This is probably the most Frequently Asked Question to which most people in most circumstances don’t truly care to hear the real answer. “How Are You Doing?” is often the slurred appendage to “Hey,” as in “heyhowurdoon?” Often, “How Are You Doing?” is more a friendly informal salutation than a genuine question. All anyone really expects in return is a “fine” as we pass quickly in the supermarket or arrive to a meeting. The last thing anyone actually wants to hear is the long drawn out story of How You Are Doing. For the past several months, I have commonly been the recipient of a heretofore unfamiliar variation on the “How Are You Doing?” question: the one where the questioner really does want to know How I Am Doing.
Yes, I still get the everyday obligatory “heyhowurdoon?” and the dude-ified abbreviation “sup?” with attendant head bob. Frequently I’m now approached with “Heyyyyy, How Are YOU Doing?” with the extended cheery “ay” in “hey,” clearly enunciated capitalized words with the vocal emphasis on the all-caps and audibly italicized “YOU,” ending with the full-on, g-included, rare-in-Texas, two-syllable version of “Doing?” There’s often a simultaneous tip of the head, scrunch of the brow, and pat on my shoulder or hand. In this format, the question is sweetly sincere, but demands more than just a cursory “fine” from me. Kind people genuinely want to know How I Am Doing, and the truth is “It’s complicated.” Caught at any given moment, however, I am indeed “fine.”
Here’s How I Am Doing:
Radiation therapy has left me with a conductive hearing loss in my right ear. I can’t hear your voice over the world’s rumbling ambient noise unless you are to my left. My own voice, chewing, swallowing, stomach grumbling, as well as louder environmental noises bounce around and echo in my head incessantly. The space between my ears can easily become a racquetball court of clatter. It occasionally mimics some of the scary “am I the only one hearing that?” phenomenon that started this whole thing last August. Of course there are worse things than being deaf in one ear, and I'm grateful I've had no real pain, nausea, or other debilitating physical symptoms. This deafness and accompanying auditory weirdness would not be nearly as unsettling if it were not a 24/7 proxy for the tumor, a constant reminder of why I have the doggone deafness in the first place. Just when I have almost forgotten about all this for one hot second, I’m immediately reminded by the ocean in my right ear, even when alone in a silent room.
I’m tired. All the time. I’m adjusting to this as a “new normal” and hoping it goes away. My oncologist tells me this can be a lingering effect of radiation that can last for months, sometimes “forever.” It’s been months, but I’m still tired. I wake up in the morning bright eyed and bushy-tailed, but the sack of fatigue hits me by mid-morning like a paint can in the face of a Home Alone burglar. By the time I get home from work, I’m often ready to crash for the night. If we run around and do some evening stuff I can keep going, but 5 minutes on the couch or the La-Z-Boy and I’m out. I purposely rest all afternoon on the days I have an evening clinic shift and I do fine. Hey look, I’ve had a malignant brain tumor. I've had surgery. I’ve had radiation, I’m on several medications. I work more than a full-time job and have 3 kids. I deserve to be tired. I feel that if I’m falling asleep that readily that my body must need the rest. But I don’t want to sleep my life away at this point.
I’ve had a series of MRIs every 2 months since surgery in September that progressed from “expected post-surgical inflammation/changes” to “radiation induced changes around the surgical cavity” to “concerning area for recurrence near the surgical site” to “previously noted concerning area has decreased, but warrants continued follow-up.” Blood work and a week of oral chemotherapy every month has barely fazed me, but lately it’s been fazing my platelets. Please don’t pat my shoulder or hand too hard when you ask How I Am Doing. Living blood test to blood test, MRI to MRI, appointment to appointment is stressful. The 1-2 day wait between the MRI and the neuro-oncology appointment where I get the results is the worst of all. A good friend has dubbed this unique brand of stress “scanxiety.”
In a weird sort of way, I enjoy my MDA appointments. There's a comforting unspoken solidarity in the elevator as it rises to the 7th floor full of us "head cases." Nobody asks How I Am Doing. Everybody smiles, nods, and knows "It's complicated." Sometimes I see this young lady sporting a scar matching mine being pushed in a wheelchair with a portable suction machine in her lap and a bag of liquid nutrition hanging from the pole. I smile at her while I cry a little inside; I can walk, swallow, and eat perfectly well. Like everyone, including my “previous” self, I get a headache now and then, slur a word here and there, become frustrated by simple problems, occasionally get a little off-balance when I stand up too fast, or get a song stuck in my head. Now all these little dopey everyday occurrences carry so much extra weight and meaning. Every. Single.Time.
I worry about what’s going to happen. Waiting for the next shoe to drop. Then I worry about how much I’m worrying about it. I can sometimes get thrown into a spiral of outright shaky panic over making the simplest decision (“What do you want for dinner?”). Yet when in my comfort zone of motor memory tasks, like solving a Rubik’s cube in a minute or (believe it or not) being a pediatrician, I fall right into a steady rhythm and don’t miss a beat. Again it’s a new normal. I must constantly remain self-aware and reflective about How I Am Doing. I have a trustworthy team of friends and co-workers to keep me in check, and my always supportive family to talk me off the ledge when I can’t decide between 3-bean soup or spaghetti.
Speaking of dinner, my appetite has changed considerably. I have lost about 20-25 pounds through all this, which I had been wanting to lose for years. Be careful what you wish for. I’m eating less, eating healthier, and trying to stay a little more active. These are all good things. Still it’s uncomfortable when people unfamiliar or even vaguely familiar with my situation say “Hey howurudoon? You look great! You’re so svelte. Have you been losing weight?” Cue Debbie Downer awkward brass wah-wah noise. “Yeah gee thanks I’ve lost 20 pounds! This MDA diet is the best ever!!”
So when you ask me How I Am Doing, please remember that I may not have heard you, I’m very tired, I may be getting my latest blood or MRI results tomorrow, I’m worried, I don’t know what I want for dinner, but I'm happy these pants fit again. “It’s complicated.”
I really do appreciate you asking. I know you care. Thank you.
-kpb 6/17/14
