Temodar: Low Lose Daily

Friday night Omi started in her crib and I rose to soothe her. Lili’s efforts end in breast-feeding or frustration, so I rose, dutifully, to soothe her, but when I reached down in the dark for my daughter my hand met the chunks of cold vomit. Stuck to the yellow nap of huanggou, the least hit of her three bedfellows: banma the zebra, Snowflake the snowdog, and huanggou, the big yellow one. A gruesome scene: I flubbed first by extracting the caked animals to the bathtub and attempting to rinse. That only blocked the drain. Second by replacing the catastrophized creatures with newbies out of the bedroom closet! She threw up again all over them and the backup fitted mattress cover! After that, Omi went to my bed with mommy and I retreated to the living room couch. Next morning she projected over an array of LEGO Duplo to the rug’s edge and I puked four times, emptying my stomach down to the dregs of bile. October got me twice.

Even last night I had to raise myself on pillows before closing my eyes as a precaution against nausea. Now that I’m reaching the end of the tunnel, though, my old friend Temodar’s arrived. FedEx van just swung by with a little present: Tiny carboard box courtesy of Dr. Chuda, Southlake Retail Pharmacy. Signature required.  

Take one capsule (100 mg) by mouth at bedtime daily. Take one hour after nausea medicine.   

Seizure Dream

Wednesday afternoon on the way to pick up Theo from Hanthorn, I felt a catch in my throat and told myself not to get sick, I couldn’t possibly be getting sick, not with Chuda, the oncologist, on Thursday, and the promise of treatments so close at hand. That night I ran a fever beneath a sweaty mountain of blankets, battling hot and cold, all night long. Yesterday I stayed in bed, emerging only for meals, and woke up this morning feeling halfway all right.

Obviously my chemo-compromised immune system is no match for Hanthorn. It’s Daddy versus Hanthorn and Hanthorn’s winning. This isn’t even my first time down since Theo started this fall. I lost a week in there somewhere … not sure which. Another facet to the situation—the steroids that were interfering with my nights—I dropped them Wednesday. Sleep loss in an endless flow of runny noses and a scarcity of Kleenex boxes is like a leak in the boat I’m paddling, on a river of runny noses.

It’s the tail end of naptime, Omi already beginning to stir and grunt herself awake. Teacher’s Training Day. Theo home and I just had to lay myself on the rug in his bedroom to quiet down the little guy with his Scotch tape magnet-tiling a trailer on the tow truck project. What happened in there is still hard to put into words. I think I had a dream. I was having a seizure. I was propped up in bed, punching myself repeatedly in the face. Obviously I wasn’t in bed. I probably wasn’t hitting myself. Whether in the dream or on the green rug in Theo’s room, though, I could not move—I was paralyzed—as if I were having a seizure.   

Temodar, Here We Come

Dr. Abbasi was able to slot me in this morning due to a cancelation and visit about treatment options discussed on Friday with Dr. Keleti: Both seem to agree that further radiation is a last resort option and may not even be the most effective one. More tried and true—well, I tried it, seven years ago—is, of course, my old friend Temodar. The gears are in motion for me to begin a low-dose regimen. and a clinical trial in which I would—if I joined now—but the sole participant.

Having this plan in place has relieved much anxiety. Yesterday’s flurry of desperate phone calls. The steroids I started taking Friday evening after meeting with Dr. Keleti (1 2MG TABLET BY MOUTH EVERY 12 HOURS WITH FOOD) have given me a terrific boost in energy, which is good for things like dishes and laundry, but also more irritability, which is bad for people like Theo and Omi and maybe even my students at Stone Table. I also started waking up a few hours after bed just surging with electrical energy and excitement (high on life, or just high) and ideas for poems that don’t hold up in the clear light of morning. I almost mailed my books to Donald Revell with a hand-written note after reading in There Are Three by the agonizing sleepless light of my iPhone, trying not to stir and disturb Lili who was awakened and disturbed anyway by the light of my iPhone! I wrote this in Notes on my phone:

The words are lovely, velvet, really, 
and had cancer not come calling I,
too, might have followed a similar rabbit
trail, entrail. However,
cancer rang at midnight and now I
can't sleep because of the steroids.
Death rang, night rain, and now I can't,
I just can't. I have to face my death, Donald,
but know that my face is shimmering
by the light of my iPhone.

OK. So, whatever. I went batshit crazy on the DEX in 2014. If I learned anything, it’s not to submit poems scrawled in the miserable middle of the night or show them to people I admire. Knowing this convinced me that I would have to continue to toil by day and not surrender to darker impulses and succumb to full-blown insomnia, so I swung by HyVee on my way home from Stone Table, mailed off a copy of Bad Astrocyte to my old China friend Kevin Hill at the cigarettes counter, the lotto counter, and grabbed a bottle of melatonin in the pharmacy, which bought me a good night’s sleep, thank God, and a better outlook on life and I did write a poem today but I’m not going to paste it in here because I think it just might hold up in the clear light of morning.

Yesterday with Dr Keleti

Yesterday’s meeting in the exam room, a kind of homey clinic with a prefab desk, the radiologist corroborated an impression of tumor growth as opposed to radiation necrosis, which he claims can occur in only between 2-12 percent of cases. Dr Salacz, on Thursday’s phone call from New Jersey, mentioned that radiation necrosis usually flares up but that you’d see improvement within a couple of months, not this greatening loss of the function of especially my left hand.

It’s 5:30AM. I’ve carried my blanket to a sofa in the living room to cover up while I type this up on my phone, one clumsy thumb stroke at a time. There is something growing in my brain. I keep thinking that. What is a brain to me but a collection, or recollection, of functions? Things that I’ve been able to do in my life, in my memory of my life, that were cool or fun like read in Chinese or write a poem, but also banal and basic like scratching my nose or walking to the bathroom. Well, as the latter functions go, my “spirit” flocks to the former. The other night I took a walk in dark: That freaked out my wife, but I saw the stars, I really saw them, for the first time in a long time, and that was, well, “pretty cool.”

I just had this dream of my father. He was wearing a black, short-sleeved shirt, Said he’d just been to a funeral. Mine? Would have been a cool answer. Evocative. But, no, you see, this was a China dream and he’d hired some unknown worker to install a lock on the gate to his apartment. When we got there, he reached under the gate. He was able to so this because it stood a few feet off the hall floor. He unlatched the gate and it swung open. Dad explained about the worker (I woke up thinking, sure, people are always doing dumb shit for money in China). He’d caught his thumb in the latch. Dad was too upset to speak, so he mimed what happened next with a dropper: He bled out. Over the course of several hours. Because Dad hadn’t answered his phone.

Health Report

Received word from a Dr. Abbasi this morning on the results of the tumor board meeting on my most recent brain scan: They’re thinking it’s new tumor now, growth, or “disease progression,” in light of the loss of function in my left side …. I will be scheduling to meet with a radiologist about the possibility of undergoing radiotherapy, again. Treatment options weren’t supposed to include that, but with the seven years that have elapsed since my last dose of radiation, it’s back on the table along with my old friend Temodar and my new friend Avastin.

Yikes!