Poop and Love

For those of you who found this blog through my McPharmacy post, thank you for being here! That blog post was read over 150,000 times all around the world, shared thousands of times, and caused me a bit of a panic considering my employer took notice. Now I have a bit of anxiety about future posts because I have no idea how many people will be reading them. And as I’ve proven before, my topics can vary greatly. Whereas the last one was about the practice of retail pharmacy, this one is mostly about poop. I’m sorry to disappoint you if my regular topic isn’t what you thought it might be. It’s actually a rather depressing blog about my husband’s cancer journey. But if you’re still following, I thank you and appreciate you for giving me an audience.

If the concept of dealing with your spouse or significant other’s poop is revolting to you, then maybe you should reevaluate what “in sickness and in health” means to you. Because at some point, if you are lucky enough to share your lives that long, chances are you will have an encounter with their poop. I suppose you could hire someone else to deal with it, but where’s the fun in that? Or how about the alternative of your partner having to deal with your poop? Totally humiliating, I would imagine, but I say embrace the vulnerability. It’s what draws us closer together as people. Humility is good for us.

At UCLA after my husband, Mike’s, emergency spinal surgery to relieve compression from tumor growth, he became rather preoccupied with feeling abdominally distended. His liver was growing with cancer and pressing against his stomach and abdomen so he constantly felt full. But with a cruel twist of irony, he finally felt hungry and his nausea seemed to completely abate. He wanted to eat and taste everything but any little morsel he swallowed would make his abdomen painfully distended even more. So he would order soup but just lick the spoon a little. Or he’d take a bite of something, chew it up, and then spit it out. It was heartbreakingly pitiful. With his discomfort came the desperate desire to “make room” in his GI tract by pooping. Opioid narcotics notoriously cause constipation and intestinal slowing, and Mike’s intense narcotic pain schedule was no exception. So he was asking for all sorts of laxatives to get him to go. I’ve never seen someone take so many different types of laxatives all throughout the day. He was drinking Miralax twice daily, big bottles of magnesium citrate, getting suppositories and enemas, all with little immediate effect…until it would hit. And when it hit, it was colossal. Multiple times per day.

Can you imagine having to poop lying down in bed? And with people in the room? And then have some person you don’t know “take care of it” afterwards? This became the daily situation. For the first couple days, we would call the nurse, she’d close the curtain that went around Mike’s bed, and we’d all hang out on the other side talking and ignoring the situation on the other side of the room. But the nurses didn’t always do a great job of being careful with Mike’s spinal precautions. He had to be rolled from side to side like a log in order to prevent twisting of his spine. With his anxiety about this and my being protective, I started helping with the roll while they were cleaning him and changing the bedding. We would pull one knee up and then roll him to the opposite side to keep him in a perfectly straight line, he’d be cleaned up on one side, and then we’d roll him back and repeat on the other side. You would never expect a leg to be so heavy, but yikes, a non-functional, paralyzed leg is quite bulky. At one point, we rigged up elastic exercise bands to both sides of Mike’s hospital bed to hold his knees propped up, bent in the middle of the bed, so he could more easily go to the bathroom because I was so tired of holding his legs to keep them from falling from side to side.

Anyways, after watching how the nurses did their cleaning procedure, I learned how they roll up the bed pads and sheets on one side, replace them, and then repeat on the other side. I wasn’t always impressed with their sterile procedure though, even pointing out to one nurse that she hadn’t changed her gloves before touching things. Being a bit OCD, I took over complete control of Mike’s cleaning and bed changing. I’m sure the nurses were thrilled, although I think sometimes they were a little put off that I wouldn’t let them do anything. And if you’re a nurse, I apologize, I’m sure you’re awesome at your job and I’m not intending to insult you. Nurses are amazing people and we were impressed with the majority of them. But some are better than others. And sometimes, patients or their family members just know what’s best for them, and how to better care for them than the nurses or doctors do.

I made sure our hospital room cupboards were always stocked with “chux” (absorbent bed pads), diapers, wipes, gloves, a wash basin, these cool soapy sponges, and tons of wash clothes. Every other day it seemed we went through the process of a clean-up half a dozen times if not more. I became totally immune to it and there was nothing awkward or gross about it. Sometimes cleanup was required at the least opportune times, like interrupting the middle of a physical therapy session or when a doctor visited. Mike had little control over it, and I felt so terrible for him. To this day, it is still one of the most painful memories for me, thinking about how humiliating and awkward it must have been for him and how forced he was to be vulnerable.

Mike also had to wear a pretty intense brace. It would take both me and Tom to get it on him. We’d have to roll Mike to one side like a log, then put the brace underneath him, roll him to the other side and pull it over more to that side, roll him back, then put the front on and pull the Velcro straps through and tighten it so it would provide enough support. He would wear the brace anytime he had to do physical therapy or be moved around.

Mike began physical therapy after being given just one day of rest after surgery. We really liked the female physical therapist and occupational therapist. They usually came daily and the session involved leg exercises in bed where Mike would push his feet against her hands or try to raise them off the bed. It was an absolute struggle for him just to move his feet, and took all the strength and energy he had to initiate movement in his legs with assistance. Then she would get Mike sitting up in bed and scooted to the edge of the bed. She’d put a slide board under one side of his butt then the other end of the board on the seat of the specialized wheelchair. We would all help support him and hold him up as he slid down the board into the wheelchair. He’d spend a little more time each day in the wheelchair doing leg strengthening exercises. Sometimes we’d go down the hallway, dragging his IV pole along with us and go look at all the different polar bear and glacier pictures in the hallway. One day, we made it outside down by the fountain for a few minutes in the sun. It was always a little intimidating getting Mike back to the bed from the wheelchair, though. We’d get the chair as close as possible to the edge of the bed and move the armrest, then Mike would have to use his arms to lift himself as we all helped him over to the bed. He’d be completely exhausted after a physical therapy session and didn’t like staying in the wheelchair too long because his feet would get cold, tingly, and swollen.

Dr. Ribas came and visited Mike, telling him his CT scan prior to stopping the MEK inhibitor had showed some slight improvement. He’d also had 3 patients already who’d shown improvement in the first 2 weeks of taking the MEK inhibitor and then got worse during the 2 weeks off the MEK inhibitor. We asked him what could be done and how we could help. He said the only thing we could do was write to the drug company. I was gearing up to ask every person I knew to write letters to the drug company, Genentech, on Mike’s behalf. But before we even had to do that, Mike’s brother-in-law, Erik, wrote a letter to the Vice President of oncology research at Genentech who was in charge of the clinical trial which prompted a teleconference with Dr. Ribas. A few days later, Dr. Ribas emailed me to tell me they were moving forward with things to develop a protocol that would legally allow Mike to continue with the MEK inhibitor full time, and although it had put some people in difficult positions, Mike was worth it.

Over those few days, the doctors worked diligently to dial in Mike’s pain control and Mike worked hard on stretching his tight leg muscles. He showed slight improvement in strength to the point where he was able to bear weight on his feet for a few seconds (with us supporting and steadying him the way you might with an infant who cannot yet walk). That was a monumental accomplishment that he took tremendous pride in. It makes me cry now just thinking about how happy and proud he was to make that milestone in the hospital. Mike would get frustrated because he desperately wanting to lift his legs off the bed on his own. Occasionally we’d all get really excited about a tiny little movement he’d make in bed. Mike was also starting to have the sweats again. He had us turn the temperature in the room all the way down so everyone complained that it was freezing in there while he’d be lying around almost naked covered in ice packs. Mike kept an incredible attitude the entire time. He never complained, never got angry, never spoke with anything but positivity, and he was always polite and kind to everyone.

Mike’s mom had to go home a few days after the surgery so it was just Tom and I there. Tom would go back to the apartment and stay with Griffey at night and then come to the hospital all day. At one point, we panicked because the doctors said they were going to discharge Mike in just a couple days. I was terrified of the prospect of just Tom and I taking care of him without the hospital staff to help us. But then the occupational therapist got the delivery of all the supplies to our apartment. We now had a hospital bed, wheelchair, walker, commode, and this weird lift thing over our bed that we never ended up using. So with these necessities in place, it eased some of our anxiety and we were more ready to get out of that hospital room. But then Mike had a couple nights of intense pain and changing pain regimens which delayed his discharge again.

On September 7th, Mike’s brother-in-law, Erik, arrived. This was the new plan. Each family member would rotate coming down to be with us so we never had to be alone. It had now been 9 days since the surgery and 11 days since I’d called 911 to transport Mike to the hospital because his legs quit working. The following day, Mike was determined to “clean himself out” because he was so distended, so we spent much of the day behind the curtain cleaning up shit. But then, towards the end of the day, the doctors randomly discharged him from the hospital. Mike’s surgeon, Dr. Holly stopped by before we left to visit with him and see how he was doing. Besides talking about Husky football, he told Mike that if he’d delayed surgery by another 8 hours, he felt he would have lost all function in his legs permanently. I ordered one last hospital meal of pizza and chocolate cake for myself for good measure, then an ambulance team came and lifted Mike into a gurney and I followed them down the hallway and out to the ambulance that took us back to our apartment. When you leave your home by ambulance, you don’t particularly want to return home by ambulance. But then again, I guess it’s better than not returning home at all. Tom and Erik met us there, but not before snagging a bunch of supplies from our hospital cupboards like baby wipes, diapers, gloves, and sponges…basically anything they could find that we might need. It was exciting to see Griffey for the first time in days and I think it brightened Mike’s mood. We were uncertain of how we were going to handle these new challenges at our apartment and unsure how Mike would progress. This was definitely the hardest part of the journey so far. I had never imagined things would take a turn like this. But I was prepared to do whatever I had to do and we had positive attitudes and were eager for Mike’s improvement.