everything is connected

 

I recently read a book where one of the characters had severe OCD. She had to write the words, "My son will not drown" 1000 times every day. I'm not there yet, but this cancer situation has me teetering. JP stands for Jack and Peter, my sons two grandfathers. Jack died suddenly at 62, and I had a grandfather named Jack who I never met because he shot himself in the head when my mom was 4. So mortality-fearing me is thinking maybe Jack is a cursed name for us. What were we thinking? To refute my fears, Tim listed his father's accomplishments and maintains that 62 years was a full life. Tim is very positive by nature, as am I, normally. However, Tim's been positive about a few big things in 2025 that have not gone the way he thought they would. Always upbeat, he argues that they went exactly as they should have, but for me, this means that Tim is not allowed to be super positive about JP's (very good) chances. This puts my poor husband in an unenviable bind because, of course, he's not allowed to be negative either.

People brought peonies to the hospital when JP was born. If the one I transplanted from my Philly garden to Massachusetts somehow doesn't survive, I'm going to be a basket case. Last Wednesday when I was driving to the hospital to see JP after his node removal surgery, I looked at my left hand and realized I'd worn the wrong ring. I was wearing my Jen Letter fidget ring which has 2 rings that spin instead of my engagement ring that has 3 stones in it. I was almost at route 93, but I actually considered turning back because I would like to come out of this cancer thing with 3 kids, not 2. (When I kept trying and failing to have a 4th child, I often blamed the ring thinking it should have had FOUR stones in it.) Luckily, I passed by a Taurus Landscaping garden truck; that was obviously a sign that JP (a Taurus) will prevail, so no need to drive back and change rings. To be safe, though, I have now put on the not-necessarily-my-style Kay Jewelers sapphire necklace and earrings that my mom left because they, too, have 3 stones. (and I clearly need some no-nonsense Susie support right now.) I will not be taking them off until my son is 100% cancer free. 

One of my friends recently discovered she was a liver donor match for her boyfriend's brother. None of his actual siblings was a match, and their chances, as relatives, were 25%; hers, much lower. One of my brothers in law with polycystic kidneys received a kidney from a girlfriend. The chances of her being a match was 1: 30,000. Normally, I love these beating-the-odds stories, but now, given my son's 90%, or possibly even 95% chance of survival, the last thing I want to hear about is statistically unlikely things actually happening.

I also have somehow connected my inability to temper my alcohol consumption with Jack Peter's cancer diagnosis. Is it guilt? I feel guilty that JP's diagnosis took so long, and I often feel guilty about drinking too much, whether it be about something I said and shouldn't have, not being fully present for my kids/husband or for the subsequent, depressed day that makes me a less pleasant person to be around. I drank gin and tonics the night before JP's doctor gave us the news. I'd had more gin than I should have had because I'd felt awkward. We walked into a birthday party in our small town at the exact moment a member of the planning board, who we are suing, was walking into the party. What are the chances? (probably greater than my son's dying of Hodgkin's Lymphoma.) If my newfound sobriety continues, at least there will be some upside to this nightmare.

While I am irrationally connecting things that aren't unrelated, JP's doctors have been rationally connecting things that are related. Alcohol is, interestingly, one of the ways that our doctor was 90% sure that JP had Lymphoma. One of his rogue symptoms was an inability to tolerate even the slightest amount of alcohol. He's not a big drinker, but he was in Montreal for the past year, and the drinking age there is 18. He was intending to experience the joys of meeting a friend for a drink, but the first sip would invariably make something in his body hurt. 

I had a rough time figuring out what to get JP for his 19th birthday until one of my nurse friends suggested we bedazzle a barf bucket for him. I made a social media post with the two of us and his new puke pail. Some people know he has cancer and chastised me for "gallows humor." The ones who don't, ironically assumed that he's a big partier/drinker/vomiter. Speaking of making connections that aren't there, JP wanted to upgrade his bucket to plumb straight into his sister's room. She has a huge vomit phobia and responded to the proposed highway of hurl, "I would KILL you." Of course JP quipped back, "Better hurry up, something might beat you to it!" For those of you who don't like gallows humor, sorry. It's going to be a rough few months.

Diagnosis (Parent of the year award)

My son was officially diagnosed with Hodgkin Lymphoma today. During the terrifying 5 days of  testing, poking, prodding, and scanning, friends kept asking me, "Cancer???? what are his symptoms?" "How did you know to bring him in?" For the sake of efficiency I am writing a short, informative blog post about it.  

Two weeks ago we were moving out of our beloved Philadelphia home. All three of our teenagers were so helpful and cheerful about packing up my husband's 36 boxes of books on Kafka, even though they have never seen him read a book, unless it was to them as toddlers. They were empathetic about my inability part with either of the Sharpie-covered, cat-scratched leather recliners or the cheesy Norman Rockwell plate set. They jumped at the chance to help me dig up my mother in law's peonies from the garden. It was a seamless week of cooperation and productivity. 

All of a sudden, JP, who NEVER complains and is always up for a sweaty, grueling task, said he felt like he might need to take a break and drink some water. We immediately knew something was wrong. We tore back to Massachusetts for an appointment with his doctor. When we told her that JP had asked for a break during a hard work day, she looked terrified and ordered blood tests and a CT scan STAT. So, for all of you parents out there, relax, it was just another example of mindful parenting. I'm sure you'd all do the same.

RECORD SCRATCH....

That is NOT how it went down.  In 2016 my middle child was diagnosed with Lyme disease. She had marauding, absurd, attention-seeking symptoms. At one point her 7-year-old sister came into our bedroom at 2 am to tell us that her big sister couldn't walk. I bellowed, "It's 2 am, she doesn't NEED to walk! GO BACK TO BED!" I've now topped that egregious parenting. JP started having symptoms last summer. It started when he shaved his armpits and got a massive ingrown hair pustule. Much to the horror of most people in my life, I don't shave my armpits. One of the four reasons for this is that I have cowlicks in my armpits, so no matter how I approach shaving them, I will invariably be going against the grain. Which is worse? hair? or zit-like bumps??? My sympathy for my one child who has the societal green light to have hair in his armpits was less than zero. I told him to put a hot compress on it and to take an Advil.

Long after the cyst had gone, JP was still complaining about a lump in his armpit. My husband was actually a little worried about it. Blythe Dr. Me insisted, "of course his lymph node is swollen! He just had an infection there!" Once again treatment recommendations: compresses and Advil. So JP left in August 2024 for his freshman year in college with at least one enlarged lymph node. Between then and now JP has lost 30 pounds.  We've seen him multiple times and attributed  his weight loss to varying factors: Montreal has better quality food; JP's been toying with androgyny and has successfully achieved the look of a teenage girl; Aiden, his best friend is a  gorgeous, super-skinny model; and finally, the dining hall was 4 floors away from JP, and there was no one forcing him out of bed to go. One of my son's main personality traits is kinetic-aversion (laziness) which is why the first paragraph in this piece is a complete farce. 

We did have JP go to the doctor during one of his visits home in the winter because he still had the node pain and was not well. She tested him for strep (negative) and told him to use compresses on the lymph nodes. In February JP came home to have his wisdom teeth removed. What a great idea to give a kid voluntary surgery when his immune system is compromised! Post surgery they put JP on antibiotics. I figured whatever infection he had would finally be knocked out by those. My son is hearing impaired. He, apparently, did not hear the many pleas to take the entire course of antibiotics, and I was not there to nag about it, so he stopped after a few days.

We have now arrived where this piece started: moving out of our Philly house in April. All three kids were miserable. It was an awful, chaotic, emotional few days. Dad was in nostalgia mode; mom was in purge mode-not a good dichotomy for marital harmony. Kids were in "this is such a shitty spring break" mode. JP always gets the worst sleeping accommodations because the girls can share a bed. He was sleeping on an uncomfortable couch in the living room and was, thus, exhausted the entire time. We got through it, barely.

Because JP did not secure an internship in his field of video game design, the plan for him this summer was to labor for his dad building the much-needed addition on our property. He had vomited on his first full work day. His dad attributed that to his being out of shape and rode him hard about integrity, rigor and diligence for the rest of his first work week. I finally made JP an appointment with his doctor to look into the, now multiple, swollen lymph nodes. She had bloodwork done. She had more bloodwork done. She ordered an ultrasound of his chest. Immediately following the ultrasound she called. "Are you driving? You need to pull over." JP and I were in the car together. As I rolled to a stop on the shoulder of the road, we stared at each other. Her clear, southern-tinged voice emerged from the speaker, "I am 90% sure JP has Lymphoma. You will have a CT scan later today. I have a biopsy scheduled for Thursday; Now is not the time to google anything."

JP came 8 days early to be born on my first Mother's Day in 2006. I will be celebrating Mother's Day this weekend 3 days before JP's 19th birthday. As JP's parents, we are both racked with guilt over our parts in the delay of his diagnosis. We are repeating the words, "Hodgkins is highly treatable" and "Hodgkins is highly curable" like a mantra. Tim is able to move forward. He's throwing himself into the work at hand. I, however, am paralyzed. Is this a gender thing? Would we have diagnosed one of the girls more quickly? Did we harbor some sort of expectation of stoicism from our son that allowed us to belittle his symptoms?

Based on the CT scan results, a doctor friend, whose daughter had Hodgkin Lymphoma, urged us to go straight to the Boston Children's Hospital ER. At the same time, a nurse at the doctor's office called to say that no oncologist had an appointment for at least 7 days, so we should go to the ER at Children's Hospital. We grabbed the girls and headed there. The 5 of us sat in the cramped ER room fighting over outlets for chargers for our phones. Multiple people came in and out to give JP various tests, and the girls were loving and weepy, taking a brief hiatus from their usual, merciless mocking of their brother.  At some point, though, JP didn't hear something a nurse said, and the girls launched into fits of giggles and their usual, incomprehensible, mean girl comedy routine about how uncool he is. Speaking of uncool...if you must know, the 3 other reasons I don't shave my armpits are: laziness, wanting to model for my children that all of the BS they do to be attractive is a waste of time and money, and finally a little act of defiance against the ridiculous standards for women that men don't have to think about. 

JP's job now for the summer is to get well. He will be doing most of the ballerina sister schlepping for us because he needs more driving experience and because driving is not physically challenging. Yesterday, he picked his sister up and told her about his definitive diagnosis. The conversation then meandered to what he wanted for his birthday. He'd wanted a tattoo, but that's out because his immune system won't handle that. He listed some of his present options to her. One of them was hair ties. She looked up at him from her phone and said, "I don't think you'll be needing those for much longer." They burst out laughing. At least the gender thing is on his side with losing his hair. He is so beautiful when he's bald, just as he was on May 14, 2006.

(I know he's not technically bald in this one, but close enough. I lost all of my baby pictures because I thought my Walmart/Snapfish accounts were OK for storing photos. I was wrong.)

My sister in law read my blog, processed that I'd lost access to all of my photos, and had, instantly, every picture ever taken of JP at her fingertips. I would love to know what it feels like to have an organized, tech-savvy brain.