It’s a frightening thing to say; to admit. And on Valentine’s Day 2019, I learned at my local ER that I have cancer. Chronic myeloid leukemia, to be precise. The same cancer that killed my husband’s grandmother; a version of the cancer that plagues my grandmother now; a cancer that allegedly isn’t hereditary; a cancer that statistically is seen more often (yet still rarely) in adults more than twice my age; the “best” cancer to have, so I’m told by doctors.
Relief washed over the face of the ER doctor who gave me the news, when I didn’t break into hysterics.
Instead, I stared, completely dumbfounded and in shock. “Well, that went better than I thought it would,” I overheard him say to the nurse standing at the station just outside my curtain. Doctors and specialists started filtering in, some telling me I was to be sent for this test or that, others deciding I was to be care-lifted to the nearest large, university hospital with an excellent cancer care canter. I just sat silently, weeping the whole time, trying desperately to comprehend and failing miserably. I was scared, I was tired, I was anonymous.
Finally, I insisted everyone just stop. “I’m not going two hours away, I’m going to go home and process this news.” The oncologist looked shocked and annoyed, “Do you realize you could die? If you get a nosebleed or a bad headache, that is a medical emergency!”
“I feel perfectly fine,” I calmly replied, “I have none of the other symptoms you say I should have. I need to go home and rest and think. I’ve been under watch all night and day, and there is nothing more to be done until the chromosome test comes back next week, right?” I wriggled uncomfortably, trying to alleviate my bad back and leg which were killing me from the thin, unsupportive mattress.
The oncologist argued for me to stay another 5 days (over the weekend), then asked incredulously why on Earth I needed to go home? As if on comedic cue, an actual jackhammer sounded in the hallway outside my room.
A million thoughts raced through my mind, and I tried unsucessfully to explain through exhaustion and fear. What my brain said was, “I am scared; I am bored; I am tied down and cannot get away; How much is this costing?; 5 more days!? The doctor promised!; I need to reassure my frightened kids; I need to reassure myself that I am not going to keel over any second; I need to process all this information; I need true rest; I need to get calm; I need to go outside; I need some privacy…” What I actually said (according to my mom) was, “I want my own bed and my doggie!”
The oncologist left to consult with his fellow specialist, the one who had driven nearly an hour to talk me into being admitted the night before so testing could be done right away. He came back in a few minutes, and said once the hospitalist cleared me, I could go home. I felt a wave of relief flood over me, like Dorothy in The Wizard of Oz, “All I kept saying to everybody was, ‘I want to go home,’ and they sent me home!”
I had gone to the ER that night due to odd chest pains.
It didn’t quite feel like anxiety, and it was sharper than asthma. I had taken a hot shower to help stay calm and open passages, I took a sinus pill, and I tried laying down on my side at an angle. However, the pain became worse. It was a strange pain.
My husband was a day away from returning from a business trip, and I was home alone on Valentine’s night with three kids. To top it off, I don’t often drive, due to other medications I take for my disability. I looked at my oldest daughter and tried to swallow my rising panic. Was I having a heart attack?
“Kids, I’m going to call 911,” I told them, “but I don’t want you to worry. I just want to make sure I’m ok. An ambulance will come, and some helpers will come in and check my temperature and talk to me. I’m sure I’m fine and just being weird.” My youngest burst into tears.
When the ambulance arrived in very short order, they looked me over, heard my tale, and strongly suggested I go to the hospital with them. I glanced at my frightened babies, and my gut told me to listen. As it turned out, the chest pains were legit, stemming from too many white blood cells clogging the sternum.
I have cancer.
I am lucky. It is treatable, and after just two hellish months of weakness, deep pain, and fevers, I already feel much, much better. My white blood cell count in the hospital was over 200K, and is now down to 30K at last count. Normal is 4-11K.
After a week of being home and in denial about the diagnosis, I decided to pray, “Lord, if this is true, please send me an unmistakable sign.” That day I felt unusually run down, and began having severe pains in my side that sent me to the ER again. Every symptom I hadn’t had the week before, I had now.
It was a strange experience. I was so sick, I was beyond thinking, reasoning, or anxiety. I saw and I felt and I was aware, but I was apart from myself; a mere animal; an infant. Survival was not a conscious thought, I merely responded to instinct. I opened my mouth to be fed, but knew nothing. I slept and dreamt erratic, fever dreams but felt no fear or anguish. I cried because of the immense pain, but I was not angry or afraid. There was no struggle or stress, I just “was”. I simply existed in an odd peace made of deep illness. I have never felt like that before, and I’m not sure if I want to again.
My oncologist thinks this has been building for 4 years, which actually makes perfect sense. I haven’t been seen by a PCP (primary care physician) in that long (no one would take me because of my disability and chronic pain. Read: no doctor would take me because of my legitimate need for pain medications), only Nurse Practitioners and pain specialists who vehemently insisted I needed a psychiatrist and antidepressants (see, “It’s all in her head.”), along with implanted spinal cord stimulators and a variety of injections.
I complained my immune system seemed low; every time a kid came home with a sniffle, it turned into the sinus infection from hell for me. They said I was fine, but had had too many antibiotics; I needed more saline spray. I complained about chronic fatigue, they recommended physical therapy. No one thought to do a simple blood test.
I have cancer.