Will Never Be Ready to Say My Goodbyes to Jeff

My love for Jeff went beyond any love I had ever felt before. I just wasn’t aware of it. What I was aware of was the fact that goodbyes are one of the hardest things in the world, and I never wanted to have to say my goodbyes to Jeff.

All of Jeff’s doctors assured us that he was at the top of the liver transplant list.  They kept telling us that he and his mom could get a call any day to drop everything and rush down to Umass Memorial Medical Center to be prepped for the most major, most life-changing surgery of his life. A surgery that could take his life span of months to a couple of years at the most, and add a lifetime onto it.

A Race Against Time Before My Goodbyes

We were in a race against time. There was a strong possibility that his liver cancer had returned. We were waiting on an appointment with a GI doctor, Dr. Xander to go over his scans. The even more frightening reality was that if his cancer actually had returned he would be immediately removed from the cancer list. I might have to say my goodbyes to him. I usually tried to put all thoughts of his mortality out of my head and just enjoy him, in the moment.

The Gift of the Present

The past is gone. We can’t change it. The future is never predictable. All we have is the present, and it’s a gift to be enjoyed not rushed away with other thoughts of other time periods that don’t matter anymore.

There was a strong possibility that Jeff might have to say his goodbyes to me before I had to say my goodbyes to him. My degenerative disease was dramatically worsening. Now I was on 2.7 liters of IV fluids a day. I was hooked up to two different IV bags 24/7. One of them was a 1.2 Liter bag of saline. It went into one port of my split lumen attached to my Port-a-cath. The second IV bag was a 1.5-liter bag that had a base of saline with potassium, sugar water, magnesium, phosphate, vitamins, and trace elements added to it. The vitamins turned the bag a radioactive yellow color.

Saying My Goodbyes to Tube Feedings

I was barely tolerating my tube feeds and quickly losing weight. 

During the months since I had been discharged from the nursing home, I had put on some much-needed weight. The problem was that I had continued to gain weight and was now on the heftier side. However, my Autoimmune-Mediated Small Fiber Polyneuropathy was progressing rapidly. I was no longer tolerating tube feedings. When I could no longer tolerate a tube feed rate of 10 ml an hour with my tube feed diluted to half strength, we know I was going to have to say my goodbyes to tube feeding.

At that point, I was only getting about 240 calories a day via my digestive tract. All the weight I had gained started to melt off.  I was quickly getting to a point where I didn’t have much to spare.

“You’re disappearing,” Jeff kept telling me.

My Mom’s Worries Over Needing to Say My Goodbyes to Tube Feeding

“Are you running the tube feeds the way you’re supposed to?”  My mom kept asking, “I’m worried that I am going to have to be saying my goodbyes to you within the next few years at the rate you are losing weight.

“The doctor ordered them like this,” I repeatedly explained to her. “When we run them faster I sit there dry heaving all day until the J tube flips into my stomach and my tube feeding starts draining into my G-tube drainage bag. So far I’ve had to get the tube replaced four times in the last month. It’s only supposed to be changed once every 3 to 6 months. Plus the tube feeds were giving me major uncontrollable diarrhea, and I had to wear children’s pull-ups all the time.”

I knew she didn’t believe me. She was thinking I had an eating disorder again, and that I was just trying to lose weight.

A Talk With Jackie

Just when I thought things couldn’t get any worse, my nurse Jackie told me that she needed to talk to me one morning after we finished my morning routine.  I was still admiring the good job she’d done on my French braids that day.

“Sure,” I told her, “we can talk”.

I never dreamed it would be anything that bad.  My whole life was made up of people hitting me with bad news.  How could things possibly get any worse?

“I’m only 24 years old,” she began. 

I just nodded, unsure where this was going.

“I need to figure out my life plan, I want to go back to school and become a nurse practitioner. To do that I have to go back to school and get an advanced degree and I really don’t think I can be a full-time student and work for you at the same time,” She explained sadly.

Saying My Goodbyes to Jackie

I felt like I was withering into a shriveled leaf.  I loved Jackie, she was so kind and funny and creative and we always had a good time together when she worked. Plus she got along with Jeff well, even when he was teasing her. She understood his sense of humor.  Jackie was always so sensitive to me and always knew just what to say to me to make me feel better, I couldn’t say my goodbyes to her too now!  I had just said my goodbyes to Nan!

Even though I kept trying to promise myself I wouldn’t cry, tears began rolling down my cheeks. Then I burst into hysterical sobs.

“Please don’t leave me, Jackie!” I begged her.  “Can’t you just work less often?”

“I really need to put myself 100% into my schoolwork,” she explained.  “I have some learning disabilities, so school doesn’t come as easily for me as it does for you, I’m going to need to devote all of my time to it.”

“But I could help you with your schoolwork,” I told her.

“The next couple of weeks are going to have to be my last two weeks.  I’m so sorry, this is killing me too Becca, but we can still be friends.  I can still video chat with you or talk to you on the phone, we can even get together every once in a while,” she assured me.

My Goodbyes Are Usually Forever

This pacified me somewhat, but the deep feelings of loss and rejection permeated my soul for weeks after. I knew she wasn’t really going to stay in touch with me. After saying my goodbyes to so many different staff in so many different care settings I knew that once they were out of my daily life, they were usually gone forever.

Searching For a New PCA After My Goodbyes With Jackie

During Jackie’s last two weeks working for me, I put tons of ads on Facebook looking for a new nurse.  I had maybe 30 different people contact me and I messaged them all back. Only about ten responded to my messages,  Out of the ten, I did make contact with, I set up interviews.  Only three or four people actually showed up for the interviews. 

One of the people who showed up was a heavy-set woman with shoulder-length blonde hair.  Her name was Melody.

Melody had a soft handshake and a gentle smile, she asked a lot of questions and actually seemed interested in my answers.  She worked at a residential treatment center for troubled children that got shut down by the state over some crazy conspiracies.

Teaching Melody About My Gastroparesis

“I have a degenerative neurological disease that makes it so I can’t eat anything by mouth and can only drink sugar-free, non-carbonated clear liquids. The only reason I can drink anything is because I have this G-tube drainage bag.”

I gestured toward the bag hung on the hook on the front of my wheelchair cushion.

“It drains out everything I drink as soon as it hits my esophagus as long as it’s thin enough. I can’t drink anything with sugar in it though, because it causes dumping syndrome for me.”

“But I thought it all drains out?” Melody asked, trying to understand everything about me and my care.

“It does, but sugar gets absorbed as soon as it hits the inside your mouth,” I explained.

“I get tube feeding and IV fluids instead of food,” I continued to explain. “I also have a neurogenic bladder from my Autonomic SFPN.”

“That’s your underlying disease right?” Melody asked.

Telling Melody About My Goodbyes to Peeing and Breathing

“Yeah,” I answered. “Because of the neurogenic bladder, I’ve said my goodbyes to peeing without straight catheters. Every day I catheterize myself anywhere from 6 to 12 times a day. The reason I pee so much is because I have a disease called ‘Diabietes Inspidus’. it’s nothing like regular diabetes, it has nothing to do with blood sugar, it just means I can’t concentrate my urine and pee constantly.

It was caused by two neurosurgeries I had. I had to say my goodbyes to a brain tumor that lodged itself on my pituitary gland a few years ago. My lungs are affected by my Autonomic SFN as well. The little air sacs that are supposed to exchange air, are all collapsed in my left lung. I also have a raised diaphragm on that left side.

On top of all that I have low lung volumes on both sides and diaphragmatic weakness. Because of the diaphragmatic weakness, even my right side can take in deep breaths. That’s why I am on at least 3 L of oxygen all the time.

Jeff Butting in With His Witty Two Cents

Oh, and I can’t get out of bed on my own. You just have to lift me out of the chair from under my arms. Then I kind of turn and pivot with you supporting a lot of my weight. Once the bed is behind me, I just need to sit down and have you pick up my legs and swing them into bed,” I told her a lot more about myself and the care I needed.

Of course, Jeff was there too, butting in with his two cents.

“She’s a lot of hard work to keep alive,” he told her.  “She’s rechargeable at least and you don’t need to keep her plugged into the wall all the time. Most of her pumps run on 9-volt batteries. You have to learn how to set her all up and charge her like you charge a remote control toy car. 

Why I Am Like a Very Durable Doll

Becca’s kind of like a Barbie doll that you have to pick out clothes for, dress, brush her hair. and pick her up and down to put her in out of bed.  One thing you have to make sure is that you keep her inflated and hooked up to her hose. Also, you got to make sure she doesn’t explode so you have to open her G-tube valve and drain her out once in a while. The other way to prevent her from exploding is to stick a tube up inside her and drain her out from there.

She’s very smart but has a developmental age of eleven and doesn’t have any common sense. It’s important to watch out for her even though she likes things done her way or the highway. But she’s pretty awesome, and my best friend. Becca is also really tough, she can handle things no one else would be able to handle in a million years.”

I would never want to say my goodbyes to her.