Walking With a Lymph

So, the other day Shawnna and I were getting ready for bed, standing shoulder-to-shoulder in the bathroom, worshipping before the great American altar that is a porcelain double vanity, and performing our respective evening ablutions. We became synchronous, unconsciously so, but synchronous nonetheless. She had her handful of nighttime pills and was popping them one at a time. I was doubling and tripling mine in random combinations. I have more than she, so we were still keeping time… like a couple of pharmacological Art Blakeys. An epiphanic clarity came over me; a clarity so palpable that I had no choice but to give it voice, “This is a stupid fucking ritual.”  Tomorrow is gonna be a long week. At 8:20 I have a CT of my abdomen and pelvis with contrast . I think “with contrast” is when they shoot you full of radioactive fizzy water that makes it feel like you’re peeing in your pants when you’re really not. At 10:00, I have labs. Since I still have my central line port, this is re...

I like to read. It’s something I do every day. When I climb in to bed at night, I read before I turn off the light. It’s a rule. When I’m acutely tired and my heavy-lidded eyesight is filtered through more lash than ball, I still force myself to squeeze out at least one sentence. As I said, it’s a rule, and there just aren’t too many of those I choose to apply to my life. Steven’ Rules to Live By: Read every night before turning off the light. Early is on time. On time is late. Don’t be late. Commandments 5 – 7 Never invade Russia in the winter. There is no variety of sliced meat on bread for which mayonnaise is an appropriate condiment. Don’t be an asshole. The only thing about reading I like better than reading is amassing reading material. My wife reads on a Kindle. I don’t. It’s too smooth. Reading should involve texture. A good used bookstore is among my favorite places on earth. There is no better way to kill two hours on a weekend afternoon than sifting through the shelves of a ...

I woke up this morning to learn that an old friend and mentor died of Cancer yesterday. I don’t know what kind of Cancer she had, but it seems to have progressed rather quickly and painfully. While Joan is certainly not the first person I have known to die from Cancer, she is the first person to do so while I’m in the process of surviving Cancer, so it’s a little more personal. There is no comfort to be gained from distance. In fact, there is no distance. Please don’t misunderstand. I require no reassurances. While the Chemo can make me feel like death, I have little concern that mine is imminent. In no way do I feel like Joan’s dying has brought me face-to-face with my own mortality. I’m not being brave; I’m simply responding to the positive PET scan results, the words of my Doctor and the nature of my particular brand of Lymphoma. For someone who spends their days immersed in make-believe worlds, I've the soul of an empiricist. (Irony acknowledged.) I’m not sure how to describe m...

"The long Drive home"  by  johnsdigitaldreams.com  is licensed under Creative Commons You know when you’re driving, and it’s a trip you’ve made dozens, even hundreds of times before? You’re heading home from college, or to see a relative, or a girlfriend. You know the drive so well, that you can kind of turn off and only use about 65% of your brain. You’re making great time. It’s a 5 ½ hour trip and the first 4 hours fly by. Then, for no reason other than the vagaries of the lonesome road, a switch flips, time comes to a halt, and the last 90 minutes of that all-too familiar drive become interminable. You know you’re still driving, and your brain tells you that you’re still making forward progress, but there is no discernible evidence to confirm it despite the filmstrip continuing to disappear behind you. That last bit of the drive to get you home takes for-fucking-ever. The destination is just ahead of you, but has never been further away. That’s the part of Cancer I’m i...

I should really be coming up with something snarky and irreverent to write, and I don't want to enumerate poultry, but I think I'll let this one stand on its own. ---------------------  From: HU , BEI MD  To: LEVINE, STEVEN MARK  Cc: HOLLIFIELD , WHITNEY S;  Sent: 1/24/2022 10:38:05 EST  Subject: General Message  Hi Mr. Levine, Just wanted to let you know the great news of your pet/ct which showed a complete metabolic remission. This is the best response we could hope for. We will still need to do 3 more cycles of the RCHOP. We can talk more about your pet/ct in detail at the visit tomorrow but wanted to let you know the good news in advance.  Best,  Bei Hu, MD

"my hairy ear"  by  prazz  is licensed under  CC BY-NC 2.0 When you have Cancer, all your hair falls out except for ear hair. Ear hair feeds off the Cancer. It grows stronger, more resilient. Ear hair will survive a nuclear apocalypse. Like a cockroach. Ear hair is the cockroach of hair. I also have a new symptom, Neuropathy. While that sounds like some sort of super-cool mind control ability, it’s really just tingly fingers, and I have it all the time. It’s what I imagine Peter Parker’s spidey-sense feels like, but instead of telling me when danger is imminent, it’s just fucking annoying. It also feels like my feet are falling asleep, which is helpful when the Prednisone keeps me awake - at least my feet are getting a good night’s sleep. Neuropathy is a known side-effect of Vincristine, one of my Chemo drugs. Dr. Hu told me that it usually pops up around the fourth or fifth treatment. Being the over-achiever that I am, mine kicked in after the third. There’s really...

It’s my own fault. I’d been getting cocky, telling anyone who asked how trouble-free my infusions had been, tempting both fate and the Gods of Chemo. My typical schedule on Chemo Day sends me to the Lab first where they draw blood and access my port. Then, I head upstairs to see Doctor Hu. She usually has the lab results before the end of our appointment. Lastly, it’s to one of two Infusion Centers where I make myself at home for the next 4 ½-hours. Yesterday, 10 nurses had called out sick, and the Lab was pretty backed up. (There are no phlebotomists at the Levine Cancer Institute. Only RN’s draw blood because of the number of patients with ports.) So, Doctor Hu could see some of the results, but not all before I headed to Infusion. We had already started my Chemo regimen when the Doctor called down to say that my phosphorus was low. Evidently, I had lost my glow. Now, because I am my father’s son, I immediately did some research to try and assess the culprit. I needed to know what vi...

Since being diagnosed with Lymphoma, there have been two moments of attitudinal shift that I continue to refer back to. They were moments of a switch being flipped - devoid of rumination, processing, mulling or contemplation. Adjustment, quick and clean; no transition necessary. The first came when I was talking to my friend Chris. In my 53 years on earth Chris is the most positive person I have ever encountered, literally. (And I mean “literally” in the literal sense.) He exudes it, and it is sincere. He laughs at my snark without judgement, responds with love, and I love him for that. I was telling Chris the tale of how a mysterious kidney stone led to the discovery of my Cancer, and his immediate response was, “Thank G-d for that kidney stone!” Consider the notion of thanking the almighty, whatever version thereof you do or do not embrace, for the affliction of a kidney stone. My natural reaction was, “Oh my G-d, I’ve got a fucking kidney stone,” but Chris was right. I owe that kidn...

“I love you, but you’re going to have to shave that beard.”  I was lying in bed when these words were spoken to me. Though it was not my own bed, I was naked from the waist down save for two pairs of socks, and had only met the man speaking to me the day prior. My wife was there, too, but she was just watching. The sudden announcement was surprising because I was already prepped, and the CNA was ready to administer the sleepy-go-bye-bye meds. Truth be told, I was in surgery about two weeks earlier than anticipated because my surgeon, the man I had met one day earlier, had a cancellation. So, even though my beard was hard to miss, it had escaped any sort of pre-op conversations that would have otherwise been routine. They brought me hospital clippers, and I raced from the pre-op room to the bathroom with my wife valiantly trying to hold my hospital gown closed from behind, ass cheeks flapping in the breeze nonetheless. A nurse lined the sink with a towel, and I proceeded to shave my...

Today marks one week since my first Chemo treatment. Today is also the first day I’ve gone back to bed after everyone else left the house. I woke up at the normal time, roused the kids, made coffee, had a bagel. After Shawnna, et al. left for school I fed the dogs, and sat sipping a second cup while continuing to navigate the flowing torrent of Sondheim remembrances . Then, in an instant, I just felt like crap – queasy and completely sapped of energy. So, I went back to bed. I have felt mildly queasy all week, but this was more pronounced. So much so, that I no longer wished to remain upright, and upright I did not remain. While we tend to think of side-effects as manifesting physically, there are some that take up psychological space, as well. I'm not talking about the mental and emotional toll Cancer can take on a person and his family, rather the physical symptoms that edge their way into the psyche thereby becoming meta physical. For me, such symptoms are the ones relating to f...

I have always said that once I had kids, I became a better actor because my emotions lived so much closer to the surface. If that's true, then this shit should make me fucking Olivier. I've had numerous moments of emotional fragility over the past couple of months. It’s usually been when I’ve had more questions than answers, and when I’m home alone with nothing to occupy my mind. (Showers are particularly bad.) I do best with information, but I’m being very particular as to where I get it. I’ve been avoiding Dr. Google like, well, Cancer. I’ve also avoided legitimate sites like the Leukemia and Lymphoma Society , or National Cancer Institute . Nor do I pour over the voluminous handouts the various healthcare professionals give me. I figure I’ll only understand about 10% of what I read, and the other 90% will send me in to a tailspin. They enumerate all possibilities from the best-case scenarios to the worst, and one’s mind never fixates on the best, “Clearly, based on what I re...

Diffuse Large B-cell Lymphoma (20%) with Follicular Lymphoma (80%), WHO Grade 3A. That’s what I got, and for what I got they give you Chemo. The specific treatment protocol is called R-CHOP, which is simply an acronym for the Chemo Cocktail I’ll be receiving. From what I understand, there isn’t a lot of room for Physician deliberation and interpretation – with Diffuse Large B-cell Lymphoma (DLBCL), you get R-CHOP. Period. My cousin, who’s both a retired Oncologist and a Lymphoma survivor, called it “cookbook medicine.” DLBCL is aggressive, but potentially curable. Follicular is not curable, but is slow-growing and treatable. "Follicular" also makes me think of this: Starting on November 23, I'll be getting Chemo once every three weeks for a total of six cycles. So, my itinerary is set until April. I’ve gone from running the kids around town, forgetting to unmute on Zoom, and planning a vacation with friends to being Guy with Cancer . I know, ‘Don’t let it define you! You ...

Monday, November 8, 2021 We walked into the Doctor's office for a post-surgical follow-up. My surgeon entered the room and greeted me by bellowing out "Diffuse Large B-cell Lymphoma!" He had already told me that he was an immigrant to this country, so I thought maybe the strange words coming out of his mouth were some sort of ritualistic greeting and that we were having a cultural disconnect. He then handed me the pathology report, which I quickly scanned. It took me a minute, but I eventually recognized the words on the page as the same words with which he threw open the office door. Only then did I understand that he was giving me a diagnosis by way of greeting. He immediately called the Oncologist to try and move my appointment, which had been scheduled for the following week, to the next day. That wasn't alarming at all. I asked him if it meant this kind of Cancer requires a sense of urgency. His rather succinct answer was, "Yep." I think he was trying t...