“You’re going to need someone to replace Nan,” Rhonda explained to me the same day she told me that she would take care of firing the PCA that I had connected with and loved so much. The whole situation just dropped me into a low. Ever since Nan had broken her foot she had stopped showing up for work on time and then some days stopped showing up for work at all. I knew Jeff had been right when he urged me to make the call to Rhonda, my contact at Adlib, the agency responsible for managing my PCA program, but I hated that I had to do it.
I would miss going to the Berkshire Museum with her, having her push me down the street for walks in my wheelchair where we would stop and say hi to all of her friends on the way that quickly became my friends too, like the old man with his obese lazy dog who loved to explain to me that he had a clock on his house because it helped the neighborhood kids know what time they had to go home for dinner, another younger man who wore lots of chain jewelry and enjoyed getting a tan, a middle-aged woman with a puffy upper lip who loved to show us pictures of her children.
Nan would pick flowers for me on our walks, sometimes even ones that were growing in other people’s yards and we would have to grab them really quickly and then rush away pretending we’d done nothing wrong.
When we got back to my apartment we would set up bouquets of fresh flowers in every room.
I would miss our heart-to-heart talks about dealing with our crushes, our families, our pets we missed, and my illnesses and how I refused to let them ruin my life.
But I needed someone that I could count on to show up on time and be there every day, my life literally depended on it.
After we fired Nan, Rhonda showed me how to log on to the PCA directory and search for PCAs trained in feeding tubes, central lines, catheters, and medication administration, and such. After a few days of searching where Jeff took care of me on the shifts that Jackie couldn’t, I found a PCA named Lauren. Lauren was a petite young woman with blonde hair that she wore in a ponytail and black square-framed glasses. She explained to me that she had a four-year-old son with some behavior issues and that he would be the only reason she might ever have to cancel.
“We’ve been having so much trouble finding a pre-school or daycare that will keep him,” she explained to me. “His behavior just gets so bad. He hits the other kids, takes their toys, bites them, spits at them, and refuses to share. So far he’s been kicked out of four different daycares and one Pre-school.” She shook her head. “I’m at my wit’s end, I don’t know what else to do.”
“Well if you are ever having an issue finding childcare, you can always bring him here,” I suggested.
“Are you sure?” Lauren asked me skeptically.
“Yeah, I love kids,” I told her.
Kids always seemed to get along great with me, and I had so much fun entering into their world and playing with them. One of my favorite things to do was to play with my Build-a-Bears with kids, as long as they weren’t too rough or messy with my bears. I would have a near heart attack if anything ever happened to my bears.
Lauren began working for me at the beginning of August. Lauren didn’t even get offended by Jeff’s sometimes off-color sense of humor. The three of us had a lot of fun hanging out as Lauren got all my care done. She only brought her son in once.
She hadn’t been exaggerating about her son being a little terror. As soon as he got in the room he went straight for the shelf of my occupational therapy sensory toy stuff. He grabbed a squishy gel toy off the shelf and began squeezing it and shaking it so hard that it popped and the gooey jelly stuff was dripping all over him and all over the floor within about two minutes of him entering the bedroom.
“Umm, let’s not touch anything else until we get your hands cleaned off,” I suggested to him.
“What did you just do Sammy?” Lauren demanded.
Sammy spun around giggling and then wiped his gooey hands all over her clean Minnie Mouse scrubs.
“Sammy!” she yelled. “That’s it you’re on time out! Come with me, out of this room, you’re going to stand over there in the corner for a five-minute time out right now.”
“Fuck you!” he cried out gleefully.
I was shocked to hear those words come out of such a little mouth, I had never heard a kid that young swear before. Jeff was just sitting there laughing.
But then Sammy was going toward my build-a-bears with the goo-covered hands and my heart was caught in my throat. Instead, he grabbed a rubber ducky out of my collection of rubber duckies displayed on one of my shelves and squished its head into its body so that you couldn’t see its head anymore. There was a rim of blue goo left on the rubber ducky as well too.
Lauren scooped him up in her arms just then.
“You can’t do that,” she told him. “That’s not okay. Becca was nice enough to let you come into her room and visit with her and now you’re ruining all of her nice things. Say you’re sorry to Becca for breaking her toys.”
“Fuck you,” he said again and laughed again.
“I’m so sorry,” Lauren apologized as she held Sammy. “He just doesn’t behave. I’ll pay you for the toys he broke and I won’t bring him again.”
“You don’t need to pay me,” I assured her, but didn’t say anything about her not bringing Sammy again, I never wanted that kid in my house ever again. He was a little monster, and I hated to say that because I loved kids usually, but this kid was completely out of control. There was something seriously wrong with him.
“That kid has some serious spunk,” Jeff told me after Lauren left with Sammy.
“Well that’s a nice way of putting it,” I told Jeff.
“He reminded me of me when I was a kid,” Jeff told me.
“I’m sure you were quite the handful then,” I told him.
“My second-grade teacher chased me home from school once,” Jeff told me.
“Wait, what?” I asked.
“She thought I was being disruptive in class so she made me stay afterward, but I didn’t want to stay, so she said, ‘I dare you to try to leave this classroom,’ so I left school and ran home, and she ran after me. I ran all the way to the print shop that my dad owned and my mom and dad were both there and they looked at my teacher like she was crazy and asked her what the hell she was doing. ‘He was supposed to stay after school’ the teacher told them. I told them she dared me to leave. My parents laughed at her and told her she should stay at school where she belonged, gave me a snack, and walked me home!”
“That’s too funny,” I smiled.
“Yeah that teacher was a bit of a whack job,” Jeff told me. Then Jeff paused like he was going to say something, picked up the remote for the TV, put it down and cleared his throat, and then picked it up again.
“Is everything okay Jeff?” I asked.
“Yeah,” he said, but he had a faraway look in his eyes.
“If you’re thinking about something and afraid to say it, just spit it out. We’re best friends, I tell you everything. It’s only fair that you tell me everything too.
I saw a flicker of something pass behind Jeff’s eyes, watched him nod imperceptibly, and then he spoke.
“I have another appointment coming up at Umass Memorial,” he told me.
Suddenly the room temperature seemed to have dropped about twenty degrees.
“It’s with the oncology doctors and the transplant team, do you want to come with me?” he asked.
“I’m definitely going with you,” I told him before he even finished asking me the whole question.
I could hear Jeff let his breath out, I wondered if he had realized he’d been holding it.
In the week before his appointment, we didn’t really bring it up. We laughed and hung out with Jackie and Lauren, we went on our walks to the nearby convenience store to get iced tea for me and candy and subs for Jeff which we brought back to enjoy while we watched movies in my room and played monopoly online, played cards, or played video games together, we went over to the main building to tease Terry and for Jeff to get food that he always complained about and rarely ate and to talk to our friends over there and the missionary friends took us out as usual on Tuesday, we went to Dottie’s coffee lounge where I got tea, Jeff got a pastry and they got lattes and we just chilled there for several hours talking and laughing.
Thursday finally rolled around and I packed a bag with my laptop, phone, chargers, cards to play with Jeff if we had time, and a couple of flash drives with movies. Jeff came over while Jackie was getting me ready as usual. We had him stay out while Jackie got me changed and then let him in to join us. Once we were all ready to go, the three of us headed down to the main building to wait for Jeff’s ride.
The drive down was long but uneventful. Jeff was unusually quiet, and that told me a lot about his mental state. I didn’t want to pester him so I quietly went on Facebook and checked out my support groups while I let Jeff have some time to himself.
“Want me to get you an ice cream from the cafeteria?” I asked Jeff when we finally arrived. He tended to spend his whole SSDI check at the beginning of the month on stuff like parts for his remote control cars, flash drives and other tech gadgets for his computer, and other hobbies of his, but then he would always run out of money at the end, so I usually like to help him out when I could toward the end of the month. He loved to get me presents at the beginning of the month so it was only fair.
My attempt at cheering him up with ice cream was unsuccessful though.
“Maybe after the appointment,” he mumbled.
We walked through the maze of the huge hospital past elevators labeled A and 1 and everything in between. Finally, we made it to the oncology clinic which was our first stop.
“There’s a shadow on your liver,” the oncologist explained. Jeff just nodded his head without showing any signs of being upset or having any change of emotion. I sat there feeling like the bottom had dropped out of my world and I was about to go plummeting downward.
The oncologist turned to her computer and pushed a few buttons pulling up a scan of Jeff’s torso, she pointed to a cloudy white part that to me looked no different than any other cloudy white part.
“This is where the shadow is, it may be nothing to worry about, but it may be something. I’m going to refer you to a GI doctor to see what they make of this shadow. The doctor you will be seeing is Dr. Xander, he is more local to you guys.”
Jeff was still just sitting there nodding.
“What happens if it is cancer?” I asked
“We’ll cross that bridge when we get there,” the oncologist told me.
“But is it treatable?” I asked, barely able to bring myself to ask the question because I was so scared of what the answer would be.
“We won’t know until after we determine if it even is cancer,” she explained to me.
I just nodded.
As we walked toward the appointment with the liver transplant team, I could think of nothing except obsessive worrying about what would happen if the cancer was back.
“Hey Jeff, nice to see you again!” the receptionist greeted us as we took our seats in the waiting room for the liver transplant clinic.
“You know her already?” I asked Jeff.
“I know everyone here already,” he explained to me. “I’ve been waiting for my liver transplant for more than five years.”
We only waited about five minutes in the waiting room before a medical assistant came to the door of the waiting room and called us in.
“Hey Jeff, how’s it going?” she asked him.
“It’s going,” He smiled at her, “This is my best friend Becca, she is my co-pilot today.”
I forced a smile, Jeff was always such a smooth talker, I couldn’t help but smile around him.
“Well, you and Becca can come right this way so that I can get your weight and take your vitals,” the medical assistant told us.
Jeff and I followed her in, Jeff stepped on a scale just inside the door and I couldn’t help but notice that he’d lost a couple of pounds since the last doctor’s appointment we’d attended together. Another little alarm went off inside me.
After she weighed Jeff, the medical assistant led us to a regular exam room and pulled over a blood pressure machine. She checked Jeff’s blood pressure, heart rate, oxygen level, and temperature, all of which were actually better than mine, then she told us that the provider would be in soon.
I was impressed by how fast all of the nurses and doctors were. Within only about ten additional minutes a young blond woman in mint green scrubs entered the room.
“Hey, Jeff, how are we doing? Still laying off of the Molson Ice I hope.” She smiled at him warmly as she teased him.
“No more Molson Ice for me, Becca would have a fit,” Jeff told her. “My party days are over.”
“And is this lovely young woman by your side, Becca?” the woman in green scrubs asked.
“This is my best friend Becca,” Jeff said.
I smiled and waved,
“Hi Becca, my name is Sarah, I am the nurse practitioner on the team that helps people going through the process of waiting for, receiving, and recovering from, liver transplants. Jeff and I go way back.”
“Hi Sarah, nice to meet you,” I told her, hoping that she had some magic answers for Jeff and me about this shadow on his liver and somehow feeling jealous about such a beautiful able-bodied young woman commenting about the two of them going way back
“So how have you been feeling Jeff?” she asked him.
“Fine,” he said, shrugging his shoulders.
I smiled, knowing that she wasn’t going to get much more of an answer than that out of him about his physical symptoms.
“Things are looking good as far as your liver function goes, your numbers are actually improving somehow, and you’ve gone over a month without needing a single paracentesis (the treatment where they numbed him up and put a needle in his abdomen to drain the excess fluid build-up, also known as ascites, out of his abdomen that backed up in his belly because of his liver failure).”
“I’m like a cat, I have thirteen lives,” Jeff told her with his famous devilish little smile.
His smile made me smile as well, I had to admit, he was pretty amazing.
“Are you having any pain?” she asked him.
“No,” he said. He always said no, but I knew sometimes he had to be in pain and was just being too macho to say anything.
“Are you nauseous?” she asked.
“Maybe a little,” he said. “Sometimes my lactulose makes me throw up,” he added,
The liver is normally in charge of metabolizing toxins out of the body, because Jeff had liver failure he couldn’t get rid of these toxins so he would end up with a build-up of them in his bloodstream. One of these toxins is called ammonia. To clear it out of his body he had to take a medication called lactulose which causes the ammonia in the tissues of the body to pass into the GI system to be pooped out, it also slows the production of ammonia in the intestines. Lactulose also has a major laxative effect which causes the ammonia levels in the body to decrease.
Jeff hated the lactulose with a passion. It was a nasty liquid that tasted disgusting and was super sticky. Once you touched the lactulose, anything else you touched was also automatically sticky. Jeff was a major clean freak and this drove him nuts. Jeff also hated the diarrhea the Lactulose gave him, it would get so bad that he would be afraid to leave his apartment for the first few hours after he took his dose. Sometimes he would skip a dose when he knew he had to go somewhere just because he wouldn’t be guaranteed close enough proximity to a bathroom.
He confided in me, that he’d even had accidents a couple of times because of how severe the diarrhea from the lactulose got.
“Never trust a fart,” He told me with a very serious face. “That is a very grave mistake to make.”
I completely understood, with being in a wheelchair and having limited mobility and GI issues, I shared with him the story of when my mom picked me up at Hell-Crest Commons to break me out for a little while. She brought me to Walmart where I picked out a new T-shirt and we were in the check-out line when I couldn’t squeeze my butt cheeks together long enough. To my horror, poop began to leak out of my behind, through my underwear and leggings, and onto the pad on my wheelchair. Shame spread across my face when I realized what had happened. My mom went back, bought a new pair of leggings in my size, paid for them, and then took me into the handicapped stall, threw out everything that was soiled, helped me wipe, and then put me back in the wheelchair. On the car ride on the way home, my dad noticed I was wearing different leggings, and we told him I had just decided that I liked the new ones so much I wanted to wear them home. The story made Jeff smile.
I was always after Jeff to take his lactulose, when he didn’t and his ammonia level got high he basically acted and felt like he was intoxicated. At first, this was fun for him and slightly entertaining for me, but as it continued he would get angry and mean, and then if it were to continue he would become combative and agitated then comatose which could proceed into a state of complete coma and then death if it were to persist.
When Jeff or I realized his ammonia was getting high he would have to take extra lactulose, a lot of times it was when he took extra lactulose that he would get nauseous and then projectile vomit. It would literally spew out of him and launch a good five feet away from him with a heavy stream, and it would be a really large amount of vomit. Jeff took projectile vomiting to a whole new level.
“How much lactulose are you taking a day?” asked Sarah.
“Uh, I don’t know, enough,” Jeff told her.
“He’s taking 30 ml three times a day,” I told her. “Sometimes he forgets the afternoon dose at noon, but I always make sure he takes it before the nighttime dose is due.”
“I’m glad you have a good woman looking out for you Jeff,” Sarah told him.
“She makes sure I behave myself,” Jeff smiled.
“Now I know she’s something special because that is not an easy thing to do!” Sarah jibed at him.
“She knows if she takes care of me, I’ll take care of her when all of her PCAs randomly stop showing up and she’s too nice to fire them.”
“Well, Nan was really nice to me,” I protested.
“Nice doesn’t matter if she’s not showing up,” Jeff shot back.
“The only reason she wasn’t showing up was because of her broken leg, she would have started showing up again,” I insisted.
“Yeah, after I took care of you by myself for 6 weeks,” Jeff said.
“You two fight like an old married couple,” Sarah laughed at us.
We just laughed along with her, I didn’t bother to correct her and explain that we were just friends, I noticed that Jeff didn’t either.
How many stools do you have a day?” Sarah asked him
“Like three?” Jeff guessed.
“You should be having three to four loosely formed stools a day, would you say that’s happening?” asked Sarah.
“Yeah,” Jeff said.
“So I have to tell you guys something.” Sarah began.
I could tell by the tone of her voice that it was something that was going to be difficult for us to hear. My stomach lurched.
“You are towards the top of the transplant list, Jeff. This means that any day now you could get a call telling you that you and your mom, who is going to be your primary caregiver after the transplant and who will drive you here, need to make your way here as fast as possible for your liver transplant. However being at the top of the list could mean you’re going to get a call for your transplant in five minutes, or five years, and you just got done talking with the folks in oncology right?”
Jeff nodded.
“The transplant team has a rule that if you get diagnosed with cancer more than once then you get taken off of the transplant list.” She explained.
My heart landed in my lurching stomach with a thud.
“That means if this shadow on your liver that Dr. Swizzer found turns out to be cancer we are unfortunately going to have to remove you from the transplant list.”
“So I wouldn’t get my new liver?” Jeff asked. The laughter was gone from his voice, but he didn’t look as distraught as I felt, just confused.
“Sadly, no,” explained Sarah.
“But you did say his liver is improving right?” I asked, leaning as far forward in my wheelchair as I could manage.
“Well yes, but-“ Sarah began to speak but I cut her off.
“So then maybe he wouldn’t need the liver transplant anyway right?” My voice grew thin and kind of whiny at the word ‘right’. I was hanging on to this hope as long as I possibly could, I had to think that this man who in my head I was already making plans to marry was going to stay alive for me, this man who I loved with all my heart, who had saved my life several months earlier, who gave me a reason to wake up every morning, who was one of the sweetest, kindest, most creative, smartest, best out-of-the-box thinker, funniest men alive, was going to stay alive long enough for me to build a life with him and enjoy everything his heart desired that he so deserved.
“Even if his liver continues to improve, if he doesn’t get the transplant the cancer will eventually recur. His liver is just too damaged from all of the years of drinking. Jeff’s only viable treatment is a liver transplant.” Sarah explained to us.
Jeff just slowly nodded his head. I fell silent. Sarah continued to talk, but I couldn’t comprehend everything she was saying. I had understood enough. If Jeff’s cancer really had come back, he was going to die sooner than later. My heart was on a downward slide from my stomach into my shoe. It was like everything in the room had taken on a gray cast. I had to force myself to remember to breathe.
What was I going to do if Jeff died? I couldn’t even imagine life without Jeff. I didn’t want to imagine life without Jeff, it was too painful to think about, I pushed those thoughts out of my head. We were going to find a way to deal with this and keep Jeff alive, someway somehow.
“You can head to the front desk to make your follow-up appointment with the receptionist,’ Sarah was saying to us. Numbly I picked up my purse and put it in my lap and had Jeff push me in the right direction.
In the chair van on the ride home, Jeff finally let his true feelings out.
“I might as well just go to the package store and buy a 12 pack and enjoy it, obviously my not drinking hasn’t helped anything,” he said.
“It helped you meet me and become my best friend and have an amazing time with me, isn’t that worth something?” I asked him.
“Now I’m just going to die of a bad liver anyways.” He continued.
“We don’t even know if you have cancer yet,” I reminded him.
“Maybe I can buy a gun and shoot all the people that ever bullied me and then turn it on myself.” He said.
“Please don’t talk like that,” I begged.
“Maybe I can do both, I’ll get a 12 pack of Molson Ice, drink it, and then get a gun, go on a shooting spree, and then when the cops get there I’ll just shoot myself,” he told me.
I burst into tears at that point, it was just too painful to hear him talk like that.
“I love you, Jeff, I wouldn’t be able to keep living if you did something like that, I wouldn’t. It would kill me. You mean so much to me. You have no idea how much you mean to me. I have never had a friend that I’ve cared about the way I care about you before. It’s like you’re more than family to me, you have changed my life as well as saved my life, and I need you around as long as you can possibly stay around. You know how you always say that you don’t know how I do it?”
“Yeah?” Jeff looked at me, his eyes were red, he’d been crying too.
“I take it one moment at a time, even if it’s one second at a time. I put one wheel in front of the other, and I move forward because that’s the only direction I can go, I breathe in and out and I just keep forcing myself to go, and I don’t ever let myself give up. Give up is no longer in our vocabulary. You always tell me that you wish there was more that you could do for me, well this is what you can do for me, keep going forward without giving up, keep taking things one second at a time, and remember that I love you.”
“I love you too Becca,” Jeff said, and he held my gaze.
The two of us looked at each other as we drove down the MassPike with tear-stained eyes. I don’t know if either of us knew what kind of ‘I love you’ we had said to each other, whether it was a friendship ‘I love you,’ or a romantic ‘I love you,’ all we knew is that we intensely loved each other unconditionally and would be there for each other no matter what.
We were in a race against time to get Jeff a new liver before cancer struck again. Jeff stopped talking about killing himself, we were quiet for the rest of the drive.