I recently wrote about how our world is ruled by love, and circumstances conspired to show me just how true that really is.
Love is when I go to the ER at UCLA, where I work, for a cough and feeling that “something isn’t right,” and even though my complaints are mild, I’m brought right in and treated respectfully.
Love is when the chest x-ray comes back with some abnormal findings, and the ER attending attentively points out the fuzzy mass in my chest and the collections of fluid around my lungs. “It could be nothing,” he says, “but we need to get a CT scan right now.”
My CT scan with contrast (sagittal view): “A” is front, “P” is back, and the bright spot in the middle is my heart
Love is when the CT scan comes back, and the attending carefully, gently, sits down on the gurney next to me and asks if I would like to read it with him. He says he’s not a radiologist, but knows I would want the results as soon as possible.
He points out the fluid collections (called pleural effusions) and a few enlarged lymph notes. Then he points out a large mass in my anterior chest, measuring 18 x 11 x 7 centimeters.
I ask him, “This is bad, right? It’s lymphoma, isn’t it?” He says he can’t tell me for sure — that I will need a biopsy ASAP. I start to cry. I tell him this was not what I expected when I came to the ER. He asks me if there’s anyone I need to call, and I tell him my cell phone doesn’t have reception. He gives me his phone to use.
Love is when my friend Marya comes to the ER to be with me then share some tea at Starbucks when I’m discharged, even though it’s midnight and she’s an anesthesiology resident who probably had to be up at 6am the next day.
Love is when I go home and wake up the middle of the night with blood curdling, searing pain in my arm, and panicked that the tumor is occluding a blood vessel or nerve, yell to my boyfriend to call 911. I hear him sobbing on the phone and tell him to stop because it’s too hard for me to see him so afraid. He yells out, “I can’t lose you!”
Love is when I go back to the ER and even though they can’t find out what caused the pain, they expedite my biopsy and have it done in the hospital.
Love is when I’m discharged again, but another UCLA resident, Becky, who specializes in hematology-oncology and who I knew back in medical school, hears of my case. She has me call her that night, and moves mountains to have me admitted back to the hospital the following morning directly to the heme-onc service for expedited work up and treatment.
She emails the medicine chiefs, the ER residents, and every single oncology specialist at UCLA to arrange my admission and expedited testing. Even though there is a week-long wait to get a PET scan, I get one the next day. My bone marrow biopsy happens right after. Every resident, fellow, and attending I talk to tells me that Becky sent them an email asking them to take extra good care of me. I don’t even know her that well, but she might have saved my life.
Love is when so many friends and colleagues visit me that I’m quickly dubbed, “The most popular patient in the hospital.”
Love is when my boyfriend, Peter, has not left my side for a single night and has been sleeping on a mini aerobed, even though he’s 6″3′ and usually complains about sleeping on anything smaller than a California king.
Love is when my parents immediately fly to LA from the Bay Area to be with me in the hospital. My mom, a pathologist herself, even calls the lab directly to read the slides with the attending pathologist.
Love is when nearly every oncology attending who works at UCLA comes to visit me and check in, even though it’s not part of their job description and they’re not officially on my case.
Love is when every single staff person in the hospital, from nursing to care management to the custodians, treat me kindly and compassionately.
My chemo setup
Love is when I get the news that the biopsy is not Hodgkins or B-cell lymphoma like I had hoped, but a more rare, more difficult to treat, type of cancer called acute lymphoblastic T-cell lymphoma. It has spread to the lining of my lungs and several groups of lymph nodes, making it stage 4. It will require 6-8 months of intensive chemo in the hospital, and up to 2 and a half years of less intensive maintenance chemo after that.
Unlike the chemo regimens for Hodgkins or B-cell, this one will make me infertile by ravaging my ovaries. The oncologist did have one patient who had twins after this chemo, but it was a rare exception. I could be in the hospital for the next month if I become neutropenic (a suppressed immune system) from the treatment.
The oncologist spends almost an hour with me and my family going over the diagnosis and treatment plan, even though I ask him the same questions over and over because my mind is so overwhelmed.
Love is when I’m given the option to wait two weeks to start chemo to do egg retrieval to preserve my fertility. But — I am told the entire tumor likely grew in only 6 weeks, so this could be very dangerous as the cancer is already occluding my blood vessels and lungs, making it difficult for me to breathe. My boyfriend hugs me and asks me not to wait.
He tells me, “It’s like putting the oxygen mask on yourself first. I need you more than I need our future child.”
Love is when the next day, when visiting with the heme-onc fellow, I start crying that I will never be able to have children. She sits down next to me on the hospital bed, holds my hand, and with tears in her own eyes, tells me, “Nothing is 100 percent.”
Love is when that day, I decide I will choose the course of my illness. I write on a piece of paper, I have acute lymphoblastic T cell lymphoma. Here is what I know to be true.
- I will not get neutropenic and will be discharged from the hospital by the end of the week.
- My bone marrow biopsy will be negative.
- My cancer will respond so quickly to the chemo that I will only need the 6-8 months of intensive chemo, and not the 2 and a half years of maintenance chemo.
- I will be that 1/1000 who is fertile after this chemo and will have a child.
My hip new haircut
Love is when, knowing my long hair will soon fall out, I decide to have a stylist come to the hospital to preemptively cut my hair so it can be used for a wig. He comes on Sunday evening, after a full day of work, the night before he’s supposed to leave town for the holiday break. He gives me an awesome haircut. He refuses to accept any payment.
Love is when my former roommate and best friend from medical school, Julie, offers to cut her long, brown hair in solidarity, and as a contribution to my wig.
Love is when the following day I get the results back that my bone marrow biopsy is negative, and that I do not have leukemia on top of lymphoma.
Love is when, the day after, my blood counts are looking so good they tell me I could be out of here by Friday.
Love is when such a tragic event has shown me how many people out there care about me deeply and hold me in their hearts, showing their concern through visits, phone calls, texts, emails, messages through family, and heartfelt gifts. Ignorantly, I hadn’t before realized this was true.
Me spending time with friends in my hospital room (not so bad, right?)
Love is when I feel an urgent desire to get well so I can continue doing the work I am meant to do, here on this blog and through my connections with patients, promoting a positive and integrative view of psychiatry, a field I care so much for. I will get well for me, but I will get well for you, too.
Love is when I realize my passion for life far supersedes my fear of this illness or its treatment.
Love is when I know this cancer will hurt, and will make me sick, but it will not kill me. Love is too strong not to live for.
I am here for love.
Elana Miller is a psychiatrist who blogs at Zen Psychiatry.
