The Long, Long Road to an Imperfect Diagnosis

Total time between when the mediastinal mass was found and I received a “definitive” diagnosis: 130 days

Procedures and scans to get there: 7 chest x-rays, 2 CTs, 2 full-body PET scans, 1 MRI, 1 FNA/bronchoscopy, 1 CT-guided core needle biopsy, 1 bronchoscopy/thoracotomy

What I owe (not all procedures have been added to the bill yet) for just the diagnosis: $78,500

Holidays that passed while I waited: my 35th birthday, Thanksgiving, Christmas, New Years, Valentine’s Day, St. Patrick’s Day

March 2020:

“You’ve had a rough go of it, huh?”

My final oncologist sits across from me, my final and official diagnosis somewhere in the folders in his hands. The pathologist’s final report, which I was able to read online before this appointment, says “B Cell Lymphoma,” but there are different kinds, and the final choice has been left up to the clinician. The report also shows my lymphoma is a triple-hit lymphoma, which means it’s likely to be resistant to chemo. My cancer is a badass, aggressive and defiant. I…am tired.

I was reluctant to even come to this appointment, wary of the oncologist and promises he won’t be able to keep, wary of the chemo suffering he’ll put me through because that’s just the next step, regardless of the outcome, wary of false hope and the chasm that follows it. But here I am. Because this oncologist promised to be honest.

He goes through the file slowly, methodically, and even though I already know the information he’s giving me–I’ve had over four months to learn everything I can about lymphoma–I appreciate this approach. He’s giving me space to relax, to digest. He answers my questions before I have to ask them. He shows me the latest PET scan. From the top of my head we dive in. As we enter my throat, my tumor starts to flicker. As we reach my chest, the tumor, massive, flares up, pushes out, engulfs. I see it blaze inside my sternum. The oncologist points out the hot embers of it in my vertebrae. As we continue to descend, he points out flickers in my pelvis. The oncologist gives me his diagnosis gently, stage IV PMBCL, as if I haven’t already arrived there, as if I haven’t passed through dozens of other terrifying possibilities over the months. He tries to assure me there’s really no difference between stage II and IV because they’re treated the same. Just a few more cycles of R-CHOP.

I want to believe him. I’m afraid to.

I take a shaky breath. I will not cry. I say, “Look, this is my primary concern: that you’ll put me through an intense (painful) chemo regimen, and I’ll only get another couple weeks. I don’t consider a couple weeks a success. A decade, I would consider a success.”

“How about five decades?”

His voice is full of feeling. His eyes are steady.

November 2019:

“None of the surgeons I spoke to will touch it. I got you a bed at Huntsman,” the doctor says. He obviously worked for this, getting me a spot at the top cancer center in the region. I don’t know what to do with this kindness, so I nod.

I ask if I’ll get the type and stage of cancer there, and he says yes. They will call me soon, so I have to go home and pack.

I put the bags on a chair, snap a picture of them almost as a reflex. This is cancer, I think. Packed bags. Waiting for a phone call.

My sister and I drive the three hours to Salt Lake in the middle of the night. I have to be there first thing in the morning or they’ll give my bed away. I’m not sure why I need a bed or what to expect; I’m just obeying instructions. I have no idea what I’m doing.

We arrive around 4 am. They’re expecting us around 7. I park in the visitor’s lot, and we try to sleep, unsure whether we can go inside at this hour or not. Too afraid to go investigate. I can’t sleep so I look up mediastinal masses on my phone. I read the symptoms and characteristics of PMBCL. I think, this is what I have. I read an article about a person my age with PMBCL, how Harry Potter helps her cope. When I look her up on social media, I discover she died months after the article was published.

What did her oncologist promise her? What did she agree to go through because of those promises?

When we finally go in, the person at the desk asks where the patient is.

“I’m the patient,” I say.

The person is taken aback, looks me up and down.

“We’re not used to having patients walk in on their own,” he says.

My hands feel suddenly cold.

They give me a room, but I refuse to get in the bed, sitting instead on the lounger, my sister on the couch. Doctor after doctor comes in, collecting symptoms and histories, asking the same questions over and over. I haven’t had anything to eat or drink in hours, and I’m so thirsty, but they want to do a biopsy, so I can’t have anything. I wait and wait. They tell me they have to redo the chest CT the quick care did because they can’t get the images sent over and they need them for a CT-guided biopsy. I try to get them the images, knowing the cost of a redo, but they still insist on another CT. So I get another CT, the dollar signs rapidly spinning in my mind. I wait some more, growing cranky as my thirst intensifies. What is the plan? When will I get the answers to the questions I’ve written down: type of cancer, stage, prognosis, treatment?

I finally tell the doctors I’m worried about the cost of being an inpatient since I’m uninsured. How long will I have to stay? The financial adviser stops by and confirms I don’t qualify for Medicaid and tells me to fill out an application for financial assistance, even though I probably won’t qualify for that either. Several other people stop by, including a chaplain, even though I’ve told staff I’m not religious. I’ve gone nearly 24 hours without water, most of those spent awake. I’m tired, terrified, and thirsty. My sister finally demands some progress, and the doctors decide I can do the next steps on an outpatient basis.

Cancer is not knowing when to yell and when to be polite, while also knowing your life may depend on your choice.

We return the next day for the biopsy, which means I have to fast all morning. The nurse who gets me ready is the nicest person I’ve ever met. She puts the IV in and drapes me in a warm blanket and chats with me to pass the time. Then I talk to the anesthesiologists, who are also very nice. They’re afraid I might bleed out or that my vessels might collapse during the procedure because of where the mass is located. They decide to put me under general just to be safe. I’ve never been under general before. It’s one of my biggest fears. But I just nod. They wheel me into the procedure room.

Coughing wakes me up. I’m in a recovery room with other people, closest to the wall. I’m coughing so hard, I wet the bed. I have a raging headache. After a while, a nurse wheels me into another room, and my sister is allowed in. The headache has intensified, and I have an aura. I ask the nurse if this is normal, and she says no, but she’s not concerned enough about it to do anything more. I get dressed, and we leave.

I find out later that the biopsy was just an FNA and a bronchoscopy, not the CT-guided core needle biopsy they’d led me to believe. I’m very upset to learn this, since I’ve read that an FNA should never be done on a mediastinal mass because it never collects enough tissue for a diagnosis. When I ask about this, the pathologist explains that it’s Huntsman’s policy to always start with the least invasive procedure first. So I went through the procedure for nothing. The pathologist says that an MRI and PET scan will provide a diagnosis. I ask what he thinks it is, and he says a sarcoma or lung cancer. On the pathology report, I notice that another doctor says lymphoma can’t be ruled out.

While the pathologists argue on paper and behind closed doors, and a faceless tumor board decides on the path forward, the dollar signs keep spinning. $10,000. $20,000. I think, We’re going to lose the house, I’m going to lose all I’ve worked my whole life for, and then I’m going to die, and my sister will be homeless.

And these doctors will move on to the next patient.

January 2020:

The oncologist assigned to me leans against the counter, arms folded, in this small exam room. In my hands are the questions I have from November, still unanswered: what type of cancer, what stage, prognosis with and without treatment. One of the first things he says to me is that a third biopsy is needed, which will require a high-risk surgery where they will have to deflate my lung in order to get to the tumor.

My hands start to shake. My head starts to shake. Every cell, it feels like, starts to shake.

“No,” I say, “I won’t go through such a risky procedure for just a biopsy.”

He pauses, as if asking, excuse me, what?

“But we have to rule out things like sarcoidosis,” he says.

WHAT?!?

“Wait,” I say, trying to stay calm, “do you mean to tell me this might not even be cancer?”

“No, no,” he backtracks, “This is definitely cancer.”

I know at this point that I can’t trust this oncologist, and that this appointment is not going to go well. But I don’t even think to get up and just walk out. I owe over $40,000 so far, and to walk away now would mean being saddled with this debt for nothing. Not even a diagnosis.

I am so procedure-weary at this point. And Angry. They should have done this biopsy first instead of putting me through two expensive, useless ones, especially since they know I don’t have health insurance. They should have told me this diagnosis process would take months so I could have paced myself. They should have some answers and not just guesses by now, goddamnit.

The oncologist seems surprised I’m upset, surprised that I would even think of refusing a procedure he says is necessary. Where was he in November? December? Why am I just now talking to him, having passed through two biopsies and several scans? Why did I even drive three hours for this appointment if he can’t give me a definitive diagnosis? Why does he know absolutely nothing about me or my circumstances?

He says they think it’s either classic Hodgkins Lymphoma or PMBCL, and even though it’s eroded into my sternum, which suggests bone marrow involvement, it’s at stage II.

“Bulky,” I say.

He’s surprised and annoyed I know this term. Bulky tumors have a poorer prognosis.

He says I’ll need chemo and that it’s really not that big a deal nowadays because they have a lot of medicines that reduce nausea. My anger flares brighter than my tumor on the PET scan, not only because this is a blatant lie, but because it’s an insult to every person who has died of chemo and not the cancer, who deals with the side effects of the chemo for months after treatment, who suffers unimaginable and often unspoken things for months, believing their former self will greet them on the other side.

This is the most dangerous oncologist a cancer patient can face. One that sugarcoats. One that can’t tell the truth, especially to himself. One who will say anything just so you’ll agree to follow the protocol, no matter what the outcome will be. An oncologist who is too afraid to tell someone they’re dying and that suffering through chemo may not be worth the couple extra weeks it may give them because those weeks will be spent in agony. An oncologist who can’t or won’t tell you it’s time to get your affairs in order.

“So you’re telling me I won’t puke up my stomach lining?” I ask.

“Well, I didn’t say that,” he says.

No big deal.

I wasn’t even very concerned about the nausea. I’m more concerned about the chemo brain. I’m trying to weigh the pros and cons, trying to preserve some quality of life for myself following the chemo. Trying to choose life on my own terms, as much as possible. He’s not going to help me with this equation.

After he goes over the two regimens they plan to use, whenever they can figure out which cancer I have, I ask about specific side effects of each drug. He snorts and shakes his head more than once, as if my questions or I am silly.

“Look,” I finally say, “It’s been months, and I don’t even have answers to my basic questions. And now you’re proposing I go through a high-risk surgery (even higher risk for me because of the tumor and where it’s located) and agree to these chemo regimens. I don’t even know what my prognosis is with and without treatment.”

“Fine,” he says, “6 months without treatment.”

He throws this out like a jab, like I deserve the pain of it.

As he continues to talk, he continues to contradict himself, continues to evade my questions, snickers at my concerns.

When I ask what the suv max numbers on the PET scan tell us about my cancer, he says, “Nothing. That’s just how bright it is.” Well, duh, and thanks. An oncologist tells me later that they’re some of the highest numbers he’s seen. They indicate how aggressive the tumor might be.

Nothing.

He refuses to move forward with any treatment without the third biopsy.

My sister and I leave the appointment completely destroyed, set adrift.

We drive over to the hospital’s financial office before leaving Salt Lake so I can drop off my financial application, as instructed. The man there makes me sit down in his office as he goes through the materials.

I’m clearly in no state to do this right now and didn’t know I would have to sit down with someone when I dropped off the application. I’m still crying, my eyes swollen, my face red.

“You don’t have your bank statements here,” he says.

I tell him I feel it’s a violation of my privacy to have to provide my statements with a list of my transactions.

“We just need them to make sure you don’t have a half million dollars set aside somewhere,” he says.

Both I and my sister let out a bitter chuckle.

“As if they would be here if they did,” my sister says.

“Yeah, and I’d have insurance,” I add.

He refuses to take the application without the bank statements, even though I’ve provided my tax returns, pay stubs, and more.

“Now, let’s discuss a payment plan,” he says.

I’ve put down that I can pay $300 a month. He says right now the monthly payment is over $2,500 and asks if I can pay $1,200. I shake my head. Who does he think I am? He has my income right in front of him.

$700?

I shake my head. He threatens sending my debt to an outside agency if I can’t pay that amount. His eyes are dry, cold. I was just told I have six months to live unless I agree to a surgery and chemo I can’t afford. My eyes are wet.

I just shake my head again. I’ve never felt so low in my entire life.

He must take my absolute defeat as stubbornness because he makes a show of calling his superior to get approval for a $300 payment, as if I should be grateful. I should see in this caving that I have some power, but I feel the opposite. I leave his office completely empty.

A social worker calls a day or so later, concerned that I refused the biopsy and therefore treatment. I tell her what happened during the appointment and at their financial office. What my experience has been since November. She says that this experience is not the norm, that I shouldn’t have been treated this way, that there’s a separate financial protocol and team for cancer patients.

Why, then, was this my experience? Why was I treated this way?

The oncologist never calls me back, not even to go over my labs. I look up the results and discover I’m anemic, and that my immune system is really low. I start taking an iron supplement and avoid sick people.

A different oncologist later tells me to continue with the iron and confirms the anemia, adding it to my chart. He seems appalled no one has ever gone over my labs with me. I just shake my head.

March 2020:

A social worker calls a couple weeks after my thoracotomy. She’s concerned because, on the survey patients are required to fill out before each appointment, I’ve listed my “distress” as a 6 out of 10.

My beloved 14 year-old dog had passed away a couple days before the survey. That same day, I received the final pathology report from my third biopsy, with a final diagnosis of aggressive b cell lymphoma. I was halfway through the 6 month prognosis the oncologist had given me at that point. I’m dying and fast.

Yes, I’m distressed.

But I assure this healthy person that I’ll be ok.

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