Monday, April 30, 2012

The Tumor Resector: My April Cancer Peep

"Dr. Phil"

Two jokesters entered my room to remove my three epineurals, which had been inserted to control pain resulting from my cancer surgery. The duo always bantered and this time was no different, as they bet on the size of the gape and number of stitches needed. I loved their jokes, however sadistic, and they relished my reception.

Drs. Phil and Whidterschneidmannhaus were orthopedic oncology surgical fellows, working under Dr. M&M, a limb-sparing specialist and pioneer who always wore suits. According to Dr. Phil, he and Whidterschneidmannhaus didn’t have time to read the newspaper or keep up with the Redskins, a sin had they been in any other profession.

Dr. Phil was present at my surgical consult and bone biopsy that would lead to a Ewing’s sarcoma diagnosis. He was the first person I spoke to after waking up from surgery. A week later he had to lower my leg from traction, the most painful seconds of my life, and then convince me that twenty milligrams of OxyContin twice a day would equal three epineurals and one epidural, the truth.

Dr. Phil sent me digital pictures of my operation upon my request, and took pictures of my rehabilitation progress. As my rehab progressed he switched me from crutches to a cane. Years later he assured me I didn’t require a permanent cane to walk, as Dr. M&M suggested. I then permanently switched my follow-ups from Dr. M&M to Dr. Phil.

I witnessed his rise from fellow to wearing suits and having his own slew of fellows, to having a private practice and being named one of Washingtonian Magazine’s Top Doctors. I make an appointment every year to hear him praise my new stable X-rays. I might seek his annual approval in his native Ethiopia if he ever moved practices there.

Years merge together and Dr. Phil no longer remembers he was a fellow when we first met. He may not remember saying, “It’s amazing you can still walk pain-free,” banter I still love.

Two weeks ago I spoke at a sarcoma survivorship gathering, arranged by Dr. Phil’s nurse coordinator. Dr. Phil was scheduled to speak last, but ensured the night ended with me, instead. During my Q&A, Dr. Phil asked how to best approach young patients with devastating news. “That’s the most difficult thing for us,” he said.

I didn’t know the answer, noting that it could be different for each patient. If a doctor ever approached me in an overly comforting tone then I’d want nothing to do with him or her. But others are receptive to that method. Dr. Phil seemed conflicted with my non-answer, disappointed I couldn’t provide the secret yet happy he wasn’t screwing up all these years. “If you don’t know then nobody does,” he said.

At the survivorship gathering I was struck by how fresh most of the others were: I only met one fellow with a diagnosis earlier than mine. He was on his fifth or eighth resection—I can’t remember because, to me, his operations merged. With so many tumors to resect Dr. Phil still probably has no time to follow the Redskins, but he did create time to read my book, and I just finished his.

Dr. Phil is free to resect some of my freckles. We can bet on how much blood I lose. Blood loss reduces my iron level, so I’m hoping for a lot. What, too sadistic coming from a non-resector? Pediatric orthopedic oncology surgeons get all the fun.
One of the world's best pediatric orthopedic oncology surgeons

Leia Mais…

Tuesday, April 24, 2012

Dear Anonymous Allogeneic Bone Marrow Transplant Donor

Dear my umbilical cord stem cell transplant donor:

Nine years ago, frozen stem cells that had been collected from your umbilical cord were thawed and transfused into my vein intravenously. I had just undergone one week of obliteration, rocketing me to the edge of death, and your stem cells were to transport me back. We hoped your cells would repopulate my empty bones, kill any remaining leukemic cells, and produce adequate haematopoietic stem cells for normal functioning. If they failed then more obliteration would ensue followed by an attempt with someone else’s stem cells, assuming a new match could be found. However, already at the edge of death and having had received a lifetime (or several) of treatment, my organs could then only tolerate a “mini-transplant,” leading to a greatly reduced probability of long-term grafting. You were my great, red hope.

After a few weeks your stem cells produced a thousand neutrophils per unit of measure. After a few months, a sustainable level for all three blood lines: platelets, white and red cells. After six months, your cells changed my blood type from A+ to O+. After a couple years I received all my inoculations. After a couple more years I stopped getting colds as immunity strengthened. Now, they’re my stem cells, too.

Your mother’s consent to store your umbilical cord stem cells instead of discarding them helped save a stranger’s life. I thought you would want to know, so I tried contacting you. Unfortunately, I can’t because there is no contact information database; it’s unreasonable to maintain active numbers and addresses for thousands of donors. Also, you are a minor who had no say in if or how your cells would be used, an ethical dilemma.

I know little about you: you are female, twelve or thirteen years old, were born in New York, and have the blood type O+. I can gather more since our blood is identical: your white blood cells are in the high range considered normal, your platelets are normal, and your red cells are low. This is because you have a genetic trait found mostly in people of Mediterranean descent that makes you anemic, which I inherited. So I guess we’ll never climb Mount Everest. That was my life goal, too, just behind living way past 19. You’re lucky those priorities aren’t reversed.

I can guess more about you: I have many allergies so you may, too. Advil would send me to the ER, so I’ll just have to request oxycodone instead. Though cheese and baked goods are fine, milk and ice cream are near ER-worthy. Do you, too, feel rage towards Dairy Queen for not being accommodating by offering almond ice cream strawberry shortcake? Somebody get me the DQ CEO’s phone number. I bet his contact information is available.

I bet you’re healthy and never heard of cancer. My new immune system may be stronger than my original, and if my Ewing’s sarcoma was ever going to recur then I like to think your cells squashed that possibility. In that sense you may have saved me multiple times, though I’d never know.

I can fictionalize even more about you. To save money, your family moved to New Jersey. The commute stressed your father, who then verbally abused your mother, who then divorced your father and married Ray Liotta. Only it was a Ray Liotta impersonator, so your mother sued for defamation. Only fake Ray Liotta has no money, but does have a lot of oxycodone. They settled outside of court.

You have an IQ several standard deviations above normal, which I presume based on my little girl bone marrow solving advanced mathematical proofs and speaking several languages, including brat-speak. That reminds me, you also have an attitude problem that was incorrectly diagnosed as ADHD. You receive a steady supply of Adderall which you trade for oxycodone.

You hate all Ray Liotta movies except Goodfellas. You keep this a secret from your mom. You love oxycodone. You do not keep this a secret from your step dad.

You aspire to join the war on cancer by studying the properties of abyssal zone species for potential molecularly targeted chemotherapies. After earning your third doctorate at 19 years old, you will take your first dive. But you won't use any Deepsea Challenger like James Cameron. You’re first inventing biotechnology that will allow you to withstand the temperature, pressure, acid and lack of oxygen at those ocean depths. You’re also a braggart, so you’ll be submarining naked just to show that you can.

Your research will change the world. You will identify key-like components that lock into cancer cells that not only prevent reproduction, but also tap into the tumor’s resources to extend human life and reduce aging. Cancer is us, in its perfect, undying, accelerated version, and you will turn the tables on the disease.

I wish to meet you someday, and those cards are actually in your hands: if you meet all of the previously-mentioned identity traits (excluding anything to do with Ray Liotta, narcotics or your future self), then you are likely my donor. It would be unlikely that anyone else whose mother donated her cord also fits that description. Please contact me so I can properly thank you and your whackjob mother for saving me. At the least I'd like to acquire some oxycodone.

With love, hugs and kisses not in any pedophile-type way whatsoever,

Leia Mais…

Wednesday, April 18, 2012

At Least I Don't Sound Like a Complete Doofus

I had the pleasure of being a guest on Cyrus Webb's Conversations LIVE radio show today, along with children's book author Sheri Fink. Rumor has it Ellen DeGeneres tuned in this evening and I expect a phone call from her assistant bright and early tomorrow.

You can hear our full interview below. Cheers.

Listen to internet radio with middayconversations on Blog Talk Radio

Leia Mais…

Thursday, April 12, 2012


Years of food deprivation. Nothing processed at home. Rules that keep me contained. My next step was inevitable: thievery.

Step 1: Reconnoiter the office for candy bowl location, nearby foot traffic, and likelihood the provider is away from the office, leaving the candy abandoned. Sneakier thieves will correlate the door angle and light emitting from the room with the candy provider’s presence, in order to predict sneaky opportunities upon approach. Maintain awareness of all hallways and possibility of a fast-walker or sharp-cornerer whipping into sight. Know candy type ahead of time to prepare for containment to keep hands free, pockets bulkless, and a relaxed, innocent exit.

Step 2: When opportunity arises, enter office, reach quickly with one or two hands, and store candy prior to possible visibility by thief-haters. Rapid hand-eye coordination is vital, especially at my skill level which requires numerous maneuvers: reach, reach, pocket, pocket, quick search, reach, pocket, exit, smooth out bulk, slow heart rate, return to desk, open drawer, unload, close drawer, open spreadsheet (fake or real).

Step 3: Return to location again later, based on reconnaissance from Step 1. Repeat Step 2.

Step 4: Repeat Step 3 several more times in the day.

Restrictions apply:

Rule 1: More often than not the office will be occupied and you will simply breeze past as if you had important business to attend to. To prevent suspicion from candy provider, take one day off each week. Don’t even walk down that hallway.

Rule 2: When candy bowl is full take as much as you can, but as it depletes take less with each swipe. Depletion is more noticeable as the bowl gets smaller.

Rule 3: Never tell others of your thievery, and when asked what candy you prefer, say that you don’t eat it since you’re allergic to milk and peanuts.

After reaching my fitness goal last year rules prevented me from buying unhealthy foods, but I was authorized to commit thievery. So I stopped at Harris Teeter with no intention of buying vegetables, just to snag six free cookies on my way out. And I ravaged office candy bowls. Within three months I had gained 10 pounds.

New rules now prevent me from overconsuming thieved candy and cookies, but the behavior is instinctive. I’m so quick that my conscience lacks opportunity to scold me. So I still thieve, more for the adrenaline rush than consumption, and I end up trying to unload my thieved goods. Two days ago I sneakified Kit-Kats, and then tried giving them away to coworkers. Two declined and one accepted. She returned the favor by offering M&Ms. “No thanks, I just wanted to get rid of the chocolate,” I said.

“I thought you were being nice.”

Leia Mais…

Monday, April 9, 2012

6.5% Body Fat, ± 2%: And Beyond

Read these first:
6.5% Body Fat, ± 2%
6.5% Body Fat, ± 2%: The Sacrifice
6.5% Body Fat, ± 2%: The Terror

“Do you see yourself differently,” Uncle Joker asked my dad after learning that he lost 30 pounds.

“Well, yeah, I look different in the mirror, and I feel healthier.”

My mirror reflects differently, as well, but the image is clearer away from the glass, like in my awareness of existence and my reflection on others. I see it in text messages asking me for “more naked photos.” “Half-naked,” I correct (and decline). I see it in my hallway when my awesomely friendly flamboyantly gay neighbor (not that there’s anything wrong with that) says, “I saw your pictures on Facebook looking all ripped.” And, “Wear shorts next time I see you.”

Eleven years ago I requested that my IV port be sliced from my upper pectoral and eradicated prematurely. It was not inhibiting my function much. Its restriction could not be seen or felt. Without the plastic life could accelerate forward.

And so Benjamin 2.12 darts forward, first toward food. During my first day off-diet I was high on freedom and sugar after my 300-calorie sorbet sundae. My restrictions are gone, but handcuffs must exist to keep me free, so I limited my intake to slightly more than before.

After three weeks I allowed myself my first cheat meal. After taking supplements and performing other crazy techniques that hope to limit absorption and fat storage, I met my parents at Cici’s Pizza Buffet for this special occasion (cheat meals are for quantity, not quality). An employee watched me eat three plates of desserts at the end of my meal, his disbelief a reflection crisper than any mirror.

Two weeks later my second cheat meal with my roommate, Wheelman, and his fiancé. They each ate a six-inch cheesesteak and shared unfinished fries. I ate a 12-inch cheesesteak, my own fries, and then two cupcakes from 7-11.

My body fat showed no measurable increase so I moved to my third cheat meal one week later while watching the Final Four. Every year I’m in the running to win a bracket pool, and I never forget teams that have screwed me, like Texas and Oklahoma State. This year I had slaughtered my coworkers and won my work pool before the Final Four began, my first time winning (money and bragging rights for life). I watched the games just for enjoyment, with my Tony’s sub, fries, and four cupcakes. This was the same sub I ate nine years ago, when Dirty-D and SanFranCrazy came over for the Final Four two days before I departed for my bone marrow transplant. Dirty-D hadn’t wanted the games to end because he didn’t want to leave me; he thought I would die. I didn’t want my cupcakes to end because I can consume disturbingly large quantities of food. And after the chocolate one I thought I would die.

March Madness cheat meal with cupcakes, Pepsi Max, sub and fries

Passover sedar was my fourth cheat meal.
Passover sedar cheat meal with turkey, apple kugel
This was my first of three plates, incluidng the leg/thigh of a turkey that could probably eat me. I felt sick after, and had no room for dessert, which I now realize is a cheat meal rule. Without it, I felt unfulfilled. 

I have the willpower to abstain from overeating, so long as a weekly (not every two weeks) cheat meal is on the horizon. My cheat meal brings me hope as it approaches and joy when it arrives. Just planning it weeks ahead is exciting.

I can be around any food so long as I don’t claim ownership, or at least delay ownership until my cheat meal. The instant I give the green light my system, willpower and self-image crumble. The game is psychological: if I'm on-diet my will is iron. If I am, or think I am, off-diet then my mind loses its grip. It is an on-off switch.

It is fitting that rules continue guiding my life considering they helped me survive cancer twice. I even have rules that prevent rules, like how I must accept most social invitations because I never know what I’m going to miss. Sometimes rules lead to goals. My 2011 goal was to better myself, and I consider that accomplished. My 2012 goals are to maintain minimal body fat, increase my pull-up repetitions prior to my rock-climbing trip, gain muscle mass, and date Olivia Wilde or someone similar and by similar I mean not necessarily a movie star or someone who is capable of killing me with her hands, though the latter especially is preferred.

One rule I learned many years ago was that life progresses regardless of whether yours has stopped in waiting: for Cancer to go away, a book to publish, a girl, or the elimination of all visible body fat. Despite comprehending this rule I struggled accepting it. New rule: seize, don’t delay.

And oh, I almost forgot: there was an error in my original thigh measurement, which altered the body fat caliper formulas. I seized 6.0% body fat (± 2%) and not 6.5%. Imagine my fitness level if I could seize Olivia Wilde’s trainer, nutritionist, or burning desire.

Leia Mais…