On the morning of Jeff’s TACE procedure, I jerked myself awake with a start. I don’t know what exactly woke me up because when I looked at my phone it was 5:20 AM and my alarm hadn’t gone off and it was certainly too early for Nan (one of the two women who took care of me as my PCA) to arrive, but the first thought that popped into my head was “today is Jeff’s TACE procedure”. As soon as I had that thought I wanted to spit it back out like dirty mouthwash. I knew the procedure was supposed to help him. I wasn’t scared of the procedure. The way it had been explained to us, it was a very low-risk procedure and I had researched it myself. My research had confirmed the fact that it was very controlled and safe.
The only real risk was infection from the large bore IV line (central line) that they would insert into the artery in his thigh to thread into his liver. What I didn’t want to think about was the reason he needed the procedure in the first place…because he had cancer.
The few times I had brought up the cancer to Jeff he just brushed the topic aside.
“Oh, it hasn’t spread anywhere else, it’s all in one spot, they’re just going to zap it with the TACE, and then we’ll be all set.” He had said. I wanted to believe it would be this simple, but I knew cancer wasn’t always that straightforward, cancer was devious, sneaky, and insidious. Part of me wasn’t sure if Jeff was as brave as he was letting on. He knew how worried I was about him, was he trying to put on a brave face so that I wouldn’t be as worried? Was this an act so he would seem more macho. Jeff was the kind of guy that liked to be macho.
At 5:20 in the morning issues always seem weightier than then they do later during the day. I tried to distract myself from thinking about Jeff and his procedure.
I rolled over and pressed the button on my bed controller to sit myself up and glanced at my IV pole. My bags only had about three hours’ worth of liquid left in them. In a few hours Nan was going to arrive, I would hear her key in the lock, she would call out, “Good Morning Sunshine!” and she would begin my morning routine which would include taking down the old bags and prepping new ones.
I reached out my arm and grabbed the little puppy beanie baby Jeff had bought me from the hospital gift shop and cupped him to my face and gave him a kiss imaging I was kissing Jeff. I had teddy bears lined up all along the edges of the railings of my bed. Each bear had an individual name, history, and personality. They were all special to me for unique reasons.
My gaze tracked along the walls of my sunshine-yellow painted room I had pictures and cards taped up. Most of the pictures were of me, my family, Jeff, Corrie, Sarah, Nan, Jackie, Lesley, the missionaries, and the pets I’ve had throughout the years. I also had a couple of oil paintings I had painted and framed hanging up on the walls.
I had been living in the Berkshires for 9 months at that point and hadn’t been home for just about exactly a year. It was hard to imagine my old life back in Springfield anymore. So much had changed. I still had pictures hanging up of me and Corrie and Sarah, but I hadn’t seen them in what seemed like forever. It hurt that after being best friends with them from the year 2001 until 2015 they had simply disappeared from my life. I was admitted to Baystate (my local hospital in Springfield, MA) in April of 2015 and our parents had advised them not to visit me because they didn’t want to “encourage my illness”. Then I’d been transferred to Hillcrest Commons in Pittsfield, MA, and I would try to call them and they never “had time” to talk to me. Fourteen years of friendship dissolved because people didn’t want to “encourage my illness”, an illness I had absolutely no control over.
My illness had taken so much from me, it had robbed me of my childhood, my nursing career, my dignity, my independence, my ability to walk, eat, dress myself, bathe myself, and pee. My illness destroyed my relationship with Corrie and Sarah yes, but also with my dad and my extended family who leave me out of all major family events, emails, and communications. They treated me as if I somehow chose to be this way.
Jeff however treated me with complete and total respect, he was always telling me how smart I was, how brave, kind and sweet and gentle I was, how he didn’t know how my writing hadn’t made it to the bestsellers list yet, and how whatever guy I found was going to be so lucky because I was just so cute.
I couldn’t bear thinking about possibly losing Jeff to cancer, the thought was too painful, but that nagging what-if kept popping up in my head.
It’s not going to happen. I kept trying to tell myself. Stop being so dramatic. You heard the doctor. She said it’s very localized and all they have to do is zap the liver with the chemo. Jeff isn’t even worried. He will be fine, soon this will just be a bad memory.
To distract myself; I opened up my Kindle app on my phone, and began reading a Jodi Piccoult book called, “Leaving Time” which was about elephants and a girl in search of her mother, but the elephants were dying in the book, and I kept crying as the elephants mourned their departed elephant family. I read until Nan arrived at 8 AM to do my morning routine. As soon as I was all medicated, dressed, and hooked up to my IV bags and tube feeding bag, I had Nan push me up the hill and over to Jeff’s apartment, he was just leaving the house when we met him at the door. In one hand he was carrying a tote bag from the supermarket with a neck pillow, his laptop and charger, his phone and charger, and his wallet. In the other hand, he had a black and white cane. Although his face looked relaxed, I could tell he was nervous by how tightly he was gripping the tote bag.
“You’re going to do great,” I told him. Trying not to let my own fears and anxieties show through.
“Yeah, this is going to be a piece of cake,” Jeff said. “They’re going to numb me up and give me some medicine that’s going to make me feel really relaxed, it’ll be simple.”
“Yeah, you got this,” I reassured him.
“Eve is going to have me stay in a room at the main building tonight so that the CNAs can keep an eye on me,” Jeff said.
“Oh, that’s a good idea,” I said.
“Well, I got to get going,” Jeff told me, “My ride is going to be here any minute and I can’t miss it.”
“Ok, good luck Jeff, I’ll be thinking about you all day, so call me as soon as you can with an update,” I told him.
“I will,” he promised. The whole time he had been talking to me, I had noticed he had no circulation to his hands, they were a white/yellow color. He was gripping them closed on the cane and tote bag too tightly. Every other part of him was deceptively calm.
I wished I could pull him in for a hug and feel his strong muscular arms wrap around me in reassurance. As I watched him get further and further away, I felt like I was going to burst into tears. All I wanted to do was follow him and not let him out of my sight, but I knew he wasn’t coming home for hours, so I couldn’t do that.
The rest of the day I went through my usual motions, but it was like I was some sort of robot, I wasn’t really consciously aware of what I was doing. I went over to the main building, sat at my spot in front of the fireplace and wrote some sort of personal essay for one of my college courses. It passed with an A, but don’t ask me what I wrote about or what my creative process was because I have absolutely no idea. Then I wrote some sort of article for Verblio about the use of certain vitamins in conjunction with yoga practice. I researched it and everything, but I don’t remember writing it or thinking much about it. It kind of just poured out of me on autopilot. I probably talked to some of the other residents or staff while at the main building, but I have no idea who or what I said. My mind was with Jeff and Jeff alone.
All day I kept checking my watch to see what time it was. Jeff’s procedure was scheduled for 2:30 PM and he had said that he would call me from the PACU (post-anesthesia care unit) once he woke up.
Finally, at 5:40 PM my phone rang, I immediately began fumbling around in my sweatshirt pocket for my phone.
“Hello?” I answered.
“Hey Becca,” Jeff’s voice sounded rough and raspy.
“Hey Jeff, how’d it go?” I asked.
“It wasn’t too bad. The procedure itself was weird, the shots they gave me to numb me were the part that hurt the worst. Those fucking things are worse than bee stings. They tell you ‘oh you’re going to feel a little burning prick now.’ I said, ‘no I don’t roll like that, I’m straight,’ and they all laughed.”
“You’re too much Jeff, I bet they didn’t know what to make of you,” I laughed.
“Oh, they loved me,” he said.
“Of course they did, what’s not to love,” I told him.
“Oh, I had some of your heroin today,” he told me
“Wait what?” I asked confused.
“When I was first waking up, they asked me if I was hungry, and I said yes because they wouldn’t let me eat anything from midnight last night until after the procedure. They brought me a little cup of green Jell-o and I tried to eat a few spoonfuls of it, but it made me really nauseous and I started throwing up a little bit so they had to bring me a dose of that Zofran stuff to put in my IV line.”
“Oh, that heroin…Did you paint any fire engines on the hospital walls?” I asked him.
“Not yet, I was prank calling the police station first, will you be able to bail me out of jail?” he asked.
“We’ll use your cancer as an excuse,” I told him. Then we both started laughing. I was so relieved his procedure was over and he was still the same Jeffy.
Even though Nan came to put me in bed at 8 PM and I had to put pajamas on, transfer my IV bag and tube feeding bag onto the IV pole, and take all of my nighttime meds, I couldn’t let myself fall asleep until I knew Jeff was home safe from the hospital, so I kept the phone next to my pillow and forced myself to keep my eyes open until he called to let me know he was in his temporary room at the main building and he was feeling okay and just getting ready to go to bed.
About a week after Jeff’s TACE procedure, I got a call from Andrew Cohen, my lawyer from Health Law Advocates, I had been hanging out with Jeff in my room watching some post-apocalyptic movie where everyone on Earth has to move into a space station in outerspace. Jeff and I were playing cards at the same time as watching the movie in the background.
“I have good news Becca,” Andrew told me when I answered the phone.
“What is it?” I asked.
“We have a hearing with MassHealth set up for next week down in Springfield to try to get you more hours. To get it set up this quickly is really lucky.”
“That’s awesome,” I said.
“I will bring the statements we wrote up together that explain step by step what some of your routines look like and why they can’t possibly be done in the amount of time MassHealth allots people for those particular activities. I will also bring your doctors’ letters with their signatures that explain why you have to follow all those extensive routines step by step Hopefully, we get a decent amount of more hours out of this.” Andrew said.
“I really hope so, do I need to wear anything special?” I asked.
“Nothing special, maybe just a skirt and top or nice pants and a casual top. Just no pajamas or jeans with holes in them or clothes that are dirty or ripped or anything like that, and nothing too revealing.”
“Okay.” I figured I would wear my black long-sleeved top from Justice and my silver leggings with the butterfly print on them that were also from Justice.
“I’m a little nervous,” I told Andrew.
“Don’t worry, it’s not like it’s a big courtroom where you’ll be standing in front of a whole bunch of people. We’re just going to go into an office-type room where the MassHealth representative will meet us. She’ll turn on a recording device and we’ll have to be sworn in, and then we just have to read the statement and letters to her. If she asks you any questions just answer as honestly as possible. I will be sitting next to you the entire time.”
I wasn’t totally reassured, but I knew Andrew thought we had a good case, so I kept trying to remind myself of that.
“What does he get out of the deal?” Jeff asked me right after I hung up the phone.
“What do you mean?” I asked.
“Are you paying him?” he asked.
“Oh no,” I answered. “He’s doing this for free for me.”
“Ass, gas, or grass, nobody rides for free,” Jeff told me.
I cracked up laughing at that comment, but Jeff kept his face serious for the longest time before he started laughing too.
“He’s a disability advocate lawyer and works for people who are very low income so I think he must get paid by some type of government money,” I explained.
“Oh, well that makes sense,” Jeff said.
The following week my mom drove up to Pittsfield and picked me up to bring me to the hearing.
I was a mess of frayed nerves the whole drive down there, I kept adjusting my shirt in the car because it didn’t feel right, then once I got my shirt feeling comfortable, my leggings felt like they were too bunched up around my ankles. I pulled up my leggings to get rid of the bunchiness and then they were too high up on my waist, so I had to pull them back down. Once I pulled them back down they were hanging too low at my crotch. I pulled them up above my hips to get them feeling right, but when I did that my shirt got moved out of position, and was feeling uncomfortable again.
“It’s going to be okay, Becca.” My mom tried to reassure me. “The worst that can happen is that they don’t increase your hours, you’ve gone this far with four hours a day, and it’s been okay. Even if they don’t increase your hours this time you can always appeal it again. Just relax, there’s no need to get all stressed out about this.”
What my mom was saying was logical, but once I get stressed about something it’s very hard for me to turn my anxiety off. I spent the entire ride adjusting and readjusting my clothes, the temperature in the car, the radio station, and my bear Softia’s clothes and fur. When we finally arrived and my mom helped transfer me into my wheelchair I felt very self-conscious because I could swear everyone walking by was watching my middle aged mother pick me up out of the car, lift me into the chair and position me, but my mom acted like everything was fine, and assured me that most people were so caught up in their own little worlds to stop and notice things like that.
We met Andrew in front of a large pale yellow, building that didn’t really look like a courthouse. Andrew was a lot smaller than I had imagined him to be. He was even shorter than Jeff who was very slight at only 5’7. Andrew couldn’t have been more than about 5’5. He was very young-looking with jet black hair in a crew cut, a clean-shaven face, and big, chunky, framed glasses. He was carrying a briefcase that looked like it was almost as big as he was.
“You must be Rebecca Pava,” he said, waving us over with a big smile.
“And you must be Andrew,” I smiled back at him as my mom wheeled me over toward him.
“I’m Becca’s mom Vivian,” my mom introduced herself.
“Nice to meet you, Vivian,” Andrew shook her hand. “You have an amazing daughter, I don’t think I would be able to cope with half the issues she deals with on a daily basis and then for her to be able to know how to advocate for herself so well to get her needs met, that is really something special.”
“Her dad and I are pretty proud of her as well,” my mom said.
I noticed that she included my dad in that statement, and it made me wonder, did he really say that, or did he think I was a psych patient and a failure that couldn’t live at home because in my condition I was too disturbing for him to live with?
“Well, I have your statements and the doctors’ letters in here, so are you ready to go in?” Andrew asked me, breaking through my deep thoughts about my dad.
“Sure,” I agreed.
“I’ll be waiting in the car,” my mom told me, “I’m going to just be listening to one of my audiobooks. Call me when you’re done, and I’ll bring the car around.”
“Okay,” I told her, and Andrew grabbed my wheelchair and wheeled me up a ramp and into the building.
We went down a hallway with various offices coming off it and we turned into the room the hearing was going to be in. It was a small room with a whole bunch of shelves covered in books about law, psychology, and healthcare. There was a small rectangular, dark wood table pushed to the side of the room with what looked like an old-fashioned tape recorder from the 1990s on it. No one else was in the room. Andrew pushed me up to one side of the table and then pulled up a chair next to me.
“The woman from MassHealth should be arriving soon,” he told me, “She’s just running a few minutes late, she hit some traffic on her way in from Boston.”
The woman arrived about ten minutes later, by the time she got there I was so shaky that I thought the whole room was bouncing.
“Hi, my name is Janice,” the woman introduced herself, as she sat down at the end of the table and pulled a file out of her briefcase. She had shoulder-length layered brown hair with bangs and was wearing a tweed suit. Her smile was friendly and open, not at all what I expected.
When I thought about insurance companies I always thought of cold heartless men and women who never smiled and took perverse pleasure in turning down claims even though they knew they were doing incredible damage to the patient by doing that. This woman didn’t fit that picture in my head at all. She had smile lines worn into her face, when she shook my hand, she was super gentle, and when she made eye contact her eyes were bright and happy not cold, calculating, or empty.
Just like Andrew had explained, we turned on the recording device and then we all had to be sworn in, promising that we were going to tell the whole truth to the best of our abilities. Then Andrew got down to business.
“What we need to do today, is get Rebecca more PCA hours,” he explained. “She has very complex medical conditions and very involved care that simply cannot be completed in the allotted time given by MassHealth currently.”
I looked over at Janice while Andrew was talking to see how she was reacting to this. She was listening intently, looking at me, and nodding.
Andrew went on to read the statement we had worked on together that detailed all the steps it took me to take a shower and all the steps it took me to take my medications in the morning and at night. The whole time I was watching Janice who was just nodding her head and occasionally jotting something down in her notes.
After he finished reading the statement, Andrew presented the letters from my doctors explaining why it was so vital to keep my port dressing dry in the shower, making all the steps to showering so crucial, and why all of my meds needed to be given via J tube or IV as opposed to me swallowing them.
“Rebecca has a paralyzed stomach, if she were to swallow the medications, they would take days to take effect, however with gastroparesis the speed of digestion varies from day to day and even hour to hour. So, one day Rebecca could have her medication work two days after she ingested it, and then another day it could not work until four days after she ingested it, or suddenly all the medication could hit her system at once causing a massive overdose. They might now even work at all some days and just flush through her system completely. It would be impossible to keep her levels normalized if she were taking the meds by mouth.” Andrew read off the letter from Dr. Hussein, my GI doctor.
After we finished presenting all our arguments, Andrew and I turned to Janice anxious to hear what she would say. She barely thought about it for a second.
“It seems really clear cut to me,” she said. “Rebecca obviously needs more PCA hours than she was given. The complexity of her medical conditions make her very unique, the normal tools we use to determine how long an activity takes to be completed don’t apply to her the same way they apply to most consumers. I’m going to give her 12 more hours a week which will bring her up to having 40 hours of PCA care a week. I think that will be much more appropriate. The new hours can start as soon as today.”
All that anxiety and worrying lifted off of my shoulders, I felt like for the first time all day I could breathe easier again. This was even better than I thought it was going to be. I looked over at Andrew and grinned, he smiled back at me.
We did it!