Cancer broke me
Survivors need to know that they’ll be forever changed by the disease
I walked toward my family after the bone-marrowbiopsy, knowing that my diagnosis of leukemia had irrevocably been confirmed. Proudly self-sufficient throughout adulthood, I suddenly had lost complete control of my life. Cancer was my new king, and only a rebellion led by princely oncologists and aided by noble nurses could overthrow the tyrannical father. Me? Without control, I was the peasant’s bastard child left to beg for scraps.
For the most part, the doctors were wonderful in explaining what I could expect. They acknowledged that they didn’t have all the answers. I was about to embark on a debilitating and painful course of treatment that would last for months and by no means guarantee the eradication of my cancer.
A tube was surgically inserted into the major vein that carries blood from my upper body and back to my heart to facilitate the injection of toxic chemotherapy drugs. My long, thick black and red hair fell out. Another side effect was the crippling pain in my joints, similar to rheumatoid arthritis, or so I was told. I was prescribed enough different medications to start my own personal pharmacy.
My blood chemistry was watched closely. I received many transfusions. I learned more about blood-cell counts than I ever wanted to know. When the white cells were low, for example, I learned that the risk of serious infection increased. Cancer can be beat as long as the cure doesn’t kill you, which is a very real possibility. This reality was brought home by scary questions from doctors.
“If you stop breathing,” my doctor asked, “do you want us to intubate you to save your life?”
“Hell yeah,” I replied. “I’m only 28. I just need a few minutes to catch my breath.”
Little did I know how much that would mean a few months later.
In August, after my third chemotherapy treatment left me with no white blood cells, I developed sepsis, a serious infection resulting from a weakened immune system. The intensive-care unit doctors told my family that controlling the infection was out of their hands, and my loved ones watched over me day and night as I fought for my life. My blood pressure fluctuated wildly. A dangerously high fever ravaged my body for nearly six days.
When I opened my eyes nine days later, my mom and my friend Rob were standing over me. I couldn’t recall what had happened. Talk about losing control: I had lost more than a week of my life! I was miserable. The respirator tube caused a horrible, constant gagging sensation that prevented me from speaking. I made a writing motion and was given a pen and paper. But I had lost so much muscle control that my hands wouldn’t work right. Besides, they were tied to the bed.
Seeing the frustration in my face, my mom and Rob started to play alphabet charades—the one thing I could do was nod my head. As they called out letters, I nodded yes or no and eventually we were able to spell out “R-O-O-T.”
They looked at each other strangely and simultaneously asked, “Root canal?”
I shook my head no.
I nodded “yes” vigorously, and they jumped up and down like winners on Wheel of Fortune. They cried because I was awake and alive and, of all things, I wanted root beer.
I recovered from sepsis, but after my last chemotherapy session my white cells dropped again. I developed cellulitis in my jaw, a painful infection of skin and soft tissue that sometimes can lead to sepsis. The symptoms were so similar to my previous infection that at first I believed I was going to die. Within a very short time, I had the antibiotics I needed and my rising fever leveled off.
For the remainder of my stay, the pain from the cellulitis was excruciating. Thanks to my depressed immune system, I also developed more than a dozen canker sores on my tongue. A minor ingrown toenail caused my toe to swell to double its normal size.
Despite the pains and complications, the treatment worked. My cancer went into remission and I went home. I couldn’t wait for everything to go back to being normal. But my wish for normalcy, too, was out of my control.
Initially, my cancer was the only conversation topic anyone brought up.
“Did you get closer to God?” friends asked me countless times.
“God didn’t come visit me, but my mom wouldn’t leave,” I replied habitually.
If there is any one thing a cancer patient should be told, it is not to expect to come out the way they went in. Cancer broke me.
One condition doctors never mentioned is “chemo brain,” where cancer patients lose cognitive abilities. No one told me: “Kelli, when you go back to work you will find out that your ability to do simple math in your head will be gone. About a month later, you’ll realize that your amazing retention is remarkably unamazing. And, by the way, when you and your boyfriend go to Disneyland in May, your innate sense of direction will lead you into several dead ends until you admit that you now have no sense of direction.” The loss of these basic life skills continues to reshape my reality today.
More serious issues, like surprise anxiety attacks and my lessened emotional coping skills, are harder to deal with. Nowadays, I grab a calculator to do simple math and some Xanax for anxiety (if I really need it) and move on.
I’m blessed with a supportive family and employers who care enough to accommodate the diminished capacities brought on by my disease. But my constant battle to regain control is not easy. I am stuck being the peasant’s bastard child begging for scraps from King Cancer and it sucks!
Recently, however, I began volunteering at the hospital where I was treated to talk to patients going through treatment. And that has given me a sliver of control by sharing how I survived what they are going through. A simple bitch session about side effects can bring smiles and relief to a cancer patient, and I choose to try to give that to them.
Volunteering has made me feel empowered. I no longer beg for scraps of control. I just show up on Mondays at the UC Davis oncology floor where the noble nurses smile at me and the princely oncologists acknowledge me. It’s like I’m starting a revolution to usurp King Cancer.
It feels damn good.