I woke up to the sound of her key in the lock. I opened one bleary heavy eye to glance at the time and then, when I realized it indeed was morning, opened the other.
“Hi Becca, Good morning,” Jackie one of my caregivers greeted me when she came into my bedroom the morning I was supposed to go with Jeff (my best friend and secret crush) to Umass Memorial Medical Center for his doctor’s appointment.
I wiped the sands of sleep from my eyes, reached for the controller for my hospital bed, and sat the bed up a little.
Jackie switched off my Infinity tube feeding pump and it made a really loud beeping noise. Then she flushed 30 ml of water through my J tube with a big syringe and handed me alcohol prep pads and a saline flush . She also handed me a heparin flush to keep my line patent. The last thing that Jackie handed me was a little green cap with a paper tab on it. Under the paper tab and inside the green cap was a little sponge of antiseptic. The green caps go on the ends of central lines and ports when they’re not hooked up to tubing, to keep them from getting bacteria on them.
“You ready?” Jackie asked me.
When I nodded she turned off my IV pump that was connected to my close-to-empty IV bag and I disconnected my port from it. Then I used the alcohol prep pad to swab my port-a-cath tubing. After that, I screwed the saline flush onto the end of my port, squirted the saline flush in, disconnected it, gave it to Jackie, screwed the heparin onto the end of it, squirted the heparin in, disconnected it, gave it to Jackie, peeled the paper tab off the green cap and screwed the green cap onto the end of my port tubing.
Now that I wasn’t connected to any pumps or bags, Jackie helped me transfer into my wheelchair and she wheeled me over to my dresser and closet so that I could pick out clothes. While I was figuring out what to wear Jackie grabbed a pair of gloves off my shelf near my mini-fridge and picked up the bucket at the foot of my bed.
It was filled with bags of pee from my self-catheterization kits. At night whoever was working would leave me with a bucket of about ten self-cath kits and an empty bucket. Throughout the night I would have to pee and I would catheterize myself in bed and then leave the bags that attached to the catheter in the empty bucket, that by the end of the night, wasn’t so empty.
Jackie went to go dump the pee bags and clean and sterilize the bucket. When she came back she helped me get dressed and brush my hair. I used to love doing stuff with my hair, but now I could barely brush it for five minutes before my arm got so tired that it ached and burned and I would have no choice but to put the brush down and forfeit the job to a healthy person with normal muscle tone. Jackie however, knew how to do French braids, and I used to love it when she did my hair in them.
After my hair was done, Jackie grabbed an IV bag out of the mini-fridge along with 2 vials of vitamins and a vial of intravenous Pepcid for my acid reflux, Mallory Weis tears that made me vomit blood, and hiatal hernia. She handed me the vials and the IV bag and some syringes with needles and more alcohol prep pads. I proceeded to flip off the tops of the vials with my fingernail, wipe them down vigorously with an alcohol prep pad while counting out 20 Mississippi for each vial, and then I drew up each vial in its own syringe and one at a time injected them into the IV bag.
Just like Dr. Rose said, the bag really did turn neon yellow.
I then picked up the bag and squished it around and lightly massaged it to mix it all together. Jackie had already got out the tubing.
“Can I see it now?” she asked me.
“Of course,” I told her, handing over the bag.
She took it and pulled the tab at the bottom very carefully, wiped it with yet another alcohol prep pad (we really should buy stock in those), and then spiked the tubing into it and let the fluids fill the tubing. Then she hooked the tubing to the pump and reset the reservoir volume before handing me the end of the tubing.
“Go ahead and hook up,” she told me.
I wiped the hub of my port down with alcohol while counting to that magic number of 20 Mississippi and screwed the end of the tubing into it.
“I’m hooked up,” I told Jackie.
“Okay, I’m starting the pump,” Jackie told me and pressed a button on the CADD Prism IV pump that said Start/Stop, and the IV fluids were officially hooked up for the next 24 hours.
Now that I’d been off tube feeding longer than an hour, I could take my thyroid pill. Jackie crushed up all of my morning meds, added 3 ml of hot water from the Keurig coffee maker machine, and then added in my liquid meds to cool the mixture down.
When she pushed them through my J tube she went as slow as she possibly could, but I still got incredibly nauseous to the point where my mouth was watering, I had a burning in the pit of my stomach, and I felt like I was going to puke. But that was how J tube meds always made me feel.
“Do you need a basin?” Jackie asked me when she saw my face go white with the intense nausea.
“Maybe just in case,” I told her.
She grabbed me one of the pink basins I had collected on one of my millions of hospital trips. I gripped it hard, as I sat there in my wheelchair in the middle of my bedroom, trying to remind myself to breathe.
Jackie was priming the tubing on the Infinity feeding pump and double-checking that the rate was still just set at 10 ml/hour.
“I know you’re really nauseous right now, so why don’t you take a Zofran now, and then just hook your tube into the tube feed without turning the pump on, and once the Zofran kicks in you can just reach behind you and switch it on. I have it programmed and ready to go.” Jackie suggested.
“Yeah, I can do that,” I agreed hesitantly. The idea of ever hooking up to anything going into my digestive tract was turning me off because I was so nauseous, but I knew I needed some type of nutrition going in me besides just the IV fluids. I knew the IV fluids were supposed to just be supplementation, not my full diet.
Just then there was a knock on the door.
“It’s probably Jeff,” I told Jackie.
“Of course,” Jackie smiled. “He’s like a bad penny, he just keeps showing up.” Jackie and Jeff had an ongoing playful rivalry.
As soon as I saw Jeff standing in the doorway to my room, I knew something was up. He didn’t look himself.
“Is everything ok?” I asked him.
“Yeah, why?” he said.
“You look a little…upset,” I said, but upset wasn’t the word, he just kind of looked uncomfortable. Like his skin didn’t fit him right.
“Are you worried about this appointment?” I asked him.
“No, “ he said, but he answered too quickly.
“What kind of appointment is this anyway?” I asked him.
“Oh, it’s um, about my liver,” he said.
“Is it about the transplant?” I asked.
“Umm, I don’t know, it’s just um, about my liver and with the whole team down there.” He explained. As he spoke he shifted his weight from side to side and didn’t make eye contact. I could tell he was worried about this appointment and that kind of scared me. I had never ever seen anything phase, Jeff, before. He was always cool and smooth and didn’t let anything rattle him. But now, even though we were still in the wintry part of March I could see beads of sweat forming at his temples as he stood in the middle of my perfectly cool room.
“Well, I’ll be right there with you, and I can help you ask questions or take notes, or do whatever you want me to do.” I told him.
“Take notes?” I saw a shadow of a smile dart across his face. “Do you think everything is like school?”
“Well no, but I thought…”
“It’s ok Becca, just relax, I’m just teasing you,” he smiled at me and his face was starting to look normal again.
I sighed almost audibly with relief. I was too scared for this other Jeff that was so unsure and anxious. I liked this Jeff. The one that was teasing me for taking notes.
“What time do we have to leave?” I asked him.
“Our ride is coming at 11,” he told me. “Bring your laptop, so that we can watch movies or play monopoly or something like that. It might be a long wait.”
“Are you sure they’re going to let me go in the chair van with you?” I asked him.
“Yeah, you just have to tell them that you’re my escort and then they have to.” He said.
Sure enough, when the van pulled up and I followed Jeff down the ramp they didn’t give me a hard time at all.
“I’m just going with him as his escort,” I told the driver, just like Jeff said to do. The driver just nodded, pushed me up onto the lift, and locked my chair in place on the chair van. Jeff with his black and white cane climbed into the front seat and we were off.
We’d been driving for about half an hour, when I couldn’t stand it anymore, I had to find out.
“Jeff, why did you want me to come with you today? You’ve never had me go with you before. It’s not that I mind or anything, I’m happy to go anywhere you want with you, but I was just curious.” I think part of me knew he was going to tell me something that I didn’t want to hear, but I had to know. I was going to find out an hour and a half later from the doctor anyway.
“I have cancer,” Jeff said.
I felt like the bottom fell out of my world and I was plummeting downwards headfirst.
“Did you just say you have cancer?” I asked him.
“Yeah, in my liver.”
“How long have you known? How bad is it? Are you going to be okay?” My questions were spitting out of my rapid-fire one after the other like gunshots fired in succession.
“I just found out a couple of weeks ago, I don’t know how bad it is, that’s what we’re talking about today, that’s why I wanted you there.” He explained.
“Me, why me?” I asked.
“Because you’re my best friend and you’re so smart and you know a lot about medicine and I feel like you can help make me feel better.”
His words were so touching that they made me want to cry. I wanted to reach into the front seat and hug him and cuddle with him and never let him go.
“Well, I’m glad you picked me, you’re my best friend too, and I’m here for you. I want to make sure that they’re treating you well and I want to be your support person.” I told him, trying not to cry, but halfway through the word support my voice cracked off and I started crying.
“Hey, I’m going to be okay,” Jeff told me. “I’m like a cat, so far I’ve had over nine lives and I’m still going. A little bit of cancer isn’t going to get me down. I had that seizure where they thought I was going to die and here I am. I was in a coma and the doctors told my mom I wasn’t going to make it, She was so sure I was going to die she gave my sister my Jeep, that brat! And here I am. I fell out of a pickup truck headfirst when I was 18 and here I am. I had my bowels explode and I needed emergency surgery about seven years ago the doctors stole my belly button in that surgery. Jeff always loved picking up his shirt to show me the zipper of a scar where they had filleted him open in emergency surgery to remove a ruptured appendix and clean out exploded bowel. In the process of stitching him back together, his belly button had disappeared. When he showed you his absent belly button he would exclaim, ‘those bastards stole my belly button! I survived and here I am. So don’t you worry I still have a whole bunch of lives left.”
When we got to the hospital we had to follow a maze of letters and elevators and hallways. Finally, we arrived at the oncology clinic.
“How are you doing Jeff?” The oncologist asked him. Jeff had hidden all traces of worry at this point and was sitting next to me in a grayish heavy-duty plastic chair next to my pink Cadillac wheelchair, in a small exam room with an exam table against one wall, and a desk with a computer where the oncologist was sitting in a rolling black office stool.
“Well, if I didn’t have cancer I’d be doing a lot better,” he joked.
“Yeah, I know,” the oncologist said. “Who do you have with you today?” she asked.
“This is my best friend Becca,” Jeff introduced me, “She has been through hell with her own medical issues. She can’t eat anything, she can’t walk, she can’t pee without catheters, she’s got a whole bunch of tubes, but she’s always nice to everyone and she’s even written a book, has a writing job, and is almost done with college for writing.”
“Hi Becca,” she greeted me.
“Hi,” I replied, cheeks burning from the glowing introduction Jeff had provided me with.
“Don’t let Jeff fool you,” I said, “he’s a pretty amazing guy too. He has liver failure and apparently now cancer too and he used to be a car mechanic and computer technician on cars and instead of letting all of that go to waste and just lying around and feeling sorry for himself he gets these remote control cars and completely reprograms them gets them to do all of this super cool stuff that in a million years most people wouldn’t be able to figure out how to program them to do it to get it, and then he lets his nephew and neighborhood kids play with them even though he’s put hours of labor into them and spent tons of money because he knows the kids will really enjoy them.”
“Well I think the two of you are both pretty cool people and a very cute couple,” the oncologist said.
“Oh we’re not a couple we’re just friends,” I quickly explained.
“Oh I’m sorry, I shouldn’t have assumed..oh, er, uh” the oncologist stammered as crimson blossomed on her already slightly ruddy sun warmed cheeks.
“Oh it’s ok,” Jeff smiled, “she’d be quite the catch wouldn’t she ?”
This time I could feel my own cheeks flush.
“I’m sorry you have to deal with so many difficult health issues, both of you.” The oncologist said. Then she turned her attention back to the matter-at-hand. “You have a fairly large lesion on your liver. You can see it right here on the MRI,” She pointed to the screen on the computer in front of her, Jeff and I squinted at the image not really knowing what we were seeing.
“The location it’s in makes it too hard to operate on so the plan is going to be to do something called a “TACE procedure”. We will take you into Interventional Radiology Jeff, give you some sedation, numb you up, and make a very tiny incision in your thigh, then we’re going to thread a very thin catheter into an artery in your thigh up into your hepatic artery in your liver, then we’re going to put some chemotherapy drugs into that catheter which will go directly into your liver, after that we’ll plug up that artery so that the chemotherapy medications can stay close to the cancer in the liver and work against it.” The oncologist explained.
“How good are his chances at recovery with this procedure?” I asked.
“Well it’s really impossible to say,” she said.
“But you must have some idea,’ I persisted,.desperately wanting her to tell me, ‘oh yes he has a 99% chance of recovery with this procedure, it’s almost certain that he’ll be fine afterward.’ But she refused to give me a solid answer.
“Does he have to stay at the hospital overnight to have this done?” I asked.
“No, it’s a day stay procedure,” she said. “But he should be watched closely at night after he goes home.
“You should probably tell your mom or Eve about that then,” I told him.
“I could just stay with you,” he suggested.
“I don’t think that would work, where would you sleep?” I asked.
Jeff just smiled and shook his head, I totally didn’t pick up on that cue.
“Has the cancer spread anywhere else?” I asked the doctor.
“No, luckily we caught it early, and it’s very localized, as long as this TACE procedure clears the cancer from his liver he shouldn’t have any further issues.”
On the way home Jeff was very quiet.
“Are you nervous about your procedure?” I asked him.
“Nah, I got this,” Jeff told me, but I watched him play with the hem of his sleeve over and over until a thread broke loose.
My heart broke for him, and for me. I was terrified that I was going to lose the best friend I had ever made in my life. He listened to all my worries and never judged me for them, he never made me feel stupid no matter what. He told me all of the time what a wonderful person I was. He was sweet and sensitive and fun. He had a great sense of humor, He was creative and thought outside the box. Whenever we were together we could always think of something to do that was entertaining. . When I was feeling sad or anxious he knew exactly what to do or say to put me in a better mood. He made me feel valued. Now he had cancer. I was terrified of losing him. I didn’t even want to think of or entertain that possibility, I couldn’t. It was too painful. Why did life have to be so cruel?