healthcare and hearing impairment

JP was told that food he eats after chemo might turn his stomach in the future. I have NO PROBLEM with his being unable, for the rest of his life, to eat a traditional Massachusetts roast beef sandwich with sauce and mayonnaise 

For the past year, JP has been at Concordia University in Montreal studying computation art. He wants to design video games, although that will probably all be done by AI in the very near future. I'd forgotten, in his absence, just how hearing-impaired he is.  Despite fine tuning and audiologist know how, all of the hearing devices we've tried have amplified everything, not what he needs to hear. Because he's had the hearing loss since birth, he's not developed the ability to filter out the extraneous.  He'd rather miss stuff than hear ambient noises, like clanking keys. (or the video game of the kid in the waiting room that Tim wants to throttle) 

In a medical setting this strategy is comical at best, harrowing at worst. First of all, most people in healthcare are women who tend to have quieter voices, especially being the empathetic women attracted to helping people in the first place. They see his "hearing impaired" sign, manage 3 syllables of forceful diction, and then revert to their calming, breathy, normal voices. Often healthcare workers are wearing masks which cuts off his go-to deaf hack, lip reading. A few years ago, at one of his wellness appointments, the nurse asked him (probably before a talk about sexuality) if he wanted me to stay or leave. He responded, "Sandwich." Now if someone asks him a question, and he knows he's missed it, he impishly looks at me and says, "sandwich." This cracks us up, but doesn't help the poor person trying to get his vitals. At one point, a nutritionist came in to talk to him about the fact that he's lost too much weight. She gave him smoothie options, which he didn't hear, and closed with listing hideous drinks like "ensure" or "boost." He looked perplexed and mumbled he didn't really want an "ensure." I interrupted shouting, "What kind of smoothies do you have???" He looked at me and said incredulously, "They have smoothies????" He was then given an oreo milkshake or a a super-sweet fruit confection every 2 hours for the rest of his hospital stay. My goal, during all of my pregnancies, was to never outweigh a McDonald man. Unfortunately I'm no longer pregnant, and I have 14 pounds on JP. This is a smoothie emergency, people. 

"Sandwich"

If he is, however, to continue eating these, the only-available-on-Saturdays, Modern Butcher roast beef sandwich is the only way to go.

One of my college essays was about a cheesy new age harpist named Andreas Vollenwieder. I used to get high with friends in the woods and listen to one of his albums. I wonder; what device did we use to do that? I don't even like the harp, but I did like exercising my ability to write a convincing essay about nonsense. While JP and I were ensconced in one of the interminable, poking, prodding days devised to determine what stage Hodgkin Lymphoma JP had achieved and to prepare for treatment, a harpist emerged from the elevators and set up in the waiting room. When JP's hospital sleeping quarters were directly outside the noisy ward entrance, his hearing impairment was a blessing. As it was when the harpist launched into a soulful rendition of a cloying pop song that has the line "1000 years" in it. In 1991, I attended the birth of the first child of my babysitter. My dad called her "Paddy Wagon" which is probably why she now insists on Patricia. For the birth, she'd packed a bunch of cds, but every time her husband popped one in, mid-contraction she'd bellow, "THE MUSIC ISN'T WORKING, ALEX!" I wanted to channel Paddy Wagon and scream at the poor harpist, "My 19-year-old son just had to jack off into a cup, so he has viable sperm in case his chemotherapy renders him infertile, and now he's getting an echocardiogram because there's a tsunami of fluid around his heart. THE MUSIC ISN'T WORKING, LADY!"

In person, I have been able to rein in my fury since his doctor told me to pull over, so she could deliver scary news. On the phone, however, I snapped a couple of times during the weeks his treatment was held up by bureaucracy. In my attempts to get JP off of our Tufts healthcare plan and onto the Mass Health Standard healthcare plan that entitles him to be treated at Dana Farber. I spent 2-4 hours a day on hold, demanding to speak to a supervisor, or furiously responding to a "short survey." One of the more harrowing decisions was choosing April 30 or May 31 as the end date of his Tufts plan; there is no way to cancel mid-month. The early choice possibly left us on the hook for his ER visit, two nights in the hospital, and a bunch of diagnostic escapades. The later date paralyzed everything, as Dana Farber would have to wait until 5/31 to even schedule a test, let alone give him one. I eventually got a supervisor who assured me that she had removed JP from the Tufts plan as of 4/30, but it might take 5-7 business days for the Massachusetts Health Connector to update their system with the change. The individual health portals that connect to actual doctors and nurses might take another 5-7 business days to reflect the change. At one point Tim and I attempted to be personally liable for treatment. We were denied. Getting off healthcare was circuitous. Getting on was insurmountable. To be eligible for the Mass Health Standard level of insurance, JP needed a disability designation; however, disability evaluations take 90 days. Lymphoma is, in fact, a disability, but getting the definitive Lymphoma diagnosis involved tests that Dana Farber wasn't able to schedule. How does this rant about our Kafka-esque healthcare system connect to JP's deafness? All of the calls involved JP, now 19, giving his permission for me to speak on his behalf. All of the follow-up calls went straight to hearing-impaired, sick JP rather than to me. His hearing is terrible in person, almost non-existent on the phone. I honestly have no idea how everything resolved. Which person on which call had a soul and went above and beyond when I broke down and said, "My son has cancer. We don't HAVE 90 days!"

So today, my clean slate of in-person equilibrium has been tested. The plan was to get his portal surgery and to follow it with his first chemo treatment. Given my blasé attitude towards his swollen lymph nodes over the past year, the heinous health insurance juggernaut, and the fact that his health seems to be deteriorating, we have been excited to get his treatment rolling. Today is a big day: port placement surgery and the start of his 4.5 months of chemo. We knew the port placement might be a little complicated by the enlarged nodes in the way, but we didn't even get that far for HOURS. He's had fluid around his heart. He survived the biopsy surgery, but the anesthesiologist was a little concerned that he might have more fluid now which could endanger him in multiple, terrifying ways. A couple days ago he started taking prednisone, a steroid, a big part of the salad of chemotherapy and anti-nausea drugs that he will be taking to fight this. The prednisone thwarts some of his immune-response inflammation and ramps up his energy; a good side effect is that he's hungry. After an echocardiogram and follow up with a cardiologist, the outcome is that his fluid, an immune response is GONE after 2 days of prednisone. Great news, but that put us 4 hours off schedule, so not only is he emaciated from the Lymphoma, he's STARVING from the steroids, and I want to punch someone in the face.

Meanwhile, during this entire month, JP has neglected to mention to any of the 473 people asking about his health that his ears have been hurting since February. He finally remembered to mention it in our meeting with his demure oncologist. She rolled up her sleeves and started burrowing into his ears with what looked like a slender, metal version of a Rita's water ice straw/spoon. She was able to maintain a facade of calm optimism as she orally delivered all of the wretched side effects of his various chemo meds, but for a second I saw her crack as she gingerly removed claritin-sized scoops of wax from his tiny ear canal. Apparently he's got some infection behind his ear drum that she recommends he visit an ear/nose/throat doctor for after the chemo is finished. I'm such an optimist, I'm hoping that whatever that is will turn out to be the cause of his hearing loss, and he'll enter his sophomore year in college cancer free and with a full range of perfect hearing. This is a pipe dream.

This is the image JP sent to all of us before he went into surgery for the port. He hasn't lost his sense of humor.

This is is wretched treatment plan with the side effects. To people who encourage me to look into alternative medicines, I ask that they read the fine print, "Untreated, Hodgkin's Lymphoma is fatal."

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 related, 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.

Kafka-esque health insurance inquiries

I was thinking that I should devise some sort of mom drinking game: take a shot every time you get conflicting information in calls related to kids’ healthcare or every time you have to state the kid’s or your own birthday. For the duration of this morning’s healthcare phone call odyssey, instead of a shot, I have taken a sliver of the Trader Joe’s Chantilly Cream Vanilla Bean cake Toby made me buy and then followed it with another sliver to “make it look tidy.” (Yesterday, while on the phone about the same thing, I ate half a bag of the homemade granola my 8th grade English teacher gave me)

As a family, we need 8 teeth extracted in 2025. The wiz receptionist at the dentist who crunches numbers for 18 minutes while we stand there staring, thinking that she’s got to be doing quantum physics before tackling what will be our co-pay on filling my son’s 5 cavities, quipped that we should probably get better dental insurance for the upcoming year. That seemed like a reasonable idea even if it was coming from someone who was doing math for 18 minutes to tell us that we will owe $438 dollars for the fillings which I discovered yesterday should have cost $206. 

I called our healthcare, and they told me that I couldn’t change anything until I uploaded our proof of income. Being an entirely self-employed couple is great until income validation is necessary.  I had put this off because it entails turning each page of our 156-page tax return into its own pdf file to upload individually. After the 2 weeks it took for me to comply and them to process, I called back and was told that there’s no difference between the various tiers of the dental insurances. “Then why do the different tiers exist?” was my follow-up, and “I’d have to look into that.” was the response. It must say on the manual for the people dealing with these calls, “ALWAYS DEFAULT TO ‘I’LL HAVE TO LOOK INTO THAT; WOULD YOU MIND GOING ON A BRIEF HOLD?’ When anyone asks me that, I scream, “NO! Don’t leave me!” like I’m in a horror movie.

To give some context to those of you who are saying to yourselves, “Why does she bother?” the price quotes I had received were $864 versus $1790 per child with 4 impacted wisdom teeth. That $926x2 is a lot of cups and bowls if you make pottery for a living. Most of the quote reflected a 75/25 split, insurance/insured. There was a charge for some sort of pain killer that the insured is 100% responsible for which makes me wonder if there’s a filing cabinet at the pediatric dentist that says “cheap, sadistic parents” and another that says “possible opiate addict.” 

Someone suggested that maybe it’s the healthcare insurance and not the dental insurance that’s the issue which was a non-starter for me. Changing that on the day before open enrollment ends based on the hunch of someone whose accent I could barely understand seemed ill-advised. I was going to give up entirely on the whole process and hope for the $864 outcome, but casually, the woman added, “The oral surgeon your dentist uses is not in network.” Holy shit! That is something even I can understand and regurgitate. I called the dentist and said, “I think I just need to go to an oral surgeon from our Tufts Health website.” 

Wiz numbers cruncher was not going to take this lying down and told me she’d call me back tomorrow. To be safe, though, I started the process to register the two kids with a new surgeon. (This involved more granola.) At the end the woman said, “When you call your dentist for the referral, make sure they put “siblings” on there, so we’ll schedule them both at the same time.” This brought images of my two sedated eldest children in a wisdom teeth bloodbath ritual scenario, but I pushed that thought down.

I called the dentist this morning for the referral and WNC said “We’ve just sent a petition your healthcare to put our oral surgeon in network and if they do that the whole procedure will cost $22.”

I will have to wait 3 weeks for the response which will probably be negative, and I will have forgotten everything and have to start the whole process over. Imagine if I did something positive like a Kegel exercise at every frustrating turn? I’d have a the snatch version of "buns of steel."

ps. The main takeaway from all of this is that you need to ask your healthcare provider to submit a "pre-estimate" or a "pre-determination" in order to get a good deal from both the provider and your insurance.