Making healthcare about people

When my mom went through cancer treatment, I got to experience what felt like a world tour of hospitals, clinics, emergency rooms, doctor’s offices and infusion centers. It was two years of way more healthcare than anyone would want to deal with, and it was eye opening.

My mom’s bladder cancer metastasized to her sinuses. She had chemo and then surgery in early November to remove the mass and her bladder. By Christmas she had a pounding headache that wouldn’t go away. Her scans in February reveled multiple new masses, but an MRI of her brain was clean and didn’t show anything, so the headaches remained a mystery until the Spring. She asked if it could be a tumor, but she was told that bladder cancer really doesn’t metastasize to the sinuses.

Ultimately, she was sent to an ear, nose, and throat specialist. They saw the tumor with their scope and sent her to the hospital so they could biopsy it. By this point, mom and I had many, many months of medical experience under our belts. We had go bags for the ER, infusion clinic, and any other place we could think we might spend time. But my mom was miserable. She hurt all the time, and the hurt was exhausting. She had trouble sitting up in a chair in a waiting room. She had scared people (patients) at one of the facilities we were at for a CT because she kept falling over and moaning. The medical staff was lacking, and the only people around were other patients and me who tried to make her comfortable. I will say, people were always incredibly kind to her and to me during all of these visits.

We went to the hospital he sent us to. When we got there, we were greeted by a nursing assistant. This was a high end, private hospital. She stayed with us through admission and made sure my mom was comfortable. She found mom a bed and came and checked in on us every half an hour. She said her job was to make sure we knew what was going on and to make mom as comfortable as possible. Most of what she did was hold my mom’s hand and listen, but that was revolutionary. My mom, for the first time in months, wasn’t scared. And with that, she felt better. It was more powerful than any drug she ever received.

With COVID cases climbing and omicron beginning to take off, there are calls to increase nursing staff. We needed those calls and action on them long before the pandemic. There is no more important part of medicine than the staff who listens, who advocates, and who checks in. Early in my mom’s care, the most important people weren’t her doctor or surgeon. They were important, but the people who helped her cope and manage were a physician’s assistant and her nurse who helped make sure she could get the right medications to deal with side effects, talk through things she didn’t expect, answer questions, and most importantly, listen when she called them worried about something that was going on.

Shortly after my son was born, he wouldn’t stop crying. He would start at 10 am and go until 10 pm. We couldn’t figure out what was wrong. It was a nurse who said, we will figure this out, and he and you will be ok. She called me every day to see how I was doing and check in on him. Ultimately, she became an advocate for us when we were far too exhausted to know what to do. My son thrives because of her.

We need to make it so people get full scholarships to pursue nursing degrees. We need ten times the number of nurses we have now, and we need to pay them. We need to have everyone from nursing assistants to physician’s assistants. We need to have them visit people where they live and provide care in a range of environments. If we are willing to invest, we will strengthen the healthcare system, but most importantly, we will improve our lives and our quality of life. We know having early visits after a birth can improve outcomes for babies. Visiting nurses can improve outcomes following surgeries and other hospital stays. Nurses can help to empower and inform patients so they can figure out what they want and need to have good lives.

Nurses can lead us out of the pandemic if we invest and support them.

What is normal

For months, I thought that when my son was vaccinated, things would feel more normal. The same week, stories of omicron were showing up. It feels like normal has shifted again.

Learning to live with the unknown is becoming normal but it is really hard. My son has nightmares. He’s had them for over a year. I shouldn’t be surprised. I had nightmares at his age, and I wasn’t living in a pandemic. But, it means that for the last 18 months or so, I sleep in 4 hour chunks. I was never a good copy editor, but I am terrible now. I miss details easily, and even big things. I use every AI tool I can find when I am editing to help highlight things that need focus.

I wonder if we’ll ever place an order for lab again without having a two month wait (and that is when things don’t simply say backordered without a date.)

I see so many of my students in lab and in class struggling. They are brilliant but there are all sorts of new challenges for so many of them.

Somehow, though, in spite of all of this, in spite of being worried, tired, and, at times, sick, everyone is moving forward and finding a way. Graduation has always felt like Christmas, but this year, it feels more like Christmas than ever before. To complete a degree, especially a PhD in a pandemic, is absolutely phenomenal.

I don’t know what the future will bring, but I am beyond grateful for the students. They are incredible.