Chronically Alive

Now that I was all set up with a brand new primary care doctor that had no grand plans of putting me in a nursing home or trying to kill me, I was able to start getting excited about my birthday.  Jeff and I were told that we didn’t have to do anything to prepare for it.

“I’ve got it all under control, you shouldn’t have to plan your own party,” Jackie had insisted while she was setting up all of my IV and tube feeding bags on July first, the day before my birthday.

“But its going to cost money, I can’t have you spend all of that money on me,” I insisted.

“Nan is helping with the money, so is Jay, and so is Greg, because we’re all chipping in its barely costing us individually anything,” she insisted.  “I can’t let you and Jeff spend your own money … Find Out What Happens Next

When we arrived at Onota lake for my birthday party, Jackie took all of the food out of the car first.  Before going to the lake we had stopped at our local Big Y grocery store to pick up everything for the party.  Jeff had gone in with her and I had waited in the car.  They came back out with a big huge vanilla cake with vanilla buttercream frosting. In blue lettering, it said “Happy Birthday Becca and Jeff” on it, and then it had a bunch of blue and green flowers swirling the edges of it, I thought it looked beautiful.

Jeff had said he would hold it in the backseat so that nothing would happen to it.  I had let Jeff pick out the type of cake we got because I couldn’t eat it anyway.  They had also picked up a fruit plate with strawberry dip, a … Find Out What Happens Next

In the next few days after my birthday party, I started seeing a pattern in Nan that was worrying.  She began coming into work anywhere from fifteen minutes late to a whole hour late.  This wasn’t good for me because my IV bags and my tube feeding bags would finish and begin alarming and I would be unable to reach the pumps from my hospital bed, even when I sat the bed all the way up.   This meant that they would just keep alarming loudly, it would be enough to drive me nuts.  I would also finish all of the drinks that whoever worked the night before had left at my bedside, so I would be really thirsty.  Sometimes I would have used up all of the straight catheterization kits as well and would feel like my bladder was full but not have the means to drain it.

Luckily, so … Find Out What Happens Next

“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 … Find Out What Happens Next

All of Jeff’s doctors assured us that he was at the top of the liver transplant list.  He could get a call any day to drop everything and rush down to Umass Memorial Medical Center to be prepped for the major surgery of having someone else’s functional liver transplanted into his body to add years and years onto his life.

While we knew there was a possibility that Jeff’s liver cancer had returned, and an even more frightening reality that if his cancer had returned he would be permanently removed from the liver transplant list, we tried to push all thoughts of his mortality out of our heads.

My health was in a fragile state as well.  Even though I was now on 2.5 liters of IV fluids a day, with 1.5 liters of them being infused with potassium, sugar water, vitamins, trace elements, and minerals, I was barely tolerating … Find Out What Happens Next