Next week, I’ll start bone-strengthening infusions with Zometa. At this point, I’ve become fluent in a new medical language. Acronyms, injections, infusions, cycles. It’s a strange fluency. You learn when your life depends on understanding what’s going in. You comprehend what’s coming out and breaking down.
Today is the last day of this chemo cycle.
This week, I had a conversation with my oncologist, Dr. Ali. Picture a kind, gentle man with a soothing Hindi accent—someone who radiates calm even when delivering frustrating non-answers.
After some small talk about my ER visit last Saturday, I asked what I really needed to know. I had shown up gasping for breath, convinced I was having a heart attack or asthma attack. It had been something entirely new. I was stabilized by oxygen and told my tests were “normal.”
“Dr.,” I said, “can you tell me anything about this treatment? Shouldn’t the blood tests be showing something? Change? Movement? Something?”
“These are just standard blood tests,” he replied. “Please be patient. Everything will come in its own time.”
“Doctor,” I said, now in full-speed steroid-brain mode, “I have three girls. I live alone. I’m going through a divorce and custody battle. I don’t live near family. I have no full-time caregivers. I understand the concept of patience, but I also have a real-life situation. I need to know what I’m working with.”
He was kind but firm: “I can’t say for certain without a bone marrow biopsy. The blood work shows how your body is tolerating treatment—not whether the cancer is shrinking.”
So I asked the next logical question: “Will Dr. Vij in St. Louis be able to give me actual answers?”
“Yes,” he said. “But only after the biopsy. He needs his own set of results. If I did one here, he’d just run another anyway.”
“So… I have to wait until May 7th. Then I need to go to STL for labs. After that, I get a biopsy and wait again for results? Just to find out if this chemo is working?”
“Yes,” he said gently. “That’s what I’m saying.”
I sighed. “So basically, I have to sit tight and just… wait.”
He nodded. “Yes. And breathe. You’ve been doing very well so far. We’ll schedule the transplant sooner than you think. But no promises yet.”
“Okay, Dr. Ali,” I said. “I’ll practice breathing again. Because clearly, there’s absolutely nothing I can do to speed this up.”
He smiled, “No, there’s not. But everything is going to be okay. I’ll see you next week.”
So, as of today, I know just as much as I did yesterday.
My persistence in asking these questions probably just exhausts my sweet, composed doctor. He’s only 42. Here I am, showing up high on Monday steroids. I have rapid-fire speech and a thousand anxious questions. He’s probably diagnosed me as impatient and dramatic, but definitely not boring.
Honestly, I’ve let these treatments wear me down. I haven’t worked out. I’ve slept more than I’ve been awake. I’ve gained weight I didn’t need. I let the fear of not being capable of finishing anything keep me from starting anything at all.
And I hate that.
I’ve survived a spinal fracture, fusion surgery, 30 rounds of radiation, and two months of chemotherapy. I haven’t lost my hair. I haven’t vomited. My side effects are minimal compared to others. That’s something. That’s a lot, actually. But instead of living in that strength, I’ve been wallowing in uncertainty.
The waiting has become its own cancer.
What good has it done me? The worrying, the wondering, the obsessing? I’ve wasted time in fear of the transplant call—too scared to start something and not finish it. So I did nothing. And now I regret that.
Yes, I felt crummy. And no, no one’s judging me. But I have higher standards for myself. I’m the one who has to live with me—and so do my girls. I’ve been in bed more than I’d like to admit. They’ve been amazing, but I know they’ve felt it. The drag. The pauses. The movies we didn’t finish. The games we stopped halfway through.
I see the laziness spreading—clutter piling up, chores half-done. I’m too tired to correct attitudes or referee pouting. But despite all that, my daughters are holding it together. They get to school on time. We brush teeth, shower, eat together. The kitchen’s clean, the laundry’s done, the house is functional. That’s something too.
Still, it’s not living. It’s just… maintenance.
Sorry. That probably sounded like a long-winded tirade.
This week, I wrote a 12-page paper on the five types of domestic abuse. The paper had a special focus on economic abuse and the power of empowerment. I got into it—really into it. It lit a spark. Maybe I needed that spark to remind me what I’m capable of when I’m not just waiting.
And maybe Legal Aid of Missouri picked up my case. I think I have an attorney now. She said she’d call once she’s finished reviewing the (enormous) file. I’ve tried not to worry about it. It’s one of the many things I can’t control right now.
I’m also trying to find a little temp work—something from home to bring in income. If I find anything, I’ll let people know. In the meantime, I painted my bathroom. It looks good! It’s not easy—harder than I remembered—but there’s something satisfying about finishing even a tiny project.
The girls helped. It was messy, but it was fun. K is more attentive with details than C, but both were into it. It reminded me of painting with my dad as a kid. I hope they remember this. I hope they remember I kept trying.
So here’s where we are:
Today marks the last dose of Velcade and Revlimid for this cycle. I’ll take a one-week break, then head to St. Louis for what I assume will be an avalanche of tests. I hope they’ll tell me something useful. I hope it won’t be more of the same: “We’ll call in a couple weeks. Sit tight. Just wait.”
Waiting is not my strength.
Cancer? Fine. Chronic, incurable, mysterious cancer? Fine. I’ll fight it. I’ll eat better. I’ll work out. I’ll change my environment. But give me something tangible to do. Let me put something on a calendar. Let me feel like I’m doing something—not just surviving the unknown.
Please, God, give me something I can work with.
“Something to Do, Somewhere to Be”
Before the neck fracture, I was doing all the things. I didn’t know I had cancer. I was working, going to school, functioning. My diet wasn’t great, but I was in motion. I know I would’ve gotten sick eventually—just like anyone else. But I wouldn’t have been anticipating it. I wouldn’t be wondering what illness chemo can cause, or whether a transplant will kill me. After treatment, I wouldn’t return to a house. I wouldn’t be questioning if it’s clean enough. I wouldn’t question if it’s safe enough or calm enough for my body—or my children.
I just want something I can do with my time. Something with my girls. Something that feels like life again.
Maybe it was. Maybe it’s hard to read. I don’t know. I guess I’m a little bored… and weirdly sad that today is my last chemo session. As strange as that sounds, chemo became the only constant in my week. My nurse, Molly, has been such a gift. She doesn’t mind my ten-minute steroid-fueled monologues. She patiently listens before hooking me up to the machine. Then I pop in my headphones and disappear for a while.
Now I have to find something else to replace that space. Right now, it’s writing, movies, TV—but that doesn’t feel like much. It doesn’t feel like enough. Especially not for someone who knows her time is more limited than most.
Still… my plan is this: To intentionally be as positive as I can. To take charge of my thoughts. To take charge of this body and drag it out into the world—whether I feel like it or not.
Because if I don’t, I’ll keep slipping into a funk. And honestly, nobody wants to be around a cancer patient stuck in a funk. I know I wouldn’t.
The girls and I tried on wigs the other day. They said the hair looked too shiny and perfect. They preferred the bald head, so I still look like me. I’m taking that as a compliment. I guess I don’t look fake?
If I do wear a wig down the road, it’ll have to be under a hat. Otherwise, it just doesn’t feel natural. Honestly, I’m more excited about the possibility of losing the rest of the hair on my body. That and the weight loss are two of the few perks I’ve got going for me right now.
But please, God—let me keep my eyelashes and eyebrows. I have never drawn eyebrows in my life. I don’t care how many YouTube tutorials exist—no amount of artistic talent will help me with that.
So if anyone’s making a prayer list: eyelashes and eyebrows, please. Thank you.
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