Nurse’s notes - July 09

Recently I had one of those days that really got to me. I cared for a single, handsome young man with advanced lymphoma, pneumonia, uncontrollable fevers, and immune suppression. He is a patient that I will remember for a long time.

It wasn't one of those patients that didn’t care about his health, eating Big Macs for every meal (that would be around a third of the other patients). Nope. It was a 30ish year old named "Michael" whose mother rarely left his room.

Michael never complained to me all day about anything. He has to wear a mask to interact with anyone outside his room. He needs assistance to walk because of his increasing weakness. His mother, who looks ten years older than she probably is, stays at his bedside until he kindly asks her to go out for some dinner or a Sonic drink so he can have a nap. He doesn't want her to feel bad that he asks her to leave, but he just wants some sleep. He never complained to me about anything, not once. Not his pain, fever, vomiting, or the poor prognosis.

We had a nice laugh about his bowel habits after I collected a stool sample for an occult blood test. He assured me, with a smile on his face, he wouldn’t have another bowel movement until the next day. He asked me if I hated that part of my job, but I assured him it was not a big deal to me. You get a plastic spoon, get a "sample" out of the "hat" in the toilet, and put it in the specimen container. Also, there is a little part of me that giggles every time I have to cut somebody's poop to make it fit in the container, and the decision-making process that led me to that point in my life.

I’m sure he has come to know his own body well and how it reacts to chemo, radiation, and the other treatments he has had since his diagnosis. Many people may not know what these treatments do to a person's body. Some people can have horrible diarrhea while others are terribly constipated.  That is in addition to all of the other side effects you have already heard of.

The next day after I cared for him, he was planning to travel across the state for radiation since his oncologists are there, but insurance doesn’t pay for transportation unless you are sicker or need a “higher level of care.” Well, what the hell is radiation? So his mother will spend 8 hours driving him across state and he will lose an entire day of treatment while he is “transported via private automobile” to his usual center of care. So he will have to urinate in public restrooms in truck stops, rest stops, or restaurants for an entire day with a body that is not able to fight off infection. Ugh.

Whenever I am travelling with my family and I try to get my husband to take the kids inside to go to the bathroom, he always asks me, "Have you ever seen the inside of a men's room before?" He always gets me on that one.

Across the hall from Michael is a 50ish, 400 pound man, "Bob," who requires 4 staff members to get him out of bed (a special bariatric bed with an air mattress to diffuse pressure) into the chair so he can eat his breakfast. (There are officially only 2 people assigned to his care - myself and the LPN on my team, so we pull other people from nearby assignments to help.)

Across the hall, my lymphoma patient Michael can barely eat his breakfast because he is throwing up, although no nausea precedes the emesis.

"Bob" is in the hospital with cellulitis to his toes. Infection is eating away his toes from the inside and they require a special antibiotic cream along with daily dressing changes and wound cleaning. Often, the orthopedist will do his own dressing changes, but since he is out of town today, the LPN on my team, Janice, agreed to do it.  She will steer clear of our immune-suppressed patient after that. At 1100, we tell this patient he will have to be NPO (nothing by mouth - no food or drink) for an ultrasound of his gall bladder to be done later in the afternoon. He yells in anger, “I was just getting ready to ask for a snack!” This is only 30 minutes before lunch is scheduled.

At his current weight, and with severe pitting edema from the hips down, if he missed a couple snacks and lunch, he would not likely suffer any ill effects. Janice tells him it is only for a few hours. Grumbles can be heard from the hallway.

Meanwhile, the dietician comes to see him and he asks to be put on the schedule to have snacks dropped off at his room between meals, an extra service afforded to the diabetic patients such as this one. When the ultrasound technician comes to perform his ultrasound at 1145, I am surprised, and I stand in the room to watch a portion of the ultrasound as well as assess the patient’s emotional status regarding his NPO status.

“That dietician lady was just in here, she’s going to put me on the list to get snacks between meals.”

I nod my head. “Are you worried about your blood sugars dropping between meals?”  I ask this, knowing full well his sugars are rarely below 150, ever. He is already taking more than 100 units of insulin a day.

“No.” Bob says it with a smile on his face, thinking he has pulled one over on the dietician, which he probably has. “Make sure you order me a lunch tray because they’re doing my test now. Are you going to order it now?”

“I’ll order you a lunch tray, don’t worry. The cafeteria is open until 7 tonight. There’s plenty of time.”

“Alright, well I just don’t want to miss lunch.” Bob looks down at his large belly and back to me, then laughs a little, acknowledging he could miss a meal and still not blow away in the wind.

“So do you want me to order that around 6:30 for you?” I smile, trying to see if he is taking it as a joke, which he is.

“All I ask is that you make sure it’s a good tray. Not just a sandwich or anything like that." I walk down the hall and put the order in the computer for his lunch tray to be delivered. In the comments section, I say "pt requests that this lunch tray be "a good one." I always try to incorporate humor into my work. I don't have much interest in working with people who don't have a sense of humor, unless the situation warrants a humorless outlook.

Later in the day, I found out from our floor's social worker that my young patient's mother was seen in the main floor bathroom crying. Since I had seven patients I was responsible for that day, it was difficult to make time for addressing this, but I felt it was too important to let pass.

Managing seven patients is hard. I am still trying to be more efficient with my cares and documentation, but in the meantime, I don't want the patients to be the ones to pay for it. I had 2 elderly ladies with pneumonia who were pretty independent, a new patient who came in with a bowel obstruction, another lymphoma patient, and one with severe anemia. They could wait for a little while.

The next time I went in the patient's room, I asked how he was doing, to which he said "fine," but I asked again how things were really going, with that look in my eye that said I cared about his condition and wanted him to be well-taken care of in every regard, including his spiritual and emotional well-being. "It's alright. It's hard." He tries to swallow, but has to take a drink.

After we talked about him and his needs, I broached the topic of how his mother was dealing with his illness, and he confirmed what I suspected, that she put on a strong front while in his room and on the floor. "She is having a hard time getting used to the idea that she is going to outlive her son."

It was all I could do to hold my own tears inside as the conversation continued. The only child of this already grieving mother was doing what he could to facilitate her grief and anticipatory loss. 

"That was probably more than you were asking, wasn't it?" He looked at me with deep, peaceful eyes.

But he saw right through me.

"No," I assured him, "I want to help you and your mom any way I can. Sometimes that means just talking about it to get it out in the open."

I saw more maturity and poise and strength in this physically weak young man than in any other patient I have seen. My hope for him is that he does get better physically so he can experience what life still offers him.

As I walked to my car that night, a couple hours after that conversation with Michael, I felt my chest get tight. By the time I reached the car, the tears were welling up in my eyes and I could take my glasses off, put my sunglasses on and cry my eyes out as I drove home.