As published on The Huffington Post
Mom and I return home from clinic at the National Institutes of Health (NIH) Clinical Center. Two days are down with three remaining in this chemo cycle, the sixth of 14 over 10 months. Mom throws her bag over her shoulder -- heavy with unopened water bottles; her black book containing labs, treatment protocol and doctors' contact information; and the sandwich I'll try to eat right away before nausea consumes me. Mom unravels my walker, opens my car door, helps me slide out with my leg brace, and carries my IV pump which will deliver medicine to protect my bladder.
My heart rate accelerates as I labor up steps in reverse and on my behind, because it is safer this way. Groggy and depleted, I shuffle into the house towards my favorite spot for the next six hours: the couch.
I have been visiting my aunt and uncle's home in upper northwest Washington, D.C., not far from NIH, for Passover seders and Hanukah parties my whole life. Aunt Flojo gave us a house key when I began treatment. "Stay whenever you want. The key is yours."
The short couch had been yellow and covered in plastic until their kitchen renovation. Then, it was re-upholstered with brown fabric, drenched with a furry beige blanket, and moved to the 12-window nook overlooking the swimming pool.
Barney, the elderly Soft Coated Wheaten Terrier, sees me and hops off the couch. I collapse and Mom takes off my shoes and swivels me and my brace to face the television. Then I lie at the angle that minimizes nausea, my legs outstretched and my toes resting against the opposite side. It's as if the couch was custom-built. I drape the blanket and brush my fingers where it and the couch meet. They are both so soft. I sink down, dreaming of never touching this couch or blanket again. Keep reading, here.
Wednesday, March 5, 2014
As published on The Huffington Post
Tuesday, March 4, 2014
As published on CancerFightClub
Batmobile or bust, I thought, so when the Make-A-Wish Foundation denied my request for the Batmobile because it went over 10 miles per hour (and not because of its rockets), I declined any wish. Friends convinced me to reconsider. I became a sounding board for their fantasies: sitcom roles, championship sports events, and girls. Dates with divas escalated to strippers and then willing participants. “Tell Make-A-Wish you need her for your cancer… tell them to get another one for me, too,” a friend said.
Time feels different in childhood. Three months later my entire left hip bone would be removed and the muscles would be stapled and taped to other muscles. But with so many epic battles in Madden 2001 with friends and homework assignments remaining before surgery, three months was a lifetime. Though I couldn’t comprehend that life would be different without a left pelvis, maybe my subconscious knew and pushed me towards my wish.
I had always been fascinated with consumer electronics. In middle school I envisioned my bedroom as a gamer and movie buff’s paradise with booming Dolby Digital 5.1 surround sound and beanbag chairs. But it was not to be on my 19-inch TV/VCR combo that only had an A/V jack.
When we had become of driving age, my after-school sporting and video gaming friends expanded and we took over my house’s rec room in the afternoons. My parents happily obliged.
Once down the stairs, the rec room opened into a wide space with exercise equipment and a billiards table. To the far left was a long nook with three couches, blankets, a heater, a television and, after my friends and I took over, video games.
The rec room had mostly gone unaltered since I could remember. The thick carpet soothed cold feet and the dim lighting calmed overworked brains. It would always be a haven, beginning from when I could barely climb onto the couch next to my dad during Redskins games. Keep reading, here.
Thursday, February 13, 2014
I am giddy with excitement for this new upcoming project, but shh, let's keep it a Secret.
Wednesday, February 5, 2014
My memory failed me on Christmas when JD asked what movie we saw the Christmas before. Normally providing more details than JD wants, and able to relive most episodic memories, I couldn't recall and still can't now six weeks later.
Many people who have read my book have asked what I used to detail my cancer journeys. For the first, my parents kept a three-ring notebook with test results, health research and correspondence. For the second, I emailed my friends Bubble and Hamburgers daily. Bubble saved my emails and printed them for me years later. I used those materials to write my book, but I had nothing else besides lightning-bright memories. I never kept a diary.
There is nothing wrong with me and my brain—after all, JD would say that he can't remember what he ate for dinner the other day. Maybe my failure is due to my aggregate memories piling up; starving my brain of energy, a necessary byproduct of staying super lean; or our 2012 Christmas movie sucking. No matter, my ability to recall autobiographical memories is one of my favorite attributes, and not being able to irked me.
My friends from my first rock-climbing trip have been sharing their favorite thoughts about one of our group members, Sunny. These thoughts are often specific, like Sunny teaching how to "creepy hug" someone. I’ve been trying to remember detailed memories of Sunny, but I can only think of her generally: hilarious, glowing, courageous-as-all-fucking-hell. Without specifics then it is the latter term that stands out, even though I bet Sunny would prefer we remember her by the first two. My memory has failed again, and this time it saddens me.
Rereading my previous blogs about Sunny here, here, here and here have helped. Her voice and smile are returning. I can see her in our van en route to the next climbing wall, providing too much information on whatever we were discussing. I see her frolicking with the enviable inhibition of a child, so full of life.
Seven years going this month, my blog has become a snapshot into my past and a way for me to re-fire synapses. Now I can always remember Sunny even though she passed away yesterday due to cervical cancer.
Tuesday, January 28, 2014
No ice cream, or die: an unimaginable predicament and I wasn’t even given the choice. My bone marrow donor unknowingly transferred her milk allergy, which began affecting me six months after my transplant, leading to frightening episodes of hives, mouth swelling and chest tightening. I visited an allergist who administered a skin prick allergy test. Milk protein resulted in a 10-millimeter reaction, while just a 14-millimeter reaction would have indicated potential anaphylaxis. I had to give up milk products forever.
I dealt by going through the classic stages of grief: denial (read: ER visits), anger, bargaining (read: brainwashing myself into thinking that soy is great), depression and acceptance. I achieved acceptance after understanding the relationship between allergies and health. Eliminating my allergies and receiving seasonal allergy shots cured my eczema and reduced my ear infections by 90%.
Last month I visited my allergist for my annual seasonal allergy testing. “Has any progress been made in developing shots for food allergies?” I asked the nurse, an annual inquiry in which I know the answer.
“No, unfortunately. But, we can test you again. It’s been about seven years since your last milk protein test.”
“Sure, why not!” I said.
The nurse pricked my arm with pollens, molds and milk, and my allergist came in later to see the results. My milk reaction had reduced from 10 millimeters to one.
“Many people outgrow their allergies and you may no longer be allergic to milk,” he said. “I see this in children and it makes sense since your immune system is only 10 years old.”
I suspended ecstasy until I was certain. That evening I began my kind of allergy test: drink milk one ounce at a time until I clearly show signs of allergy, go into anaphylactic shock, or feel confident that my allergy is permanently gone.
“How long will you continue your test—until you drink 8 ounces of milk?” my dad asked.
I reminded him that I haven’t had a real milkshake, Klondike bar, Chipwich, Dairy Queen strawberry shortcake, or banana pudding in a decade. “I’m thinking more like 40-60 ounces,” I said, knowing that once I give myself the green light, I’ll probably consume so many milk products that I’ll cause a milk allergy.
I drank one ounce without a problem, two the next day, and so on. I am now up to 12 ounces. This test has reminded me why I always added chocolate powder as a boy: white milk tastes nasty. Time for my medicine, I think before each new, daily test.
My dad bought me Nesquik powder to make my medicine tolerable. To calm his fear that he’s aiding in my anaphylaxis, I promised to carry Benadryl the way I used to before giving up milk. Surely decade-old pills are still effective.
Do you want to see how this experiment unfolds? Follow my experiment updates on Twitter and maybe, hopefully, I pray, soon you can find me at every ice cream shop in a 70-mile radius.