Figured I’d document this in one place, I’ll update this as it goes along rather than subjecting people to it daily. Moral is if you know your body ain’t working right and your doctor doesn’t help quickly, get a new one. I’m not pushing this out via the soch meeds, so if you see this thanks for being a reader of the site.
Subject presenting with a tumor of thymic origin, biopsy inconclusive but treating it as cancer – last update Nov 10 2023.
This started three years ago (2020,) when I attempted to get less expensive life insurance, and my BP was so high the nurse who was doing it said she wasn’t even going to submit the thing and I needed to see a doctor immediately. This took almost three months to get a new PCP and this new guy threw every deadly ass blood pressure medication at me to no effect for a year while I kept telling him this was not working and actively making my life miserable, I’ve had high blood pressure since I was a kid, let’s move on…
At a year+ he finally gave me a referral to a hypertension clinic (which I should have gone to first, but insurance reasons require us to waste each other’s time, money and lives,) and they took one look at me and said they didn’t think I had hypertension they thought I had Cushing’s Syndrome and referred me to an endocrinologist who said based on blood tests she thought it was probably a Thymus or a Pituitary tumor. I was producing enough ACTH (adrenalin) that was causing my elevated blood pressure, at least that was the theory.
It would explain quite a bit.
MRI of my brain revealed nothing (hah hah,) and an IPSS was ordered (and thankfully cancelled,) CT scans revealed a mass in my chest the size of a golf ball that was evidently invading and damaging a main heart vein.
Basically it needs to go. The tumor, not my heart vein.
Referral to thoracic surgeon who agrees, but it’s large enough that it can’t be removed without breaking open my ribcage… womp womp… best option for minimally invasive procedure is to shrink the bugger using chemotherapy and then remove and repair the heart vein.
Now I’ve known this is what probably would have to happen since May if I’m not mistaken. This has been … 20 months from the start to the tumor board meeting and discussing options, but that’s mostly because a PCP that just assumed I was a fat old guy who was hiding drinking and lying about what he eats and how much he exercises. I mean, I guess since I’ve got the problems documented since I was 13 this might sound insane. (I had high BP when I was 13. I had high bp and a gut when I was training for an 80 mile skate, I had high bp a gut and health issues when I walked the entirety of Radnor’s trails without stopping except to tie a shoe.)
Hell, for a brief time I was a fat vegan (I’ve been a vegetarian since I was 11,) and it’s always been odd. I’ve been a fat old man since I was 11.
I talked to the chemotherapist a month or so back. The earliest I could get a biopsy was last Monday. I sat waiting for this and was quite frankly a tad terrified of what anesthesia was going to do to me. Trust me, you own this body your fears are strange reactions to things/medications. She didn’t have much to say because she didn’t have much to work with not knowing what she was facing other than a thing in my chest. I understood, but this was 2-3 hours of my life that could have been done via a text message.
I had nine needles in my chest on Monday. I was awake for the entire thing. They’d given me some pills and an IV and evidently these had the results of making everyone around me amused by my responses… either that or they were so bored of dealing with high patients they were playing along. Probably the latter.
Had a square patch shaved on my chest, and some sort of grate placed upon it and then numbers written on it or my chest as this was done with me in a CT scanner and then the second largest needles I have ever seen were placed right into my chest just slightly more toward my right arm than my heart was.
As noted the results were inconclusive, but that was an interesting day. The only thing I think we ended up getting from that procedure besides a bill was the belief that it is growing very slowly although uptake was high on the CT scan.
During all this the chemotherapist found a chest x-ray I had back when I was having an extreme allergy attack in 2016 and a chest x-ray I had from a walk-in clinic and said “that smudgy area in 2016 is probably this smudgy area in 2023, so it’s growing but slowly.”
Friday I get a CT scan, again. These thankfully are larger than MRIs, which freak me the eff out… and after that it’s Chemo Tuesday, Wednesday, and Thursday. Rinse, repeat three weeks later.
I asked the chemotherapist a few questions… it’s expected that I am going to survive this, the expected endgame is the surgical removal of the tumor and repairing of whatever was invaded in that heart vein. I can sit and watch my phone while treatment goes on, supposedly can work, although I’ve been to Vanderbilt before and their guest Wi-Fi is iffy on a good day and cell signals don’t seem to make it anywhere.
Going to use any streaming service that allows me to download a couple of episodes and hang out on a chemo drip doing that I guess… I suspect the internet will be denied by bricks.
It’s interesting what you discover about yourself when faced with existential terror. It’s not something I’ve lived with or felt since I was a little kid. There’s like a tangible pit in my chest of terror right where the ball of tumor is, but you go on.
Along the way I’ve also had a 12 wire ECG which show abnormal heart issues on a 24 year old medical device that afib searching watches don’t get. Eh, no biggie but really do not expect your watch to do anything.
It’s November 3, 2023. Realized yesterday that 20 years ago was the day my mother completed chemotherapy. I’ll be starting in a couple of days. Different hospital, same presenting circumstances with being unable to walk previously. I thought it was a tick bite or such… not so lucky. Oof… they told her they thought she’d probably live another decade into her 70’s. She died December 7th.
They never could give me an answer what she died of. Official cause was breast cancer but it looked like something broke in her shortly after chemo.
I’ve had another CT scan… I had a 12:30 appointment with a 12:15 arrival time. Showed up at 11:50 because I did not know exactly where parking was going to be and was in and out and at home by 12:15. That’s new.
One of the things I got from that is a tech made a comment that it’s the left brachiocephalic vein, so there’s that. Less frightening than an artery but still scary. Invasion has caused narrowing of the vein, which is detectable on a 12-wire ECG.
Just picked up my fun four-pack of medications for this journey. Dexamethasone (inflammation,) Prochlorperazine (Antipsychotic and Antiemetic), Ondansetron (nausea), Olanzapine (evidently used to improve apatite). Does worry me a bit that two of these are brain chemical changing medications. I guess I’ll ask the chemotherapist tomorrow if it’s required. I do not do well with brain meds… my brain likes to be depressed for some reason.
Walked out the door with 30 minutes to be at the hospital at check in time. It’s a 12 minute drive. I was late due to a car crash, a closed down lane, and then evidently everyone was vulturing in the parking garage. Not too late.
Had some blood drawn, and met with the chemotherapist who is now saying three rounds of chemo, but after 2 we’ll CT scan. And then I went on the drip.
My phone had decided to charge to 80% on the charger and then stop. It did not start up again any time near when I generally get up so when I had left it was down to 54% and I needed it for 8ish hours. Brought one of my chargers though.
I didn’t get a lot of anything done… people kept coming in and checking on me so I watched some youtube shorts and called it a day.
I got home at 6 or 7 last night, ate something my 10yo had prepared called Burrito Pie… it’s generally good and this was no exception except she’d made some substitutions due to not being able to locate a coulple of things. It was richer than I wanted to risk, but I ate it anyway.
I said something, went up the stairs, woke up at 3am to pee more of the chemo drugs out of me, and at 6:30 I was woken by the alarm
Day 2 (morning)
After about 10 hours in bed I got up. It was not good, I was shaking and clumsy. Got my wife up to help with kids because I didn’t think I was going to be able to handle it. Took two meds I was supposed to take today, and after about 45 minutes I felt significantly better.
I’ve been at work about 2 hours now and I think I’m done. They can call and email me but falling asleep at the keyboard. Everything that physically needs to happen other than replacing a camera I’m going to have to climb a ladder for is done, so on first day back I managed to handle it.
Going to sleep for a couple of hours and go for second dose of chemo and then probably sleep some more. Oof. Right now it’s just the sleepies… but it’s bored sleeps.
Day 2 (afternoon)
I was informed by the nurse that I was so sleepy because I took the night medication in the daytime. Look on the little label and sure enough it says take it at night. Woops. I am told no harm there other than that I was going to be pretty tired.
I am taking 5-6 pills at infusion time, trying to keep up with all the medicines put in me, and carrying a bag with two additional medications I will need in the event I get sick to my stomach… made a blunder on one… oh well…
New nurse failed at putting an IV in on my right arm and did it pretty badly… moved to my left and then when she went to hook up the chemo bag the click in was busted and my meds had to be taken back to the pharmacy because they wouldn’t drip.
Day two’s drip was about a two hour endeavor. We left the line in (which you’ll see in my E30 scooter unboxing and assembly) but Day 3 will be the last day of this round so I’m not terribly worried.
This was a day… it happened… I have photos to remember it by and a short little Pocketables excursion, but after I left the drip drop place and got home I took the nighttime medicine and that was that… I think I went to bed at 6-7pm. Woke up at 12:31pm day 4.
Day 4 has been where the thing is kicking me. This was expected that days 4-7 would be the worst. I am technically done with my first round of chemo. Two more are scheduled but only one more may be required. That’s the longshot hope. Realistically I suspect it will be in the 4-6 rounds before this is small enough to be removed safely.
I am not happy, but that is to be expected.
Day 4 has run into 5
Off of all medications, although I have two potent anti-nausea drugs it looks like the only stomach distress so far is that cisplatin shut my stomach down / poops not happening easily. Extremely depressing as I feel insanely bloated but meh. Starting to feel like maybe the right course of action was to break open my ribcage and let them go at it.
Have 2 more rounds of chemo scheduled. I am told it will get harder each time as they’re going to push as hard as possible to shrink the tumor.
Oh yeah, besides being in a pissy mood I missed a performance by my 10 yeah old because I was too tired to even. That was back on day 3 and I am still annoyed with it.
Speaking of pissy, I can smell this stuff in me… that’s the freaky part. I smell the drugs every time I pee. Seven days until they’re out I’m told… more or less.
Day 6 made a new Nashville Goal!
So, other than feeling kind of down it’s been manageable in round 1. I know it will get worse but until yesterday (Day 6) I never felt exceptionally nauseated.
Dropped off my kiddos at school, I was coming home because I was not feeling right and I can work from home most of the time so why the hell not? I have a pretty good setup and I have people on site that can turn things off and on again if that is needed.
I’d dropped my oldest kiddo off and I was tasting something… sort of tasted like band aid meets warm something… I can’t explain, but I believe it’s the cisplatin. My mouth started watering unpleasantly and I felt like I was going to vomit so I pulled into the only stop I had before the interstate and not so much vomited as released enough spit from my mouth to fill half a cup in the adjoining parking lot of a Hustler Hollywood (may not be theirs).
I drove back home drinking some water I had in a bottle in case of emergencies and decided when I got home I was going to take the first of the optional medication.
Now, when I think “anti-nausea” I think “makes not sick” – I was thinking I was getting some stomach soothing medication. I took one of the two at 10 something am and hello 7:12pm. That was not the medicine I needed although I guess I did sleep through a stomach ache. Further research while I’m not about to puke indicates it’s pretty much quad strength Xanax and I’m reading now that should have been noted as the stronger of the two medications they gave me.
So yeah, I was awake like 4 hours on Day 6.
Finally feel like I’m not a springboard for poop that’s afraid of diving. Keep that as you will. The chemo doctor called me and reminded me that if I hit 101F I need to go to the hospital. Meanwhile my 8yo was home sick coughing on me for two days straight. I joyously recounted having to vomit in a porn store parking lot and I suspect she thinks I was there anyway rather than it being the only parking lot available. May have to clarify that with her next time there are needles pointed at me.
Day 8 I felt human again, and not really all here but closer. Skin kind of hurts… like 8% feels like I’ve been sanding something.
After a pretty good couple of days I felt like I was rotting and tripping… I’m a bit unsure if I had food poisoning, or if this was a chemo side effect. I felt a tad unease to my stomach and when I looked in a rearview mirror in my car like I was seeing trippy too much shadow vision. I felt vaguely like I had ingested psychedelics and also that something was rotting.
I am not on any medications and have not been since day 5… things were just weird. I was seeing shadows that were not there, stomach was not happy, and at 8:20pm a wave up unimaginable freezing hit me and I was under 3 blankets until I could warm up. My body temp was fine, no fever, no clue what it was.
I can feel the tumor now. My assumption is that it’s swelling under an attack. I feel pain in my chest that it highly localized near my clavicle / right where it has sat not being felt for years. Feh…
I had food poisoning symptoms exactly like this once… maybe I just broke a brain during this chemo…
Yesterday was great. I felt human, except I had a headache. Today started great (I’m writing this is 9:33am so this may give you an indication it didn’t last long) – I started chemo Tuesday November 7th, it’s Tuesday November 21st now and I’m at work and I’m just shedding.
My face was itchy, I went to scratch and something like 5 beard hairs came loose. The shedding is something I can physically feel and about every couple of minutes there’s a hair on my keyboard that was not there a minute ago.
Day 16 – lost the hair
Round 2 happened, I was a little too beat to mention it
I guess that means we’re at day 25 or so now… chemo has wiped my red blood cell count which means for the first time in my life I’m anemic and man I hate stairs right now.
Spent several days sleeping or doing the bare minimum but so far other than feeling vaguely sickish for a month that’s where I’m at…
Dec 5 – 2023
I’ve come to the realization that most people have a significantly higher faith in medical procedures than I do. For this you’d probably have to understand I had two doctors who didn’t do anything useful for most of my life and threw medicine that robbed me of months of my life because they thought my issues were depression (no dude, I was choking to death as a sleep study found out.)
Throw in the doc who gave me antibiotics until I got tinnitus because he couldn’t diagnose an allergy, and you got my world view of modern medicine.
Dec 6 – 2023
Twenty years ago today was my mom’s last full day alive. I mentioned above she’d had chemo and supposedly was fine and then poof.
I look at her photos, and my now-bald head, just feels like a cheap cosmic Nelson laugh.
My chest hurts a lot now. It’s hurting where the tumor is located and not my heart. I assume that’s a good thing. I know the tumor swelled when I started chemo, that was the first time I ever felt it. During all of this I never felt anything other than tired as a symptom of the tumor. The chemo has hit me like a sick wave. I’m anemic last I checked and I’m starting to look a little ghostly.
I mean, I’m a pale nerd to begin with but now I’m a pale nerd with less muscle, white fat, and evidently my epidermis decided it was time to shed so full body dandruff for like two days that was freaking weird.
Dec 15 – 2023
After about a week of complete fatigue I got my CT scan back and absolutely no change from the start…. that’s lovely. I’ve lost all my hair and spent 6 weeks exhausted and sick and no change.
December 19th – 2023
Chemotherapist has paused chemo. Today would have been the start of round 3 but with absolutely no change in the tumor they’re not going to continue with the Cisplatin route. Chemotherapist has kicked it back to the thoracic surgeon who I guess will take it before the tumor board again and decide what the next course of action is. Maybe radiation, maybe just cracking my ribs open and doing a fairly invasive tumor removal and heart vein repair. Oofs.
December 27th – 2023
I tossed the endocrinologist who had theorized this tumor existed many a moon ago and asked her if she had been consulted and brought her up to speed. I think she had not, I did not get an answer but did get a couple of tests ordered that tend to indicate the chemo may have knocked down the tumor’s ability to create excess ACTH. I’m not really certain what can be done with that information.
Got a call from the scheduling department of the thoracic surgeon yesterday where I was told that the scheduling department was not ignoring me they just were on vacation and would be getting back to me next week. I said ok.
About two hours later I got a call from the same person and was told I’m scheduled for next Friday to talk with the surgeon about my options.
January 4, 2024
Have started to recover from the chemotherapy that turned out to be useless. I have very odd hair growth at the moment – sort of like inverse male pattern baldness with hair attempting to grow up top but the sides are hairless. Keeping it shaved for the moment.
Suspecting my 10yo may be having an existential crisis triggered by this, but can’t tell the difference between becoming ten and facing existential realization and potential terror that I might die from surgery. Fun times. What should have been a somewhat restful month recovering from that poison has not been in the least, although everyone does accept that occasionally I am going to just wander off and plonk down and take a nap.
January 7, 2024
Been an interesting few days. Surgery is scheduled to take this out. Me and the surgeon agreed on a date, I started lining up people for that date, checked the scheduling portal and it’s not that date. Confidence inspiring.
Surgeon told me to expect three days in the hospital, three weeks of major recovery, three months to be better. This seems a little fast from what I consider pretty major surgery.
Also says he does expect me to die, but not from complications with this surgery or anything related to this tumor, and not soon. Which is reassuring for most I guess.
The only thing I have reassuring is when I asked him a question about something that I considered major he gave me a look like I give people asking me if swapping out video cards is going to explode their computer… the confidence / wut? stare.
Logically I’m pretty sure I’m going to be ok, but that gut instinct where every doctor I’ve ever met has messed up in diagnosis, dosing, etc has me worried (lemme tell you the tale sometime of the dumbass walk-in-clinic that put me on iron replacement therapy sometime and got the amount way way way wrong).