The Transplant Guardian: My May Cancer Peep

“Biel”

Biel’s first shift with me was the second day of my conditioning regimen prior to my umbilical cord stem cell transplant. Biel and I got off to a rough start because she answered my dad’s questions which kept her present longer than necessary, and she made me follow the hospital rules and shower, which required my movement. I cared little for friendly conversation or attractive nurses tending to me.

That didn’t last long.

Biel became my primary nurse, and as my energy returned I took stalkerish notice of her. With little else to do on my journey towards 65 consecutive days in my hospital room, I cracked Biel’s life story.

Biel wore casual sneakers, simple scrubs, and smiled constantly. Her straight brown hair complemented her complexion and relaxed speech. This triggered my alarm—nobody that chill would be working on a pediatric transplant unit. I considered whether she was a spy ordered to keep a watchful eye on another transplantee’s father. The University of Minnesota was a premiere establishment worthy of a foreign agent’s presence, had that foreign agent fathered a leukemia-ridden child.

But I couldn't venture from my room to check around, and my dad was a poor detective. That left me concluding Biel was spying on me to research my survival methods. I needed to discover what she wanted from me. Whatever it was, I was sure she would take it while assisting my bone marrow biopsy while I was under conscious sedation.

Before the procedure I was torn between remaining awake to investigate Biel, or receive Versed and fentanyl, my conscious sedation medications. The drugs got the best of me. Biel secured my bone marrow sample and whatever else she was looking for without my opposition. I made it too easy.

To this day I wonder which of my obscure organs Biel stole and in what way it was researched. Perhaps she implanted a tracker in me. If the knowledge stays in-State then I’m content, but not if she is a double agent. Except for Canada. I love (reduced-sugar) maple syrup.

I bumped into Biel a couple times after my discharge, as well as years later during a follow-up visit. But her smile had a hold on me, and just before I questioned her research intentions, I lost my trail of thought. Though I may never know which organ I’m missing or how I’m being tracked, my conviction tells me to trust her.

Biel was an exceptional nurse and a spark during my long hospital days. She is now married and nurses in California—at least according to our email correspondence and her Facebook profile. But Zuckerberg and I  know the truth and are waiting for her to unleash her research on the world. Watch out, all you transplant children under her watchful care. Don’t get too comfortable around one of my all-time favorite nurses.

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Plenty of Fishies, Only One Benjy

Write a book: 1.5 years
Get published: 4.5 years
Close on a house: 2 months
Earn PMP certification: 4 months
Eliminate body fat: 10 months
Get tattooed: 1 month
Earn Toastmasters Competent Communicator: 15 months

So apparently I am a doer. By year’s end I expect to lift the full weight stack on my gym’s leg extension machine five consecutive times, with a 5/2/5 cadence. I also plan to follow through with my goal to date Olivia Wilde or someone similar. I will be the sole judge of “similar”.

I created a profile on Plenty of Fish, the largest free dating site. I know you’re thinking, Ben, you get what you pay for. But there’s so many fishies there that surely some must accept me for my wealth accumulation (read: cheapness) and sports car-hybrid (read: 1999 Chevrolet Cavalier coupe. It's red.) I’ve already messaged a few with my typical silliness, and have not yet received bites. In the words of Trick Daddy, if you don’t appreciate my humor then “I don't even care 'bout ya!"

Marketing my book has taught me lessons that I’ll utilize. Three feelers will not suffice. I must bombard these fish to sustain constant bait. As three fish brush past my lure, three more baits must be in the works. I must tweak my hook to the audience. Finding nice tilapia to hang out with sounds pleasant, but these sharks want “relationships.”

Plenty of Fish accommodates precise searching. No way am I willing to swim more than two nautical miles to “relationship” these fish. Having lived through twenty-eight mating seasons is too many and twenty-five too few; stripes must be exactly two millimeters wide; and camouflaged fish are creepy. One would think this precision leads to a fishless sea, but the site name is not lying.

There are other free seas, too, like local Meetups and female penitentiaries. Don’t discount our justice system making errors, or beautiful fish earning second chances. Surely Olivia Wilde has smoked some marijuana outside of California. Jail her!

I will do my best to blog about my fishing progress, in so far as it doesn’t impose on my catches or dignity. Though, all potential fish should know that I only engage in self-deprecation and not fish-bashing. Be your own judge regarding the blurry distinction between non-fiction and fiction (read: my typical bullshit).

I also may offer a date via this blog. The date’s appeal would not be me, but rather a fancy June affair in Washington, D.C., where tickets go for $200. Man-dates are not off the table. Considering the epic failure of my last free offer, I may have to expand to the whole world’s oceans including male penitentiary prison guards or inmates.

Just no salmon, not now or ever. All potential fishes must also accept me for that prejudice.

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Mother’s Day Facebook Challenge

Mother’s Day is not for commemorating the person who brought you into the world. It’s for pressuring your friends to perform a few mouse clicks or touches so you can earn a free book that you’ll love, though your mother may find graphic and callous depending on her age and religious conservatism.

I will no longer force my brand down your throat for nothing. I believe I offended many with that approach and for that I apologize pull the cancer card. I will now badger you while offering my book—my favorite commodity—for free.

This challenge is simple: get five or more of your friends to Like my Facebook Page (who don’t already) and I’ll send you an autographed copy of Twice for free. You are not competing as there can be many winners. Challenge ends 11:59 p.m. on Sunday, May 13, 2012.

Your friends will forgive you once they see my half-naked photos on Facebook. Unless they’re straight dudes. Don’t worry about your mother, either. She won’t forgive you for neglecting her on Mother’s Day, but she will forget because that’s what elderly people do (depending on her age). And President Obama will do something to rile her up more than Twice (depending on her religious conservatism).

Happy Mother’s Day Facebook Challenge!

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Survivor Tumor Tattoo

“What is it?”

“My tumor about to get fucked up.”

After testing different renditions to explain my tattoo at a party last night—hours after getting inked—that seemed the easiest and most popular, especially with Jose Cuervo involved. But that is an injustice. The backstory…

I was wasting away Journalism II on Microsoft Paint. Not that we ever learned anything useful in that course, but this day I had little interest in thinking. I had been diagnosed with Ewing’s sarcoma one week before, and would begin chemotherapy two days later. Drawing on a library computer seemed fitting, though PepperoniNip was doing the same and he did not have cancer.

I plugged away on my picture. I had lost my artistic talents years earlier, but drawing shapes and blotches was easy enough. I printed my finished masterpiece and showed PepperoniNip. “What is it?” he asked, a now-common question.

I drew my perception of my tumor, as an ugly blob with spikey hair and blue spots (Ewing’s sarcoma cells are blue and round). Ewing displayed a terrified expression. His eyes glanced up at two nuclear missiles descending on him, from Israel and USA. Ewing was about to get fucked up.

I have now been cancer-free from Ewing’s sarcoma for 10.5 years. I’ve earned a perspective that is everlasting, but like my memory of that tattoo picture that I since lost, perspectives fade. Months ago my perceived rejection by Sec-Z-Bec led me to lose my way more than any other moment in a decade. I became no different from friends who used to share with me their girl problems, first warning me not to compare them to cancer. I fear that, ten years post-cancer, I now need motivation external from myself to stay grounded.

My lost work of art has been replaced by something beautiful thanks to my tattoo artist, Allen. Ewing has returned in permanent form (though without nukes) to remind me every day where I’ve come from. I hate Ewing. I love Ewing. I need Ewing.

I thought about this for over a year before pulling the trigger. The content is thoughtful; the placement vain: Ewing creeps around my corner and stares up at me in the mirror from my upper ribcage. If my ribs are no longer visible around Ewing then I know to slim down, making both my perspective and leanness permanent.


I hope this tattoo concept catches fire among survivors, replacing the ribbon. Our disease is defined by its name, like Ewing’s sarcoma, but it is different in each of us, because it is us. Our perceptions differ, too. At sixteen years old I knew I would fuck my tumor up. My Superman complex demanded that of me. I recently heard a story of a young woman with breast cancer who darkened from her illness and became consumed by it. Had she survived then her tumor tattoo would not be Breast looking up at a warhead. I now know that is ok.

Related story: Inked

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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.

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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 ensure 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,
Benjamin

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