Finding Your People –

New Year’s Eve 2014. Less than twelve hours after my surgery, I was up and walking around, although it was a highly supervised excursion. A nurse explained that following surgery, it was important to get up and move as soon as possible to jump start the healing process and prevent blood clots and infections. I was skeptical, but pleasantly surprised when I completed a full lap around the hospital floor.

As the early morning hours progressed, so did my mood. Every couple of hours, I would do another lap and the nurses would tell me how amazing I was doing. Once I was back in bed, I was given a popsicle. I was very aware that I was participating in a behavioral reward system that seemed more geared towards a young child or a puppy, but I didn’t care.

In addition to having access to a seemingly unlimited supply of popsicles, there was a magic button at my bedside. I could press this magic button at the moment I felt any twinge of pain or discomfort, and a dose of medication would be released and make it disappear.

This is really going so much better than I expected, I thought.

Most of the nurses I interacted with worked twelve-hour shifts. During the changeover, the nurse who was finishing her shift would introduce me to the nurse coming on. As I wrote in the post about my surgery, nurses had quickly become “my people,” so as the shifts changed, I was simultaneously sad to see the nurse I had spent half the day with leave, while excited to meet someone new.

Twenty-four hours after surgery, I had settled in. Flowers arrived from thoughtful friends and family. My Mom set up camp in my room and handled the steady stream of calls and texts inquiring about how I was doing. We agreed that since I was doing so well, my Mom would head home at the next shift change so I could focus on getting some sleep.

At the shift change, the incoming nurse gave me an update on the plan for the evening.

Christine, since you are doing so well the doctor thinks it’s time we switch your pain medication from the IV to oral tablets.

The nurse explained that staying on the IV too long would make it harder for me to recover. There was a longer explanation on why this was important, but I was so happy to hear that I was “doing well” that it didn’t matter. Tell me that I am overachieving on something and I will basically do whatever you want.

But one hour later I learned that there was a huge difference between pain medication received through an IV vs. oral tablets.

I was now aware of the massive incision that ran the length of my abdomen. I could feel the imprint of each metal staple that held the incision together. Oh my God, what was the excruciating pain in my lower half? After a few minutes, it hit me. That’s the catheter.

Popsicles were not going to fix this.

Since I no longer had access to the magic button that had so diligently relieved my pain, I started pressing the one right next to it to summon the nurse.

When the nurse entered my room, I told her how I was feeling, although I am sure just by looking at me she knew. She explained how the pain medication I had been receiving through the IV went right into my bloodstream. The tablets were not as powerful.

Intellectually, I could get my head around what she was saying, but my body called bullshit.  The tablets were not working at all. I had never felt pain like this in my life. I could not understand how a drug that was working so well for me earlier could now be so ineffective just because I was taking it in another form.

Well, you are on a different medication now, the nurse said.

I looked at her incredulously and said, Why?

This conversation with my nurse started a process that lasted through the evening hours into the next morning. I don’t remember why the pain medication was switched, but after I was taken off the IV my hematocrit level, which measures red blood cells, became extremely low.

I was no longer doing “amazing,” as I had been only hours earlier. As a result, the doctor did not want to make any changes to my protocol until my hematocrit level improved.

That’s not going to work, I said to the nurse. We need to either switch back to my earlier medication or remove the catheter. I can’t withstand this pain and I can’t imagine I am going to improve until I get some relief.

The nurse could not have been more empathetic. I will go call your doctor, she said.    

When I refer to “the doctor” in this situation, I am not talking about my oncologist, I am referring to the doctor who was on-call. I never met this doctor in person, and I have no idea why. I realize that there could be several legitimate reasons, including the possibility that he was attending to patients in far worse condition than I.

However, since I didn’t know why being in serious pain didn’t warrant a visit to my bedside, my imagination filled in the blanks. So, when the nurse said that she would “call the doctor,” I equated that with meaning he was at a New Year’s Eve party, wearing a ridiculous party hat and highly annoyed by his instructions being challenged.

The nurse came back and told me that the doctor did not agree with switching my pain medication or removing my catheter. But, he wanted me to have a blood transfusion in hopes it would improve my hematocrit level.

It didn’t.

A couple of hours later, I got a second blood transfusion.

It didn’t work either.

At this point, I was in so much pain that I could barely speak. When I was admitted to the hospital, I was told not to keep anything valuable in in my room. I didn’t have my phone, and I wasn’t thinking clearly enough to remember that I gave the hospital staff my Mom’s number as well as several others.

The only person I had to help me was the nurse, who I could tell was also in pain. At this point, she had easily called the doctor half a dozen times on my behalf. And after each call, she would come back to my room and hold my hand, while explaining what we were going to try next. I truly felt like we were warriors in battle and had forged a very intense bond in a matter of hours.

When the second transfusion didn’t work, I became calmer, not because I felt any less pain, but because I was so defeated by the situation. I looked at the nurse and with the little energy that I had, I asked her to plead with the doctor. I was positive that switching my pain medication and removing the catheter would solve the problem.

I said, If the transfusions are not helping, could we at least address my pain?

I am going to fix this, the nurse said as she left my room.

When the nurse returned, she handed me tablets of the pain medication I had taken earlier in the day.

Now I am going to remove your catheter, she said.

Within minutes, I was asleep. I slept for hours. I woke up when my Mom arrived later that morning.

How was your night, my Mom asked.

Where do I begin?

Shortly after my Mom arrived, the morning nurse walked in. I immediately asked the whereabouts of the nurse who had been with me all evening. The morning nurse explained that when she arrived for the shift change, my evening nurse told her everything that had transpired and did not want to wake me up for the shift change. This came as no surprise.

I asked the morning nurse about my hematocrit level.

It’s improving, she said.

While I was only at the beginning of my medical journey, this experience and the nurse who shared it with me will be forever at the forefront of my consciousness. I have no idea what the nurse said or did to change the doctor’s mind. But I believe that, because she advocated for me, I was most likely spared from suffering potentially greater complications.

Listening and trusting medical advice is important – but so is sticking up for yourself, especially when something is not working as advertised. This was my big takeaway from the experience. And going forward, I knew that, if I were in a situation in which I were either physically or emotionally unable to articulate what I needed, I just had to be able to do one thing.

Call a nurse.

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