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.

Too much

The nurse warned me on Sunday that Rich’s first day back in the office would be exhausting for him. She didn’t mention that it would also be exhausting for me.

I had to hook up his TPN earlier on Sunday evening so we could disconnect it before we left for the office. We took Ian to his first day at the JCC camp and that has its typical nervousness over a new place, but he was fine.

We got to the office and as soon as he walked in, his pouch from Sunday night started leaking. I had to change it while he was lying in his office. It’s honestly all a blur now, like the fog of war. I remember driving to Churchland (holy crap, Churchland!) at 9:30am to go get supplies for his pouch. I remember having my conference call with Harvard in the car driving back from Churchland. I remember being annoyed they didn’t have the supplies I needed so I had to improvise. I had cut the opening for his pouch and just as I was about to apply it, he started leaking from a new hole which made that pouch obsolete. I remember using the stoma paste out of desperation, even though I HATE it and feel like it rips his flesh off.

We went through three pouches at the office yesterday. And his pouch started leaking again at 5:30am this morning. I patched it and turned the alarm off for our sanity. We dropped Ian off at the JCC. I realized I had forgotten his lunch on the kitchen counter but “Call George!” worked so that my dad delivered it for us.

We got to the office and I had to change his pouch again. His skin is so irritated, I’m worried about it. It’s very hard to get a good seal when it’s actively bubbling fluid. It’s not quite as high output as a bubbling rock water feature, but it’s close.

My therapist Gary said that I was in survival mode and I agree. I can’t think about anything else except for fistula output, stopping leaks, and if we should get 4×4 gauze or packing strips for his lower wound care. Remember that scene when Daddy Warbucks took little orphan Annie to his mansion and said that she was going to live there? One of the attendants asked her what she would like to do first as she stared in amazement. Annie blurted out, “Well, I think I’ll do the windows first because then if it drips I can fix it when I mop the floors …” and everyone laughed. “Oh, Annie! You don’t work here. You live here!”

That’s how I feel. I spend my Saturday nights on browsing for really expensive barrier rings and wondering if I can special order them.

Rich feels like this is all directly related to coming back to work but I feel like it’s just bad luck, not having the right supplies, and the nature of the beast. If he were sitting at home, he would leak there too. The 23462 zip code does not produce more fistula output than the 23503 zip code.

I’ve tracked all his output for the last six weeks we’ve been home. Rather than see a steady decline, it’s all over the place. Since this fistula and its high output keeps Rich from being able to eat anything at all, it’s incredibly frustrating to not see noticeable progress.

fistula output

The last solid food Rich had was a McDonald’s cheeseburger on Saturday night of Memorial Day weekend in Amelia, Virginia. That was 11 weeks ago. We’re all just sort of frayed around the edges.

We did go to see Dr. Lee at Virginia Oncology. We like him so much. He said chemotherapy was something he was “luke warm at best about” and we agreed that it would only slow his fistula healing and probably not do anything to his slime. I showed him all the cell phone pictures I have from surgery and his wound care and he pondered them thoughtfully. Dr. Lee is going to confer with Dr. Bendell in Nashville and see if they can find either a trial we can do here in Virginia or an IV based trial until the fistula heals.

I haven’t had a chance to research it yet, but he said there might be hope for an immune checkpoint inhibitor that would send a signal to the immune system to kill the cancer cells on their own. There has been some success in lung cancer patients and there may be a trial we can join. In the meantime, we just measure output, do lots of laundry, and hope for his fistula to heal.

I asked Rich before I left for lunch today if he felt like his pouch was okay and he said it seemed to be. It had only been a few hours so the damn thing should have been fine, but I’m gun shy. 30 minutes later he called me saying he was leaking everywhere. I left my food and raced back to him. The fluid is so acidic that in that one hour, it had eaten away at his skin leaving it raw and red. Everything that touched him made him wince. It was just too much. Too much in so many ways.

I called the Sentara Home Care office and said, “I’m not sure if there’s such a thing as a fistula emergency, but there is now. We need help.” The manager for all the wound nurses talked me through our situation and she’ll come to the house in the morning with some new tools to fix it. I sent her cell phone pics of Rich’s incision for reference. In the meantime, we went home, removed the pouch, covered him in Desitin and towels and set him up on chuck pads on the leather couch.

I am not a religious person. I don’t believe there is some higher being that has any control over how quickly Rich’s bowel heals. It just doesn’t make sense to me. Even if that being existed, it would not be logical for it to worry over such minor details in the cosmos. But I did find myself lying in the dark at 6am, after patching Rich’s leak, wishing really really really hard that his fistula would heal. The incision wound care is cake by comparison. The slime itself is manageable for now. But three liters of acidic bowel fluid coming out of a pinhole three inches below his sternum is just a little more than we can manage right now.

We have no other choice but to manage, though, and so we do. We put chuck pads under us, we surround ourselves with towels, I bury my face into his neck and wait for the dawn to come and another day with us together.

Recouping at home today

Call George!

Who’s ready for a post that’s not about cancer?

So there I was, finishing Rich’s dressing change (we can only get but so far away from cancer topics), when there was a panicked knocking at our front door. Our new neighbor Rachel was in her PJs yelling, “The dog’s stuck in the fence and he bit me!”

I yell back to Rich (who is pantsless but with his wound covered at least) that I’ll be right back and go running out the door. I thought their dog was a girl but she said “he” so I was confused.

Neighbor's dog inverted

When I come around the corner of her house, it was her next door neighbor’s akita stuck in the chain link fence. She had tried to lift him but he was terrified so he’d nipped at her. Thankfully, it didn’t break the skin, though she will have a huge “domestic abuse” bruise on her jaw that will be awesome to explain at work.

I ran back to our house to get towels and my phone. Rachel called animal control and I called my dad.

Whenever my parents’ next door neighbor would have issues, they would call my dad for help. She was in her late 70s with young grandkids so there were always issues. It got to the point that when something went wrong (like when one of the kids locked herself in the bathroom), the youngest would yell, “Call George!”

I called the house number but no one answered. I called his cell phone but it rang and rang. That’s strange because it’s always on his belt and he always answers it. Eventually my mother answered it. I blurted out, “I need Daddy immediately!”

I heard my father on the other phone line say, “I gotta go.” and they just hung up on me. Dad came racing down the street in his 1985 (actually, 1984 maybe?) Vanagon which is like a toolbox on wheels. I ran over to tell him it was the neighbor and not Rich that needed help. He went back to his van for nippers, jumped the fence and clipped it to free the dog. I threw my arms in the air and shouted, “Hooray Daddy!”

We got the dog fresh food and water and set him up in his laundry room out of the storm. Animal control came about 15 minutes later and assessed that he could walk fine. They’ll leave a note for the owner and I left one as well. But he was smiling and wagging his tail when we left.

I thought working from home would be more relaxing.

Measuring progress one cc at a time

It’s been a rough week at times, but we are still making progress.

Sunday night, Rich left the house. We all went to Sonic for milkshakes and a diet cherry limeade for him. He didn’t have to get out of the car, but did leave our property. Monday I took him to Great Clips for a haircut. He didn’t get a washing because they don’t offer that service, but he has a lot less hair now and looks more like himself and less like a hobo. So that was a success.

Monday night was hard in that Ian didn’t fall asleep until after 10pm, I stayed up until midnight so I could disconnect Rich’s IV (the beeping scares the dog), and then at 4am Rich’s wound pouch leaked. We spent from 4am to 6:45am removing, cleaning, assessing, showering, crafting, measuring, reapplying and recovering. At 7:30am, Ian woke me up with an X-wing in my face asking if he could take it to Jenna’s.

You know when you get so tired that you feel drunk? That was my Tuesday and Wednesday. I didn’t get a chance to nap because of follow up wound maintenance and work stuff until Wednesday. When my mother called me I had no idea what day/time/planet it was. It’s alarming.

Tuesday Rich went to Sonic again. Wednesday he had to get yet another new wound pouch and that put him in a funk. He didn’t leave the house but did climb the stairs once. I also got furious with the Sentara nursing staff because they showed up on Tuesday night at 10:30pm to draw labs. I was not happy with them. She came because the labs they drew on Monday had an error but the number they had on file was Rich’s cell which is set to silent 99% of the time these days. And woe to the poor woman who called Wednesday morning saying she would be out for Rich’s regularly scheduled labs and I told her, “oh, no you’re not!” Shenanigans.

Thursday got a little better. Rich went to Zero’s with us for dinner and pinball, so that involved exiting the car. But I also got rear-ended on Thursday while trying to find a medical supply store to get more wound pouches for Rich. Thankfully, it was just a bumper mushing and the car drives fine. The lady who hit me was super nice too, so all told it was the best read-ending I could hope for.

But that was the lead up to my coming back to the house without ostomy supplies, hoping the wound nurse would show up with some emergency supplies for us and that Sentara could send someone Friday with new pouches. The Sentara nurse called to tell me no one could make it out until the next day and started in with, “In the future, it would be good if you don’t wait until the last minute to request supplies …”

I did not yell. But wow, did I give her a piece of my mind. We came home on Thursday the 3rd. We did not see a wound nurse with ANY supplies until Wednesday the 9th! That wound nurse said that the largest output she had dealt with personally was 1000cc a day and that person could only get a pouch to last one day at best. We were collecting over 2500cc at the point and I was able to keep a pouch working for at least two days, depending on the circumstances. We have been neglected as far as supplies all along and the wound nurse assured me someone would get me supplies immediately since I used the last of any pouches that would fit on the ever changing wound landscape. So don’t chide me about being unprepared or incommunicative about supplies. I am the best wound nurse in Southeastern Virginia at this point. Just bring me my small Hollister brand pouches, more 2″ ostomy seals, some foley bag tubing, some medium sized gloves, and leave the sass at the office.

I got my supplies Friday morning. And it’s a good thing because when Rich and I tried to go to Tropical Smoothie Cafe for dinner, his pouch leaked as he stepped out of the car. Poor guy just can’t catch a break. So we had to clean him up with baby wipes and let him wait in the car while we got dinner so I could take him home and put yet another pouch on him. That pouch has held so far, but I’m checking it every few hours just to be sure.

The fistula is healing because his output has gone down. It’s just moving from place to place. The JP drains (one near each hip) are empty today so everything is coming out of the wound pouch. But his large wound at the bottom of his incision is no longer leaking any output. It’s all coming out of a circle about 3/8″ across. That one little hole, though, is still producing about 1300cc as of yesterday. Much less, but still significant. Setting up the wound pouch each time is like following a moving target. Should we cover the large wound or do we think it’s dried up? How much extra wafer should we put in the incision line to prevent leaks? Should I wiggle around and see if I can get the JP drains to collect again? I felt like I was doing well last night that it only took me about an hour to replace the pouch. Needless to day, my back is killing me from leaning over him for that long. I have to wear a head lamp, put my left ear on his dick and then peer up into the wound to assess how it’s doing. All part of the job description.

All the medical troubleshooting is not that bad, actually. The hardest part of all this is the emotional toll. No one likes to pull tape off of someone if he looks like it’s taking his entire spirit along with it. That said, I was super proud of Rich last night. When his pouch leaked spectacularly as he stepped out of the van, I expected that to send him into a spiral of depression but he was a trooper. He walked in the house, took his shirt off, and casually watched TV while I worked. It was such a relief, at least as much as an emergency pouch change can be.

Today was good. We took a trip to Atlantis Gaming store for the latest D&D starter set and some Star Wars miniature game ships. He hung out in the car with Ian while I went into Home Depot for wall anchors. All told, we were out of the house for about two hours. I have a new policy where he has to cross the threshold of the house and go outside at least once per day. It can be to the end of the driveway or further, but he has to leave the house. So far so good.

This whole update was mostly a brain dump, but I just wanted to get it all logged before I forgot.

Ian has been great through all of this. He just wants to hang out with us, in whatever form that takes. He squeezes onto the twin bed in the office with Rich to watch TV. He brings his Nintendo DS or iPad to the stool next to the bed just to be near Daddy. He could not care less about the tubes. It just goes to show that more adults should take their cues from kids on how to deal with stressful situations.

Chillin' with Daddy