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nosire · 15 days ago

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still here despite it all

So,

I'm a year into remission right now. Yesterday I had my final post-immunotherapy follow-up with my oncologist which includes bloodwork. For the first time since this ordeal ALL of my numbers on the bloodwork were within normal ranges. Including white blood cell count which was a concern since they've plummeted to very dangerous levels for a couple years post-chemo. It's officially over. I made it.

For those uninitiated, I was diagnosed with Hodgkins Lymphoma in September 2022. There was a wild series of events preceding a 2-week stint in the hospital to tame the spread before it reached other areas. I was stage 2B

April 2022 I noticed I was getting rashes on my arm that weren't going away. It was spring, so I chalked it up to brushing up to the poison ivy next to the driveway by my car. Hydrocortisone was not healing it. Allergies? Maybe. I was also having some problems wheezing and being unable to jog effectively at the gym. OK, it's just me being fat. Nothing new. But this time it was different.

I was also gaining a lot of weight and that summer I weighed the highest I ever had in my life. I started developing skin tags on my neck. Ok, it's really just me being fat. But this is something new.

I visited a cardiologist. Specifically a black one - one that was aware about the differences in the African American community regarding cardiovascular patterns and health. Someone I thought would understand. The office was a hike from my job, but it may be worth the trip. This really ain't make any sense why I was this out of breath. The cardiologist was cautious, but also not very forthcoming. Each visit came to a conclusion that I would need another test to find some answers. Stress test. EKG. Ultrasound. I even took home a heart monitor that was attached to my body at all times for a few days. No answers, I was getting frustrated. He was out of network, but it was ok that's what HSA is for right?

September 2022 I was having trouble in all areas: speech was obstructed. Laughing and sharp exhales ended in coughing. I couldn't jog on the track anymore. I could not fall asleep at night for more than a couple hours. For hours I was awake at night. I think I had a heart attack at one point - I remember hearing a flatline in my ears, went silent and limp, and then regained mobility. Heart rate was 115 when resting. Something was wrong. I went to my ENT doctor in because I couldn't speak clearly. She could hear it in my voice. She felt my neck and immediately told me to go to the hospital. My lymph nodes were visibly protruding and what I thought were just muscle knots were cancerous nodes. This whole time the cardiologist did not check my nodes for months nor found that I also needed to have heart surgery from fluid buildup.

I went back to work and quietly announced my departure to go to the hospital. I thought maybe a quick visit and I'll get some steroid to reduce inflammation and be out of here. I wasn't worried about what it could have been - I was more worried about missing Firefly festival with @Rakeem that weekend. I was messaging like "yea I gotta go to the hospital for a bit but hold my ticket I'll be good by the weekend".

He was in fact NOT good by the weekend

In the ER the nurses there knew they had ban news but didn't know how to break it. I was annoyed I had to stay overnight. Then I got the diagnosis. Cancer. OK cool, but am I gonna die though? Maybe lol. Treatment was anticipated as follows: Chemotherapy to shrink the cancer, proton radiation to eradicate the remains, and immunotherapy to supplement my immune system to help prevent it coming back. If that didn't work then they would take stem cells out my bone marrow. And if THAT didn't work they had a hail mary chemo option which would incapacitate me in the hospital for weeks due it nuking my WHOLE body instead of the targeted area cells.

At the time my cancer was classified as Gray Zone - consisting of behavior of Hodgkins AND Non-Hodgkins. A long road of treatment awaited. I was in the hospital for 2 weeks. So many tests were ran and so little sleep. The spinal tap was the worst, the doctor that performed it manually kept missing with the needle so I had to get it surgically done. It was top 3 most painful experiences I've ever had. I peed on myself from the pain. I was hallucinating in my hospital room. The docs told me how large the cancer was in my body, and one node was about the side of a racquetball and was pressing against my lungs which was why I was having trouble breathing. Another big one was pressing on my windpipe. That heart surgery? They cut a sac around from my heart and drained the fluid and I had a drain hanging out the middle of my torso for weeks. This was fluid build up from all the enlarged nodes pressing on my organs. They had me all the way fucked up in there but I guess I'm supposed to live. I was released and awaited the chemo regiment.

First chemotherapy had me all jacked up. I had to get a picc line installed in my arm so that I can receive medicine directly without repeated stabbings. I had to keep it dry at all times and protect it during showers. A NP came every week to check my lines. Flushing my lines was a chore, AND it stopped working. So they sliced me up and put a port in my chest for the same purpose. Eventually that stopped working too so they ended up just going through my arm as normal later on. All day spent in the cancer chair nodding out followed by throwing up and expelling the red medicine pumped into my body. I lost a lot of weight very quickly. About 80 pounds in 3 months. My body hair fell out and I looked as sickly as I felt. I missed going to things I really wanted to go to. But this was as bad as it gets right?

But guess what? The first regiment of Chemo didn't work. The cancer shrank, but as it was about time to start the radiation phase, it grew back insanely fast. Turns out I had regular Hodgkins this whole time, not Gray Zone, so the medicines in the first regiments weren't as effective. My lymph nodes ate them shits.

Start it up again.

Sliced open more times to get lymph nodes biopsied. Knocked out ANOTHER 8-round regiment of chemo. Easier and less throwing up. Somehow, I was still able to run a mass sale of Happy Harry shirts - answering DMs inbetween naps. The state paper interviewed me. Cool. I made a facebook post asking for recovery beverages and I received an incredible outpouring of support from friends and family who submitted DOZENS of cases of drinks. Even cooler. Radiation was next.

A few outside life setbacks occurred, but I was able to start it when I needed to. I got a daily schedule of showing up at Upenn in philadelphia to get zapped in the throat for 45 minutes inside a giant nuclear reactor-looking machine. It was tight as fuck; I had to wear a mask and goggles and get strapped to a board and hold my breath in between zaps. The goggles let me see the breaths as I was holding it. Each day I was able to hold my breath for longer and longer - thats how I knew the treatment was working. I was no longer struggling to breathe and my lung capacity was increasing. SEPTA failed me so I ended up driving up to philly every day.

Then it was immunotherapy time - the home stretch. It was like chemo but less medicines to pump through me and much less time in the chair. More gentle on my body. A year and some change worth's of immunotherapy left and that would be that. I was well enough to return to work in the office, but then 2 weeks later I got laid off. So much for that. Insurance coverage was a nightmare, my work insurance had covered close to $1 million in all the cancer treatments and now it was gone. This is the price to keep someone alive in America. I'd been smart with my money and most of my money I was saving for a house down payment has gone to out-of-pocket insurance, rent, and outside costs for my immunotherapy and other specialty doctors

Oh yeah, the other doctors. As of right now, I have 4 oncologists, a (new) cardiologist, nephrologist, dentist, urologist, ENT doctor, and finally a PCP. Thanks to our incredible health care system, my nearest doctor is an hour away out of state.

So what now? My brain is irreversibly fried from all of the intravenous chemicals. I have memory issues and I struggle to recall things worse than before. There's a lethargy that I don't think will ever go away. I very likely will not be able to have healthy children. It's never been a priority of mine to procreate, but I couldn't fathom the idea of freezing my future kids pre-chemotherapy and pay for a freezer daycare. I can never donate blood or give plasma again. I've been cut open and jabbed far more times that I would care for. This body riddled with scars and discoloration from the surgeries, incisions, and entry points. I'm lucky - things could have been much worse. I could have not survived or be left with chronic disability. There is significant risk that radiation therapy will lead to internal scarring and heart issues in 10-20 years and it's up to me to slow this progression with better lifestyle choices.

So what's next? Bi-annual scans with Upenn and Helen Graham cancer center for life. Not only to monitor any regrowth, but to monitor the scarring on my organs from the radiation over time. My next goal is to transform my body into the one that I've always wanted to have. I have no excuses. No waiting - I have the green light to ensure the rest of my life will have as few complications as it can. I've always wanted to have a discipline of calisthenics that would allow me to control and maneuver my body efficiently and pain-free. Plus I want to be able to sit up and down without using my hands.

So what have you learned? I learned this shit blows. I was more annoyed than I was fearful. There's no easy way to go about cancer and you also have to be prepared for all the sudden changes. Also, as much as people will show support (which I am incredibly grateful) I also find out how many people actually do not give a fuck and will stand in your way or actively try to make things worse for you. In the end, all I have is myself so I don't get discouraged much when things fall apart outside of my control. And that being said, showing up for people means a lot and I've been trying to do that more for others.

So how do you feel? Years ago sometime in the 2000's right after high school there was a site where people could write anonymous things to you. Everything that I got was positive, but one comment contained 2 words: "Existential fuck." I'm glad to know I have not changed since then. The whole time I was waiting to die. Not *wanting* to die, but knowing it could have come a lot sooner than I wanted it to. Death is classic. Either kill me now or shut that shit up. Throughout the surgeries, the infusions, the waiting for news, I've always had an idea that I was going to be fine, but let's just get back to business as soon as we get the all-OK. I had a phenomenal 2024 - I went on a 20-date tour around the country, won a grant from the city of Philadelphia and got to lead a music workshop, all juggled around work and my immunotherapy. Anything is possible.

In summary - last 3 years were gnarly as hell. I saw a lot of shit, a lot of shit happened to me, and I didn't die. I made it out alive, but I am still without a job and trying to get back on track with staying on top of getting life where it needs to be. My remission status is the most important - all that other bullshit will sort itself when the time comes for it. I can see how others could collapse from the weight of it all if they had to go through the same thing.

But I'm a bad bitch you can't kill me

#cancer #hodgkinslymphoma

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nosire · 2 months ago

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It really do be like that

I lost 2 family members within a short period, my dad and his mother (granny), effectively cutting some chapters short that had more story to tell.

*Ding* turn the page.

People end their lives over far less. People walk around plagued with far more. And yet here I am still floating around in the adult amniotic purgatory waiting to be pushed out. It sucks here, let me out.

At the expense of my own emotional energy, I don't have it in me to go into details about me and my dad's relationship. I don't exactly have the wherewithal to even type this. But I have time. A lot of it. The perks of a nearly 7-month unemployment streak will have a lot of thoughts fermenting. When you finally open the jar, it's potent. You smell the wood age of it.

My aunt told me to not be compelled to do for him in death what he wouldn't do for me in life. Words to stand by and abide; that gave me a comfort about how much energy do I put into settling his affairs. Taking a lot of ownership to research law, investigate, obtain records, and travel to multiple states to put pieces together as far as who this man truly is. Did I even want to know the truth on some things? I searched for a lot of answers, took flights for them, drove hours for them. Came up empty-handed more than I left with closure.

When I went to Virginia his place was unnervingly sterile. Neat. Minimalist. You could have made it a display model to show off to other renters. It was presentable, almost as if no one lived there. A property manager's wet dream. Few items showed wear and tear. I was made aware that he went all out obtaining new items for his new apartment, which he had not even spend a full year in prior to his passing. Lots of Chinese-made times, but they still got the job done. Frugal, yet sparing no expense towards the things that matter - another trait I inherited.

Clearing his place out did not take as long as expected. From the surface, if you were to go through his belongings you would see that there's not a thing that this man could not do that he didn't set his mind to. An autodidact - self taught in the disciplines of music, photography, woodwork, art, language. Methodical in approach, fervent in execution. So much potential and woulda/coulda/shoulda. Unlimited prongs branching out for a direction he could have taken, if it only weren't the one he chose for himself.

On later returns, being in the apartment made me ill. A sort of deep-seeded dread that weighed heavily the moment I stepped foot inside. The earthy, but floral incense permeated through every item. Even papers and all of the notebooks. The furniture, the toiletries,

I went into his safe deposit box, and I had a moment similar to the pinwheel found in the safe at the climax of Inception. I cried about it later. Other found items painted him a color different than the artwork he produced. Many of those items having me come to conflict with "the bigger picture". Even a whole room devoted. Once again, too fatigued to publicly go at lengths.

Choices were made; there was no option.

I flew to Vegas 2 months ago with only a ~24 hour turnaround when I saw my granny in the hospital. I went with the acceptance that this could be the last time I would see her again. She spoke slow and wisely, with her last words to me in the hospital still in the familiar granny cadence, expect slower. Each word laying heavy between breaths. Granny was still in there somewhere. She had all the same granny-isms: the sass, the doey eye-fluttering, heavy-handed compliments, pretending she didn't hear the nonsense you just said to focus on someone else. Diva #1 was still present for roll call.

When she passed, I felt all of the swirling dread all over again. If all the world's a stage, this was as if some house lights got turned off. I went to her house which used to be home base for all family when there were get-togethers. I spent time over there on summers in the 90's, back when I still believed in the sleazy thrill of the Vegas strip. Summers were hot, her pool was cold, and all the kids (cousins included) had something to do. Family reunions were held there and granny did all the legwork for coordinating it, even acting as a travel agent and coordinating payment plans for flights for guests.

Going to house now felt like a hollow husk of the blistering hot and happy summers that I once spent in this house. In the same way that modern movies have lost their color dynamics, this felt just like that. There were no kids running around, no TV, no working pool. No smell of pool chlorine, no sandwiches being prepared, no chips to grab from the pantry. No generational divide of adults being adults in one room and kids being kids in the other. The house itself was adorned with memorabilia and life. Granny lived multiple lives. She seen it and did it all. International travel, pictures with many celebrities. It was like being at a museum, even with the sectioned off part of the house no one was allowed to go in. It was so quiet. And now, the last grandparent has passed out.

I cried again at some point later on.

I will be fine; there is no option but to be.

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