A Penn Med Moth Story by Lanair Lett

When I got asked to do this I was shocked, flattered, and a little dismayed. Thinking of what I understood this to be, I felt that the kind of story that we are supposed to tell is one that both uplifts and humbles; a story that picks up the world around the listeners, turns it on its side, and forces them to look at things in a different way. I didn’t have that. When I reflect on my life, I think I have a list of successes that thankfully outnumber my failures, and a peppering of confusing things scattered between. So I‘ll talk about one of those confusions here, and hopefully we’ll all leave the room a little bit better for it.

The story goes back to this summer, two days before our GI exam, June 14. Like every other unit in medical school I was between 5 and 50 lectures behind, and using prayer and hope as my primary study strategies. Meanwhile, in the back of my mind, there was a problem lingering. The week prior, my sister, had told my aunt, who told me, that my mom hadn’t been feeling well, and that she’d went to the doctor with a pain in her side.  Frankly, I wasn’t that worried about it because my mother was not someone who I was accustomed to thinking of as weakened or shaken at all.

In hindsight, I think the best image of the person I saw her as, is that of a mountain—Permanent. Immutable. Strong. I had a very complicated relationship with that mountain. Growing up she was my greatest advocate and protector, like I was a village or a crunchy hipster farming commune, shielded from the rest of the world in the shadow of that mountain, safe and supported.  Her expectations sometimes had the weight of a mountain. In her mind the future of her children hinged on their academic success. To that end she tolerated little short of perfection, in grades, behavior, and every aspect by which the world evaluated us and decided our fates. That weight was heavy but it wasn’t crushing; she was one of those people that could hold you to inhumanly high standards while also pouring into you enough love and pride to make you think your greatness was just enough to meet them. Unfortunately, as I grew up and became the person I am today, things changed. It’s an ugly truth that many black, queer youth, gain their identity at the expense of their family and I wasn’t an exception. That one little fact about me shifted my mountain; it went from this warm place where I felt loved and powerful, to a place that was cold and uninhabitable. Ultimately, that mountain was no longer my home, and she was no longer my mother.

Fast forward nearly a decade to that day on June 14th, when that mountain called me for the first time in years and told me she had “Stage 4 Pancreatic Cancer”. Honestly the first few moments I was low-key sure someone was playing a joke on me; or that I had punched a baby in my past life and this was some cosmic hex finally coming back to bite me. The irony of the situation was almost palpable, just two days ago I’d listened to professors outline in excruciating detail the different types of pancreatic cancer: mucinous, neuroendocrine, adenocarcinoma, signet ring, pastrami and basil...no wait, that’s lunch. Jokes aside, regardless of type, the thing that unified them was, by the time you reached stage 4, there was little left to be done. So, when my mother, my mountain said “Be honest, how bad is it?”, I was in the uncomfortable position of balancing integrity and empathy; being true to her reality, that by my estimation her life was at its end, and also leaving her with some modicum of hope. You would think that knowing her would help but it only served to convolute things: my mom was a straight shooter, blunt to a fault and someone who really didn’t reserve time for frivolous chatter—but she was also a warrior, someone who would fight against even the most improbable odds.   If there was one cancer patient who I knew could handle the battery of increasingly risky treatments that doctor’s use as prognoses worsen, it was her. She not only could fight, but would need to because of who she was. So, for her to be diagnosed with a cancer that didn’t even warrant the most desperate Hail Mary’s, that broke my heart.

After a long pause I said, “It’s bad. Most people don’t make it long with this, but a few do.” Her only response was “Well, imma get the best care I can and it is what it is.” Even though we hadn’t spoken in years we still knew each other better than most. I knew she translated my answer to the slim chances she had, just like she knew that I saw and felt her disappointment. Still, in that moment, she didn’t stammer or cry. Instead, with that almost indomitable strength that is intrinsic to black womanness, she soldiered on and we wrapped up the conversation with plans for me to come home.

When I arrived home I met her care team and my family discussed next steps with them. Immediately, I saw how isolating knowledge can be.   Every sentence from the doctor came through as part of two separate conversations, one with me, the medical student, and one with them, my family.

The Doctor: “We can’t try chemo right now because the kidneys and the liver are failing. Usually we need one of them to function to process the chemo. Once we get the kidneys functioning we can try again.”

For them, this explanation gave them context, some hope.  If we can just get the kidneys working again we can treat her and give her a chance. For me, it was multi-system organ failure, typical of the decline of terminal cancer patients.

Them, my family: “Why are they both failing?”

The Doctor: “She has what’s called hepatorenal syndrome. The masses in the liver are clogging up the ducts and causing bile and blood to back up. Poor liver function is also causing the kidneys to get sick.”

For them this was giving a face to their problem. Hepatorenal syndrome. They had a target, an enemy, the one thing blocking my mother’s chance at life-saving treatment. For me I knew it for what it was. A catch-all term for any host of things that cause inexplicable kidney failure when the liver is distressed.  That name was no more meaningful than saying the boogie man or evil spirits had done it. Her body was failing her and the doctor’s didn’t know why, and probably couldn’t help if they did.

The Doctor: “I’m gonna have the GI doc try to put in a stent to recover flow in the liver and we will go from there”.

For them, that was hope and they were determined to maintain cautious optimism. They had a plan, a way forward, a chance.  For me, it felt like the doctor falling privy to that destructive medical inclination to treat for the sake of treating, even when there was no hope. I realized that my family and I were in different places; I’d started grieving on June 14th, when I heard “stage 4 pancreatic cancer”, a death sentence, simply by another name. But my family was nowhere close to that. They were still in the fight, battling the cancer, holding onto the illusion of recovery.

The next day, my family unfortunately was forced to catch up.

The Doctor: “The procedure failed. I got in there and there was nothing to put a stent through. The liver was completely replaced by cancer.”

Silence. Heavy, suffocating, silence throughout the room. Eventually, the doctor said something quickly that I don’t remember and left, perhaps because he wanted to give us space or perhaps he didn’t want to sit in the room with us and our pain. Everyone stayed still for three minutes that felt like three months, until my mom half sat up in her bed. It wasn’t easy to look at her, my mountain, in this crippled and crumbling state. Her eyes were dark yellow with jaundice, her feet and legs swollen with edema, and body awkwardly turned to reduce the pressure on the painful mass protruding from her pancreas and compressing her chest.

Eventually she broke the silence, head tilted and shaking back and forth in disappointment, “I really needed that to work.” She shed the first tear I’d seen from her since her diagnosis; as if it was finally hitting her she was never going to return to that able-bodied, prideful, 47 year old, force of a woman that she had been a few weeks before.  In a way, even in that moment of weakness, she was doing all the heavy lifting for everyone in the room. Once she admitted defeat, in her face and eyes as much as in her words, she freed everyone else to do the same. And we all fell apart, as the last bit of hope left the room.

In those first few weeks, my mother and I hadn’t really talked about our troubled history. But, on July 13th, perhaps driven by the fact that she was fading, my mother kicked everyone else out of her room and said to me: 

“I looked up the LGBT group at Penn. It seems like they are very supportive. Do you like it there? Do you have a boyfriend?”

I laughed out loud. Never one to mince words, my mother skipped the awkward pleasantries of “Are you dating?”, and ignored the common practice of using gender-neutral pronouns to drop hints that the person you are talking to might not be attracted to the opposite sex. Her approach might sound gruff and insensitive to you but to me it was life-changing. In that moment, baggage I didn’t even know I was carrying about not being accepted by my mother started to fall away.  To have her, entrenched in a homophobic interpretation of Christianity and carrying the trauma of losing a gay brother to AIDS at the height of the HIV crisis; for her to bend herself, the mountain that she was, to make space for me and my truth—that changed everything and it gave me back my mother.

The next day, July 14th, 30 short days after her diagnosis, she died. I got a call from my siblings who stayed with her overnight that she had startled awake, wheezed, fell back against her pillow, and took her last breath.

I guess what I know now is the healing power of reconciliation. Prior to her sickness, I hadn’t known how much of myself I had staked on the absence of her…Either not wanting to be her, not wanting to miss her, not wanting to love her. Afterwards, I was able to acknowledge how much of me was her, how similar we were in the way we interacted with the world. I saw this in a story her boss told at her funeral. She worked at a state correctional facility for 15 years, as a sergeant and unit manager. One day, there was a riot, precipitated by poor management by her boss and his colleagues, and culminating in the injury of one of her officers. So, the next day, she walked into her boss’s office and told him to sit down. Then she exhaustively enumerated all the ways in which he had failed to train the officers properly, created an unsafe environment, and all the things that she demanded he do to get it together. Before he was able to recover enough to speak, she got up, turned on a pivot and walked out of the room back to her shift like it was perfectly normal to tell off your boss. He said he was torn between firing and promoting her, and ultimately chose the latter. I argue that this fearlessness and strong conviction is something I emulate and it was through our reconciliation that I can acknowledge that I learned it from her.

So yeah, this story doesn’t end neatly. Like I said at the beginning it is something that confuses me, filled with contradiction and uncertainty. Grief is unlike any other sadness. It’s visceral, physically and mentally manifesting at unpredictable times.  I’ll hear a song that she loved, or we’ll mention a symptom she had, and the world will stop. My heart will fall to the pit of my stomach and I’ll lose my breath, paralyzed by grief for a second or a minute or an hour. That pain is a part of me, and for how long I don’t know, a realization that makes me uncomfortable. But this experience also gave me back my mother, even while taking her away, and I now have a new understanding of who I am. It’s complicated, it’s ugly, it’s painful and it’s also healing. So, I guess I know now, that 30 days can crumble a mountain, 30 days can erase a decade of hate between a mother and her child, and 30 days can reshape who you are. I think I always knew that life was ugly, but now I know to appreciate and embrace that ugliness, because it has provided me with some of the most meaningful and transformative moments of my life.