I’ve noticed that people often compare their tumors to edibles. It’s as big as a walnut or It was the size of a grapefruit! they exclaim. I’ve been telling my friends and family that my benign tumor is the size of a golf ball. That’s what it looked like to me, round and white on my MRI scan, surrounded by a much smaller border of spleen. I’ve learned recently that the spleen is about as big as a fist. Imagine something like a golf ball lodged in there. My spleen didn’t expand to accommodate the tumor, so the spleen to tumor ratio leaves my organ lacking. I’ve been joking that I’m going to buy golf shoes and shorts so my tumor will have friends. This is the third joke I’ve created in my life. It’s not a good one, but it comforts me every time I say it. The recipients of this feeble attempt at humor always laugh or smile.
I knew bad news was coming when I received a message from my doctor while at work on the Friday before Labor Lay. I’d seen her three weeks prior about the strange array of symptoms I’d experienced all summer. Some of them were new—the stomach and back pain—and some of them were familiar, like the extreme fatigue that rendered me splayed on my couch, barely able to move and aching all over. The latter were the symptoms I’d been experiencing my entire adult life and were caused by Chronic Fatigue Syndrome, (CFS) an immune system dysfunction with an unknown etiology. While accustomed to being laid low by my poor immune system, the things that usually brought me back to my baseline health were not working. After two months, I made an appointment with my general practitioner. She’d arranged for me to have a battery of tests, including an ultrasound of my abdomen. I had the ultrasound the Thursday before Labor Day. The next afternoon at 2:30 p.m. when I received my doctor’s message, the instructions were to call her immediately. When I returned the call, her office staff informed me that she’d left for the day, but they caught her as she was walking out the door. She returned and told me my ultrasound results: a two-inch mass in my spleen. She ordered an MRI stat, and I went home in shock.
A long holiday weekend is not the best time to receive bad news when you live alone and have no local family. But I do have a close friend who’s like a sister to me. I often drop in on her, and I drove over to her house after work. When I told her about the mass, she looked as though I’d slapped her—hard. As her shock wore off, she burst into tears. I appreciated her assurances of support but felt terrible that my bad news distressed her so deeply. I decided not to tell my family about the mass until I knew if it was a cyst, a benign tumor, or a malignancy. I have a small family, and we’re close and supportive. But my nearest and dearest had been through enough this decade. My brother had a near- fatal accident six years ago as well as several life-threatening events related to the aftermath of the accident. My father has Alzheimer’s disease, and we have witnessed his slow decline. At present, he lives in a nursing home, and we are thrilled when he speaks in full sentences. I didn’t want to worry my relatives unnecessarily or make anyone else cry. Instead I reached out to several other close, loving friends and waited.
Despite the stat referral for an MRI, by four o’clock on Tuesday, the first working day after the holiday weekend, I hadn’t received a call scheduling the test. The referral process did not feel very stat-like to me. I called my doctor’s office to advocate for myself, and by Wednesday morning I had an appointment. Thursday morning I lay in the MRI machine, endlessly holding my breath and letting it out. The MRI technician told me I did “great,” and I experienced an unseemly pride in my MRI capabilities.
The next day, back in my doctor’s office, she walked into the treatment room and announced that I did not have cancer. Instead she believed I had a rare, benign splenic tumor, a hamartoma. I asked her some questions about the location of the tumor, wondering if it could be causing my new symptoms. She didn’t know and refused to contact the radiologist, explaining that it would take too much time. This surprised me, as she’d been forty minutes late for my appointment after taking care of a patient in the treatment room next door. I knew this because I’d seen him being called into the treatment area ahead of me and could hear both of them through the wall. Informing me that she lacked time ten minutes into a twenty-minute appointment did not endear her to me, especially since I’d waited forty extra-nerve-wracking minutes wondering if I had cancer. When I pointed out that I was only halfway through my appointment time, she snapped that she’d spent an hour researching my tumor at home the previous night and cited all of the administrative time my appointment required. It didn’t seem prudent to argue with her, so I let the matter go. But I wanted to know the precise location of the tumor.
Later in the day, at the urging of a friend, I tracked down the MRI clinic. It took me about ten minutes to get through, only because I didn’t have the phone number. Every place I called, I stressed the word tumor. Tumor, tumor, tumor. It’s catchy. I’d never lie. I always described it as benign, but when I spoke to the office staff at my doctor’s office, and then to the hospital where I’d had the MRI, and then to the front desk staff at the MRI clinic, I explained that I needed information about my benign tumor. I could have used different language, saying for example that I needed more information about my MRI findings. I’m sure the various people I spoke to would not have been as responsive as they were had I used vaguer language. Tumor, even a benign one, is attention grabbing.
The radiologist answered all of my questions but couldn’t explain my symptoms. At least I knew where the tumor had lodged—right in the middle of my spleen. Nevertheless, when I had a surgical consult two weeks later and looked at the MRI scan, I was shocked by what I saw: a lot of tumor with a periphery of spleen. I’d spent the previous two weeks learning as much as possible about spleens and hamartomas. I sometimes describe myself as a freak of nature. I have an orphan disease (CFS), one that is not completely understood by the medical community, which receives few research dollars and has no cure or even standardized treatment. At fifty-six I had a huge, fast-growing cataract in my right eye, and now I had a rare, albeit benign, tumor. My new surgeon can easily remove the tumor, but it can’t be extracted without removing my spleen, which both he and I would like me to keep.
The surgeon believed that the hamartoma might be causing my symptoms. Two weeks earlier, my doctor had given me medication for the back pain, and I’d cut back my hours at work and temporarily put aside my writing at home. As a result, my health had begun to improve. Although the spleen isn’t a vital organ, it’s an important one, and it plays a key role in the immune system. Since my immune system is already impaired, I don’t want to hinder it further.
My surgeon told me he plans to consult with an oncologist since there’s still a miniscule chance my tumor is not a hamartoma and might be something more pernicious. I don’t want to be the recipient of more bad news. If nothing new comes from the consult, my spleen will be reimaged in three months. I’m hoping my health continues to improve and that my spleen remains in my body.
I’m thinking about golf a lot lately, something I don’t usually contemplate. I might even buy a golf ball so I have a tangible object to hold as I wrap my mind around this new twist of events. Whatever happens next, I’m ready.