Keeping On

It’s been a while since I posted. I finished my fellowship and can gladly say I accepted position as a nurse practitioner in the lymphoma and myeloma department at my hospital. It’s only been a month, but I do feel I’m in the right place despite all the moving parts and growing pains.

The real reason I’m writing today is to unload.

My grandma went to to the emergency room again today for what I believe is the fourth time in a year. It’s been a long journey. I remember when she was diagnosed in late April, early May of 2022 with metastatic gastro-jejunal signet ring cell adenocarcinoma. She went in with a heart attack and left with a terminal disease. I remember feeling defeated. Fifteen cycles of oxaliplatin, leucovorin, fluorouracil, and nivolumab later, her cancer is stable, which is the second best thing you can achieve in cancer medicine. But I still have anxiety that even by writing that statement, I might have jinxed something, like I’m foreshadowing a terrible experience in the near future.

I started my oncology nurse practitioner fellowship thinking I knew a little something about cancer. I did. But looking back now, I can honestly say I’m pretty proud of the confidence I’ve gained as a new provider.

I remember reading grandma’s pathology report in a shared room of UMass Memorial Hospital asking “What the fuck does MMR proficient mean?” It bothered me that I didn’t know, and that even after looking it up on my own, I still couldn’t quite grasp the content. I look back now and am super proud of myself for urging my grandma to have genetic testing done regardless of her MMR status, knowing that her history of endometrial and gastric cancer were consistent with lynch syndrome. Lynch syndrome is a an inherited genetic disorder that predisposes someone to a conglomerate of different cancers. She tested negative, but knowing I did this on her behalf, and therefore my family’s behalf, despite them not understanding the weight of it all, meant a lot to me. I wouldn’t have had the courage or knowledge to do that a year ago.

And then the CT scans. A year ago, I was comfortable just reading a report and getting an idea of whether a scan was good or bad. But now I can look at a CT scan itself, identify important structures, and at least get a sense of what may be going on. I can read a report in detail and latch on to pieces that are important now or possibly later, and actually report back to my family before the physician gets a chance to and give them peace of mind before and appointment. And I can do this confidently (mostly, that is. Sometimes I still struggle and ask my peers for confirmation).

And lastly, the advocacy. Everyday, I’m inspired by the people I see coming in and out of our hospital. My family is huge, and yet it still feels like caregiver fatigue and burnout continue to be a never-ending battle. Our family chimes in at different times in her care, but I can’t help but feel that even with two little cousins that make the one hour commute to and from Boston for appointments while enrolling in school full-time; an aunt that takes two days off work every two weeks for chemotherapy appointments; an uncle that keeps track of pill boxes and prescription refills; a mom that learned how to prepare and administer TPN and cooks mucositis-friendly foods daily before leaving for work early in the monitoring; an uncle who comes over intermittently to help my grandma practice physical therapy exercises; and myself, who manages all the behind-the-scenes action including TPN deliveries, supply deliveries, coordinating with her different health teams, symptom management, and managing her MyChart. Not to mention helping her up and down the stairs, arranging home health visits to change her PICC line dressing, learning how to use a ramp or gait belt, and teaching the family emergency signs to look out for, what medications do what, and the lack of sleep. It’s overwhelming. And I cannot even begin to imagine what the story of cancer looks like for so many others who don’t have adequate support systems or structures, face language barriers, cannot express their symptoms or comfortably develop rapport with their providers, or cannot digest health information in a timely, meaningful manner that allows them to understand their situation, make their own informed decisions, and still manage to create a life with what quality they may have left.

And then you tack on all the healthcare and institutional barriers, like delays in care, lack of time spent counseling people, or you-name-it, and people wonder why cancer patients are depressed. Yes, they have cancer. But also, we aren’t making it very easy for them, either. All the while, we’re still pushing them to “fight” cancer. Which is honestly one of my pet peeves, but I’ll leave that for another post some day.

I don’t know why I’m writing this. I don’t know if it’s to prove to myself that I’ve done something with my life this past year, to vent, or to make people aware of how hard it is for cancer patients and their families. I wonder about how much more pain my grandma might have been in and for how much longer if we didn’t encourage her to go to the hospital several times before, and how we saved her from suffering if only for a few more hours, and how not everyone is fortunate enough to have an advocate who can do that for them.

There are times when I feel like I’ve made it. I really thought that when I took this new position, I could for sure say I did make it. Maybe I did, but for some reason, it really feels like it’s only the beginning. I feel like I have so much more to prove, so much more work to do, and so much more good that I need to try to accomplish, especially for those that don’t have the means to support themselves.

My soul feels tired. My mind is tired. But I guess I’m reassured by the fact that I still want to keep going.