn’t normally connect. It can either be a connection to some other place inside the body or a new opening in your body. For example, women in developing nations who labor for multiple days without medical assistance frequently get vaginal fistulas from the baby’s head pressing in the birth canal for way way way too long. It leads to an abnormal connection between the vagina and either the rectum or the bladder. Both are very bad. You could also develop an anal fistula where your rectum decides to create a new exit ramp so that in addition to your original exit path, you end up with a new leak on your butt. Also no fun and very painful.

But you can also get fistulas anywhere. You can have one where blood doesn’t flow right in your skull. You could have one in your heart where there’s a tear in an artery or something. They just mean that body fluids are moving outside their designated area because of a breach.

Rich, however, has an enterocutaneous fistula, caused when they tried to investigate inside him but the cancerous slime had stuck his small bowels to the front of his abdominal wall. They moved one little thing and his bowels tore. Now there is a hole in his intestines and it’s leaking to the outside. Sometimes that happens if the intestines end up coming to the surface of the skin (like nature’s ostomy). But in our case, there is a small hole in his small intestines just after his stomach and it is leaking into his abdominal cavity. The reason he’s not going septic is because it’s able to easily exit out the incision down his front as the path of least resistance. While it’s annoying to have small bowel fluid coming out a hole in your chest, it’s way better than it being trapped inside him causing infection.

Your body produces fluid in your intestinal tract all on its own. According to the surgeon, you make up to 6 liters of fluid a day. So even if you don’t eat or drink a thing, there is still lots of fluid in there. Your large intestines are primarily responsible for removing the water from your digested food. That means that the contents of your small intestines are extremely watery. It’s not quite straight water, but it’s maybe like soup stock. It only takes the tiniest hole to make a lot of output. Small intestines are very delicate, so repairing them can be like sewing together wet toilet paper. Let’s use this exam glove as an example.

glove of water

It’s health and sealed and full of water. We put a tiny nick in one finger of the glove.

small nick in the glove

Once we turn it over, the glove is empty within five seconds just from gravity.

small nick equals big leak

The output is also extremely acidic, since the small bowels are where the majority of digestion and nutrient extraction takes place. Inside the magical make up of your intestines, it’s safe. But if it leaks out, it eats away at the weaker tissues.

That’s why it’s critical to have the skin protected around the fistula exit. When Rich’s incision was still very new (and very deep in some places), the bowel fluids were coming out of all kinds of exits. It meant we had to do a lot of arts and crafts to cut just the right size opening to protect as much skin as possible. Now, we have migrated to just one opening, smaller than a q-tip, halfway between his sternum and belly button.

That’s why we have moved from the original high output wound pouch …

wound pouch (front and back)

… to a new urostomy style pouch.

urostomy pouch (front and back)

There is only enough real estate on that skin barrier to cover an area the size of your palm, but it allows more of your healthy skin to stay exposed. Hypothetically, it should also provide a better seal as it gradually goes from wafer that’s a few millimeters thick to something the thickness of a thin fabric band-aid. The flange then attaches to a separate pouch that can either contain the output or connect to a foley bag and drain there.

Seems easy, right? Take a second and look at your own belly. Is it perfectly smooth? Hairless? No creases when you lean forward? Now imagine two surgery’s worth of scar tissue winding along there. It may be a bit of a jagged valley instead of a smooth beach. It is imperative to get as tight of a seal as possible to prevent leaks. Water in any form is incredibly sneaky and will find a way to infiltrate, erode, and create its own paths. Just look at the Grand Canyon. Water did that.

The best surface to bond to is clean, dry, healthy skin. But after surgery, wound packing, and six weeks of fistula output, the skin may be anything but healthy. Now you have to decide the best course of action. A hair dryer will get the skin dry but the wafer skin barrier will not want to stick to raw skin versus healthy skin. You can add stomahesive powder to the skin which will create a barrier, but it may also allow for leaks as it is eaten away. You will need to use more of the barrier rings as well as some other random bits of wafter cut into odd shapes to fill in the valleys on the skin surface. That skin barrier is not very flexible, despite its thinness and the plastic flange makes it all the more stiff. We have to build up all the places where we can’t force the wafer down.

wafer and tape

But as the bowel fluid comes in contact with the wafer, the wafer swells and eventually turns to jelly as it’s eaten up. It’s the ostomy version of sandbags but only lasts so long.

supplies to get a good seal

You can add paste if you’re feeling particularly sadistic. It’s like medical caulk but it feels like caulk when you’re trying to pull it off. And it too is only but so resistant to the constant onslaught of acidic bowel fluid.

stoma examples

Most stomas from colostomies, ileostomies and all the other ostomies bulge away from the skin a bit so that the output will flow down from that mushroom cap into the pouch. In our case, since it’s a leak in the valley of an incision, it naturally wants to pool in that little valley versus flow out into the pouch.

All that is to explain what we’re doing these days. We try not to obsess over the milliliters of output each day because it could mean it’s healing or could mean it’s trapped inside him for a day. Or it could just mean nothing. But hopefully, the tear in his small bowel will heal and he’ll stop leaking. Then we can move on with our lives.

And if you happen to know anyone with an ostomy pouch, whether they’re the patient or a caregiver, send them a card reminding them how awesome they are at literally keeping their shit together.